Medical Error Interviews

Tina Gomes: Dentists on Probation: What You Don't Know Can Harm or Kill You.

Singer, songwriter and talent manager Tina Gomes of California needed a dentist for a straightforward procedure. She searched for Board Certified dentists and made an appointment. What she didn’t know -- because the Dental Board failed to inform the public -- was that the dentist had harmed previous patients and was on probation.

Tina would only find all of this out after spending 10s of 1000s of dollars and enduring years of needless headaches, jaw pain, infections, ill health and inability to chew solid food. As you will hear, Tina was betrayed not only by the dentist, but the Dental Board and the Attorney General as they chose their own profits over her, and the public’s, safety.

Tina learned the hard way that dentists can take sketchy continuing education courses - like a 6 hour course on a weekend on anaesthesia. Recently a patient died in the dental chair due to anaesthesia complications. These dentists start practicing these ‘procedures’ on unwitting patients -- essentially making them guinea pigs, these ‘procedures’ often require ongoing fixes and devices, turning dental clients into perpetual patients.

Tina discovered that the dentistry industry is not about accountability, or oversight, or patient safety -- dentistry is about increasing profits for dentists, Dental Boards, and Attorney Generals on the backs of - and out of the pockets of - patients.

SHOW NOTES

0:05:00	Tina grew up Vancouver, Canada - wonderful parents, they were immigrants from Portugal - provided comfortable childhood - there are a lot of people who did not have good parents like Tina so she's grateful
0:06:00	Tina has 2 siblings, both sisters, the 3 of them were born 1 year apart - but one sister died in a car accident the night of her high school graduation party - Tina's older sister lives in Alberta, Canada
0:07:00	Tina moved to California when she was offered a record deal by Richard Perry - people in the inustry know his reputation - Tina's father was a phenomenal opera singer
0:08:00	A lot of music in their house - in Vancouver, her boyfriend was in a rock band and when Tina sang he said she should be performing - Tina wanted to be a songwriter, not singer - song writing is a solitary endeavour
0:09:00	So Tina started singing and they covered other band's hits and played in a lot rock clubs and was noticed by Rae Dawn Chong, her father is Tommy Chong, and he's part of the iconic Cheech and Chong comedy duo - Rae Dawn 'discovered' Tina, and said they'd form a band with Rae Dawn's cousin Lavina Fox and go to Los Angeles and sign a record deal with Warner Bros
0:10:00	Tina started working with Richard Perry and staying at his home, formerly Elizabeth Taylor's home - but Rae Dawn left the group for a movie deal
0:11:00	But Tina had met other singer / songwriters who wanted to work with Tina - she also met the man who would later become her husband, and he introduced her to more producers - Tina also met Jesse Powell and his family and became close friends - Jesse produced a song with Damon Thomas who is Kim Kardashian's ex-husband
0:12:00	Tina knew she didn't want to be an on stage singer, she wanted to help Jesse because she thought he was the greatest talent - so Tina decided to manage Jesse and get him a record deal and that brought joy to Tina's life
0:13:00	Tina managed his career to be #1 on Billboard and she found more talent to manage - so fulfilling to be around such talent - Tina felt blessed to be doing the work with those talented people
0:14:00	That's what Tina did for years, while also struggling with dental issues that started in 1992 - one day Tina and her husband went to a Malibu restaurant and one of her front crowns broke off - they went home and searched for a board certified dentist
0:15:00	They contacted a dentist to see if he could see Tina immediately just fix her crown - Sarah has to compose herself and explains that PTSD is impacting her ability to tell what happened...things she's trying to forget
0:16:00	Tina put her trust in the dentist, and so her husband trusted the dentist - the dentist made a recommendation to replace her sorrounding teeth so everything matched - biggest mistaked Tina made - he upsold Tina on the dental work he'd do - but the crown he made kept falling out, so he made a bridge, but that started damaging the neighbouring teeth, and so he gave Tina a bigger bridge
0:17:00	Tina was working and traveling a lot representing her clients, but she never felt like a normal person with crowns falling out - she returned to the dentist and he's blame Tina "Are you chewing rocks?"
0:18:00	The work he did would be okay for a short while, but then Tina had to revert to drinking smoothies, soup, foods she didn't have to chew, but they kept falling out and she kept returning to him for repairs - but that resulted in infection and everything would have to come off her teeth
0:19:00	With Tina's job/travel demands, it seemed easiest to keep seeing him - Tina compromised and adjusted to the smile he created - as all dentists expect patients do - they want to take your mouth, recreate it, profit it from it, and say it is better for you - that's the way they operate, especially since the continuing education courses are centered around marketing
0:20:00	In California, a dentist can take a 6 hour course on a weekend and start using anaesthesia on their patients, and they don't even have liability insurance - It is not about the patients care or safety - they take your natural teeth and recreate what they say is a more healthy smile with manfactured teetch - that compromises how the body heals naturally - but it is the dentist's mouth at that point, relying on some continuing education course
0:21:00	This went on for 12 years - Tina become good friends with the dental assistant and her family, the dentist and his family because Tina spent so much time in the dental chair with the dentist
0:22:00	Tina was essentially his experimental subject of a continuing education course, a billion dollar industry - Tina found out the dentist had been lying when she sued him - Tina was increcibly sick and in a lot of pain - covering her mouth in public because she was embarassed
0:23:00	Tina had invested 10s of 1000s of dollars with the dentist she trusted - Tina's husband didn't trust him and fought with the dentist - Tina just wanted to be healthy but her mouth was infected - but the dentist touted himself and bragged about his awards and advanced treatment
0:24:00	He positioned himself above all other dentists - he was concerned Tina's bite was off, but it wasn't off - Tina had moved from another country to succeed in the music industry and her 'bite' never bothered her until he got into her mouth - he only had to take care of her teeth, she didn't have any when he was finished
0:25:00	Tina was so sick, her weight got dangerously low and she was hospitalized - for months she lived on liquid foods - Tina loved salads but couldn't eat anything crunchy any more - she kept going to the gym to deal with the anxiety
0:26:00	When the TMJ gets out of place, the body tries to adjust and people grind their teeth - Tina went through countless crowns, dental pieces, etc - her dental record looks like an encyclopedia it is so lengthy - she knows she'll never be able to chew food again
0:27:00	Because she grinded her teeth during sleep, the crowns, bridges etc would fall off and she would call him in the morning begging him to see her immediately so she could go to meetings - when she sued him, he delayed handing over her dental records for 3 months, and told the Dental Board he lost all her records in a computer crash
0:28:00	Tina started to research the history of her dentist, a man she completely trusted with her health - but found out there are 100s of victims just in the state of California
0:29:00	Even though the Dental Board deems a dentist incompetent in court documents, they can continue to practice dentistry due to an 'apparatus of compromise' deal with the Dental Board as long as they pay the Attorney General fees, including investigative fees to the Dental Board
0:30:00	They all start collecting these investigative fees once the decide they will investigate a complaint, it is a huge money mill
0:31:00	If the investigators and Dental Boad decide they are going to file a Accusation with the Attorney General - Tina's dentist was already under investigation for harming several patients doing the same procedure he did to Tina - and to a surgery she never agreed to - but none of his patients were informed about the Investigation or Accusation
0:32:00	The Dental Board was so incompetent they never posted his probationary status on their website, which is their duty and they promised to tax payers that pay into the fund that allows them to sit on the Board and decide how to protect patients - it is a scam
0:33:00	They collectively made money by keeping his Investigation a secret and are still profiting today - there is not one patient in that dentist's office right now that know about his history, or what he did to Tina, and he's still practicing
0:34:00	The Dental Board spends more time concealing harmful patterns in concert with the Attorney General's office - they don't make a lot of money off of good dentists, they make a lot of money keeping bad dentists licensed so they pay high fees - as dental patients, we are investing in our health with high risk dentists because there is very little over sight, they are self regulated
0:35:00	Tina won her lawsuit, but uses air quotes around 'won' - because her lawyer coached her to accept a low figure settlement
0:36:00	Tina is not happy about the settlement, she feels 'raped' - there is a $250,000 cap on settlements / awards - the reality is that Tina is in just as much pain today as when she walked into the dentist's office and faces a 5th surgery to repoir his mess
9:37:00	The most important thing Tina can do now, because her loss is something she has to face every day, but is managing it well, because there was a time when things were more difficult - Tina wants to be there to give guidance, because there was no one for her - the Dental Board and Attorney General work in concert to make sure the patterns of harm by dentists is not available at the place and time of treatment
0:38:00	Tina's Bill Proposal says that patients must be informed at the place and time of treatment if the dentist is on probation - Tina's dentist was on probation and that was a huge risk to her health and finances
0:39:00	Both the Dental Board and Attorney General are making money on probation dentists, so patient safety is not a priority - every Dental Board in every state advertises that if there is a conditional status of a dentist, it must be posted on the website - but ther is no gaurantee that will happen, Tina is living proof
0:40:00	That is another way they are protecting their own interests, not the patient - but they've turned the mouth into marketing options - including 'neuromuscular dentistry' which is just the worse - Tina is working with a patient now with a beautiful smile who was convinced her bite was off
0:41:00	There are no reasons to charge her to come in to make adjustements to her perfectly healthy teeth - but they convinced her that her bite was off and she would be more comfortable and beautiful after the procedure, less pain, sleep better, breath better
0:42:00	Doctors and dentists can sell you almost anything, they are into upselling their products and services because it helps their business, not your teeth - in 2010 the Senate Oversight Hearing Committe asked Tina to come and speak at the sunset review of the Dental Board, but it was a huge sham
0:43:00	They were eating cake while patients testified about serious dental harm, like with anaesthesia and the patient died in the dental chair - it was the worse thing Tina saw -- but Tina has former Dental Board members helping her, they want her to expose the truth - and telling every body patients are not safe - and that is not fair to the really good dentists
0:44:00	Tina doesn't believe that probationary dentists who pay big fees to the Dental Board and Attorney General will change their harmful practices - the patients they harmed were assaulted - and continuing education courses are marketed to get perpetual patients to make more money
0:45:00	It will also fund the research labs, they are a billion dollar industry - Tina says that anyone with healthy teeth should never get cosmetic enhancement - advertising on ABC (tv channel) and the ADA permit its promotion - the Attorney General is responsible for patient safety, they should be stepping in to stop the influence through tv media
0:46:00	They are motivating dentists by dollars - Congress is motivated by big pharma dollars - money is the priority - when you're choosing which dentist you're going to go see, you're really choosing which risk - how much are you willing to lose? - some Dentists offer 'care credit', a credit card to pay for dental work
0:47:00	The patient may take the credit card for $5000 worth of work, but the dentist gets busy on $10,000 worth of work - the dentists are not caring for your teeth, they are caring for their dental device
0:48:00	The former West Virginia Attorney General, who is the World Health Organziation's President for Mercury Free Dentistry wrote Tina's Bill - but Tina feels like a failure because there is every effort to ensure a patient doesn't know their dentist is on probation
0:49:00	A Bill was recently passed that only applied to doctors, not dentists, and the Bill required doctors to tell their patients if they were on probation for a 'serious crime' like sexual misconduct - but if you go to a dentist and he removes all your teeth, causes constant pain and sickness because you can't chew food, that's a pretty serious crime - but they kept dentists out of the law
0:50:00	Tina feels like a failure because even though she had great support from highly respected people with influence in government, but here we still are today
0:51:00	Tina doesn't feel like she's up against the 'dental machine' but is up against crooks - it us uncivilized for a government agency to tell the public they are protecting them - but cover up and don't inform patients - so its not a big machine, it is a few people on Dental Boards in each state - and they profit from dentists on probation
0:52:00	These few board members are charged with the duty to protect patients - the goverment isn't bad, it is made up of bad people
0:53:00	This is how a bill gets passed that protects the bad secrets - using tax payers dollars - we're supposed to trust the government - in spite of Tina's great efforts legally and via media...
0:54:00	...the government flagrantly ignores their duty to protect the public - the ADA (American Dental Association) advertises they protect patients, that is false advertising
0:55:00	Tina was interviewd by Cecilia Vega of the tv news show 20/20 - but the interview was 'shelved' - Tina hopes they will air it one day
0:56:00	One of the producers called Tina to tell her it wouldn't be aired - Tina asked 'what happened?' - but they didn't give any type of reason - but it was at the same time Governor Jerry Brown was trying to pass a bill for adequate notification about doctors on probation, but it didn't include dentists
0:57:00	Tina did receive an apology from her Dental Board for not posting her dentist's probation status on their website and he had harmed several patients before Tina - a lot of money is made by the Dental Board, Attorney General's office, Probation Monitor - in California they don't have to have liability insurance
0:58:00	The cost of surgery to repair the former dentist's mess was $50,000 - but Tina didn't trust dentists, didn't want to go through another surgery, but only weighed 89 pounds
0:59:00	Tina is not giving up on Tina's Bill - she has so many people contact her for help and advice - and she can't turn her back on them either - Tina thinks she may have another surgery - she tried bone grafting twice, they failed - a lot of bone removed, teeth all removed - she was robbed of all those years of health, and to have a health senior life
1:00:00	Tina grinds her teeth at night and that causes headaches every day, a lot swelling - Tina avoids drugs but had to take acetominophen for a few months because she had adhesive encapsulitis with bilateral tendonopathy - the tendons from both shoulders limits Tina' mobility, but she's in physio therapy for that - but the pain goes up into the TMJ (jaw), pain she's had for all these decades
1:01:00	The pain goes down to her chin, because it is all connected - the next surgery will the last because she doesn't have enough bone left for implants - the nerves in her face are exposed and if those nerves were cut she'd loose use of her tongue, drool, impaired speech
1:02:00	A lot of victims don't like to eat in public because of embarrassment - even a simple kiss with someone you love is gone - the whole time Tina is speaking to me she says she feels like she looks like a monster
1:03:00	It is unfair and uncivilized to permit Dental Boards to license someone they would never put their children in that dental chair - Tina knows one woman who is now bed ridden - her parents have to help her with basic functioning - Tina helped her get an attorney
1:04:00	Tina finds reading and going to the beach and ocean therapeutic - she writes her problems in the sand and then a wave comes and washes it away
1:05:00	You can connect with Tina on Facebook at Tina's Bill Proposal - she posts substantive info there that Dental Boards and the ADA don't
1:06:00	If lettuce is making people sick, great strides are made to protect people, but if its dental, it is covered up and kept quiet

Connect with Tina Gomes - Tina's Bill Proposal on Facebook

 

Sarah Price Hancock interview (part 3): Surviving Shock Treatment (ECT) and Psychiatric Medications

It is hard to know where to start in describing what Sarah shares in part 3 of our interview. Sarah imparts so much info about things that helped her regain health - and may help you, and things that hurt her health- and may hurt you.

Sarah tells how a correct diagnosis and stopping inappropriate psych meds, resulted in losing 100+ pounds and get back to her high school weight.

She tells about how when she started to treat her liver, even though her liver tests were ‘normal’, her health and quality of life improved.

Perhaps most importantly, Sarah tells about finding a doctor who approaches psychiatric issues as an autoimmune and toxicity problem, and addresses it with appropriate nutrient support. 

This is what stopped the voices in her head that were telling her to kill herself 24/7. 

Sarah also tells how when she got a kidney infection and needed antibiotics, the psychosis and voices in her head returned. What did the psychiatrist want to do? Give her psych meds of course. Every symptom looks like a nail if your only approach is to use the hammer of psych meds.

Sarah says we need to encourage psychiatry to get back to their roots of orthomolecular approach - trauma cannot be treated with ECT or psych meds - research shows trauma causes physiological changes to the gut biome - and there are more neurotransmitters in the gut then in the brain.

And that is why Sarah has started an international petition to create standards for ECT to make patients safer….and not experience the devastating side effects Sarah endures.

SHOW NOTES:

 

