Medical Error Interviews

Erik Johnson (part 1): Mold Warrior - Escaping and exposing the cover up of toxic mold in the creation of Chronic Fatigue Syndrome

Eight year old Erik Johnson figured out what was making him very ill: the building his family lived in. But instead of listening to Erik, doctors gave him a psychological diagnosis - ‘maybe autism’ they said.

In part 1 of my interview with Erik, he shares how he got healthy through insight into his symptom pattern, and then developing and tweaking his own treatment protocol over the following years. 

Erik also exposes the federal and local cover up of infamous illness outbreaks in Nevada. Erik tells how the Centre for Disease Control CDC) essentially invented the diagnosis of ‘chronic fatigue syndrome’ to explain the flu-like outbreaks.

Mix in big egos, financial interests, and sensationalist media, and that led to words and concepts being twisted so that a physical illness was downplayed, and mass hysteria up played.The CDC then became complicit in psychologizing the illness in an effort to throw more confusion around the cause of the outbreaks.

Meanwhile, Erik was doing his own investigation of the outbreaks and realized that not only was there a viral aspect to ‘chronic fatigue syndrome’, but that exposure to toxic black mold - specifically Stachybotrys Chartarum - was a necessary element.

Yet, in spite of Erik’s - and their own - evidence, government and medical institutions did not want to research the role of toxic mold on human health. It is far less costly - for government, for health care, for the insurance and building industries - to label sick and disabled people as fakers and fraudsters, then to face the role toxic mold has on human health, and its implication in the emergence of ‘chronic fatigue syndrome’.

SHOW NOTES

Autistic?

0:06:40

Erik grew up in the Sierra Nevada Mountains, about 100 miles south of Lake Tahoe on a stage coach road in an old hotel that was a historic monument, unfortunately Erik had a terrible experience with toxic mold that made Erik very sick and could not recover - pretty much everything he's done is to get better from this toxic mold

0:08:10

In 1964 his family took over management of the hotel and Erik started to get nose bleeds, fatigue, blinding headaches, rashes, neurological problems - often resembling autism - he was in and out of hospitals, saw many doctors and none could figure it out - but Erik knew by getting away from the hotel he would feel better - in the summer he'd live in the buggy barn so his room was available for guests, so every summer he was like a normal kid with lots of energy - when he moved back into the hotel in the fall, he'd get sick again

0:09:10

Erik's family and doctor attributed his symptoms to psychological problems, developmental problems, suspected autism - Erik has been on a quest to find out how many others have been affected - in 1964 he read some Mark Twain books (including Roughing It) in which he describes this illness as people from the East moving for the Western cure in California or Nevada from what was then called 'consumption' - referred to tuberculosis or any kind of wasting disease

0:10:40

Erik thinks many of the 'consumption' patients suffered from toxic mold - a Mark Twain character moved West to die, slept under the stars, started to feel better and climbed mountains - Twain quipped that 'he came West to die and made a poor job of it'

0:11:40

Erik realized when he was outside, his health improved so it was obvious to him that it was something in the hotel making him sick - when they expanded the hotel and cut through a wall that was insulated with newspapers that were covered in black mold - because the papers were so old, Erik tried to read them but completely collapsed

0:12:40

It was clear black mold was causing his symptoms - Erik was 8 years old when he figured it out - so he spent as much time outside the hotel as possible, but had to move back in for the winter months - it was devastating for him - his family moved to Lake Tahoe in the late 70s

0:13:40

But Erik experienced the same symptoms in his new school, especially the entrance - most people knew something was wrong, it was affecting a lot of teachers and students, and they learned to avoid the front entrance - Erik graduated and was still sick - turns out his school would be ground zero for the emergence of 'chronic fatigue syndrome' - a cluster of teachers with rooms near the entrance got a flu-like illness, but could not recover

 

 

Toxic Mold in the Army

0:14:40

But the other teachers also got the flu, but they recovered - only teachers also exposed to black mold remained sick - it was Truckee School - subsequently a lot of work was done to clean up the school and it feels fine now to Erik

0:15:40

Erik realized he was being affected by a specific kind of mold no matter where he went - he thought joining the army would toughen him up by going through basic training with a physical life - he also wanted the adventure and hoped maybe the military would know how to deal with mold

0:16:40

Erik was overseas in a bunker built by Hitler - in 1976 the basement armory flooded and black mold grew on the cardboard and his entire unit got sick, including a couple of fatalities

0:17:40

The symptoms were the same Erik experienced in the old hotel - one guy who had hepatitis, it was reactivated and he died - several cases of cancer - they thought the staff sargeant had brain tumours and took him out on a stretcher and they never heard of him again