0:06:00	One of the pictures Sarah sent, she was much larger - her underlying illness of hepatic encephalopathy, and treatment caused metabolic syndrome from 5 classes of pyschiatric meds - at her her heaviest, Sarah weighed 250 pounds - once she got off those medications and starting eating micronutrition she lost some weight - when she was finally diagnosed with helpatic encephalopathy and the correctly addressed her fungal infection, she has steadily lost weight - she has dropped more than 100 pounds - she's now at 135 pounds, same she weighed in high school
0:07:00	They didn't realize she had fungal edema and what she was eating was also putting stress on her liver, even though liver tests showed normal, when she started treating her liver, her health vastly improved - but Sarah had been living with overgrowth of candidiasis from over prescribed antibiotics - so antifungal meds and herbal protocal helped
0:08:00	Her doctor's website is CandidaMD.com - he describes how over prescribed antibiotics can cause fatigue, auto immune, and other issues - and approaches psychiatric issues as an autoimmune problem, from an orthomolecular view, looking at toxicity issues and a variety of things
0:09:00	Sarah started see this doctor in January 2017 - and started his diet outlined in his book "An Extraordinary Power to Heal" by Bruce Semon - Sarah was on all 5 steps of the protocol at once - it is usually an elimination approach, but since Sarah was so sick, her doctor recommend she do all 5 steps at once - but Sarah had a kidney infection and was on 3 rounds of antibiotics and even though she'd been without psychosis for 5 years, by the 2nd dose of antibiotics she was in full blown psychosis - her psychiatrist wanted to put Sarah back on psych meds, but Sarah pointed out the psychosis manifested with the antibiotics
0:10:00	Sarah then met the candida doctor, Dr Semon, and he said it was candiadis and she laughed at the idea it was causing her problems - she didn't know there were 20 illnesses that could cause her symptoms - Sarah thought it was all a dopamine issue, so her eyes were really opened - Sarah has seen this doctor turn people's health around - Sarah was catatonic from the antibiotics for the kidney infection, and Dr Semon immediately recognized and gave Sarah to big pushes of IV glutathione
0:11:00	Sarah went from asking the nurse to give Sarah her brain back, she thought the nurse had put it in a jar on the shelf and that was why Sarah couldn't move her arms and her body - an hour later after the IV glutathiones, Sarah was ready to go to work
0:12:00	Previously, Sarah had gnarly responses to some medications, she'd have akathesia where she couldn't stop pacing and felt like fire ants coursing through her brains, and extreme agitation and behavior like screaming at her colleagues - but an IV of ALA (alpha lipoic acid) would calm Sarah's body quickly and relieve her of psychiatric issues
0:13:00	Compared to how her body slowly responded to pysch meds, an orthomolecular approach was so much quicker - whereas they use ECT when people are depressed, catatonic, agitated, etc because it is a 'rapid response' treatment, Dr Semon says give them an IV of glutathione or ALA (depending on symptoms) - so its faster than ECT without the brain damage
0:14:00	We need to encourage psychiatry to get back to their roots of orthomolecular approach - trauma cannot be treated with ECT or psych meds - research shows trauma causes physiological changes to the gut biome - the are more neurotranmitters in the gut then in the brain
0:15:00	The myriad of problems associated with dietary, hormonal, toxicity, trauma can be addressed orthomolecularly - Sarah says she cannot take ALA orally as it causes gnarly symptoms - but it is a precursor for glutathione - when Sarah takes ALA via IV, it has a nice calming effect
0:16:00	Sarah has seen patiens come in with mixed mania, so all the symtpoms of depression and mania, agitation, impulsivity, irritation etc and hook them up to IV of ALA, and they would calm down - its important to eat before ALA IV for blood sugar reasons - she would watch their brain calm and rest
0:17:00	A lot of doctors don't know what they don't know, and they are focused on one paradigm and everything they look at looks like a nail because they have a hammer - in reality, sustainable healing uses an entire wellness toolbox to create personal medicine - recognizing what helps and gathering those activities can mitigate suffering
0:18:00	Sarah does recognize the need for medications - she had psychiatric symptoms, and psych meds made her worse, but she did need anti fungal meds to relieve her psych symptoms - there are so many ways we can get sick - they had a client with a son with ADD, ADHD, behavioral problems
0:19:00	The son's bedroom was beside the bathroom, and when they opened up the wall, it was full of black mold - the entire family had been impacted, the father was being treated for 'treatment resistance' depression and had ECT for it - but it was mold mycotoxins in their home - the son was in his 20s, and they don't know how long he'd been exposed to black mold - the family had to move for their health
0:20:00	There are so many things we don't know about - mold is insidious - people with mold exposure don't realize they have to start from scratch, they can't bring clothing etc to a new home
0:21:00	Mold only needs warmth and moisture to grow, so you can't bring mold spores to a new home without eventually having problems again - Orthomolecular Medicine (OM) looks at micronutrition, phospholipids, minerals, vitamins, tissue and cell structure and addresses those insufficiencies and aims for balance
0:22:00	An interesting book by Dr Carl Pfieffer at Princeton's Brain and Bio Clinic - its a 100 page book and he outlines 27 different causes of psychosis /schizophrenia symptoms, and only 1 of those can be addressed with anti-psychotic meds
0:23:00	We need to address the underlying cause of their symptoms - how symptoms manifest is dependent on individual genetics - for 1 person is toxicity may manifest ADHD or arthritis - it depends on the person's unique vulnerabilities - but if you can address the underlying cause, sustainable healing can be achieved
0:24:00	Sarah cycled through 37 different combinations of pysch meds before they found a combo that 'worked' - even then she was still hearing voices, seeing things, mood problems, just not as extreme as previously - whereas with addressing the underlying issue will be life enhancing as the symptoms will go away and there is real recovery, if you're not damaged by other treatments
0:25:00	In Westen medicine they don't recognize the up or down regulation by the meds, so when the meds are removed, the 'brace' is removed
0:26:00	You wouldn't wear a brace or a cast for longer than you needed to - when the meds are removed or changed over night, they expect the patient's nervous system to immediately re-regulate
0:27:00	Patients may think their symptoms are returning, but what's really happening is the removal of meds has a paradoxical effect - there is little research of the longitudinal effects of antidepressants or antipsychotics - so removal of meds causes withdrawal syndrome
0:28:00	Sarah worked with Dr John Humiston (CandidaMD.com) noticed with her candida overgrowth, that if they supported her body with nutrients, she could negate the withdrawal symptoms - it makes sense if you think of the CNS as being damaged, but then giving it proper support to function and heal
0:29:00	Sarah witnessed a lot of people going through treatment - it is called neuro-recover infusion of NAD with amino acids - there are 5 different formulations of neuro-recover - the QEEG scans of before and after neuro-recover were dramatic
0:30:00	The withdrawal symptoms people experienced were reduced by 60 - 70% --- Sarah had been in protracted withdrawal sydrome for 2 years before she tried neuro-recover, and immediately it turned off her akathesia, and within days she started sleeping again, instead of 30 minutes at a time - she was able to sleep for 4 hours, and as treatment progressed, Sarah got 8 - 9 hours of sleep at night
0:31:00	When the body gets the nutrition is needs, it can re-find its homeostasis - Scott mentions his interview with Daryl Brown about 'post SSRI sexual dysfunction' (PSSD)
0:32:00	Sarah says she also experienced PSSD but the neuro recover infusion formulation solved that - and Sarah began experiencing a sex life she never knew was possible
0:33:00	Sarah symtpoms are spiralling down - she recently lost windows of good health when sitting up - it looks like she's going to be living a life in a reclined position, which doesn't leave her with many options to get out and enjoy life - it limits what she can do with her family, what she can do in life - but she's tapped into the disability community for support - at this point, people with electrical injury do not have rehab resources
0:34:00	Sarah is working to change that, and is hoping to do it before she's unable to - (Sarah's petition for ECT regulation and standardization) - Sarah is looking into CCI, but there are not sure what to do about the brainstem injuries
0:35:00	Sarah says brainstem auditory evoked potential testing is important for electrical injury - they overstimulate auditorily and see how your brain responds - also show you moving patterns and see how your brain responds
0:36:00	VNG (videonystagmography) testing - cameras measure how pupils react to light, movement, tracking - they can detect brain stem and central nervous system (CNS) issues
0:37:00	When Sarah had problems with one side of her face, her eyelid drooping - she asks 'was that a myloclonic seizure? We have to look at these issues for people with history of electrical injury or ECT - autopsies in animals and humans connect with symptoms seen in people - cranial nerve damage affecting speech, gait, etc
0:38:00	Having evoked potential testing will help determine problems - having a 3T MRI (and eventually 7T) with special sequencing - SWI for microhemorhaging - D3T MRI to see how things are moving
0:39:00	Also MRA sequencing on MRI shows blood brain barrier - research showed that 7 of 12 cats were not damaged by ECT - but they didn't say that the other 5 cats died and their blood brain barrier did not reseal
0:40:00	So how many humans with ECT had a blood brain barrier that didn't re-seal -- for Sarah, any odours can trigger symptoms, so she has to keep a very clean house with few chemical cleaners - her brain is no longer protected from these odours
0:41:00	Sarah's sensitivity to smells kicked in at the same time the delayed electrical injury kicked in, so they are related - Sarah has to careful in public places - she has many air cleaners in her house, completely re-did the HVAC system with extra filters that Sarah changes every 2 weeks
0:42:00	The majority of buildings don't routinely clean their buildings or their HVAC systems - or exposure to perfumes can cause symptoms - recently she went to a pancake breakfast and sitting 5 feet from the propane stove
0:43:00	She was fine for a short while, but then her speech began to slur, Sarah stood up and fell over - anything she breathes in goes straight to her brain
0:44:00	Sarah says it is important for people to know that ECT / shock treatment needs stanardization and regulated - she needs more signatures on the petition - it is an international petition and will be sent to all English speaking countries - it can be translated as Sarah has partners to translate - it is important we have these discussions in a public forum
0:45:00	Sarah says she's gleaned info from the other interviews - and that her doctor's eyes almost popped out of her head when Sarah brought her the CCI info - its weird and exciting that different mechanisms of injury can cause similar symptoms
0:46:00	Scott asks Sarah final question: what is something nice you're doing for yourself today? Sarah is excited to go to the interantional car show because they have an entire mobility section - Sarah is going with her husband to look at accessible transportation so Sarah can get out of the house and integrated into the world
0:47:00	Sarah is thankful for the gift of tickets from the San Diego car show, because without the gift, they would not be able to afford to go because all their money goes to testing, treatment and medical expenses - but is excited to get out of the house with her husband

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Scott Simpson: 

Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.

I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.

Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. 

Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

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I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.

Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.

My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

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Sarah Price Hancock (part 2): Surviving Shock Treatment (ECT) and Psychiatric Medications

At the end of part 1 of my interview with Sarah, she had become dizzy and managed to get to the floor safely. Once the gravitational pressure on her brainstem was relieved by being horizontal, the change in the clarity of her voice was astounding. 

I caught up with Sarah a few weeks later to pick up where we had left off, and in part 2 we talk about Sarah’s experiences living with ‘ECT brain’ -- like learning how to read and comprehend again. 

Sarah shares some of the treatments she’s tried to varying degrees of success; and how she managed to achieve her Master’s degree in rehab counselling in spite - and because of - her medical care experiences. 

Sarah also talks about her experiences of bilateral hemiplegia - a frightening condition where one side of the body becomes very weak or paralyzed - for Sarah it is always the right side, and she will have great difficulty walking, talking and breathing.

Sarah tells about some of these weird stroke-like responses her body has to things in our environment like mold, barometric pressure changes, or foods with residual alcohol. 

Sarah also shares about some of the treatments that have had a positive effect on her symptoms, and by extension, her quality of life. She tells about MacGyvering a grounding bracelet that has helped dampen some symptoms, and about the time the cold laser therapy on her brainstem brought instant symptom relief. Sarah also tells about the ‘weird science’ interaction during acupuncture when all of her neurological symptoms disappeared -- until she put her cell phone up to her head.

It is truly frightening that shock treatment, aka electro convulsive therapy, or ECT, is not standardized. It is like the wild west with different doctors using different protocols and - surprise, surprise - getting different results. Sometimes good, sometimes devastating like in Sarah’s case. That is why Sarah has started an international petition to make ECT safer.

One final note, when I started recording the interview, Sarah had just gone from being sitting up and being vertical to laying down and being horizontal --- listen to how Sarah’s voice becomes more clear as we get further into our chat. 

SHOW NOTES 

0:07:00	(At the end of part 1, Sarah had gotten dizzy and had to lay down on the floor. We connected again a few weeks later.) It takes a while for Sarah's body to normalize from dizziness, so the longer she stays horizontal, the more likely she'll be able to sit or stand later
0:08:00	Not sure what's going on with Sarah's body, but the research into electrical injury, the focal point of the electricity is on the brainstem - but the brainstem is not involved in emotional regulation that they are trying to effect in shock treatment (ECT) - the electrodes are placed on the temples
0:09:00	And the electrical currents pass through the brain to the anterior of the frontal lobes and brainstem area - they've discovered the most damage is along the current's course through the brain - it also causes diffuse electrical injury in the brain - so the more shock treatments, the more damage they are likely to have
0:10:00	Electrical injury in other parts of the body also impacts the brainstem - we have to remember our central nervous system was designed to conduct electricity, so whenever we're exposed to an electrical current, it is going to travel the path of our nervous system, it is not contained to a specific body part
0:11:00	Sarah is sensitive to electrical currents in the environment, from devices - she had a unique experience, she began working with a doctor who uses acupuncture - sometimes in acupuncture they will create a circuit within your body from one needle to another - when he did this to Sarah, her symptoms completely subsided
0:12:00	The constant static humming she's feels in her body, completely went away - the doctor said he'd never seen that before - Sarah's speech problems completely resolved - then her phone rang, as it got closer to her, Sarah's symptoms started to reappear - when she finished the convo and moved the phone away from her, the symptoms resolved again - the doctor's eyes almost popped out of his head
0:13:00	There is so much we don't understand about the body and its response to electrical currents - Sarah does a lot of 'grounding' - it helps her sleep and takes away the static feeling - this should all be looked into if someone has an electrical injury
0:14:00	Grounding is where the person is literally grounded to the earth - a study in cardiac patients that were grounded for 8 hours a day (during sleep) - an electrical wire is grounded to the earth
0:15:00	The Natvie Americans use grounding a lot - Sarah knows a story of a man visiting his grandmother on a Reservation and she demanded he take his shoes off because 'they are going to kill you' - she recognized there is rejuvenation by being connected to the earth - the cardiac patient and grounding study measured their cortisol every 4 hours
0:16:00	Over several weeks, the patients re-regulated their cortisol and improved their sleep patterns and improved their heart problems - that was a controlled research trial - Sarah is very research based and thought 'it couldn't hurt' to try - going barefoot in the grass or using actual grounding equipment
0:17:00	Sarah has felt a difference: improved sleep, improvement in her most annoying symptoms
0:18:00	A woman selling an EMF detector device applied it to Sarah, but it didn't light up, something the woman had not seen before - she didn't know that Sarah was sitting on a grounding mat - Sarah finds it fascinating that we can improve our health many different ways
0:19:00	Sarah also bought a grounding bracelet (from Amazon, like $3), the kind you'd use for fixing computers - the bracelet has a wire that is connected to an alligator clip - Sarah bought a power surger that has a light that indicates when it is grounded
0:20:00	Sarah warns to consult with someone who knows electrical engineering, not to take her experience as advice because electricity is powerful and don't want to cause problems
0:21:00	Sarah put a grounding screw into the 3rd hole of an electrical outlet and attached the alligator clip to that screw - Sarah then sleeps with the grounding bracelet on - that's the cheap way, you can pay hundreds by purchasing equipment online
0:22:00	Barometric pressure is what changes our weather - a 'low' is when a storm is coming in, the faster it drops, the faster the storm is approaching
0:24:00	When there is the barometric pressure drops, Sarah gets the most intense tension pressure headaches - Sarah has problems going into the mountains because her body has problems regulating pressure, and the motion is also a problem
0:25:00	Sudden storms can cause bilateral hemiplegia - there is a lot to be researched about the body - Sarah sent research on electrical injury to a NIH researcher, he got her on serine and ATP
0:26:00	Patients with delayed onset have low levels of serine, and amino acids - when the NIH researcher read Sarah's list of research, he started to understand why Sarah was not improving
0:27:00	Brain stem and cranial nerve damage is not something he knows how to address - Sarah has been blessed to connect with some exceptional researchers - Phillip Yarnell, Ken Ferguson - specialize in electrical injury - they want Sarah to have a 3T MRI with various sequencing
0:28:00	To identify how her brain is functioning - Sarah was also referred for an EMG and 'sees' inside the brain, not just the surface - the challenge with electrical injury is that they can cause bizarre symptoms, that are broad and varied, so doctors look at the symptoms as conversion disorder because they don't understand - when researches look at brainstem evoking potential, they can cause all these symptoms
0:29:00	This indicates its not a conversion disorder, but a type of seizure - and its not captured on a standard EEG - but during a brainstem evoking potential procedure they overstimulate the patient visually, auditorally and they show damage in the cranial nerves and brainstem causing dramatic problems - so its critical that people with an electrical injury understand that the laws of electricity do not change based on benevolent intent
0:30:00	So just because a doctor gave you electricity, doesn't mean it contravenes the laws of electricity and human tissue - Sarah and her doctor are looking into cranio cervical instability (CCI) because electrical injury causes atrophy to tendons and muscles - some patients develop bulbar type symptoms with difficulty swallowing
0:31:00	When Sarah lays down her thoughts are much clearer, so she's going to get imaging for CCI - when Sarah is horizontal the effect is so profound - animal studies show electrical injury causes compression of the brainstem - the electrical force to cause seizures is about the equivalent of 73 pounds pushing on the brain
0:32:00	The electrical pulses strain the brain - science is compartmentalized and not considering how electricity affects different parts of the body - (Scott mentions the PoNS device)
0:33:00	Sarah tried cold laser therapy and it radically improved things - but it also stimulated her nervous system, and the more she used the laser, after initial improvement, the worse she got - so how much stimulation can the brain get before it short circuits? - new devices stimulate nerves, but the truth is we don't know how they work
0:34:00	So how long with they work? How much time is needed for a treatment? We're getting into areas we don't understand, especially about delayed electrical injury - research looks for immediate results, and not recognizing delayed electrical injury that is well documented in the literature
0:35:00	It is devastating to many people because it is directly related to motor neuron disease, and motor neuron disease is devastating - (Scott refers The Healing Brain by Dr Norman Doidge, and to Dr Fred Khan, about laser therapy)
0:36:00	Sarah knows they use laser therapy in brain and spinal cord injury
0:37:00	Sarah has seen dramatic results but wants to caution people that we don't know enough about delayed electrical injury - for Sarah, who has repetitive electrical injury, her results are probably more dramatic, but less long term - recently she ate something with residual alcohol in it, but her body can't process alcohol
0:38:00	Within 10 minutes of trying it, she couldn't speak or walk - dizzy, difficulty communicating, breathing - her brother immediately took Sarah for cold laser therapy
0:39:00	The doctor put the laser on her brain stem and instantly her symptoms resolved - but Sarah says use caution, too much of a good thing is not a good thing - just because it works now, doesn't mean it will work, or not cause problems 5 years from now - study and do research
0:41:00	There are many medical practices and cultures we can learn from, but we need to keep tings in context
0:42:00	Sarah quit shock treatments against medical advice in June 2009 - in 2010 Sarah had immediate onset of hemiplegia and frenetic nerve spasms that look like dry heaving, but there is no nausea - then it becomes diaphramatic paralysis - so less then a year after stopping shock treatments - then in 2013 it happened again
0:43:00	The 1st time it happened she was at the dentist and was taken by ambulance to the hospital and tested for stroke - her CT was clean, and within 36 hours she had regained the strength in both sides of her body
0:44:00	It happened again with a doctor, the room had a lot of stimulation - Sarah got very dizzy, and the world turned topsy turvy and Sarah slanted to her right - again she was taken by ambulance to another hospital for stroke assessment - they said she had atypical migraines
0:45:00	So no damage on CT scans after those 2 events, but they started to happen more frequently - in 2007 Sarah was exposed to mold - she was working in a building with a history of a leaky roof and being flooded - within 18 months Sarah was messed up, could not walk, etc
0:46:00	She didn't know at first it was mold related - but started practicing mold avoidance and her symptoms started improving - so what makes Sarah sick is not one single thing, it is a cumulative issue - she believes there are toxicity issues from her underlying condition of hepatic encephalopathy - this was complicated when they gave her psychiatric medications that her body could not metabolizing - so her brain was marinating in ammonia
0:47:00	They tried to fix that by using electricity, repeatedly - Dr Bennett Amolio spoke at a board meeting for the State of California's Department of Rehabilitation - he was talking about brain injury and stated that electrical injury is a functional injury, and repetitive electrical injury is like repetitive head injury with similar effects as functional injuries, motor neuron injuries, and Parkinson type movements in football players
0:48:00	He said the injuries are not seen on typical scans, very fine scans must be used - on the cutting edge of quantifying the problems - Sarah's side effects from shock treatment are typical for shock treatment patients - there is no standardization of shock treatment - there are 7 variables involved
0:49:00	There is an outcome dichotomy of shock treatment: people either say it saved their lives, and others say it ruined their lives, including death as a direct result - Sarah says we really need to make change - need fidelity and standard operating procedures so doctors can replicate what the research shows - with ECT they never replicate electrode placement and seizure threshold and all these things you'd think would be standardized
0:50:00	So doctors give information in the informed consent, but the doctor may not be using the same protocol - when the manufacturer lists 7 variables that may cause permanent brain damage or memory loss, that is a red flag to prioritize patient safety and minimize patient risk - that is why Sarah created the petition for standardization
0:51:00	Sarah says when people hear these amazing stories about ECT and recovery, but because it is not regulated or standardized, we have to remember these stories, good and bad, are just anecdotes until research is done
0:52:00	Sarah has a podcast - and now that she knows how much better her voice is when she's horizontal, she should get back into her podcast - Sarah worked really hard to get supports and academic accommodation in place and 1.5 years after shock treatment, she was accepted into an internationally recognized rehabilitation program - they looked at her lived experience and her grades in undergrad
0:53:00	They put more weight on lived experience then GRE (Graduate school test) testing because Sarah tested in the bottom third, a vast difference from her 3.9 GPA in undergrad
0:54:00	Dr Karen Sacks admitted Sarah to the program, could see her potential for success - Sarah feels blessed to have been accepted into the San Diego university - the students used Sarah a lot for their research to know what kind of assistive technology Sarah needed - she could then take that report to the accommodation office at the university - Sarah learned about neuroplasticity and what she could do to help her brain
0:55:00	She essentially had to learn to read/comprehend again because ECT made it that Sarah could not remember the line she just read, or identify what line to read next - she had to listen to audio why the words were highlighted on a screen so she could learn to track her reading - there was a lot of rehab involved that most electrical injury patients don't have access to - so Sarah is creating rehab protocols for these patients so they can get access to life enhancing treatment and protocols - Sarah can read and retain info now, her working memory has improved
0:56:00	Sarah got her Masters degree and was working as a research assistant and graduate assistant, and they were so impressed with her work they invited her back to teach even though she didn't have a doctorate - so Sarah co-taught and co-authored psych rehab accredited curriculum - a phenomenal experience teaching for 4 years
0:57:00	They created recovery based practical solutions for psychiatric rehab - California implemented Professional Clinical Licensing, so they were able to create a clinical track for rehab counsellors - but with the delayed onset of electrical injury, Sarah was forced into early retirement
0:58:00	It was hard because she loved teaching and designing lessons - she loved being able to challenge the notion that psychosis was permanent, but that people could recover and return to work, if they have the supports, they can have a full life - but there is so much bias against people with brain injuries and psychiatric problems
0:59:00	There is an assumption that patients can't recovery, but in reality you can't judge a fish by how well it climbs a tree - if you give appropriate assessment and supports, and if you believe in your clients and help them believe in themselves, will take their life in directions that will be astounding - Sarah thinks helping people recognize their own potential
1:00:00	By bringing together knowledge, we can produce great programs that improve quality of life and reduce harm - When Sarah sits up, her speech is so affected she has had to start using speech to speech relay services - she was just assessed for text to speech therapy
1:01:00	Sarah ability to stand is deteriorating, as is her ability to sit up - but Sarah had strong relationships with universities and is frequently asked to present - now she either has to do it from being horizontal, or horizontal from home via zoom video, or like Stephen Hawking, with an electronic voice - the university said that Sarah's presentations are so profound for the students they didn't care how she did it
1:02:00	It means a lot to Sarah that people are recognizing lived experience as very valuable - if doctors integrated what they know with what patients know, they would create great care - there some doctors out there who do this and integrate patient experience to understand practical application
1:03:00	Sarah's website is PsychRecoveryandRehab.com, Sarah's podcast is on emotional self-reliance - there are 10 episodes and walks through the basics of creating emotional self-reliance, autonomy and independence
1:04:00	It is good for anyone who has been slammed again and again - helps people take back power over their lives - her podcast is called Emotional Self Reliance
1:05:00	Sarah says her international petition to get ECT regulated needs more signatures - if any one is interested in helping translate it to their own language, they can connect with Sarah

 

CONNECT WITH SARAH PRICE HANCOCK:

Twitter: @PsychRehab

Facebook: Psych Recovery and Rehab

Linkedin

Website:http://www.psychrecoveryandrehab.com/

Podcast:https://www.psychrecoveryandrehab.com/esrpodcast/

Youtube:https://www.youtube.com/channel/UCMRPmYh9SrE3RcdmFObhyYw?view_as=subscriber

Sarah's petition for ECT regulation and standardization: http://chng.it/rBGJNSKB5m 

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Sarah Price Hancock (part 1): Surviving Shock Treatment (ECT) and Psychiatric Medications

I first became aware of Sarah when she shared a video clip on twitter of her waiting for an appointment sitting in her wheelchair. Her voice was strained and she was a bit difficult to understand, but as soon as Sarah was in a horizontal position her voice was clear as a bell. I immediately reached out to Sarah to learn more about her incredible health care journey. 

Doctors diagnosed Sarah with Schizoid Affective Disorder and gave her antipsychotic medications. When those didn’t work, they gave Sarah over 116 rounds of electric shock therapy  - they put electrodes on Sarah’s temples and zapped her with electricity so her brain had a seizure. Doctors also had Sarah on 5 classes of psychiatric medications amounting to 37 different combinations. In spite of this, for 12 years Sarah lived with voices in her head 24/7 telling her how and why to kill herself - all while working toward her Masters Degree.

As Sarah would eventually discover with a proper diagnosis, her psychiatric symptoms were not from schizo affective disorder, they were from hepatic encephalopathy and her brain was marinating in toxins. Once Sarah received proper treatment the voices disappeared. But that’s not the end of Sarah’s story - all those electric shock treatments have damaged Sarah’s brain affecting her speech, memory, and ability to walk. 

We had to end Sarah’s interview prematurely as you’ll hear, when she was overcome with dizziness, her speech quickly deteriorated, and she had to lie down on the floor to remove the pressure on her brainstem. Listen to how Sarah’s voice changes during this - Sarah’s final words are in the voice she had before electrical brain injury.

SHOW NOTES

First Psychosis

0:06:30

Sarah grew up in sunny San Diego, a 3rd generation San Diegan - wonderful parents, but struggles like all families - Sarah is the oldest child and only daughter - when frustrated her Dad would say 'Well Sarah, I've not had a daughter before' - she has 2 younger brothers - her parents did their best to provide a loving and supportive environment

0:08:30

Sarah's Mom is a wonderful lady, but they did butt heads - they have reconciled and Sarah considers her Mom to be one of her best friends now - after high school Sarah moved to Rexburg, Idaho where she learned about living in snow and -30 Fahrenheit

0:09:30

Sarah went to a college made famous by (the film) Napolean Dynamite, called Rex College, but now known as Brigham Young University Idaho - graduated and transferred to BYU (Brigham Young University) in Provo, Utah - after 1 semester studying English, Sarah served a mission for Church of Jesus Christ of the Latter Day Saints and learned to speak Spanish and serve the people of Texas - after 18 months Sarah was invited to join the American Sign Language program and worked for 2 months with deaf people - and then returned home to BYU

0:10:30

Sarah had bad chronic and seasonal allergies causing asthma, sinus infections and bronchitis - growing up Sarah had been given a lot of antibiotics, like 4 - 8 times a year throughout childhood through her Mission - she got pneumonia when she got back and was put on another antibiotic and within a few doses had her first psychotic break

0:11:30

Sarah was on campus trying to find her way and she could see people dressed in pioneer era clothing - she was hauled off campus and put in the psych unit and put in a straight jacket for more then 36 hours

0:12:30

That was scary because she didn't know why they were putting her in a straight jacket - it was a very vulnerable place to be - that brought up childhood traumas she had with a babysitter - being in a straight jacket was very traumatic

0:13:30

Initially they told Sarah she was Bipolar with Psychosis - then was labeled with Schizoid Affective Disorder with Bipolar type, meaning she had symptoms of schizophrenia and bipolar - then the medication they gave Sarah could not be metabolized by her body and she became catatonic - they didn't realize ammonia was marinating in her brain - it took about 4 years of those meds before she became completely catatonic

0:14:30

In those 4 years, Sarah was able to take 1 class at a time - she was determined and worked hard to get her degree in 8 years - Schizo Affective Disorder has symptoms of schizophrenia

0:15:30

'Positive' symptoms are 'added' to the patients experience: they see, hear, taste things others don't - 'negative' symptoms 'take away' from the person: motivation, ability to speak, organize thoughts and environment - those are the 'schizoid' part - 'affective' refers to mood0:16:30Lots of mental illnesses have affective disorders: mania with high energy, difficulty following thoughts, rash decisions, depression, difficulty processing info and energy or connect emotionally with people

Voices in her head

0:17:30Sarah's problem was mixed mania, so all the energy of mania, and all the symptoms of depression - plus symptoms of schizophrenia, so for 12 years Sarah lived with voices 24/7 telling her how and why to kill herself - her brain was marinating in toxins - every time she started to believe the voices, she became very proactive in seeking out help - that was interpreted as attention-seeking, not trying to prevent her own demise

0:18:30S

arah would check herself into the hospital asking for help, and then be ridiculed for asking for help - she was called a 'frequent flyer' and a lot of things by staff, probably because they were frustrated they couldn't 'get the medications right' or thought Sarah wasn't being compliant - but Sarah always took her meds as prescribed, always filled her prescriptions on time because she had been trained to believe she needed those medications in order to survive, and she was not doing a very good job surviving

0:19:30

To Sarah, not taking the medications was not an option because she was told over and over that meds were the only way she'd be able to function - they kept trying different meds for psychosis, mood, depression, anxiety, and sleep - 5 classes of medications and Sarah cycled through 37 combinations and they played with the chemicals in her brain in order to find the 'right' combo that would stabilize her

0:20:30

It was difficult - they would try to make the hospital less welcoming so Sarah wouldn't want to come back because they thought she was attention-seeking - Sarah says 'dude, if I wanted to get attention I would do something good like write a book, or travel the world and set a record or something - nobody wants negative attention'

0:21:30

Sarah would endure strip searches every time she was hospitalized, which was every 3 - 5 weeks, but her father says it was more frequent because sometimes she'd be re-admitted within 72 hours - Sarah was marinating and they couldn't recognize that because there are not really any tests - they don't do cerebrospinal taps for these symptoms - they don't recognize encephalopathy very often unless its associated with seizures

0:22:30

Most doctors will just refer a patient to psychiatry instead of someone who understands encephalopathy - even a lot of encephalopathy not hepatic encephalopathy, her 1st diagnosis - and that wasn't diagnosed properly until 2.5 years ago - Sarah had learned a lot of adapting skills over the 12 years of hell

0:23:30

During that period because none of the meds worked, and Sarah became catatonic in 2002, they didn't do any blood work or brain scans to find out why she was catatonic, they just assumed they'd probably diagnosed her with schizophrenia - since she's not responding to the medications we'll give her a higher dose - when that didn't help, they said it was time to do shock treatment

Shock treatment, aka ECT

0:24:30

They gave Sarah bilateral electroconvulsive therapy (ECT), where they put the electrodes on either side of her forehead and used 460 volts of electricity to briefly stimulate the brain into a gran mal seizure - they feel a therapeutic seizure should be at least 25 seconds - so if the patient doesn't seize for 25 seconds they will immediately give them more so they have another seizure - they gave Sarah ECT 3 times a week - but there was one time where she was ECTed twice in one day - every time a person seizes, the brain tries to protect itself and prevent itself from having a seizure

0:25:30

So they have to increase the voltage higher and higher - when there at 100% charge, it is 0.9MC which is below 1.0mc of immediate death - at 100% and the patient still isn't seizing, they put in an IV with caffeine so that it pushes the brain and body to the brink so you'll seize

0:26:30

They have to push through the anaesthesia and mood stabilizers that prevents seizures - the first several were not at 100% of the machines strength, but Sarah had more then a 100 at 100%, and 60% were also with IV caffeine

0:27:30

ECT was invented in Italy in 1938 - Italy has since banned it - it was brought to America - they never did safety studies - they never did any kind of scientific decision making about appropriate dosage or methods to use - there more then are 7 variables involved - it is not standardized - it is not regulated - it has never been safety tested - some people feel ECT has saved their lives - others feel ECT has destroyed their lives

0:28:30

And families will tell how ECT killed their loved one - Sarah had 116 ECT treatments over 18 months - from 2002 to 2004 - then over 14 months from 2006 to 2007 - Sarah quit against medical advice in 2007 - she was required to sign 'informed consent' before each ECT procedure, but they don't provide all the info - it says the most pressing concern would be headaches

0:30:30

Sarah had to tell them her biggest worry when filling out the forms, so she always put headache, as that was all she was told about potential side effects - but they don't understand the risks because they've never done longitudinal studies to see the long term effects or neurological factors or even addressing patient satisfaction because the the surveys get a very low response rate, like 28% - and then say of the 28% who returned the survey, 80% were happy

0:31:30

But some of those people who could not put the stamp on the letter, or needed help filling it out, or were so angry at what had been done to them that it would go immediately in the garbage - Sarah says it is interesting when you start to look at the research and ask critically 'what are they not telling us?' What are the holes in the methodology? They will use the MMSE (mini mental state examination) a simple 18 question test for brain injury and dementia

0:32:30

What they don't say is that the MMSE can be passed by people who've had lobotomies - so it is immaterial, it can't be used at school or work for accommodations - so not a good measure of the damage actually caused, but it is the most used assessment for people having ECT....if they're given an assessment, but most people are not

Memory loss

0:33:30

Sarah can't remember the first few ECT treatments because she can't remember the first 36 years of her life - she's lost 85-90% of her memories - she was 34 years old when she stopped ECT, but it took another 2 years for her brain to start to make new memories - Sarah has 38 journals and she reads them frequently so she knows what has happened in her life - so unless she's read it read recently, she wouldn't be able to tell many specifics

0:34:30

When Sarah 12 years old a Sunday School teacher told her about Wilford Woodruff who wrote in a journal every day by the time he was 90 he had many volumes - at the time Sarah wanted to be a writer and decided she would journal daily - she's very grateful, without them she wouldn't know about family vacations or formative experiences - she doesn't remember her grandparents and holidays - all our life decisions are based on our previous experience and memories - our relationships are based on shared memories

0:35:30

It can be very challenging living without formative memories - Sarah had a massive identity crisis because she didn't know the symptoms of memory loss

0:36:30

When Sarah looks at pictures with her family, its like playing 'Where's Waldo' because if she can find herself in a picture, she knows she'd been there, but it doesn't trigger any memories - it has been a grieving process about her loss, but she's learned its not helpful to focus on her loss, she needs to be moving forward because she has a life that still needs to be lived

0:37:30

In 2015, Sarah was on her 37th combo of meds - she'd been on meds for 17 years and her meds just stopped working - they generally only work for 5 years, part of that the brain has become dependent and the dose has been raised as high as they can

0:38:30

Sarah had just been married, had just finished her Masters and just started working full time when her meds stopped working and she was scared spit less and she didn't want to freak out her husband who had never seen her when she was very symptomatic, and she didn't want to lose her job or all her colleagues have know because Sarah worked so hard to establish herself as a professional - she also worried about her family because she was finally starting to re-build bridges that had been burnt when she was very symptomatic

0:39:30

Sarah was trying to minimize her symptoms, but was very scared - a friend had been trying to get Sarah interested in micro-nutrition, but Sarah had put her off for 18 months - Sarah is a scientist at heart and the friend gave her the research to review - randomized control trials, solid methodology, so Sarah took the info to her psychiatrist and they decided to taper Sarah off the meds - but psychiatry is not prepared to taper people off meds

0:40:30

Sarah started taking the micronutrients and after a few weeks started to feel cognitively weird so talked to the manufacturer - they said you've been over-medicated and should taper off the meds, your brain now doesn't need the medications as much

An accurate diagnosis: Hepatic Encephalopathy

0:41:30

The psychiatrist says that Sarah is 50mg over the upper limit of the antidepressant, so they cut that 50mg first - Sarah never understood withdrawal until she worked with someone who didn't understand tapering - it was a very scary process, caused a lot of problems

0:42:30

They learned to support Sarah's body by supporting it enzymatically , a lot of amino acids, specifically protein isolate to support her blood sugar - she drank shakes every 90 minutes and she would function very well, but if she missed the protein isolate shake she would deteriorate very fast

0:43:30

Sarah had a friend who was getting amino acid IV, so Sarah started looking and found Dr John Humiston and he recognized the symptoms of withdrawal - by this time Sarah had been off the meds for 18 months - he said they first needed to get her gut healthy before amino acid IVs

0:44:30

Sarah was like 'dude, food has never affected me, hurt or harmed me, don't worry about it' - but he had Sarah track her diet and then cut out fermented foods, sprouted food, nuts, dairy, a whole swath of food - he recognized all those antibiotics Sarah had as a child caused an overgrowth of candida and that caused hepatic encephalopathy - Sarah went home and cleared the kitchen of foods that did not meet the new diet

0:45:30

Within 3 days, the psychosis Sarah had been experiencing left and she hasn't had it since - except once when she took an antibiotic for a kidney infection - by the 2nd dose she was being followed by someone she knew was dead

0:46:30

And being talked to by a dead ancestor - by the 3rd dose she was paranoid, pacing, pulling her hair out, non-verbal, shaking, sweating - her family took her to the ER but she didn't want to go back and being given meds, she'd just gotten off them - Sarah knew she needed to occupy her mind with something systematic, so she began folding paper, tearing it, just doing something very basic

0:47:30

When the psychiatrist saw the very tiny pieces of paper he asked Sarah what was going on - she said she thought he had cameras watching her, but she realizes her brain is on fire and she needs to reign it in - he looks at Sarah and said 'I've never had anyone say that before - tell me more' - Sarah told him she was faculty as San Diego State University and teach in the clinical classes about psychiatric rehabilitation and recovery and this is one of the strategies I teach people who are dealing with false voices that are distressing and they need something simple as distraction - he says 'you're doing a good job, you can go home' - that was the 1st time Sarah had gone to an ER and walked out

0:48:30

Sarah says we have yeast producing bacteria in our stomach to process food, and when they ferment our food they produce over 20 different alcohols as by-products, in small amounts is no big deal - but if you have fungal over growth they produce a lot of by-products

Dystonia

0:49:30

That goes for bacterial by-products too - we need to have a healthy balance of bacteria, yeast and fungus in our guts, if we don't these by-products start producing too much of these alcohols like acetone, acetate and start marinating the brain and can cause problems with behaviour, emotion, sleep, autoimmune - because brain and body trying to maintain healthy balance - Sarah found a doctor who put her on anti-fungal medication and within 3 days all of her psychiatric symptoms were gone

0:50:30

Sarah tries not to dwell on the fact that a strict diet and anti-fungals may have prevents 17 years of suffering - missed out getting married earlier, missed out on having kids, missed out working and earning a retirement, missed out on family events

0:51:30

It caused a lot of strife and hardship on Sarah's family - if she dwells on it she gets pulled into the 'poor me' gravitational pit, so Sarah works hard on re-focusing on gratitude and here and now, and focusing on what she can do to prevent this from happening to other people - Sarah has to make meaning of her experience, its the only thing she can do

0:52:30

Sarah takes that sense of oppression, injustice, being misunderstood, misjudged, judged harshly - Sarah needs to make sense of her experience so that she can feel like what she went through was not in vain - Sarah has been on the strict diet for 2.5 years and must adhere to it

0:53:30

She was on anti-fungal meds for a looooong time: 18 months - since she'd been infected for a looooong time - she still takes supplements to support her gut - but about 7.5 years after the last shock treatment, Sarah experienced a worsening of neurological symptoms, worse then she'd ever had before - problems with muscle twitches (fasciculations) and fatigue easier, problems with her voice

0:54:30

Sarah started to have dystonia, especially the muscles in her neck, and started have dizziness when exposed to a lot of visual or auditory hallucination - so in the car this past April, she was driving for about 45 minutes and by the time she got to University to teach, she had difficulty standing to get out of her car

0:55:30

Sarah started to have muscle contractions on one side of her body, she didn't realize she'd been over-stimulated driving - she then drove to her doctors appointment, a 50 minute drive, and then started to have muscle contractions on the left side of her body and pull her it into a contorted position

0:56:30

Sarah then started to feel a current of electricity down her sternum with diaphragmic paralysis - then she'd be able to breathe again - then the right side of her body would have contraction and contort her body into weird positions - in went back and forth for the next 4 hours - it was intense at first, then less so with more time between - her doctor started to refer her to a neurologist and she saw lots of them

Iatrogenic hot potato

0:57:30

When they see Sarah has a history of shock treatment, then the orders for their testing don't get placed, for brain scans, EMGs, etc - instead Sarah is referred to another neurologist, and so and so on - Sarah is now on her 7th neurologist - Sarah has become an iatrogenic hot potato - she thinks the neurologist recognize that she was harmed by treatment, so they keep passing her along