0:18:40

A swine flu hit his unit and made history because they were the first nuclear missile unit to be removed from active duty due to illness - it seemed obvious to Erik that the flu compounded with black mold exposure proved devastating

0:19:40

He would sneak out of the bunker at night to sleep outside - Erik got out of the army in 1978 because he couldn't face another situation where he had no control over escaping mold - he noticed a strange illness like his, move into the San Francisco Bay area

0:20:40

People would get the flu and not recover - Erik wanted to see if there was a connection to mold so he started going to their homes or workplace and indeed Erik would react to the mold - Erik had another black mold exposure and got very sick and couldn't function at work as a hang glider instructor

0:21:40

Erik was living in an RV and it got moldy - he was forced to move back in with his family in Lake Tahoe - his mother and brother physically carried him to a doctor's office, it turned out to be Dr Paul Cheney

0:22:40

Cheney took Erik's symptoms seriously but didn't have a clue to the cause - in 1984 Cheney suggested Erik go to a big clinic in Reno for testing - at the same time the worst flu they'd ever seen hit Lake Tahoe

0:23:40

The flu was so bad it got its own name, 'the Truckee crud' because it hit the town of Truckee before Lake Tahoe and Incline Village - when people didn't recover, Dr Cheney called the CDC (Centre for Disease Control) because a group of Truckee teachers all in the same room did not recover

 

 

Sick Building Syndrome

 

0:24:40

Erik suggested to Dr Cheney to look into the mold - at same time another school and a casino had outbreaks, and the viral aspect was given more import and that's what Dr Cheney wanted to pursue

0:25:40

Erik went to the other locations and could feel the mold - Erik considers mold to be an important co-factor in maintaining illness - the CDC came but toxic mold had not been discovered on in the medical literature at that time - without an explanation for the sick buildings, the CDC created a new illness

0:26:40

Problem was the Tahoe flu was so severe and made so many sick as Hillary Johnson describes in her book, the local Chamber of Commerce was being whipped out, in ruins, people were so scared they refused to come to Lake Tahoe, a tourist town, dependent on the ski industry - that disappeared, 1 of 6 businesses went bankrupt

0:27:40

People cancelled reservations, and Lake Tahoe became known as ground zero for this mystery illness - the Visitor's Bureau pressured the CDC to trivialize the outbreak so the tourists would return - this is why they chose the trivializing name 'chronic fatigue syndrome' and did not include any of the immune abnormalities - the NIH (National Institutes of Health) and Dr Stephen Strauss were interested in the Lake Tahoe flu

0:28:40

NIH is National Institutes of Health and control funding for health research - when this strange illness was spreading through the US in the 80s, it reactivated Epstein Barr Virus (EBV), the 'kissing disease' - 96% of population has EBV - but testing was very crude in the 80s

0:29:40

Basically only showed if there was an elevation in EBV antibodies - Drs Peterson and Cheney used this crude test and everybody came up negative, so it looked like EBV was ruled out for the Tahoe flu - but a new test became available and Drs Peterson and Cheney re-tested and found the patients did have elevated EBV antibodies

0:30:40

They called the CDC and said we erred, the patients do have EBV - Dr Gary Holmes said if this is true, the outbreak would completely re-write the profile of EBV because its acting contagious with a short incubation period - if it has mutated, needs to be researched

0:31:40

So the CDC was investigating if there was a new form of EBV causing the outbreak - people are confused about that, thinking the CDC was called for the mystery illness, but the CDC mission was very narrow re EBV - that's why they only wanted to look at the serology reports, not examine patients

 

 

Greatest Medical Error in their entire history

 

0:32:40

The results were confusing because some had elevated EBV but others did not - about 2/3 were a perfect fit for EBV, but 1/3 were not - Dr Holmes left and made an off-hand remark to a newspaper reporter that they were not seeing evidence of an epidemic

0:33:40

He was referring to an EBV epidemic, but the newspapers accused Drs Peterson and Cheney of creating hysteria - Dr Cheney told the newspapers the CDC was wrong and he's stand up in a court of law and prove it - an insult to Dr Holmes

0:34:40

So Cheney is fighting for his reputation, and Holmes feels insulted and refuses to return to Lake Tahoe - so 'chronic fatigue syndrome' grew out of a mistake, a misunderstanding of what Holmes of CDC was actually saying - Holmes acknowledged that people were actually sick - Erik said Holmes is one of the most maligned people