0:58:30

Finally Sarah found a functional neurologist, he was first a chiropractor then did 2 years of neurology - he did VNG (Videonystagmography) - they put goggles on Sarah to track her eye movements and move dots in her vision - supposed to be 45 minute test in a bunch of different ways

0:59:30

The interesting thing was they were able to create a concussion response - with that stimulation, one of Sarah's pupil's was huge - they stopped the testing and said they needed to let her brain rest, and then continue the testing later

1:00:30

A decade previous, Sarah found a brain injury specialist, and she asked why Sarah why she was wearing sunglasses indoors, Sarah said 'when I take them off I get a bad headache' - the specialist said 'oh, you have a brain injury' and Sarah said 'no, I had shock treatment' - the specialist said shock treatment is brain injury - but Sarah protested that her doctor told her the symptom would go away - since then, Sarah has learned through research that one doctor, a neurologist at Berkeley, outspoken against ECT spoke at the New York State Assembly

1:01:30

He told them the ECT put out 100 joules of electricity, that is the equivalent force of dropping 73 pounds (30 kg) onto a brain from a foot (33 cm) above it - for Sarah that was 116 times, so essentially Sarah has a repetitive brain injury and developed the bulgar symptoms seen in people with motor neuron disease

1:02:30

Motor neuron disease have 4 risk factors: people with ALS get it due genetics; people with toxic exposures; people with a history of electric injury; people with history of repetitive injury - Sarah doesn't have the genetic component, but does have the other

1:03:30

Sarah neurologist says she probably has a conversion disorder since she's not happy with her ECT experience - Sarah says that doesn't explain the saliva problems, speaking problems, breathing problems, thinking, walking, heart, etc - Sarah found a good GP who would order the tests the neurologist wouldn't order so she can take the results to the neurologist

1:04:30

The ECT research is constructed so that they don't talk about electrical injury - they never track patients more than 9 months - delayed electrical injury happens 2.5 to 10 years after treatment - Sarah's onset was about 7.5 years after her last ECT - and Sarah has worsened since then

1:05:30

Research on delayed low voltage electrical injury have studied quite a few people - low voltage is less then 1,000 volts - electrical injury has 2 components: the immediate effect - for Sarah this was memory loss, balance issues, proprioception issues

Delayed electrical injury

1:06:30

Aphagia, word finding problems, executive function - but they've realized that a lot of people with electrical injury have 'delayed electrical injury' - that research shows a lot of motor neuron problems - it fascinating they've been able to separate these 2 things (electrical injury vs ECT)

1:07:30

But natural law doesn't respond to benevolent intent - good intentions is not going to change how the human cell responds to electricity - it is so apparent that delayed electrical injury and ECT survivors share the same speech, swallowing, dystonia

1:08:30

Fatigue and dropping things because no longer have ability to hold them - we're on a spectrum - Sarah knows 4 people who've had ECT and are on that symptom spectrum - it needs to be studied - Sarah has annotated bibliography connecting the research on low voltage injury, delayed voltage injury, and ECT and she needs it to be published

1:09:30

Doctors are siloed in their research and not connecting dots among themselves - they assume the organ they specialize in is not connected to the rest of the body - we can't have siloed research, they are excluding important data - Sarah would never have thought that her neurological symptoms had anything to do with the ECT if not for another person who had ECT and has similar symptoms to Sarah, and this person was forced to retire from being a trauma nurse

1:10:30

When the nurse heard Sarah's story, she told Sarah she had to look into electrical injury research - Sarah was like 'dude, I was never told any of this when I was given my 'informed consent'' - recently, one of the manufacturers of ECT devices had a lawsuit against them and they settled out of court

1:11:30

Shortly after that, the manufacturer updated their user guide, and buried on page 4 is '7 risks associated with permanent brain damage and permanent memory loss' - all the informed consents need to be update, internationally - patients need to know about the risk of permanent brain damage, permanent memory loss - a lot of doctors don't take these risks very seriously so don't inform their patients about them, and minimize the risks - because it is not standardized or regulated, every doctor does it differently

1:12:30

Doctors are never followed ECT patients longitudinally - an inpatient doctor will not be following up with that patient 5 or 10 years later, so they're not going to be seeing the effect that survivors are seeing among themselves - that is why Sarah started an international petition to update informed consent, update core competencies for doctors trained and certified to give ECT, pre-assessments and post-assessments to track longitudinally

1:13:30

When people starting having cognitive problems, they are not even assessed for brain injury and given rehab for a better quality of life - Sarah had to navigate living with ECT brain by herself, with her family saying 'the doctors said your memory would return, so get over it' and her doctor saying 'you'll get your memory back, so get over it' - it is a constant battle - going forward, if we had something safety tested......"Sorry, I'm getting dizzy"

Sarah's speech deteriorates during interview

1:14:30

Scott: Sarah's speaking deteriorates - she says we should end the interview - I am concerned about her immediate well being - I ask if I should stay on the line with her to make sure she's safe

1:15:30

Sarah says she should lie down because "her brain stem does better when its not under pressure" and carries her laptop with her and lays down on the floor - Sarah takes a few breathes and says "Its like immediately" and voice is perfectly clear, unlike the entire interview when she was sitting up - I ask Sarah if she needs to call any one? - She says she'll just hang out on the floor for a while

1:16:30

Sarah says "Its weird to find your new normal. Who would've thought when you were a kid 'by new normal will be laying on the floor so I can think and speak clearly" - we laugh at the absurdity of it all - Sarah continues: when she did the research into the neuropathology of the animals they tested, and the autopsies they did in the '50s, all the animals had compressed brainstems from ECT - so Sarah's symptoms are very consistent with the animal studies - and consistent to what you would expect to see in a human

1:17:30

I ask Sarah if she's heard of 'cranio cervical instability (CCI)'? Sarah says she recently heard of someone with mold exposure who has CCI - I reply "Jen Brea" and Sarah confirms and says she has a history of mold exposure - the building she did her research has history of flooding and a bad roof - one time when she came home from vacation, she had left her air conditioning on in her small apartment, the water drain had plugged and that caused a water bulge in the paint - it took the building manager 3 weeks to replace the wall and carpe

1:18:30

You can't isolate any of things Sarah has experienced, as humans, our body keeps the score, it is influenced by what it is exposed to, and throughout our life, it becomes a cumulative effect - I tell Sarah that I will send her Jeff Wood's website link, Jeff is 'patient zero' for CCI and it was his experience that prompted Jen Brea to look into CCI

1:19:30

Jeff was bedridden for 3 years - they both had neck surgery and are almost completely symptom-free - Sarah says the idea of surgery scares her to death - she's been exposed to so many of the gaba drugs that she's developed acute respiratory responses when given anaesthesia - even lidocaine or novocaine will trigger phrenetic nerve paralysis - it will look like Sarah is having convulsions, but it is the frenetic nerve malfunctioning1:20:30Sarah says "My poor body, I'm doing the best I can, I'm only 44 years old and I'm having a lot of problems"

CONNECT WITH SARAH PRICE HANCOCK:

Twitter: @PsychRehab

Facebook: Psych Recovery and Rehab

Linkedin

Website:http://www.psychrecoveryandrehab.com/

Podcast:https://www.psychrecoveryandrehab.com/esrpodcast/

Youtube:https://www.youtube.com/channel/UCMRPmYh9SrE3RcdmFObhyYw?view_as=subscriber

Sarah's petition for ECT regulation and standardization: http://chng.it/rBGJNSKB5m 

__________________________________________________________

Be a podcast patron

Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions. 

Premium Patrons get access to video versions of podcasts for $5 / month.

Be my Guest

I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.

If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com 

Need a Counsellor?

Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.

If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.

**For my health and life balance, I limit my number of counseling clients.** 

Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com

Scott Simpson: 

Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.

I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.

Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. 

Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

Patient Advocacy

I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.

Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.

My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Remedies Counseling - Making Life Better

Have you had traumatic experiences with the health care system?

Are you living / struggling with a chronic illness? 

Do you need a counsellor with proven expertise and experience to make life better?

Book an appointment with Scott online at RemediesCounseling.com

RemediesOnlineCounseling@gmail.com

David Moore part 2: How to fight cancer, dental boards and Nazi-esque eugenics programs

In part 2 of my interview with David Moore, he tells us about being a caregiver to his friend and mentor college professor Patti as her health declines and the medical intervenes. When Patti goes in for what she thinks will be a routine 45 minute operation, David waits patiently.

When the surgeon comes out after 3 hours and says there were complications, David begins to worry. When Patti survives and gets to the ICU, the surgeons want to do more surgeries to fix what they broke, but David is named in Patti’s medical directive, and he follows her wishes and tries to protect her from what he calls the profiteering of Nazi-esque eugenics programs.

SHOW NOTES

Aortic valve stenosis for Patti

0:05:15

David's touched on 3 medical errors: his experience with the dental industry; the food we grow and eat and its impact on our microbiome; and the over-treatment of the elderly for profit - David was also taking care of an elderly friend who recently died

0:06:15

David was caretaker for the last 15 years of a friend who was his Department Chair when David was an adjunct professor at UNLV (University Nevada Las Vegas) - about 3 years ago she was diagnosed with aortic stenosis, that means there is valve in the heart that has become over-calcified and is reducing blood flow - this is no big deal unless under high exertion, then it can cause a special kind of fainting spell

0:07:15

She / Patti was 78 years old, they did an echocardiogram and they recommend a surgery called a TAVR (transcatheter aortic valve replacement) - a medical device they stick up through the groin arteries and cut out the valve and this device is a cage that is supposed to expand and seal - if it doesn't seal, it is called a leaky valve or heart failure

0:08:15

Instead, Patti went on a marijuana regime, and in 3 years cleaned out her arteries so she didn't require a stent - she did diet changes - a new study just came out saying stents are less effective then diet changes - but during these 3 years she lost 30 pounds and in the pool more often - sure, she wasn't feeling as sprightly as when she was younger, but she was aging well

0:09:15

For those 3 years doctors told her she could drop dead at any moment - she would walk up at night with panic attacks and afraid she was going to die - David explained that it was her sleep apnea, where she stops breathing, and that was causing her panic - the doctors convinced her to get an angiogram - the echocardiogram showed her aortic valve opening at .36 cm - anything below .7 or .8 is consider critical

0:10:15

She lived a sedentary lifestyle, never left the house, David did all of her shopping, she was always on the computer teaching courses online - the angiogram, 9 months after the echocardiogram, showed she a .56 cm opening - according to modern science that is impossible - David attributes this to marijuana and her diet

0:11:15

Her surgeon doesn't have Patti's case history, he wouldn't speak to David in front of a nurse - the cardiologist said they found biomarkers for heart disease, but David pointed out how she had improved

0:12:15

The statistics show there is a 6% chance she'll die during, and a 25% chance she'll die within 12 months of surgery - Patti ends up going for the surgery, she's convinced it will be a 45 minute procedure and she'll be home the next day - TAVR surgery is highly risky, no efficacy, and unproven beyond 3 years

0:13:15

The actual surgery lasted 3 hours - the surgeon came out and told David to 'go home and get some rest and come back in a few hours and Patti will be in ICU, don't worry, the 1st one we put in didn't work, so we're trying a 2nd one' - we haven't put in a pacemaker yet

Surgery gone awry

0:14:15

Patti / David did not know this risk factor: that since Patti's aorta was only .36 cm, very calcified, it was obvious a stent would not seal because calcium has jagged edges - it is impossible

0:15:15

The 1st didn't seal, and they played around with it, and then it slipped down and that reduces her blood flow and blood pressure, essentially making her heart die - in that moment her heart is dead - they gave her a bunch of chemicals and put in a 2nd valve up through the 1st and get it to open and seal to the calcified walls - David thinks that once the 1st valve failed they should have gone to open heart surgery

0:16:15

So there is a gap between the valves, they are both leaking, her heart is being mechanically pumped, she's on a breathing tube and they are pumping her full of chemicals / medications - her body is moving as her heart is pounding - Patti's medical directive said she did not want heroic efforts, feeding tubes, etc

0:17:15

David was Patti's power of attorney for medical - they'd been friends for 25 years, and he was her caretaker the last 15 years - then the surgeons put her in ICU and asked for her consent to try to put in a balloon to try to seal - David says they lied to him that a valve was restricting the blood flow, but they actually know the valve implants are leaking

0:18:15

They tried the balloon in a 3 hour surgery, and that didn't work - then another 3 hour surgery to put in a pacemaker - Patti was conscious between the surgeries - after the 1st surgery, instead of following Patti's medical directive, the hospital called her next of kin and they gave permission to keep her alive

0:19:15

The surgeon said that he'd been keeping Patti alive for 5 hours because that's what her sister said - David told him he'd already given him Patti's medical directive, and the surgeon is freaking out - he's worked so hard to keep Patti alive with chemicals - David thinks they should have let Patti die, but the doctors follow the next of kin and do the other surgeries

0:20:15

Then they wanted to do another surgery called 'a cuff' that would force open the slip valve - they had told David the ballon was the last ditch effort, and now they're saying a cuff is the last ditch effort - they had said that if things went wrong in the 1st surgery they would do an open heart surgery - David later found out that there is only a 2% survival rate after failed TAVR surgery - they declined the open heart surgery - David also wanted to decline the cuff because it was torturing Patti

0:21:15

David had a meeting with all the doctors and nurses - he had to threaten to call in the administrators and lawyers - they decide to bring Patti out of sedation to ask if she wants to consent to a cuff surgery, and she does - they wanted David to sign the consent but he refused and left the hospital - David says anyone on death's door would consent to anything

David refuses consent for more surgeries

0:22:15

They told David that if he wouldn't sign the consent, they would take Patti off pain medications for 4 hours to get her direct consent - David didn't want her to experience that pain so agreed to sign the consent - however, they were doing exactly what Patti didn't want and had expressed in her medical directive

0:23:15

But somehow the hospital had lost her directive - so they kept Patti in ICU for 48 hours and as they're wheeling her into the operating room for surgery, her heart gave out and she died - the surgeon told David 'her heart is dead, we're not going to do the surgery', a weird mechanical response

0:24:15

This hospital is building a new cardiac wing but they ran out of money - this surgeon sits of the board of the hospital and they sent out a donation form to hospital staff with their pay cheque, basically saying that if they wanted to keep their job, make a donation - David suspects they were trying to increase Patti's insurance pay out

0:25:15

Patti had great insurance, and David feels they were running up the bill - one angiogram cost Patti's insurance $150,000 - the more procedures, the more profit - unnecessary procedures is one of the health care system's biggest expenses

0:26:15

Turning back to the dental board - David was filing complaints and a lot of other people contacted him because he did an public statement - in Nevada the 'open meeting law' - so all licensing boards are required to have public meetings and allow public members to speak, and they can speak for 3 minutes

0:27:15

David was encouraged to make the public statement, his supporters said they would record it - as soon as David starts talking about doctors, David was cut off and not allowed to speak about the corruption - drama unfolds, police arrive, and David is kicked out of the meeting - the dental board applied for an extended restraining order against David so that he can never go back and speak - they claim David threatened their lives - but David had video evidence

0:28:15

David played the video for the judge and she reprimanded the dental board - but the judge also took the dental board's side about the restraining order - David was told by the judge that if he didn't like her decision, he could leave the state of Nevada

0:29:15

The judge was rude to David and tried to get him riled up so she could justify the restraining order - David says Clark County is a small place and all the professionals look out for each other - then Governor Sisolak, a democrat, is elected, ousting the republican - Sisolak has been on a lot of boards

0:30:15

Sisolak started going after the dental board saying 'he'd never seen a more egregious audit in my life' - David sees his chance and starts making public statements at Sisolak's Board of Examiner meetings with District Attorney, Treasurer - David made 3 public statements, and Sisolak liked them

Disciplinary Hearing

0:31:15An investigative journalist for the Las Vegas Review Journal writes a multiple part expose, and exposes all the nastiness with the dental board - David submits 3 new dental board complaints against 3 other dentists, totalling 6 complaints (with his other 3) - the dental board assigns one investigator for all 3 new complaints, in violation of the Governor and audits orders

0:32:15

The Governor swoops in and cancels the dental board's meeting and says they all need to come in for a disciplinary hearing for what their doing - instead, they send a republican lobbyist that represents a certain faction of the board, to tender their resignations

0:33:15

So none of the dental board shows up, they all resign - but before they resigned they fired the executive director and the attorney for the dental board - they didn't do that because they were scared of discipline, they did that because David threatened them with a lawsuit that would make them personally liable - there was a Supreme Court decision in 2015 against the dental board in North Carolina - they were trying to block the ability of consumers to access cheaper commercial dental devices

0:34:15

The North Carolina board wanted to make money - but the Supreme Court said that if the board continued to act in an antitrust manner, they would be held personally responsible

0:36:15

Making the board personally responsible was the key into opening the door to make change - the governor passed a bill to set up a patient protection commission, appointed in 2020

0:37:15

Health and Human Services deals with public health, they are not concerned with other aspects of health - David says they need to focus on human success by creating a system that gets the holistic person gets on the health care record

0:38:15

Right now it is very siloed and that increases costs and medical errors - so the solution is to make the members of the medical boards personally responsible and ensure patients are informed about all risk factors - a health record would be a bunch of 'if...then' statements

0:39:15

That patients sign off on on these 'if...then' statements - David says it is all about personal responsibility and tracking everything

Health care for profit per procedure

0:40:15

Artificial intelligence would help doctors make decisions - right now the health care system is built on a for-profit per procedure, David would make the system for-profit per success - this would force doctors to look at the whole patient

0:41:15

David hoped to be appointed as a public member on the Governor's commission - David thinks he is a bit confrontational for the doctors taste, but thinks that's what the Governor wants - conflict creates change

0:42:15

David thinks that eventually each state will have protected patient advocacy groups that are situated in every hospital and speak with every patient - there is tons of research evidence that patients should be aware

0:43:15

David says the control mechanism has to be the insurance companies, but if their colluding with the medical industry to maximize profits, we're in trouble, and that's what's happening - the number of medical devices is sky rocketing

0:44:15

David thinks the Governor needs to dictate a vision, and the Commission should fulfill that vision

0:45:15

David will speak again at the Governor's next meeting - David finds patient advocacy very rewarding - David Harold Moore on Linkedin is the best way to connect him - David's website about marijuana neutriceutal is MyLifeBak.com

0:47:15

David says that only by sharing our nightmare stories will change come - regular media is not covering our stories because the whole system has been corrupted by money - David says the solution for the dental industry is simple: minimally invasive, one tooth at a time

Connect with David Moore:

Website: https://www.mylifebak.com

Linkedin: https://www.linkedin.com/in/davidharoldmoore

_______________________________________________________________________________________

Be a podcast patron

Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions. 

Premium Patrons get access to video versions of podcasts for $5 / month.

Be my Guest

I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.

If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com 

Need a Counsellor?

Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.

If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.

**For my health and life balance, I limit my number of counseling clients.** 

Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com

   

Scott Simpson: Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.

I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. 

Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

Patient Advocacy

I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.

Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.

My golden retriever Gladys is a constant source of love and joy.

I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Remedies Counseling - Making Life Better

Have you had traumatic experiences with the health care system?

Are you living / struggling with a chronic illness? 

Do you need a counsellor with proven expertise and experience to make life better?

Book an appointment email me at RemediesOnlineCounseling@gmail.com

 

David Moore pt 1: How to fight cancer, dental boards and Nazi-esque eugenics programs

David Moore does health differently.

When David was diagnosed with stage 4 stomach cancer and given 3 months to live, he didn’t follow the usual medical path of radiation, chemotherapy and surgery.

When David’s mentor named him in her medical directive, he pushed back hard against the surgeons who wanted to give her more high cost, high risk surgeries to run up their profit.

When David’s dentist performed procedures without David’s consent, he went public - and to the state governor - to expose dental board corruption.

In part one of this 2 part interview, David Moore shares how an undiagnosed illness lead to stomach cancer, and how he cured that cancer without toxic medications.

SHOW NOTES:

Childhood trauma

0:05:15

David was born in 1970 and grew up in Cocoa Beach, Florida - David thinks the 70s were a great decade - but his home life was more like bombing in Vietnam - David suffered serious child abuse, emotional trauma, emotional neglect, molested by a babysitter, and on and on

0:06:15

David has 3 older brothers, and they were all drug addicts and highly abusive - David's mother was raped by her father for 10 years - she suffered from narcissistic personality disorder and took it out on her kids - it was an emotional Vietnam - but, from the outside, no one knew what was going on and narcissists are very clever - David's father was aloof and an engineer with NASA and was never home - David loved and adored him

0:07:15

That left David struggling in adulthood - and that can be attributed to traumatic brain wiring, making people more susceptible to addiction - they never experienced unconditional love - childhood trauma is a scourge upon the world, they pass it onto their children - David thinks about 40% of Americans have childhood trauma - but David did have an idyllic childhood, he made sure he was rarely home

0:08:15

David's focus became to empathize with everyone in an effort to understand what was going on - by the time he was 15 he decided to dedicate his life to helping other - he realized all his friends parents were messed up and that messed up the kids - alcoholics, drug addicts - but they were all rich white people, nobody was poor

0:09:15

David couldn't understand until he was in his 40s and realized that his parents suffered childhood trauma too - his mother's abuse was extreme neglect, he was a 'mistake' and she didn't want to have him

0:10:15

David thinks the neural connections didn't connect because he wasn't nurtured, as a result David has a form of autism - but it enabled him to detach from his mother's abuse - and that helped him survive that - he then focused on his friends and getting them away from adults

0:11:15

David's father was David's stability - he adored David, but he didn't speak much

0:12:15

David suspects his father was on the spectrum - he was a loner, didn't socialize - David didn't know until after his father died, that he was in the Office of Strategic Services in World War II, and he was in the CIA his whole time - he was aloof, didn't share a lot - his cover was an electrical engineer working for different government contractors0:13:15The childhood neglect caused him to scream a lot - he would wake up screaming - all the screaming created a high arch narrow palate, and that created a cranio malformation - so David's bite is totally unique

Stage 4 stomach cancer

0:14:15David's bite cannot be adjusted because of the malformation - the cranio malformation is called left side bending rotation made it so his left and right mandibular joints were out of place, but not causing pain, but dysfunctional in the sense they weren't normal

0:15:15

As a child David was a sugar addict, and in visiting dentists, he noticed that it was insanely painful - he had a lot of mercury fillings on his upper arch - but they would fall out, he would swallow them - Florida is a weird state

0:16:15

Dentists were drunk and haphazardly prescribing opiates like candy - at 16 he was given percocets - he developed a hatred for dentistry due to all the trauma with them as a child - when he moved to Las Vegas, the veneers on his teeth had cracked and they had to put on a crown - his 2 front veneers are from diving into a shallow pool and breaking his teeth

0:17:15

In Vegas they put on a crown, David is in immense pain, they give him more pain meds, they give him a root canal - the root is so infected and stinks so bad people in the room faint - David realizes the dentist let him suffer for months when he knew David needed a root canal - then David gets Celiac disease, an autoimmune disease and manifested as acid reflux

0:18:15

The Celiac disease caused David to vomit small amounts during the night and his stomach acid ate away his enamel - because celiac was undiagnosed for 5 years he developed stomach cancer - that's when David started to figure things out, the beginning of his journey - the cancer had covered up his stomach villi and he couldn't absorb food and started to starve - by the time he's diagnosed he's in stage 4 cancer and only given 3 months to live

0:19:15

David continues to eat and gets bigger and develops a bowel blockage - they wanted to do chemotherapy but David didn't have insurance - this was in 2014 before Obama Care - David decided to go raw vegan and ingest marijuana - he had read that it can kill cancer, especially if it is localized - it took him 5 years to get cancer-free

0:20:15T

o make marijuana bioavailable from eating, it has to be de-carboxylated - breaking off a carbon atom so the cannabinoid can be utilized - so it just has to be heated up for the right amount of time, then ingest and it has huge effects

0:21:15

It is also a psychotropic, as a result neural pathways are decalcified and promotes neurogenesis - most people release their power to a doctor, and David never did that - for the last 7 years of his dental nightmare

0:22:15

Doctors are treated as gods - it is like the wild west - where is all the wisdom? - now doctors are all entrepreneurs and want to make money and pay off their student loans and feel superior to everyone

else - what happened to old school dentistry?

Dental PTSD

0:23:15

Re marijuana for cancer, David says all the doctors he's talked to, dismiss it with disdain - they deny and delude themselves - if they ever faced the fact that they do more harm than good, they'll have to take responsibility for their actions

0:24:15

David is dealing with the cancer and dental issues at the same time - he'd been to over 30 dentists in 5 years, 99% in the Las Vegas valley - cranio malformation creates crowding of his lower front teeth and that caused pain

0:25:15

The pressure was pushing his teeth outward - even breathing was causing extreme pain - Obama Care had started and that allowed David to access a dentist

0:26:15

David sees a dentist who says he can fix David's upper 6 teeth - David goes for the procedure and is given pain killers and novocaine and as he's upside down in the chair, the dentist starts a hard sell for a full mouth reconstruction - David is scared, dealing with PTSD but says 'no' - the dentist convinces David to do the upper 10 teeth

0:27:15

"HMO" is a type of health insurance but if forces you to go to a HMO doctor - it allows HMO dentists to 'drill for dollars' and make a lot of money - they've been doing it for decades

0:28:15

They try to do as many procedures in as little time as possible to make as much as possible - David experiences extreme pain - just before the dentist finishes, he decides to shave down David's bottom teeth without David's permission - he shaved off 3 - 4 millimetres - as a result, the dentist had changed the guidance of David's mouth, impacting all the muscles in his head

0:29:15

That caused lower back failure and a bulging disc - David had been seeing an Osteopath doctor - to David, osteopathy is the only effective medicine in the world

0:30:15

When osteopathy is combined with an ovo-vegan diet, and marijuana, 80% of disease can be reversed - doctors of osteopathy is about energy

0:31:15

Osteopathy doctors are also MDs, but do 4 more years of education - can prescribe like a regular MD, but also have comprehensive understanding of how the body systems work together - they manipulate energy so the body self heals and reaches homeostasis

0:32:15

The osteopath helped bring David back into balance and out of pain of a herniated disc within 3 weeks without pain medication or surgery - back to the dentists: 2nd dentist tries 3 temporary over 11 months, and pushes David to pay $50k for a full mouth reconstruction0:33:15David saw a number of other dentists, who did not want to treat him or be involved - he finds out that there is a continuing education dental school in Nevada and they teach full mouth reconstruction as a way to help headaches, TMJ pain, etc

Filing complain with the dental board

0:34:15

TMJ = mandibular joint pain - the school tells dentists that will increase your revenues by more then 50% guaranteed

0:35:25

They call this 'occlusal science' - but there are other occlusal schools out there and they are awesome - the Dawson Academy is a good school - 'occlusion' just means 'bite' - and if your bite is off, you can get headaches and other problems - to fix that is not about full mouth reconstruction, it is about fixing the bite, and that's what prosthodontists do

0:36:15

Prosthodontists go to an extra 3 years of school - but now there is a for-profit education system that teaches regular dentists about occlusion, and the Dawson Academy is a good one - their approach is 'minimally invasive, one tooth at a time' - David says that if a dentist wants to do more then 1 tooth at a time, they may screw up your bite, and they they'll recommend a full mouth reconstruction for $50k+

0:37:15

Industry experts say the one occlusion school in Las Vegas is the problem, they practice 'voodoo' science - so everyone knows what's going on, but no one is doing anything about it - its about the money - going from $500k a year income to $1 million, that's a huge bump

0:38:15

There is no standard of care, its crazy - so David figures all this out and speaks out, as a result they attack, avoid and not help David - so he's going to multiple dentists, some of them speak to him off the record

0:39:15

As a result, David has been working with the governor to revamp the entire board licensing system in Nevada - David files a dental board complaint - in every US state there is a dental board that is supposed to be overseeing the dentists and protecting patients, but that's not what happens

0:40:15

For the last 30 years, all the dental boards in America all have licensed practitioners on the board - so that means dentists are overseeing dentists - but they are all in on the game of 'drilling for dollars' - so standards of care can't be developed, they are convoluted - the problem is the for-profit motive, where doctors and dentists have to make money but at the same time are supposed to be helping people

0:41:15

But they cause irreversible harm, and irreversible harm allows them to make money of that patient for the rest of their life - and that's the problem with dentistry - David's dental board complaint is denied, they side with the dentists in spite of egregious conduct

0:42:15

The Nevada dental board assigns one investigator, and that person decides everything - there is no review of the decision, no oversight of the investigator - so a lot of power - that investigator is assigned by the director of the dental board, and that investigator depends on the investigate fees

Exploiting elderly patients for profit

0:43:15

Now Governor Sisolak has come in and is changing the game - he's passed a bill, created a commission with check and balances - their plan is to reduce health care costs and protect patients, so they are a patient protection commission - 90% of all health care dollars are spent in the last 3 years of life

0:44:15

That means old people are being experimented on and exploited so hospitals, doctors, administrators can make money - the medical device industry, the pharmacological industry and hospitals / doctors have joined forces to bankrupt the country and profiteer off of that

0:45:15

Family members of elderly people are shamed into doing anything to keep their relative alive, not realizing the probability of getting better from next procedure is so small they are essentially torturing them with fear - and patients will consent to any thing to stay alive

0:46:15

Add that to medical error being 3rd leading cause of death - that's about 300k in the US per year, plus another couple hundred thousand that didn't get recorded - half of those errors are pharmacological - because doctors are so siloed none of them are looking at the whole patient

0:47:15

They should focus on the whole person - we're risking old people's lives so the hospital and medical industry can make money - the other half of medical error deaths are from infections

0:48:15

The animals we eat are all fed antibiotics, so we are continuously exposed to a low level of antibiotics and that empowers the bad bacteria in our microbiome - David says this causes 80% of all disease

0:49:15

David says all disease starts in the gut - David says that red and processed meat are the 2 biggest factors to diabetes

0:50:15

The microbiome is through our entire body - mouth, lungs, stomach, organs - that means all kinds of bacterial DNA in our body, in fact, there is more bacterial DNA then human DNA in our bodies - that means we have to work with the bacteria - 'bad' bacteria is only 'bad' when it dominates the microbiome - and it gets bad when its fed meat, bread, dairy and sugar

0:51:15

That diet makes the more 'bad' bacteria who feed off their own bile - they excrete a toxic chemical that causes inflammation, that triggers the genome, that triggers disposition to disease - that's basic epigenomology

0:52:15

If your grandparents are poorly, you become more susceptible to diseases - it skips a generation - poor diet leads to inflammation making a person even more susceptible

0:53:15

We are in a symbiotic relationship with bacteria, and if we do not feed the 'good' bacteria with fruits, nuts, vegetables and legumes then we will never be in balance with good and bad

bacteria to reach homeostasis which promotes natural healing - when we're not in homeostasis our body in under attack - probiotics are good bacteria

Cannabinoid power

0:54:15

Why don't probiotics work? Because we're not feeding them - the most effective prebiotic foods are raw garlic, cooked onions, and asparagus - these are 3 most effective foods, they contain lots of inulin - green bananas have non-soluble starch, a prebiotic - the most effective prebiotic is bioavailable marijuana

0:55:15

The cannabinoids empower the good bacteria so they produce more bacteria and bring homeostasis twice as fast as any other way - the plant material is considered a prebiotic because its hard to digest, like garlic and onions, and that's what the good bacteria like - warning: at beginning of prebiotic diet you may suffer from extreme gastritis

0:56:15

Probiotics are good bacteria, prebiotics feed good bacteria - so eating a lot of prebiotic food, may have to burp during the night, but only lasts a few months

0:57:15

David's saying that there is a medical error in that medicine is not paying enough attention to the microbiome and diet in relation to disease - surgeons, to this day, think organs in the body are sterile, but there is tons of bacteria on the organs - but in surgery, they are introducing bad bacteria and that's when everything goes to hell - we're 50 years away from this information being disseminated in the educational system, a deeply flawed system

0:58:15

A system so flawed that the FDA was founded by a bunch of petrochemical engineers - and pharmacological research being funded by for-profit companies that feed into the medical education system, and the professors are selling out for money to please the 'overlords', so the whole system is being corrupted from its foundation and it has been since its founding - they believe in ingesting petrochemicals is a medicine - we're devastating the microbiome in our guts and making us more susceptible to disease

0:59:15

Just look back in time, there had been a rise in disease - everything changed in the 90s with the introduction of GMO - and herbicides and pesticides became even more used and they've known since the 60s that they were detrimental - when they introduced GMOs, they began dousing our wheat with...

1:00:15

...a chemical herbicide from Monsanto - GMO, genetically modified organisms, they'll splice in DNA from bacteria into a plant to make it resistant to the herbicide so they can douse a whole field with herbicide and not kill the (corn, wheat, barley) plant - as a result, all our crops are sprayed with a glyphosate 2 weeks before harvest to create a greater yield of the plant

1:01:15

Then we eat all this bread with the herbicide and it kills all the bacteria in our gut - a cascading effect - David calls this a 'Nazi-esque eugenics program' designed to kill off all the old people while profiteering off their suffering - the most prolific form of evil today is modern medicine - these young surgeons thinking they are god incarnate and when someone dies on their table, they go into total denial as to their responsibility

1:03:15

David's touched on 3 medical errors: his experience with the dental industry; the food we grow and eat and its impact on our microbiome; and the over-treatment of the elderly for profit - David was also taking care of an elderly friend who recently died. David was caretaker for the last 15 years of a friend who was his Department Chair when David was an adjunct professor at UNLV - about 3 years ago she was diagnosed with aortic stenosis...

Part 2 of interview with David Moore coming next week.

Connect with David Moore:

https://www.mylifebak.com

https://www.linkedin.com/in/davidharoldmoore

_____________________________________________________________________

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Be my Guest

I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com

  

Need a Counsellor?

Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.

**For my health and life balance, I limit my number of counseling clients.** 

Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com

Scott Simpson: Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.I have been living with HIV since 1998.

I was the first person living with HIV to compete at the triathlon world championships.

Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. 

Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

Patient Advocacy

I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.

My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Daryl Brown: Post SSRI Sexual Dysfunction

We have all probably heard or read about how antidepressants can cause sexual dysfunction such as decreased libido, erectile dysfunction, decreased response to sexual stimuli, and delayed or absent orgasm. Given how widespread the use of antidepressants are, you may have personal experience with an antidepressant affecting your sexual function.

What you may not know is that research consistently finds that sexual dysfunction continues in the majority of people even after they stop taking the medication. This is known as Post SSRI Sexual Dysfunction, or PSSD. 

Less frequently, another form of sexual dysfunction may continue to manifest even after discontinuation of the medication: Persistent Genital Arousal Disorder (PGAD). This is essentially the opposite of PSSD, with PGAD causing a relentless sense of arousal and discomfort in the genitals, but without any accompanying feeling of desire. 

So this is what can happen to adults. What happens when children are given antidepressants, right through their puberty? How does it affect their sexual function?

In this episode I interview Daryl Brown about his experience with the mental health care system when he started to be medicated with antidepressants when he was 9 years old - even though he wasn’t depressed - and medicated with antipsychotics, even though he wasn’t having psychosis.  Daryl shares how it has affected his sexual function, and by extension his sense of self and his intimate relationships.

Daryl asks the tough questions of the medical system: How could he, a mere child, have been given multiple medications - for over a decade - that provided no benefit, only harm? And how is that doctors continue to deny antidepressants can cause sexual dysfunction after they have been discontinued, in spite of research and patient reports confirming the harm?

SHOW NOTES

OCD and Tourette's syndrome

0:07:15

Daryl grew up in a suburb of London (United Kingdom) with 2 good parents, they are not together, but lucky to have them - a mix of nature and the city - 2 older siblings, 1 younger sibling

0:08:15

But missed a lot of family time due to mental health issues and hospitals - and his behaviour changed on the psychiatric drugs - and he went to special needs school far away - Daryl had some movement disorder and phobias since he was a baby

0:09:15

His brother noticed Daryl had strange movements as a baby and told others that Daryl had Tourette's Syndrome before he was diagnosed - Daryl got much sicker when he was about 9 years old, his OCD (obsessive compulsive disorder) and Tourette's got disabling worse

0:10:15

Daryl OCD caused him to spin around, and do repetitive rituals in a particular way - if it didn't feel like it went right, he would have to start the ritual over again - when it got really bad it was life consuming - he lost a lot of sleep worrying - a common feature

0:11:15

OCD symptoms was frustrating for Daryl, when it got out of control - Tourette's manifested has a lot of arm movements, leg movements, constantly parts of his body moving, even if people couldn't see what was happening with his toes and fingers, known has motor tics - Daryl also had a vocal tic of clearing his throat and making a weird noise

0:13:15

When Daryl's OCD and Tourette's got really bad, it was hard to live with the symptoms, but when mild they felt like a normal part of Daryl's life - for Daryl, only when its a the extremes does is it bothersome, and that may sound strange to some people - it doesn't interfere too much

0:14:15

Daryl remembers that his school was pushed around his phobias - other kids were yelled at, Daryl was yelled at when he coloured outside the lines - he was constantly being punished and he got scared at the way the other children were shouted at as well - they pushed him really hard about his phobias, and he tried really hard to break through and he did, but it was very hard - it all became very stressful and made everything a lot worse - at one point he ran away from school

0:15:15

The OCD and Tourette's was interfering with Daryl's ability to get dressed for school and it was all a stress on his Mom as she had to go to work - as Daryl got sicker, she called the local GP and child psychiatrist and they started prescribing medications - Daryl was only 9 years old

0:16:15

The child psychiatrist was convinced Daryl had OCD and brought an orange sugary liquid for Daryl to drink - it glowed in the dark - turns out the orange drink contained an SSRI (selective serotonin reuptake inhibitor - an anti depressant) - though Daryl didn't have depression - NICE (the UK's National Institute for Health and Care Excellence) guidelines said antidepressants are the standard treatment for OCD

Antidepressants and antipsychotics

0:18:15

Daryl doesn't remember the effects of it, other than it tasted good because of the sugar and it had a cool colour - but it had no effect on his symptoms - because he was so sick he missed some school, so they visited a children's mental hospital

0:19:15

They said he needed to come in straight away - it was a diagnostic hospital, so children would be there for a year, there would be cameras watching them, and meeting with psychiatrists and psychologists and everyone in between - there was also a school so Daryl got some form of education - they put Daryl on anti-psychotic medications for the Tourette's Syndrome, also according to NICE guidelines - even though Daryl didn't have psychosis - so they are giving him both antidepressants and antipsychotics

0:20:15

The antipsychotics had no positive effect on his Tourette's, they just made his movements even more tiring on his body and upsetting - after a few months, his symptoms died down a little bit because some normality to his environment had returned and he was around other children - not because of the medications

0:21:15

Daryl's body also got used to the mixture medications, so he started to feel less tired - but he put on a lot of weight, when historically he was impossible for him to gain excess weight - Daryl also started to experience cravings, but he didn't feel in control of his actions and his emotions were all over the place, which is not like Daryl - crying one minute, angry the next, arguing with everyone, but didn't know why he was arguing but couldn't stop himself

0:22:15

It was frightening and confusing - after 9 months they confirmed diagnosis of OCD and Tourette's Syndrome - Daryl was recommended to go to a special needs school, but it was the middle of the school year and it was a nightmare to find a school - they did find one very far away, but that meant Daryl was not part of his home community

0:23:15

Daryl also continued treatment in a center that specialized in OCD and Tourette's in children and adolescents in south London - but that was also very far from where Daryl lived, so he had to go to that center and then school, and it was too much traveling and stress - and Daryl wouldn't say there was any real treatment - they expected Daryl to continue to take the antidepressants and antipsychotics, there was no plan to come off of them - it was expected that Daryl take them, no questions asked

0:24:15

Living away and going to another school was hard - if Daryl was strange to the other children in the community before, he was a lot more strange when he was removed - he would get teased in the street, and that got worse

0:25:15

Daryl really missed out on any thing in the community and didn't have a social life or a normal childhood - he was a normal intelligent child and wanted to do what every body else was doing - he did get to go home on weekends - the treatment center maybe helped with some of the phobias Daryl had

Seizures. Brain Tumour?