0:35:40

because the story got around that the CDC was trying to hide the illness - but that was not there goal at the time, that emerged later, but not due to Dr Holmes, he's actually a good guy

0:36:40

About same time, Drs Peterson and Cheney sent blood to another lab and they found a new virus: HBLV - Human B-cell Lymphotropic Virus and renamed a few years later as HHV6-alpha, Human Herpes Virus 6 Alpha - an especially devastating neurotropic virus that was observed to wipe out B cells, the exact opposite of EBV

0:37:40

This explained why patients were negative on the crude test - this is described in Osler's Web, the cytopathic effect - the CDC was concerned the HHV6-alpha was causing the outbreaks - same time as emerging AIDS pandemic - 'syndrome' was a scary word, associated with AIDS - so 'chronic fatigue syndrome' didn't seem so pejorative at the time

0:38:40

'Syndrome' signified unknowns to be investigated - but it became pejorative when paired with 'chronic fatigue' - as confusion spread, the fear of a 'syndrome' dissipated - it took about 6 years

0:39:40

Then 'chronic fatigue syndrome' became identified as middle aged women who couldn't get their life together - the media is responsible for 2 things: misinterpreting Dr Holmes, and propagating a negative narrative of CFS - the Holmes definition of CFS specifically excludes psychiatric disease

0:40:40

But somehow the medical profession overlooked this - it is probably their greatest medical error in their entire history - has impacted millions of people globally

 

 

Covering up an outbreak

 

0:44:40

In April 1986, Dr Cheney called Erik into his office and he was very excited with Erik's test results, saying it was incredible

0:45:40

Erik was now EBV negative - but Erik was disappointed because it was thought EBV was the driving force behind CFS, and could be treated with cyclovir - so that removed Erik's option for treatment

0:46:40

Dr Cheney explained that the CDC working hypothesis was that the illness is caused by EBV and it is being reactivated by lifestyle factors, alcoholism, smoking, drugs - a wealthy Chicago entrepreneur had a daughter who was sick with the illness and he was trying to stop the CDC from blaming EBV, and Dr Cheney was looking for proof that EBV was not a factor in the illness

0:47:40

Dr Cheney wanted Erik's blood, so Erik was the first prototype for the new syndrome by using Erik's blood to demonstrate EBV was not necessary, but HHV6 was, and it is a much more scary virus - so if the CDC really wanted to clarify, they would've named it HBLV (later called HHV6) disease

0:48:30

Initially Erik didn't want to be involved, due to time and responsibility, but Dr Cheney said he had to because Erik was the only patient from original outbreak that was EBV negative and had a duty to the patient community - Erik said he couldn't because he also had a mold problem but Dr Cheney said not worry about that now

0:49:30

Erik continued to be concerned that his mold problem would corrupt Cheney's data - it then occurred to Erik that if all these clusters occurred in moldy buildings, it means mold is a critical factor in the illness, not a confounder - Erik agreed to participate on that basis

0:50:40

Erik didn't realize that no researchers would ever come back to investigate the outbreak - and the CDC was not interested in the mold / sick building factor - the CDC used the confusion to bury the Lake Tahoe outbreak, and keep it buried

0:51:40

For about 4 years the CDC wasn't sure it would work because it would just take one epidemiological researcher to find the truth - by 1992 the CDC saw the trivialization had worked perfectly so started working on their Fukuda definition of CFS to replace the Holmes definition - but why bother? The description and criteria was very similar. What was the point?

0:52:40

The point was that the Fukuda definition wasn't based on a scary outbreak that could be identified - the whole point of redefining CFS 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 was clear that psychiatric must be excluded

 

Part 2 of Erik's interview coming soon.

 

Connect with Erik Johnson:

 

Facebook: Erik Johnson Effect

 

Twitter: @ErikMoldWarrior

 

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Andrea Carlomusto: Dental Damage by Devious Doctors for Pain and Profit

Andrea Carlomusto is a fitness trainer in great physical shape, but it has been a tumultuous road to get her body in peak condition, with a detour through anorexia where she weighed as little as 55 pounds and doctors had given up and sent her home to die.

Due to her own research efforts, Andrea survived anorexia, but is now dealing with years of pain, looming bankruptcy, and crushing stress due to repeated dental errors that caused a stroke and pain so intense people commit suicide to escape it. Andrea has tried every avenue to get her teeth fixed, but meets successive roadblocks and dead ends.

It turns out dentists have little oversight and less accountability - some of them are going for a weekend course to learn dental procedures from  dubious dental teaching organizations, and then start practicing on unsuspecting patients, charging tens of thousands of dollars and causing permanent damage. 