0:26:15

Daryl stopped going to the after school day center after about 2 years - but there was no plan to stop the medication - sometimes there were promises that maybe one day in the future if their treatment miraculously works, he might be able to stop the meds - but there was no realistic plan to stop them, even when he stopped going

0:27:15

Daryl continued on the medication until he was living on his own and was 21 years old - Daryl had some seizures and passed out a couple of times - he didn't know yet it was from the medications - Daryl just attributed the new symptoms to OCD and Tourette's

0:28:15

Even though it was a special needs school, Daryl joined the football (soccer to North Americans) team and started to lose the excess weight - but it was hard to run, he was wheezing, because of the medications - but it was good to play football for the short periods he could - because the meds changed Daryl's behaviour so much, he was always arguing and he wasn't the same person - their only explanation was that Daryl had mental illness - as a result, Daryl lost contact and relationships with his siblings

0:29:15

The medications also blunted Daryl's impulsivity - he ran into traffic once - Daryl knows that he did not think that way before the meds, or since he stopped the meds - another time he took all his meds at once, not to kill himself, but because he couldn't stop the impulse

0:30:15

When Daryl was 21 years old he got very, very sick - and his erections stopped working properly - his penis wouldn't respond as it previously had with women - nor was he having the spontaneous erections like other young men

0:31:15

That was very scary - Daryl looked at the leaflets for the medications and saw sexual dysfunction far down the list - he went to the psychiatrist and he said it was probably the medications, we know about this, go off the medications and every thing will go back to normal - he just had to get a blood test to check on things - the results showed that Daryl's prolactin was through the roof - and wouldn't go down for a long time and they said that was impossible, 'nobody's prolactin stays that high'

0:32:15

They thought maybe it was a brain tumour causing high prolactin, but didn't really elaborate and left Daryl thinking he may have a brain tumour and wondering how long he has to live - but it wasn't a brain tumour, his prolactin levels normalized but his thyroid was messed up - eventually his blood tests normalized but the symptoms didn't go away and his 'willy' never went back to normal - the doctors kept fobbing him off, 'sometimes it takes a couple of weeks' - 'sometimes a couple of months' - then they said it was impossible because the drug had completely left his system and it had nothing to do with them

Withdrawal weirdness

0:33:15

Then they started to say it was caused by a mental illness - the withdrawal actually caused a weird psychosis, deluded and confused thinking and weird adrenaline, all sorts of symptoms like brain zaps, even to his genitals when they were over-sensitized during withdrawal, like when he ejaculated when he was shopping, it is known as PGAD - Persistent General Arousal Disorder - and this is known to happen temporarily during withdrawal - but at 21 Daryl knew this was not normal

0:34:15

But the doctors and psychiatrists didn't believe in that, but Daryl knew full well what was going on and wondered how little did they know? - he looked up on the internet the medications he was on - they had added another med, Lyrica, to his antidepressant and antipsychotic, and the doctors touted how is was a 'wonder drug' and 'amazing'

0:35:15

Who knows how many other people they've given it to - its classified as a class 3 drug now, a street drug - Daryl never had an apology for that either - so he had to withdraw from all of those meds - they don't know how these meds work, even the drug companies don't know how or why - Daryl felt fear realizing for the 1st time how little these psychiatrists and psychologists really knew

0:36:15

The anxiety caused by withdrawal was a lot to deal with - also brain zaps, a full body 'electric shock sensations' during withdrawal as described in the NICE guidelines - Daryl started by tapering off the medications by cutting up the pills, but at 21 and his dick not working, and realizing the so-called experts didn't know much, was very scary and he wasn't going to keep taking them - he completely stopped taking them after about 4 weeks because they were making his dick numb and not work

0:38:15

Daryl wanted to know who did this to him and why - he felt targeted in that they were giving a child with disabilities medications that they did not know how it would affect him, its really abusive and he didn't feel like he was safe - and it is very lucrative for these pharmaceutical industries and in reality it is very dangerous and nobody stepped in any where

0:39:15

When Daryl was off the medications, there was no change in his OCD or Tourette's symptoms - there was no need to take these substances - Daryl says you would think they would have questioned that

0:40:15

Daryl advocates for safety measures to be taken and joined the Everyday Psych Victims Project and he's interviewed a few people who've been through the mental health system to give them and himself a voice - there is a 'side effect' charity with some psychiatrists and psychopharmacologists that know about this and have read the research, they're called Rxisk http://www.rxisk.org/ - and they are very aware of the permanent sexual side effects of antidepressants

Brain Zaps and a Marathon

0:41:15

Both SSRIs and SNRIs - they've started a campaign to raise money and awareness - so Daryl signed up for a marathon to raise money and awareness for them - but it is hard to ask people to give money because your dick doesn't work - and it is not a mainstream charity, and some people won't donate for that reason - but Daryl followed through and did the marathon even though he missed all the training due to injury, but managed to finish somehow

0:42:15

Daryl has always liked sport, football, exercise - during withdrawal needed to distract from the horrible physical symptoms, and one of the ways to deal with that was to go for a run - doing sprints especially helped to manage his adrenaline - however, it felt like his life plans had been thrown out the window and he was very upset about what had been done to his genitals

0:43:15

But it doesn't just affect his genitals, it affected everything, how he felt and related to the world, especially at that age - so he focused on sport as a distraction, and that gave him some experience for the marathon, but he only played football twice about 2 weeks before the marathon - he ran until about half way then started walking and the last 10 kms was painful and a 6 hour finish time

0:44:15

Daryl tried to train through the injury as much as he could, but it came to a point where he was doing more damage - but he was determined to show up at the start line

0:45:15

He thought he would walk it, but when you line up at the start line you run with everyone else and he just tried to keep going - the music, crowds and kids cheering so he kept going as far as he could

0:46:15

With the brain zaps, his dick not working properly, or ejaculating sporadically, and pain in stomach - and that has not gone away, there is not a day that he is not constipated - Daryl had been medicated for over a decade, all through puberty

0:47:15

It impacted his emotions, angry one minute, sad the next, hyper the next - impeded his ability to think - he had to untangle his delusions and illusions - the adrenaline and emotions were all over the place and exercise even those out a bit - Daryl will turn 30 soon

0:48:15

In his early 20s it was extremely difficult to socialize, he felt like an alien, and he didn't want to do those things like flirting - it was horrible to be the only one in the world in that situation0:49:15He didn't think he'd ever socialize again, he wondered what planet he was living on - there is less pressure now to be flirtatious, so its a little easier - but he still often feels terrible when he compares himself to other people - so it still affects him a lot, but less so

Post SSRI Sexual Dysfunction

0:50:15

Daryl still has quite a lot of pain, the stomach pain can be quite nasty - he does part-time work and volunteering, but the social part of his life is always missing - he has a leg injury from 2 years ago and still no diagnosis and he's limping very badly, he barely made it down stairs this morning, and this is after having hip surgery - there is talk of a hip replacement and pain killers but not sure what will happen with that

0:51:15

His hip and leg problems could be due to pressure from his bowels, he doesn't really know - and there has not been much research on side effects of psychiatric drugs - and he's been put off seeing doctors

0:52:15

Daryl likes watching football, but would rather be playing - he likes writing songs on his guitar and going for a jog - so exercise is a big part of self care and he's not sure what he'll do if his leg doesn't get better - though it hurts a lot to play guitar

0:53:15

Daryl has a couple of good friends that he could tell what has happened to him and they still liked him as a human being and that helped a lot because he felt he wasn't interested in flirting any more - some people thought he was going through a strange weird period, or was dealing with trauma, and that pushed people away as well

0:54:15

Daryl was wary to be public about his experience, set up a website and did a couple of videos, and started telling people in his life as well, to share his experience

0:55:15

There was no outpatient groups for adults, and they weren't allowed to socialize with other patients outside the hospital or clinics - one of their concerns is they don't want patients to meet, and they don't want patients to talk about their experiences with medications - Daryl thought he was the only one having this side effect and was on his own, and wasn't allowed to talk to the others to see if they also had this side effect - it is called Post SSRI Sexual Dysfunction (PSSD)

0:56:15

It means that the sexual side effects of SSRIs continue even after you stop taking them - he discovered others on the internet and that's when he decided to do something about it, since keeping it a secret wasn't working so well - it felt good to know there was other people, and that he was doing something about it - he also found other people that had bad experiences in the mental health system as well like Speak Out Against Psychiatry, Friends of East London Loonies, and The Every Day Psych Project

0:57:15

Daryl doesn't want this to happen to any one else, and the lack of regulation - it is criminal except they've got themselves covered legally - there is no reason except bank balances and careers that are set up on misinformation and secrecy and it needs to stop - and Daryl deserves validation that itactually happened instead of living his whole life with some imaginary thing that isn't happening

Doctor Denial of PSSD

0:58:15

When he was a child, being around other children also going through similar experiences was good, but the drugs were not necessary

0:59:15

The school could have been more accommodating to a child instead of being so aggressive when that child wasn't exactly how they wanted them to be - but the staff were nice - he was scared before going in that the staff would be in white coats and do weird experiments on him, which they did, but not that they were collecting the data on their experiments - the staff were nice and well meaning, but obviously somebody should have intervened and stopped them from drugging every one into oblivion

1:00:15

His relationships now with his parents is good, but its taken a chunk out his life - when Daryl told his Dad about PSSD, his father said he was worried this would happen - his Mom was upset to, she was lied to and told the meds were safe - but the doctors insist that there can't be any permanent harm once the meds are out of the system - there is no risk, 'there's nothing to lose' as they say

1:01:15

They try to convince any one in his life that Daryl is mad and its not real - and they tried to turn his family against him and not to believe him - so its obviously very upsetting to go through - when Daryl was going through withdrawal he was paranoid so it was difficult to speak to his Mom and Dad - and he missed out a lot of life with his siblings

1:02:15

Daryl feels like his OCD and Tourette's symptoms are part of him, and they are not always at their worse - so its not the worse thing in the world - Daryl has hunch, in listening to other parents, that vaccines as babies may be causing tics and stuff - but there is a lack of research on vaccinations as well

Connect with Daryl Brown:

Twitter: @RunAgainstCastr

Daryl's blog: PSSDblog

Daryl's marathon campaign

Info about Post-SSRI Sexual Dysfunction: Rxisk

The Everyday Psych Victims Project - Their YouTube and Twitter

__________________________________________________________________________

Be a podcast patron

Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions. 

Premium Patrons get access to video versions of podcasts for $5 / month.

Be my Guest

I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.

If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com 

Need a Counsellor?

Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.

If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.

**For my health and life balance, I limit my number of counseling clients.** 

Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com

Scott Simpson: Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.

I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. 

Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

Patient Advocacy

I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.

Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.

My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Remedies Counseling - Making Life Better

Have you had traumatic experiences with the health care system?

Are you living / struggling with a chronic illness?

Do you need a counsellor with proven expertise and experience to make life better?

Book an appointment with me at RemediesOnlineCounseling@gmail.com

 

 

Robin McGee: The Cancer Olympics - How 4 doctors missed Robin's cancer and how you can avoid the same fate

Clinical psychologist Robin McGee, author of The Cancer Olympics, had a family history of colorectal cancer, so when Robin started to see blood in her stool, she reported it to her doctor. That doctor dismissed her symptoms as a probable infection and didn’t bother to investigate potential cancer. 

Robin’s bleeding got worse. A second doctor also thought it was from an infection. Robin also told this doctor about her family history of colorectal cancer. The doctor made a note in Robin’s health record, but did nothing about checking for cancer.

Robin’s bleeding worsened and she took it upon herself to get a cancer test - the results were sent to doctor #3. The results indicated Robin had cancer. The doctor wrote in Robin’s health record that he sent her for further testing. But in fact the doctor did nothing. 

Robin’s bleeding worsened even more and now included dark red blood. A 4th doctor is not concerned and scheduled Robin for a colonoscopy many months later. It had been nearly 2 years since Robin first reported her symptoms to a doctor. The colonoscopy results indicate Robin had stage 4 colorectal cancer.

Four doctors should have caught Robin’s cancer earlier than stage 4. All 4 doctor’s have fatally failed Robin.

Unfortunately, as we’ll hear Robin report, this was not the end of serious medical errors she would encounter as she begins her fight with cancer - and her fight for justice.

  

SHOW NOTES

Family history of colorectal cancer

0:07:00

Robin grew up in Ottawa, Canada as the 6th of 7 children - and now lives in Nova Scotia (Canada) - went to university and got her PhD in Clinical Psychology and practicing clinical psychologist for 30 years

0:08:00

Robin's mother had colorectal cancer - in 2008 Robin had some rectal bleeding and went to see Doctor #1, who was a locum for Robin's family doctor, Doctor #2 - Doctor #1 dismissed Robin's bleeding as perhaps C Difficile, a pretty serious infection, and sent Robin away to get tested for it

0:09:00

But the C Difficile test was cancelled because Robin didn't have a liquid stool, a prerequisite for C Difficile testing - the test results came back to Doctor #1 who did nothing - Robin's bleeding continued and she went to Doctor #2 but was bleeding heavier with skin sluffing - but Doctor #2 also dismissed the bleeding - Robin reminded the doctor of Robin's family history of colorectal cancer and the doctor made a note - she sent Robin for C Difficile test (again) and it was cancelled (again)

0:10:00

Doctor #2 sent a referral to a general surgeon, Doctor #4 (yes, #4), but her note didn't mention severity of Robin's symptoms, duration or family history - Doctor #2 was also closing her practice and Robin found a new family doctor, Doctor #3 - both # 2 and 3 knew Robin professionally

0:11:00

Robin arranged herself for a cancer test and it can back positive: Robin had cancer - that positive result went to Doctor #3 who did nothing - Robin went into to see Doctor #3 and reported greater symptoms and he said Robin needed an colonoscopy and would follow up

0:12:00

Robin felt relieved that a doctor was going to take her symptoms / cancer seriously - but Doctor #3 did nothing at all - he knew Robin was positive for cancer, but did nothing - but Doctor #3 wrote in the electronic health record that he had followed up with referrals

0:13:00

Robin waits for referrals but her symptoms are getting even worse, so she calls Doctor #3 and the office says 'not our problem, call doc #4' - Robin immediately calls #4 / surgeon and they say 'not our problem - there are no resources and there is an 18 month queue - you have to wait'

0:14:00

Meanwhile Robin's symptoms get worse, including dark red blood - and she continues to try to get a correct diagnosis - she tried 18 times - finally Robin gets into Doctor #4 - dark red blood is a sign of cancer, but the doctor says Robin is fine - Robin pushes for a colonoscopy and the doctor schedules one for many months later - Robin gets the scope and finds out she has Stage 4 cancer - according to Canadian guidelines, there should be no more than 8 weeks / 60 days from patient's first symptom report to diagnosis

Secretary triaging cancer patients

0:15:00

But Robin waited 661 days - subsequently, the provincial College of Physicians took a look at Robin's case and found other serious failures - and those doctors were disciplined by the College

0:16:00

Doctor #4's conduct was disturbing: had many, many years before had abdicated triaging of patients to her high school educated secretary - who decided patients under 50 don't get colorectal cancer and didn't schedule Robin for a colonoscopy0:17:00Initially they thought Robin's cancer was stage 3, 'curable' - it was a horrifying and devastating time with a 15 year old child at home - Robin had to drop everything and for the next 2 years suffered brutal cancer treatment, multiple surgeries, chemotherapy

0:18:00

The treatment worked, and Robin was in remission for 6 years and then the cancer returned - Robin experienced another serious medical error: the 2 cm cancer was missed by a radiologist and wasn't noticed until 6 months later when it was 9 cm - Robin had to endure more brutal treatments, more multiple surgeries, more chemotherapy - some of the surgeries had complications that required more surgeries - Robin has only been out of treatment for 6 months

0:19:00

Colorectal cancer is one of the most preventable if caught early - expert testimony confirmed that Robin would not have had to endure all the treatment, surgeries, chemotherapy if she had proper care and diagnosis initially - in the 7 years of medical malpractice lawsuit, the defence could not find one expert able or willing to defend the standard of care Robin received

0:20:00

It is unusual for Colleges of Physicians to find against their doctors, so the decision in Robin's case attests to the severity of negligence, it was 'indefensible'

0:21:00

The 4 doctors had made multiple efforts with Robin - these errors they'd done 1,000s of times, but because all 4 behaved irresponsibly collectively, the result was Robin with stage 4 cancer - Robin approached her medical error experience in 3 ways: complaint to College of Physicians and 3 of the 4 were disciplined

0:22:00

The lawsuit took 7 years - but with the radiology error, Robin decided on a 3rd approach: since it was in a hospital, she used the internal complaint process

0:23:00

There were also errors and challenges with that process - the 'apology practice' was kind of bungled - but in Robin worked with the province to change that policy - a positive remedy coming out of her complaint0:24:00"Error and apology practice" - hospital policy about responding to patient harm - there is legislation in Canada that a doctor's apology is not admissible in a court of law - Robin notes that a physician's apology has never been used against them in court

College of Physicians complaint experience

0:25:00

The complaint process with the College of Physicians and Surgeons was lacking - when Robin first contacted the College she said that she knew 2 of these doctors and considered them colleagues, and asked if they could all get in a room to discuss - Robin was very, very sick at this point with chemotherapy and radiation and at the brink of death a couple of times and needed to minimize her energy outlay

0:26:00

The College responded rudely, bruskly with a huge back in tone - Robin was ambivalent about making a complaint until that call - she realized this was the thin edge of the wedge of how medicine defends itself and shuts down people

0:27:00

Robin was inflamed by the call and decided to take her complaint as a result of how the College responded - the process was in favour of the doctors - psychologists are really good at documenting and created a binder for each doctor

0:28:00

Listed all the errors of each of her doctors with index and references and appendix and gave her 4 binders to the College - the physician gets to respond to Robin

0:29:00

The College said they would talk with her but she had to show up on X date, the same day Robin was to have surgery - the College response was "that's your problem, these doctors are busy"

0:30:00

Fortunately for Robin, another hospital bungle had her surgery date postponed - Robin did get to meet with just 2 people from panel of 7 that were to hear her complaint - but all of those 7 got to speak to all 4 physicians, but Robin the patient only got to speak to 2 - so not a patient friendly process - Robin feels strongly that any time a patient is harmed the hospital should speak to the patient as well as all of the investigation committee

0:31:00

They need to see the human face of the victim - the investigative panel of 7 is made of 6 physicians and the wife of a physician is the 7th, representing the 'public' - Robing says the College complaint can enforce a change in the doctors practice

0:32:00

The College sent Robin a letter saying 'this is what we said to Doctor x' - Robin is not sure if she received all the text of the letters sent to the doctors - they did force Doctor #4 to do her own surgical triage, and not her secretary - did they audit her to make sure she did that? Robin doesn't think so.

0:33:00

They identified a number of errors and factors with each doctor and instructed all doctors to make changes0:34:00Robin believes Doctors #1, 2 and 3 were conscientious physicians who would adhere to the Colleges instructions - Robin is less confident Doctor #4 changed her practice, but has since retired

Too young to get cancer?

0:35:00

Robin felt the remedies for the doctors was insufficient - Robin thinks all of them should have been sent for specific training on diagnosing colorectal cancer because each of them told the College that people under 50 don't get colorectal cancer - the College said, 'but she's got symptoms and family history, so....' - in the US the screening age has been lowered to 45 - no longer an old man's disease

0:36:00

Robin thinks they needed that training so they practiced correctly - but that wasn't a remedy the College applied

0:37:00

Robin found the College process, not destructive because she did a thorough job on preparing her documentation and relied on that knowledge to manage her emotion of fear they would not listen to her

0:38:00

Robin felt it was their obligation to protect the public, she could only do what she could do as a witness - but as the things got worse with the College, Robin was also dealing with vomiting, bring burned by chemo, and feeling horrible - but getting to the keyboard to work on her complaint was therapeutic and empowering - it also empowered her when she launched legal action with a team of lawyers

0:39:00

Medical malpractice is not for sissies - lawyers for physicians take a scorched earth policy, hire investigators to spy, they stoop to low levels to intimidate a patient - even though there was much pain and struggle in the lawsuit it was empowering - in the end her case was settled out of court for an undisclosed sum of money

0:40:00

But it was a 7 year process to get a settlement - the secret hope of physicians and their attorneys is that the patient will die so the case will die with them

0:41:00

Robin had to move to Toronto for 6 months to get cancer treatment and she had to pay those expenses - she had a lot of cost attached to care and she needed that money to survive

0:42:00

After Robin finally got a diagnosis, and after she found out all the doctors had failed her, and after her surgery, she found out that the best chemotherapy treatment for her type of cancer was not available in Nova Scotia, it was available in every other province, in the US, New Zealand, Australia, Europe, but not where Robin lived - Robin lobbied the govt to include that chemo treatment

0:43:00

The opposition party got involved and in the end she was successful in getting the province to include that chemo treatment, but it was too late for Robin to receive it - but since then over 1,000 Nova Scotians have had access to that treatment, no small feat - Robin's book, The Cancer Olympics, tells Robin's story

0:44:00

But it was a bitter sweet victory, as it was too late for Robin and that may be implicated in why her cancer re-occurred - Robin will die a martyr for her own cause

More medical with another cancer diagnosis

0:45:00

Robin first bout of cancer and treatment was 2 years long in 2010 - it came back in 2017, 6 months late due to radiologist error - Robin endured more horrible cancer treatment, lost her hair, her mouth turned into 1 big sore, horrific suffering - worse then any thing she'd ever experienced - she had 10 hour surgery to debulk the cancer and that had horrific complications causing more suffering, but had to wait 15 months for surgery in Toronto to correct complications

0:46:00

The surgery was March 2019 and she returned home June 1st - Robin's wisdom is for cancer patients to feel the feelings they are having

0:47:00

Instead of fighting those emotions and trying to supplant them with 'positive thoughts', she let her emotions come - don't give yourself the burden of not validating your own feelings

0:48:00

Taking on the medical establishment in multiple ways brought meaning to her life, when the establishment treated her like her life meant nothing - one doctor said to Robin 'you're in my margin of error'

0:49:00

Advocating has given her suffering and eventual death, meaning - while the complaints to the College and hospital are noble, they don't do anything for the patient - the lawsuit got Robin money that paid for her care (caused by medical errors)

0:50:00

Her family is deprived of Robin's income when she dies, and they are entitled to that - recently a mother of 3 with a terminally ill husband with a missed diagnosis, didn't want to sue and 'look greedy' - Robin explained that she was entitled to compensation to care for the kids

0:51:00

Many people fear launching a lawsuit against the Goliath medical industry - Robin encourages those with strong suits to move forward, it won't be as bad as they think - they have every right to pursue lost income

0:52:00

Some cases may be futile, but others will be worth it - in the US there is 'pain and suffering' compensation, but in Canada those amounts are capped at about $350k

0:53:00

After legal fees, Robin got about 60% of what she would have earned in income - that money is helping her survive today - and do some traveling with the time she has remaining

0:54:00

Robin would hear about medical errors from clients - she had a lot of medical admin bungling in the past and had learned to follow up on referrals herself - as many as 30% of fax referrals go missing - a 1 in 3 chance your referral never made it to the specialist

0:55:00Robin has one surgery postponed because the fax machine at the hospital ran out of ink, for days images sent to the hospital were unreadable

80-15-5 Rule

0:56:00

Robin goes for scans in the new year to see if the cancer cells have proliferated - eventually they will grow and kill her - her latest chemo usually gives about 48 more months of life, so she has about 2 years

0:57:00

Robin learned from another patient that it is good practice to demand that any of your imaging gets read by 2 radiologists - and Robin gets this done now

0:59:00

Lived experience is important for any profession to be better at their job - as a child psychologist, it is known that there is the '80-15-5 Rule' - meaning 80% of people are conscientious and follow the rules

1:00:00

15% of people are impaired, addictions, personal problems, distractions - 5% are rogues: stop signs and traffic lights are for other people - every profession has this, including the medical profession

1:01:00

The average person does not know if that there is a 1 in 5 chance of encountering incompetence and potential harm, a 20% chance

1:02:00

Robin's physician clients were in the 80% of conscientious people and she remembers them respectively - but her nursing clients were more likely to tell Robin about medical errors and how they couldn't report it because they'd lose their job

1:03:00

Whistleblowers are brave, and vulnerable people in this backlash culture - due to all the medical errors, Robin had to find a new family doctor - she learned that other doctors in the community were against him for taking on Robin

1:04:00

Robin's book, The Cancer Olympics, is well researched, 'no stone unturned' - sometimes she wonders if the doctors that were against her new family doctor read her book and realized that Robin really was harmed repeatedly and their colleagues did screw up

Lawyers, lies and lawsuits

1:05:00

Robin has had a number of people in the medical profession contact her after the book was published - some of them were supportive and confirmatory - some doctors do take patient stories and use them to improve their profession, but other doctors just don't want to hear - you can't make a purse out of a sows ear

1:06:00

One of the doctors in her case, a colleague she'd known for years, they'd been at many meetings, testified under oath that he didn't know Robin

1:07:00

After the lawsuit, Robin thought 'he'll never forget my name for as long as he lives' - lawsuits seem to bring out the worse in people - but the lawsuit exposed some horrible practices

1:08:00

The Cancer Olympics is available on iTunes, Amazon, Indigo - also available on Audible in audio

1:09:00

Robin has become super active in patient advocacy - setting standards of care for physicians and colorectal cancer - now with Patients for Patient Safety Canada Robin is doing presentations and advocacy work, and recently spoke with the Nova Scotia Minister of Health

1:10:00

The asked the Minister to ensure that patients harmed by medical care, should get a copy of the investigative report in writing, and a patient on the investigative committee

1:11:00

Robin is doing a little bit of her psychology work, but has another surgery in the new year - Robin doesn't have a ton of time left to live, but is committed to fighting cancer and her intent is to help patients broadly and cancer patients specifically, and all harm to patients, for as long as she can, until the end.

1:12:00People have asked if Robin will write a sequel - she does have a blog, The Cancer Olympics were she describes her cancer experience in classic rock and roll songs

Twitter: @TCOrobin @TCOrobinF

acebook: https://www.facebook.com/TCOrobin/ 

Website and blog: The Cancer Olympics

____________________________________________________________

Be a podcast patron

Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions. Premium Patrons get access to video versions of podcasts for $5 / month.

Be my Guest

I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com 

Need a Counsellor?

Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.

**For my health and life balance, I limit my number of counseling clients.** Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com

Scott Simpson: Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.

I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

Patient Advocacy

I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.My golden retriever Gladys is a constant source of love and joy.

I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Remedies Counseling - Making Life Better

Have you had traumatic experiences with the health care system?Are you living / struggling with a chronic illness? Do you need a counsellor with proven expertise and experience to make life better?

Book an appointment with Scott online at RemediesCounseling.com

RemediesOnlineCounseling@gmail.com

 

Michael Zuk, DDS: Confessions of a Former Cosmetic Dentist

Dentist Michael Zuk, author of “Confessions of a Former Cosmetic Dentist”, is a whistleblower about the dangers of some dental procedures being pushed by corporate entities that are prioritizing profits over patient safety.

There are a lot of continuing education programs for dentists, but there is also a hidden element where corporate interests will train dentists to benefit the corporation, and that can cause serious harm to patients.

Most dental seminars have an underlying corporate interest or group that is benefitting - and the dental associations have not weeded out the courses that offer voodoo science and procedures that are unnecessary - some of the procedures are so new they haven't been tested on people.

Dentists can take a weekend course and start practicing that procedure on Monday morning - with patients as guinea pigs. Dental authorities have known for decades about these dangerous procedures but have been unable to make a dent in stopping them because the underlying problem of making money is influencing the treatment dentists recommend to patients.

Michael’s "Confessions of a Former Cosmetic Former Dentist" book caused a big pushback from his dental authority. Michael’s book has been banned by the Alberta Dental Association and College and forced him to take it off the market because they felt (ironically) it was harming the integrity of the profession. The topic of the book was over treatment by cosmetic dentists and the reasons why, and it is still available on the after-market.

Forcing Michael to pull his book from the market is a prime example of how the dental association is involved in a cover up of harmful dental practices and don't want the public to know about needless procedures that can cause permanent damage.

SHOW NOTES

Like father, like son

0:07:15

Michael grew up in Spirit River, Alberta - north of Grand Prairie - population 1,000 - Michael's father was minister, who also got into politics and became Mayor - and got into trouble mixing politics and religion, and Michael is following those footsteps and causing trouble himself - Michael's father was sued and forced off council for bringing attention to conflicts of interest

0:08:15

Some of those people were also in his congregation, so he was forced out as a preacher too - they tried to force him out of town, so he bounced around different jobs, like a cook - but others would get him fired - his congregation was told that they wouldn't get the sale price at the local grocery store

0:09:15

Michael did 1 year of college, 2 years of pre-dental study in Edmonton, then 4 years of dental school - graduated and opened his practice in Red Deer, Alberta in 1987 with a fellow student and they've been practicing dentistry ever since - Michael was good in science, on the quiet side, and enjoyed art, and these lead him to the dental profession

0:11:15

Molding and designing smiles requires artistic ability, blending with science - but this has also created problematic grey zones - initially in his practice, he was learning the hard way of what worked and didn't - later Michael learned there were a lot of continuing education programs, but also another side where corporate interests will train you to benefit the sponsor, and that can cause serious harm to patients

0:13:15

Most dental seminars have an underlying corporate interest or group that is benefitting - and the dental associations have not weeded out the courses that offer voodoo science and procedures that are unnecessary - some of the procedures are so new they haven't been tested on people

0:14:15

Patients become the guinea pigs - dentists can take a weekend course and start practicing that procedure on Monday morning - or dentists order 1,000s of dollars of products and equipment after being sold by amazing presentations

0:15:15

Some courses are just slight modifications to existing practice, but some seminars are organized similar to 'condo sales' where they try to get dentists as life long clients, or hook them into more seminars - the focus should be on quality of courses using standard of care, or using voodoo science - in some cases, dental authorities have known for decades about these dangerous procedures but have been unable to make a dent in stopping them

0:17:15

Because dentistry is a blend of art and science, there is no one right way to do dentistry - for example, orthodontists don't agree on what defines 'straight teeth', so each approach may have slight differences - so there are many different approaches - each dental authority will have representatives from each school of thought, and by corporate interests that can make changes to regulation

 

 

Corporate seminars

 

0:19:15

Most of the time dentists are paying 100s or 1000s of dollars for courses - some may promote an approach that favours their corporate sponsor, but doesn't meet the standard of care

0:20:15

Early in the 90s, Michael thought cosmetic surgery would be his practice, with porcelain veneers and porcelain crowns and did a number of courses, but the treatment they were talking about was aggressive - for example, drill healthy but crooked teeth and cover them with porcelain so they look straight - this often also required root canals due to the drilling

0:21:15

To Michael, that was an obscene and inappropriate and conflicted with his approach to drill as little as possible, but most courses promoted drilling to put in crowns - the underlying problem of making money, influenced the treatment dentists recommended

0:22:15

Michael learned the courses could not be trusted to teach what was appropriate - and if there was a problem, the corporates wouldn't come to defend the dentist - so Michael didn't trust the courses, or the equipment they were pushing, and doesn't provide the benefits they advertise, and that is an embarrassment to the profession

0:23:15

There are dental device certification programs but they are not very stringent - and the studies cited are not of good quality and are cherry picked to support claims - under scrutiny, many of these seminars would not be producing benefits they are promoting

0:24:15

There is a quiet movement within the profession to push back against these corporate seminars - orthodontic companies have been known to lie and exaggerate benefits of their products - even though studies may show a product does not work, it will still be sold at industry trade shows - not every dentist is aware of these issues and can take years to pull them off the market

0:26:15

Michael wrote a book, "Confessions of a Cosmetic Dentist", but it has been banned by the Alberta Dental Association and College forced him to take it off the market because it was harming the integrity of the profession - the topic of the book was over treatment by cosmetic dentists and the reasons why - the Alberta Dental Association considers themselves the global work police

0:27:15

They even took a look at seminars Michael had given in Florida as the 'uncosmetic dentist' to encourage them to do more orthodontic and less veneers and have tried to make Michael look bad - his book being pulled is an example of how the dental association is involved in a cover up and don't want the public to know what is going on

0:28:15

Michael's book is still available in the after-market - he had sent a copy to CBC's Marketplace tv program, Your Money is Where Your Mouth Is, where they went undercover - a 15 year girl came to Michael and had been told she needed all of her teeth capped and crowned for sensitivity, and that would have required drilling down to stumps and she would have been irreversible harmed for life

 

 

Motivated by money

 

0:29:15

Her gum sensitivity went away in a couple of weeks of using Sensodyne toothpaste - over treatment is unbelievable - they are motivated by money, but to Michael it is more about being mislead by these seminars where they think they've been trained properly on legitimate procedures

0:30:15

These dentists are like terrorist bombers that have been convinced to give up their life for a cause, and most of these dentists truly believe what they are doing is correct - for example, in dental college, they are taught to refer full mouth reconstructions to o prostodontists, but the seminar will convince the dentist they have the skills - and patients are losing their teeth prematurely because they listened to their dentist

0:31:15

Scary to think they are wiping out the patient's life savings and dooming them to a life time of replacement teeth - in these cases patients are losing their teeth

0:32:15

Michael says it was a mistake by the dental authority to have his book removed from sales, because a few years before they sent out an article titled "I have had enough" about the problem with continuing education courses and over treatment on unsuspecting patients and said cosmetic surgery had turned into a monster

0:33:15

It was clear the Alberta Dental Authority sent it out to scare dentists about over treating - but on the back of the newsletter for 20 years was the company that had been selling these seminars and getting awards from the Alberta Dental Association and College - and given the "Friend of Dentistry" award from the Canadian Dental Association - but promoting very irresponsible and getting the highest award

0:34:15

The Alberta Dental Authority (ADA) was paid every month to advertise these seminars and giving credits for these seminar courses - and then flying Alberta patients to Las Vegas for treatment where they do not have licensed or malpractice insurance

0:35:15

Michael has reported this practice to the ADA but has had no response - they did not want to embarrass their friend - when patients did complain, they were given the cold shoulder - one of Michael's dental assistants was flown to Las Vegas by another dentist and to this day will tear up because her teeth were drilled down to stubs but were only a little crooked

0:36:15S

he needed root canals and now they ache and she got no help from the ADA - Michael believes in the next few years more patients will know of this and raise hell - this is a global problem, these seminars reach dentists all over the world, and dental victims all over the world

0:37:15

Recently the Ontario Dental College has said that neuromuscular dentistry is not approved for full mouth reconstruction or headache treatment - 'neuromuscular dentistry' electronic pulses of the jaw muscles to find the 'perfect' bite - when Michael was in dental school, one the gurus of this approach taught at Micheal's school, and he saw first hand how it was done, and now it has been twisted so they have an excuse to use a full mouth crampons

 

 

Dental associations turning blind eye

 

0:38:15

ODC would not have come to this decision lightly - Manitoba has joined - now these 'neuromuscular' dentists are calling themselves 'physiologic' dentists - they just changed the terminology, the procedures are the same - but the dental associations are not moving fast enough

0:39:15

Michael took it upon himself to notify all the Canadian provincial and most US state dental boards about this important statement of the ODC - he's had some responses - Nevada dental board is being torn apart by the Governor because a victim is standing up to the corruption within it - Nevada and Alberta dental boards are joined at the hip to promote this 'treatment'

0:40:15

Patients are not getting represented in this problem, dental associations are turning a blind eye - an example, a patient was mislead about a sketchy procedure and harmed and complained to the ADA who decided to make an example out of the dentist, but failed to mention the procedure that caused the harm - the ADA spent upwards of $1 million in legal fees going after this 1 dentist

0:42:15

The patient got $11,000, so something wrong with the system - the lawyers don't want to change it, they're making a lot of money - if a harmed patient comes to a lawyer, they will not take the case involving dental harm

0:44:15

ADA doesn't know what its doing - having non-dentist answering questions - saying there is no recognized treatment for TMJ so anything goes - blaming Health Canada and any one else but themselves - if they offer the patient a settlement, it is a fraction of the cost of the long term harm - it is like if you received cancer chemo for the common cold and ended up with liver damage - this is the fear with over treatment

0:45:15C

urrently there are 2 members on the ADA council who've been trained in this discredited approach - 1 has spoken out against it, but another 1 has flown patients to Las Vegas

0:46:15

Talk to a few more victims, it is terrifying - Michael spoke to a malpractice lawyer in San Francisco who became a victim and she sued the dentist, so it can happen to any body

0:47:15

A lot of these dentists are dedicated to education, unfortunately they've dedicated themselves to the wrong seminars - they can use all kinds of dental technical terminology, unfortunately it is based on an incorrect science - partly motivated by money and by respect of their mentors - and they don't want to admit they've made a mistake, it is embarrassing