Andrea is one of an exploding number of people coming forward to share their dental nightmare experiences.

Opera and Anorexia

0:05:30

Andrea grew up in Livonia, Michigan, a suburb of Detroit - family of 6, Dad an Italian immigrant - happy, artistic, encouraged to sign and dance, school a big focus, involved in sports - no coddling, and Andrea appreciates that - very straightforward family - after high school, Andrea moved to California with her band, but they decided to be actors instead - Andrea was homesick and returned to Michigan

0:07:30

Andrea considered the military - Andrea is also a singer and got a scholarship to college for opera singing and attended it in downtown Detroit, but lost the scholarship due to health issues - from age 8 Andrea had an eating eating disorder - in her early 20s she was as low as 55 pounds - it caused a lot of damage to the body - she couldn't walk, her family was waiting for her to die

0:08:30

Since she didn't have health insurance, she was put in the 'nutty bin', but they couldn't do much and sent Andrea home to die - but Andrea started researching to get herself better because she did not want to die - Andrea thinks it was a lack of control that caused her eating disorder, but it is complex

0:09:30

Focusing on the obsessive compulsive aspect rather than the 'I'm fat' aspect as Andrea never thought of herself as fat, she was playing mental games with herself that she took to far - she uses that insight to help her clients in her fitness biz - control issues, perfectionism, making every one happy, people pleasing are aspects

0:10:30

Poor diet, lack of calories plays with hormones and neurotransmitters contributes to mental health issues in eating disorders with a perfectionist attitude - Andrea has done a lot of research since because health care providers don't understand - they try to help, but there is not enough research - Andrea says there is a lot of lying and manipulating by patients, but people don't want to tackle that

0:11:30

Key to recovery is focusing on something healthy to obsess about - for Andrea it was research - and she loved fitness - and she loved life and wanted to experience as many things as she could, and that was the key to her recovery - eating healthy is easy now

0:12:30

Andrea doesn't have the same urges to diet, or the same thoughts when she looks in a mirror - since she's been at the edge of death, she never wants to go back there - the eating disorder for 20 years caused a lot of systemic effects in her body: hypertrophic heart, weak esophageal sphincter and scar tissue on her esophagus, anemia, endometriosis, can't have children - Andrea stopped going to doctors when she got herself better because they didn't understand eating disorders or the systemic effects

 

 

Botched surgery

 

0:14:30

Andrea was doing well until her body stopped urinating and passing bowel movements, very painful, went to ER and they said she had IBS, Andrea said she knows she has that, and these symptoms were not IBS - then they said she was constipated - Andrea told then no, her muscles were frozen down there, they won't move - she suffered for a year with many tests and they said they couldn't figure it out - they decided to give Andrea a hysterectomy

0:15:30

Sometimes endometriosis can 'strangle' organs in the abdomen - they said they would do 3 procedures but it was botched and Andrea experienced extreme pain, she thought she was in Hell - out of surgery, the stitches had already broken - they didn't remove all they said they would - they didn't give her antibiotics so she had multiple infections but they said Andrea was crazy, until they saw green oozing out her wound

0:16:30

Very difficult and painful - Andrea uses comedy to cope, make fun of herself, focus on clients to deal with pain - Andrea needs to keep it light, but it did affect her a lot - her weight lifters needed her for their safety, so Andrea had to refer a couple of clients to others - Andrea went to the gym to get her heart stronger as part of her recovery from the eating disorder - she had osteoporosis so started lifting weights and doing her own routine at the gym

0:18:30

The gym owner asked if she would like to teach a class - she liked it and went to school to become a Certified Personal Trainer - initially helping people with eating disorders, or rehab - then got into body builders as clients - now Andrea is known as the 'problem solving rehab chick' - she does a holistic approach to training

0:20:00

The day after surgery, Andrea had a healing abutment come out of her mouth - when she had recovered from the eating disorder, Andrea had her teeth looked at as they were damaged and had jaw pain that was misdiagnosed in multiple trips to the ER - turns out she had an abscess in her jaw, so had that taken care of - they implanted cadaver bone in her face because the bone deteriorated

0:21:30

Andrea was also given a full set of braces - fast forward again to just after abdominal surgery, when the implant abutment came out - Andrea contacted a dentist to just fix that and was back in surgery for the abutment - the dentist asked if she had considered getting more work done, but Andrea said 'no'

0:22:30

But Andrea's best friend worked for the dentist and they said they would develop a care plan to protect her teeth - Andrea agreed but the dentist only worked on 1 tooth instead of 4, but adding 8mm to it and sent her home - Andrea couldn't eat, her jaw hurt, she couldn't speak, she was swallowing air and that would cause vomiting - the next day she asked the dentist to remove it and he refused, saying her symptoms were in her head, come back in a week