0:48:15

Probably most dentists would agree that if they looked at the recommendations of some of these dentists, they would disagree - and they would talk about it privately, but to talk publicly, like with you, risks being alienated - even if they agree with Michael, they don't like that he talks about it publicly because it tarnishes every one

 

 

Sued for $9 million

 

0:49:15

Currently the same dental lab is promoting some of their dentists as TMJ experts in magazines that go to the public - a dental lab would wait for the dentist to refer to create crowns for the patient - now they're trying to promote dentists who use their systems to the public - but dental authorities have no control over dental labs, can't pull their license

0:50:15

The most that will happen is the lab will get a letter - but this has been going on for over 20 years and all the top people are making millions of dollars and it has to be exposed, it is insane - the ADA launched a multiple prong attack against Michael

0:51:15

The ADA is trying to discipline Michael for his advertising - orthodontists straighten teeth - many ways to make a smile better - but it is insane to over drill, and that is not Michael's approach and that stepped on the toes of traditional orthodontists

0:52:15

Michael's approach is common in the UK and is proud of it - at a hearing, there were 17 binders of advertising complaints against Michael - from his book, his seminars, websites - sued him for $9 million for defamation for criticizing dental authority for not doing enough to protect patients

0:52:15

Michael had reported a drunk dentist doing something inappropriate to another dentist, right in front of Michael, he sued Michael - this man was the president of the council that MIchael was also on - the council helped this man with costs and information but not Michael - they have since dropped the lawsuit - the dental lab has threatened to sue Michael, that is why he is not naming them

0:53:15

ConfessionsofaFormerCosmeticDentist.com has a lot of the info - the clear connection between dental authorities and over treatment is there - it is mind boggling that they keep coming after Michael because he is not being quiet - most dentists find it easier to shut up - but Michael is at the end of his career so if they pull his license he will be okay

0:55:15

Michael needs to speak out because the provincial Health Minister isn't listening and the public has a right to now - Michael has spent hundreds of thousands of dollars - no patient complaints, just from colleagues - everything Michael says about good dental practice, the ADA challenges it - everyone in the profession knows you shouldn't leave braces on forever

0:46:15

Some dentists leave braces on until they get their money - bottom line is that there is a turf war with corporate interests and it is just a mess - Michael uses his free time to expose the hypocrisy in the profession - and patients are still being hurt

0:57:15

The ADA is trying hard to pull his license - they've spent more money on Michael's case then the British Columbia (BC) provincial dental association has spent on all of their dentists - and more than all the physicians across Canada - Michael was elected to the ADA council to make change, a lot of dentists back him and that the old boys club has run the ADA for decades

 

 

Nevada dental board ripped apart by Governor

 

0:58:15

Why would a lawyer be the ADA's Complaints Director with no dental experience - so some miniscule complaints have blown up to be big complaints, while important complaints get ignored - the Canadian Dental Authority in the last 12 months stated in their magazine that a task force on the future of dentistry - and should look into the continuing education courses and if the content is viable

0:59:15

They say they "should' look into it, but 'should' doesn't get the job done - if they are going to ban this approach, why are they also giving credits for taking the course? - yet Michael has approached many past presidents of the ADA and they said they are not willing to go that far, but Michael thinks it is coming

1:00:15

Michael can be found on social media - his website MichaelZukDDS - ConfessionsofaFormerCosmeticDentist.com - he profiles a lawyer, and her #1 recommendation for dentists to avoid lawsuits is to not take these controversial seminars - Michael says that if we can't talk openly about these issues in the public, there is something wrong

1:01:15

Michael believes patients in Alberta may be looking into a class action lawsuit - Michael recently read about class actions against dental authorities - Michael's ultimate goal right now is to get the ADA audited from the outside - he wrote a book for the Health Minister of Alberta and met with him recently

1:02:15

The BC Dental College was recently audited and there was a long list of concerns - the Nevada Dental Board has been ripped to pieces by the Governor over its corruption - Michael the ADA will not hold up under an outside audit - if the Health Minister makes that pronouncement, the ADA will have to change - if they won't, the ADA can be torn apart - currently they've joined the College and the Association together, they're supposed to be representing dentists and patients

1:03:15

But the ADA only represents itself, and insiders get cushy jobs - there is a lot of corporate interests, and the patient is way down on the totem pole - when there was a sedation injury from a dental surgery - the ADA said they would not revise the surgical sedation guidelines, but eventually changed their tune...an example of not putting patients first

1:04:15

It is messy, but Michael is putting his time in because it is his way of giving back to the profession that has been very good to him, and it will come out better for everybody - the most egregious example of dental harm Michael has seen is the approach to drill down every single tooth in a person's mouth is ridiculously unacceptable

1:05:15

The next wave of dental practice that will be another scandal will be good teeth pulled out so they can have implanted teeth - but they are not as good as your own teeth - dental implants are going to be the next big problem, it will be a mess

 

 

Full mouth implant

 

1:06:15

Implant failure is a problem - for example, if you have a full mouthful of teeth dependent on 4 implants, and if 1 of the implants fails, they all fail - so if you can't afford to pay for full mouth implants 2 or 3 times over without blinking, you should probably not take that approach because there is a good chance the treatment will fail, and it will fail 100%

1:07:15

Dentists may be over confident in their ability to perform this procedure - they may have only taken a weekend course - the lawyers will sniff this one and it will create a back log of complaints in the dental authorities - and the dental authorities have no standard procedures for implants - they wasted time on botox - dentists were using botox and saying it would reduce headaches and clenching

1:08:15

Why are they letting all these dental implant courses be for credit? There is not enough regulation for this highly advanced surgical procedure. Michael thinks to fix the dental industry, there needs to be outside reviews

1:09:15

Currently, dental authorities will assign an ethics course for dentists they think are subpar - but that does nothing for their skills - a lot of these courses have no testing at the end - you can sneak out, go for lunch, lay on the beach, you don't even have to be there - even if dentist is in the course, it doesn't mean they are good at it - surgery is serious and there needs to be standards in the profession - perhaps that will be his next book, but he's got his hand full with the current issues

1:10:15

Michael says to choose your dentist carefully, pay close attention to what is being banned by dental authorities, and get them to explain what it means

1:11:15

But most dentists don't actually read all the bans from the dental authorities, so it is time to get it out there and talk about it - according to legal experts handling malpractice cases, there is a reason these people are being sued

1:12:15

Trying to find reliable info is a 'black hole' - a lot of the information that was available on websites has been vaporized - for example, you can't check to see if a dentist has taken a particular course, because now the dental authorities don't want dentists to list the courses they've taken - so they've taken away info patients may need to make an informed decision - now dentists don't have to say what institution they got their training, so patients don't know if it is prestigious or credible

1:13:15

If the training is not up to par, that training should not be eligible for course credit - re-training of dentists who've been mislead by these seminars is imperative moving forward - but Ontario and Manitoba have taken small steps in the right direction

1:14:15

It will help when more stories hit the media - it is a great way to expose bad practices - it is unfortunate that this is the process we have to go through to improve dentistry - we have to scare 100 people in order to save 2 people from irreparable harm

1:15:15

Michael hopes the ADA will be audited and the administration will be reassembled and that his case is set aside by a higher authority like the Health Minister - if Michael loses his license over this, he will not stop arguing and will be a thorn in their side as long as he's around

 

 

Connect with Michael Zuk, DDS:

 

Website: ConfessionsofaFormerCosmeticDentist.com

 

Email: smilefx@telusplanet.net or drz@bowerdental.com

 

Twitter: @MichaelZukDDS

 

Facebook: Michael Zuk DDS

 

_______________________________________________________________

 

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Erik Johnson: Mold Warrior - Escaping Toxic Mold and Chronic Fatigue Syndrome and Exposing the Greatest Medical Error in History.

In part 2 of my interview with mold warrior Erik Johnson, he tells about the lengths he’s had to go to get and keep himself healthy. Erik terms his approach ‘extreme mold avoidance’ - and that involves a modified and mold-free camper vehicle, and also mapping, and then avoiding, areas and buildings with high levels of toxic black mold Stachybotrys Chartarum.

Erik has been relentless in his efforts to bring awareness to the public, patients and researchers that toxic mold is an element of ‘chronic fatigue syndrome’. 

Yet there is resistance by the Centre for Disease Control, by researchers, and by the medical profession, to consider or acknowledge how unseen toxic mold in our workplace, public and home environments may be making many people very sick.

As you will hear Erik explain, there has been incredible pressure to hide the impact of toxic mold on human health. Erik also shares how the derogatory label of ‘chronic fatigue syndrome’ re-classified an entire illness from an ‘infectious illness’ diagnosis, to the ‘all in your head’ insult.

SHOW NOTES

Erik's Mold Map

0:05:15

The whole point of redefining CFS (chronic fatigue syndrome) was to put distance between CFS and the initial incident it was based on to keep it in maximum confusion - and loosened up on the psychiatric exclusion, whereas Holmes (definition) was clear that psychiatric must be excluded

0:06:00

When Erik saw strong connection between mold and CFS, he proposed to Dr Cheney that since he was focused on the viral factor, Erik would focus on the mold factor

0:07:00

The 1994 study by Chester Levine "Association of concurrence between sick building syndrome and CFS: Epidemic neurasthenia revisited" - was a study of clusters, including Truckee school - mentions other clusters including Elk Grove in California, where same exact malady emerged in teacher in a sick building

0:08:00

It took Erik several years to find out what specific mold was involved, but it was Stachybotrys Chartarum (SC), the dreaded black mold, same as the Lake Tahoe - Erik thought this should be included in the CFS criteria so that they become a putative mold reactivity patient

0:09:00

If CFS patients have mold reactivity, they can be instructed on how to avoid it and reduce symptoms - Erik tried to identify the worse place / buildings in Lake Tahoe and created a map to avoid them and started to recover

0:10:00

Erik thought he could maximize his recovery be spending more time in the nearby Nevada desert - he was eager to get back into aviation and hanging out a small airport - one day he sees a 'crazy man' out in the desert heat raking, by hand, a 700 foot landing strip

0:11:00

Nearby was a tractor with rake attached, set up to do the job - Erik asked him about it and got a strange look, as his mental wheels were turning - he said 'I've got this strange illness, I'm from Incline Village, Nevada, and doctors tell me I have CFS, and I come out to the desert because it is the only thing that helps' - he was coming to the desert for the exact same reason as Erik

0:12:00

They started telling other people - and taking them to the 'toxic' areas of town to see if they reacted and decide if they wanted to try to avoid mold - this is how the CFS Mold Tour began - he's taken many prominent people on this tour, author Julie Rehmeyer (Through the Shadow Lands) and she became a mold avoider

Powerful Neurotoxin

0:13:00

Jennifer Brea, director of documentary Unrest also got Mold Tour and realized she needed to avoid mold too - what is curious to Erik, is that no researcher enquired about why Jen was avoiding mold in her documentary

0:14:00

Erik has asked researchers at screenings of Unrest why they think Jen is doing that - but he has not been able to drum up any interested researchers - because SC is one of the most powerful neurotoxins known to man, it is essentially like nerve gas, so neuroinflammatory - repeated exposures cause neurological symptoms similar to nerve agents

0:15:00

The chronic inflammation puts stress on the nerves that the electrical impulses in the nerve become inhibited, and to compensate, the nerves thicken their myelin sheath to help nerve impulses and restore function

0:16:00

For a long time, researchers assumed these neurological symptoms were close to multiple sclerosis (MS) - so with intracranial hypertension, neurological information from toxic mold exposure, where the physical damage perpetuates symptoms, like in Chiari Malformation where the brain is literally pushing itself out of the skull, opening pressure on spinal taps, and spinal fluid leaks

0:17:00

Erik thinks breakdown of ligaments and collagen contribute to neck problems in some CFS patients and is due to downstream effects of chronic inflammation over years - Erik's health did pretty good for a few years

0:18:00

Erik would also check wind direction to avoid toxic areas, and being down wind of them, in town - if he couldn't avoid these areas, he would shower and change clothes as soon as possible

0:19:00

By reducing inflammatory response and cytokine cascade, he's been able to live like a normal person - Erik had to find a home free of mold - he also built a camper out of mold resistant materials to drive around that had a shower in it

0:20:00

This allows him to decontaminate quickly - but in 1994 he slowly started getting worse - turns out it was neighbouring houses, the sewer - Erik got sicker and sicker and went to Dr Peterson

0:21:00

But Dr Peterson was too busy with his viral interests - Erik got worse, almost bed ridden again - Erik was diagnosed, again, with CFS with reactivated HHV6 - Dr Peterson said Erik's only option was the drug Ampligen, an experimental medication that pushes the immune system into high gear

 

 

Desert Living

 

0:22:00

Some people have a spectacular response to Ampligen - but free Ampligen in the trial was only open to very sick / bed ridden patients - since Erik could still walk, he would only be eligible for the cost recovery program, but Ampligen cost about $60k / year and Erik could not afford that and his insurance company had canceled his insurance because he had CFS

0:23:00

Erik decided to try even harder to avoid mold, extreme avoidance and see if he could max out his health - Dr Peterson didn't think it would work, but since Erik couldn't afford Ampligen, what was there to lose - Erik bought a camper and drove it to the desert and spent as much time as possible in pristine environments and once again his health improved

0:24:00

Within 6 months of extreme mold avoidance, Erik was climbing Mt Whitney, the tallest mountain in connected USA, 13,500 feet high and a 25 mile hike - takes about 20 hours to climb

0:25:00

Erik thought that climbing Mt Whitney as a CFS patient avoiding mold would be impossible for researchers to ignore - but their reaction was 'how nice for you'

0:26:00

Erik says that mold is the common factor in all these clusters - but researchers don't want to investigate the mold aspect - he hopes one day we'll know why they are not interested

0:27:00

CFS emerges after a trigger, usually a viral infection - researchers focus on the trigger as if it was the sole cause

0:28:00

From the moment the CDC (Centre for Disease Control) announced they intended to collate the results, Erik began contacting CFS researchers and explaining he was the prototype patient for CFS, but he did not get one positive response

0:29:00

By the time the 1988 Holmes definition of CFS was published, Erik realized this was more than just a scientific endeavour, and more than documenting the toxic mold aspect, it was sociological research to see how researchers would handle a situation like this, and that's how Erik approached CFS research

0:30:00

Erik created a standard phrase to see how doctors and researchers responded: "I'm an Incline Village survivor and prototype patient for the 1988 Holmes criteria, would you like to hear about it?" - never, not once over 30 years has Erik had a positive interest response, it is mind boggling

 

 

Confidentiality Agreement

 

0:31:00

When Osler's Web came out, Erik already realized he was getting 100% negative response from researchers and no interest in following up on the Lake Tahoe outbreak - but Erik couldn't believe that on page 25, the Truckee teacher cluster - Erik's teachers - is clearly described - when Erik makes his assertion that CFS was never investigated, it sounds unbelievable - but those teachers told Holmes there was something in that school room

0:32:00

In Osler's Web, it talks about the disdain Holmes had for these teachers - on page 49, a couple of patients ambush Dr Holmes and explained about that school room and the infrequently changed air filters in that room and asked him to examine the air filters in that room

0:33:00

Turns out the filters did have the toxic mold SC - the school realized they had toxic mold and hired remediators to clean it up and the incidence of illness decreased - the school and its teachers, remediators, towns people and local doctors know about this - but not CFS researchers

0:34:00

Erik went to CFS symposiums and said he could take them to the locations and introduce them to the remediators who cleaned up the mold - Erik ran into a problem: the school authorities did want people to know about it, the teachers are fearful of repercussions so keep quiet - and the remediators said they couldn't disclose because they had a confidentiality agreement with the schools

0:35:00

So the only person who has no vested interest and willing to describe it is Erik - the remediation of the mold was in the newspapers - so clearing up CFS is simply doing some epidemiology research

0:36:00

Erik climbs Mt Whitney every year to celebrate his recovery - he posts about it online and how has helped other people recover from CFS - author Julie Rehmeyer is the most high profile person he's helped - she wrote an article for the Washington Post: What is CFS and why is more not being done to study this disease?

0:37:00

In the 2015 article Julie describes how none of the other treatments her doctor had tried had much effect - Julie heard about the extreme mold avoiders and decided to come to Incline Village and Erik took her the sick buildings - after a short period of mold avoidance her post exertional malaise symptom had disappeared and she was climbing mountains

 

 

Media Interest, But No Researcher Interest

 

0:38:00

So we have a direct intervention for CFS and it deserves research - but still, no researchers have looked into mold in CFS

0:40:00

SC has been studied quite a bit, but only known in the mold community, not in the CFS community - the CDC puts pressure not to research mold - they don't want this very expensive problem to come to public light

0:41:00

Because a lot of schools and public buildings will be affected - the CDC did its own toxic mold investigation in 1984 and found exactly what they didn't want to find and they buried that research through paralysis by analysis - but stated that nothing conclusive was discovered and more research is needed, but they didn't do it

0:42:00

Erik has returned to flying, a very expensive hobby, and mold avoidance is a very expensive therapy and includes avoiding sick buildings and immediately decontaminating if he is exposed - so that curtailed how much flying he could do, so he turned to mountain climbing and hiking - Erik does a ton of advocacy work around mold, and that doesn't pay, he hasn't made a dime

0:43:00

Erik goes to the ME/CFS conferences and tells his story to researchers as they take an active disinterest - like Hillary Johnson said, the politics is so compelling it draws you back in, its unique, and the sheer unbelievable, bizarre aspect that keeps sucking Erik back in - he can't believe this happened and the medical and research communities behaved in this way

0:44:00

Erik believes to fix the problem, it needs to be brought to light - the medical profession needs to realize they've committed an epic failures in their entire history - perhaps the embarrassment will force them to reconsider how they do business

0:45:00

Erik doesn't think any one will believe or understand this complex convoluted history until a movie is made about it - Erik's basic premise is that a researcher would want evidence, and so Erik developed a test

0:46:00

Back in the 1800s when Ignaz Semmelweis, a Hungarian physician in Austria, discovered that hand washing killed germs - he noted that the 2 health clinics had different mortality rates - the midwife's clinic had a very good success rate, but the doctor's clinic had an unbelievably high mortality rate from childbed fever (puerperal sepsis)

 

 

Money Can't Buy A Ride Like This

 

0:47:00

A pathologist doing an autopsy on a childbed fever death, nicked himself and he then died of the same illness - this suggested something, 'cadavers particles', had been transferred to the doctor through the blood - Semmelweis implemented hand washing with lyme / bleach and instantly reduced the mortality rate at the doctor's clinic - there were no autopsy's at the midwife's clinic

0:48:00

Semmelweis didn't know it was germs, but he didn't need to - he only needed to note that there was difference between the buildings and start to investigate - the history of CFS is similar: sick buildings making people sick

0:49:00

But no current researchers are investigating - in effect, there are no more Semmelweis - Erik has used the internet to get this info out and spending a lot of time in social media groups building up a following to put pressure on researchers and all this will come to light

0:50:00

Why does Erik keep doing advocacy? Hillary Johnson described Dr Cheney when he was in the middle of his fight with the CDC as saying "Money can't buy a ride like this"

 

 

 

Connect with Erik Johnson:

 

Facebook: The Erik Johnson Effect

 

Twitter: @ErikMoldWarrior

 

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I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.

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**For my health and life balance, I limit my number of counseling clients.** 

Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com

     

Scott Simpson: 

Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.

I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.

Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. 

Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

Patient Advocacy

I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.

Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.

My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Remedies Counseling - Making Life Better