Getting dental work done

0:24:30

She lost 7 pounds that week - he removed it but made a snide remark to her - since her best friend worked for him, and Andrea had already paid a lot of money, she ended up apologizing to the dentist - that calmed him down and he said he'd replace the old fillings in her mouth, even though they weren't a problem - but he dug too deep and Andrea needed root canals from a different dental provider, and paying for that

0:26:00

Andrea asked dentist (her best friend's employer) to put crowns on the abatements (little screws that hold an implant, then they put an artificial tooth on the abatement) - he said he wouldn't do that, but would correct the chip he caused on her front teeth when he used a material that broke her tooth, in spite of Andrea asking it it was safe

0:27:30

Andrea declined, she didn't want the risk of him correcting it 'wrong', causing more expense - but she did allow him to close the gap between her front 2 teeth, but then he said she needed 6 teeth done - Andrea was nervous and asked for a temporary mock up so she could ensure it fit properly so she could eat

0:29:00

The mock up felt great so she went in for the permanent procedure - it took 6 hours - as a result her bite was a bit elevated, but no swallowing or other problems - but she was spitting when she spoke because of little spaces, she reported it to the dentist and he laughed about it - Andrea asked for a retainer to hold her teeth in place because they shift quickly (result of eating disorder) - he spoke down to her, saying he'd do it, but she didn't need one

0:30:30

A week later she was back at the dentist so he could do las 10% of work and stop the spitting when talking - but he sanded down her teeth, therefore eliminating all the occlusion (little bumps on teeth that help with chewing and 's' sounds) - that caused her lower jaw to shift back in her head and her muscles had to hold her face forward so she could function - she couldn't chew properly and this caused digestion pain

0:31:30

When he eliminated her bite, things went really wrong - she was berated for a month - Andrea had her best friend (his employee) sit in on Andrea's appointments to witness - Andrea had excruciating pain, and was like biting a car battery, metal on metal - she couldn't sleep, headaches, jaw pain and still couldn't eat

0:32:30

Andrea asked him to reverse the procedure, and he said he couldn't, it was gone - Andrea was dumbfounded and asked him what he did - he left saying he had emergency at home and would see her in a few days, leaving Andrea in a bad condition - for the next month she had many procedures while being belittled by the dentist - he had Andrea thinking she was crazy, insinuating everything was in her head

 

 

Suspicions confirmed: Dental damage

 

0:33:30

Visits to the dentist caused distress, fear of what he was going to say to her - after a month, Andrea went to get a 2nd and 3rd opinion, and her suspicions were confirmed: the dentist has screwed up and it would take $30k to fix her teeth - the dentist didn't want to take responsibility for destroying her bite, denying she even had a bite - it was a huge slap in the face

0:34:30

Andrea plays dumb with dentist and doctors in spite of doing her own research because she's aware of the ego that sometimes goes with these professions - Andrea likes when her clients come to her with questions, but she's never encountered that in health care - with her eating disorder past, she is discounted as a hypochondriac, that's why she avoids doctors and dentists

0:35:30

Andrea went to a couple of other dental providers, but they didn't know what to do - in December 2016 Andrea severed contact with that dentist - but she got back into the university dentistry in May 2017 - so she had to wait months while in pain, unable to eat, couldn't sleep, and had a nervous breakdown

0:37:30

Dental and health care providers were not listening to Andrea about the systemic effects of her past eating disorder - same with the folks at the university dentistry, they ignored all the health records Andrea brought - Andrea told them her jaw was unstable, but it took them 6 months to run the test to inform her that her jaw was unstable - so she had to needlessly endure pain for 6 months - she also told them her teeth were shifting, they ignored her, her teeth shifted so they had to remove more teeth, another $2,000 procedure

0:39:30

The university dentistry provided great service in 2008 - 09, but not this time - they retracted her gums and whittled away bone to try to make room for adjustments - Andrea had many stitches, another extraction and implant, and they put that in crooked - they whittled more away from her teeth, but that failed to allow product to fit and they tried to force it, hitting exposed nerves - so they put on temporary 'horse teeth' and Andrea can't eat or close her mouth

0:41:00

Andrea demanded they revert back to the original mold of her teeth - Andrea's fiancee took her to a dentist in Minnesota, and that dentist was appalled and told Andrea to see a specific specialist with specific skills in Michigan

0:42:30

Andrea found a specialist, who was also an instructor - 'occlusion' is how your teeth fit together in a bite - 'TMJ' dysfunction can happen when the joint is under stress - a complex condition - Andrea is in contact with organizations doing this type of research - and is very outspoken about her experience

0:45:00

Andrea met with the expert specialist in her area and he listened to her experience, or so she thought - he assured Andrea that he had a fool proof way to help her using a computer to measure her mouth - Andrea was thorough and asked a lot of questions - insurance would not cover the cost

 

 

'Suicide neuralgia' and stroke

 

0:46:30

The 1st step was to put a fixed retainer on her lower teeth to relieve TMJ pain, it was not removable - the computer was supposed to actually measure her mouth for the retainer, but it failed multiple times to find Andrea's natural mouth position - they finally took a measurement and she was told to come back in a week for the upper teeth

0:48:30

But the lower retainer was turned out to be twice as large as supposed to be, she could not shut her mouth, or eat, or talk - Andrea is still trying to work during all this - over next 8 months she had many procedures, told she had 2 root canals, but found out later it was only 1, and that would explain the pain - she was charged for x-rays they never turned out, so they missed the infections - ended up in ER for dental pain, hard to breathing, seeing, dizzy and was diagnosed with transient Ischemic stroke

0:50:30

Andrea went to the specialist 2 days later and they said she needed a root canal - Andrea had immense pain from the lower retainer and they had to rip it out - then Andrea developed searing pain up into her head, her eye wouldn't open - the dental specialist repeated the procedure, causing even more pain, causing another trip to the ER when it felt like she was being stabbed in the brain

0:52:30

Andrea went to a neurologist and was diagnosed with trigeminal neuralgia, a cranial nerve that controls feeling and movement in the face - also called 'suicide neuralgia' - the pain was constant and no medication had any effect - but the dental specialist then said the there is no such thing as trigeminal neuralgia, and that her pain was TMJ - Andrea couldn't eat so had to get calories from liquids, soft foods - it was torture

0:54:00

Andrea convinced him to use her original mold, but that didn't work - he kept making and ripping out retainers, causing intense nerve pain, but she couldn't take more pain meds because of her heart problems due to prior eating disorder - if only they would listen to patients - but she had over 2 dozen teeth ripped out with lots of pain - the neurologist then also diagnosed occipital neuralgia

0:55:30

As a result of all these botched procedures, Andrea's spine had become misshapen causing more pain - Andrea is managing pain and working - Andrea returned to the dental specialist many times and asked him to confer with Minnesota dentist, with neurologist, but he refused - Andrea was left with jagged metal in her mouth, puncturing her cheeks, making her gums bleed, and excruciating pain

 

 

Box of teeth

 

0:57:30

Andrea emailed the dentist and demanded a refund - a week later she got a box of teeth in the mail - Andrea called the dental manufacturer but they refused to release her records, only the dentist could get that info - she would have to sue to get her records - in the box of teeth was also a letter saying she would not get a refund as her case is finished - Andrea took the box of teeth to the Minnesota dentist who recommended the dental specialist

0:59:00

The Minnesota dentist was empathic, shocked by the box of teeth, showed it to his colleague - they gave Andrea 4 root canals - whereas the dental specialist in Michigan wanted to put permanent dentures on top of the dead teeth he caused - the box of teeth is evidence, this is going to court - Andrea is trying to figure out the ethics of health care professionals

1:01:30

The take away from her experience, is that health care professionals need to listen, and treat people how you want to be treated - but the egos, and fear of lawsuits get in the way - a lot of professionals act like what they say is law - it was 3 solid years of misdiagnosis, fail to diagnosis, unnecessary procedures and surgeries - the number of medical errors she's endured is insane

1:03:00

Andrea didn't go to a doctor for years, just listened to her body - the best doctors Andrea ever had were the ones who said 'I don't know, but I'll figure it out' - that instilled trust and more like a team - one of the doctors said he knew very little about eating disorders, that Andrea would have to teach him - she trusted and opened up to him - more team work is needed in health care - informed consent is important, but Andrea wasn't afforded that

1:04:30

Patients lose time, money, energy - dentists don't - they should concentrate on patient care, not covering up their mistakes - Andrea has spent close to $100k and is still no closer to being better - the Minnesota dentist has helped so Andrea can eat and sleep - but the last procedure it the hardest - Andrea had worked hard to go from anorexic and homeless to a healthy gym owner and had no money left, but the dentist wanted $50k to fix her

1:06:30

The manager of the dental office applied for a $25k loan for Andrea without her knowledge - they had her sign some papers, later found out it allowed them to take the $25k in one day without doing any work - 8 months later Andrea is worse and the work still not done and Andrea is facing bankruptcy - recently an entire dental board resigned over corruption, and a lot of those dentists trained at the same place as Andrea's harmful dentist

1:08:30

Andrea is in contact with other dental victims, some with worse experiences - but they are teaching these procedures to over-drill and over treat healthy teeth - dentists fly in from all over the world to learn these uncredentialled procedures - the boards and powers that be know this and need to take action

1:10:30

These experiences have turned Andrea into an advocate - speaking at Washington DC and recognized in Michigan on Eating Disorders Awareness week - Andrea has a small group of folks with dental injury who support each other

 

 

Connect with Andrea Carlomusto:

 

Twitter: @AndeCarlomusto

 

Website: http://rx-training.com

 

Instagram

 

Facebook

______________________________________________________________

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.

 

Steve Turner: Nurse and medical educator: "Arrogance is a medical error"

Nurse and medical educator Steve Turner talks about the medical errors he’s witnessed - and participated in - and how being a health care whistleblower is likely to get you fired from your job and blacklisted from future opportunities.

Steve also talks about the tragic and needless death of Oliver McGowan who was killed by multiple health care workers who failed to listen to him. Steve also shares how the paternalistic physician culture has baked-in arrogance, and that in and of itself, is a medical error.

Mental Health Nurse

0:05:00

Steve grew up in Stafford, England - a happy childhood, with one brother - moved to Rugby when he was 17 and he had been doing poorly at school but then started to think about his future - Steve did not know what he wanted to do, but because his friend's father was a psychiatrist, and Steve grandfather had mental health issues, he was drawn to that field - but worked in a restaurant in Coventry and met some Australians working there

0:07:00

Steve then moved to Shepparton, Australia on a work holiday - Steve had a wonderful experience, working in bars, fruit picking and other casual labour - Australia was booming while the UK experienced 'the winter of discontent' - that 10 years traveling and working in Australia provided more experience to draw on than any training course - have to rely on your wits, meet a variety of people - when he later became a mental health nurse, he'd already come across mental health issues from his experiences

0:09:00

Steve always thought he wanted to do nursing, had realized he couldn't be a casual, traveling worker forever - he was accepted by St Georges in London, UK - Steve did general nursing followed by specialty in mental health nursing - drawn to it in part because his grandfather spent his life in a mental hospital and died there

0:11:00

Steve was attracted to the physical and mental health of a person, to look after the whole person - when Steve first started, he worked in a large acute ward with 40 beds - it wasn't a kind environment, but the people he worked with were good - Steve was interested in community mental health, and there were a few teams at that time - when Steve returned to nursing in 2002, he recognized how much things had changed

0:13:00

After nursing for a few years, Steve started to work for US company SMS in the UK - they provided IT services to health care and Steve thought he'd work for them for 6 months but stayed to 10 years working on clinical systems and became a senior consultant - working on 'clinical systems' meant he spent a lot of time on wards and with doctors - Steve also specialized in clinical governance showing the clinical credibility of the system

0:14:45

Steve tweets and talks about medical errors a lot - the 1980s things were different, a lot of shocking things - Steve worked on a ward where one doctor would not tell cancer patients they had cancer, something that wouldn't happen now - Steve has seen medical errors happen and 1 doctor say another is responsible, but nothing came of it - there was no structure to deal with it - doctors and nurses were a law unto themselves

 

 

Arrogance and Paternalism

 

0:15:30

A recent case in the UK where a doctor didn't tell a patient a cancer diagnosis and that has hit the headlines - Steve thinks it is arrogance - but often patients would ask nurses for the truth and would be told - the kindest way to describe doctors holding back a diagnosis is paternalism, "I'm the doctor, your the patient, I know what's best for you' - still common unfortunately

0:17:00

After 10 years in IT, Steve returned to nursing in 2002 - worked for local 'assertive outreach team' to work with people who have been labeled 'hard to engage' but Steve said its the services that are hard to engage - working with people that are marginalized, they had more freedom to try different approaches and had a lighter case load

0:18:30

Steve worked with people who took street drugs - his approach was to include their drug use in their recovery plan - they would try to find what worked with each person - Steve had seen a lot of meds given to people to sedate them - sometimes meds just made people look like they were better to the clinicians, but they actually felt terrible

0:20:00

Steve would ask his clients 'what would help?' - Steve had to build trusting relationships - he spent 3 months talking through a door crack before one client let him in - one client told Steve he appreciated being treated like an ordinary person, this was the best compliment Steve received

0:21:45

Sedating patients and giving information are both medical error, and can lead to harm - there's a lot of research showing antipsychotics and how they make patients look like they're better, but they're not - arrogance is a medical error - for mental health, health care workers can persuade people to do things that are wrong for them

0:23:00

In the UK, the mental health act, to lock someone away, a mental health assessment is undertaken and different people do the assessment and recommendation - there is a big legal process, it doesn't always work well and some people have been 'sectioned' (locked away against their will) when they shouldn't be - Steve has seen people sectioned inappropriately

0:24:00

Steve thinks one person was sectioned because he was Spanish - this person had an English accent but was raised in Spain and had Spanish expressiveness, and that is why he was sectioned - on the other hand, Steve has seen some really ill people who initiated a mental health assessment, and he was very worried they would not be sectioned because they were such a risk to themselves

 

 

Oliver's Campaign

 

0:26:00

Steve is starting to learn more about the shocking situations where the parent, usually mother, is accused of 'fabricating or inducing illness' on their ill child - also called 'Munchausen by Proxy' - in children with ME (myalgic encephalomyelitis) / chronic fatigue syndrome, the blame shifts to the parents and that happens a lot - Steve has worked in situations where the mother is ignored and labeled as 'difficult'

0:27:15

The case of Oliver McGowan, he had mild autism and a learning disability - the state thinking it knows better than the parents is a huge issue in the UK - Oliver was 18 years old and died 2 years ago in hospital - he occasionally had seizures, and would be a bit agitated as he came out of it - they were investigating his seizures - he had been mistakenly sectioned

0:28:30

2 years ago he had a seizure and was admitted to hospital and was ventilated so they could do a brain scan - in the past, Oliver had been given antipsychotic meds and he always had an adverse reaction to them - at one point he had a dystonic reaction - an oculargyric crisis (reaction to certain drugs or medical conditions characterized by a prolonged involuntary upward deviation of the eyes) - extremely frightening as your eyes roll back and you can't move

0:29:00

Other antipsychotic meds made Oliver feel like there were flies buzzing around in his head - Oliver was never psychotic - Oliver had a care plan that said not to give him antipsychotics - in the ambulance on the way to hospital he said 'please don't give me antipsychotics' - Oliver told staff again at the hospital and it was written on his drug chart in red ink

0:30:00

But he was given antipsychotics and died from neuroleptic malignancy syndrome, a rare but fatal reaction to antipsychotics - his mother Paula has campaigned for training in hospitals for all staff on disabilities and autism - just started rolling out Oliver's Campaign is hashtag (#OliversCampaign)

0:31:30

Doctors are duty bound to take the patients best interest decision by taking everyone's views into consideration and document it, but that wasn't done

0:32:30

Steve had a whistleblower experience - it is not just a hospital problem, it is society wide - when Steve left the NHS in 2006 he had some recommendations - the team he worked for was being disbanded, yet produced good service - Steve wrote a letter using the formal grievance procedure - but Steve deliberately copied the letter to one of the general practitioners the team worked with very closely

0:33:30

Steve was suspended - Steve thought, 'if you try to change things with a reasonable letter, and then you get suspended for 6 weeks' - he didn't want to work for that kind of organization - Steve became an independent consultant and got hired back by the same people for another 5 years - but in the NHS, people who speak out are ostracized

 

 

Whistleblowing

 

0:34:30

Eventually Steve lost all his work when he made a Protected Disclosure to the Quality Care Commission (QCC) about changing reports, bullying of staff - Steve had been hired to train nurses - he gave them an exam at the end because he knew they didn't know what they were training - suddenly they only wanted him to do the exam, not the training - Steve said these new graduates would fail his exam without training

0:35:30

There was an external review of Steve's complaints but he's never heard about it since - although they interviewed Steve, he's never seen the QCC report - he been blacklisted and that cost him some work - Steve had to reinvent his career - interestingly, other parts of the UK are inviting him to talk about this because they realize treating staff poorly is bad for patients and they can't recruit workers - Steve didn't want to be a whistleblower, he just wanted to do his job properly

0:37:00

The report was in 2014, but nothing has changed - Steve is involved with a group Whistleblowers UK - currently is a worker raises concerns about patient safety you'll probably lose your job - but the profile of whistleblowing has grown, and maybe at a tipping point - partially due to lack of staff and trouble recruiting

0:39:00

In part, due to Brexit, many foreign workers have gone back to their home country - reforms in 2012 was a disaster - Steve has looked at health care in other countries, and they have same problem

0:40:00

The problem recruiting is the culture of arrogance - Steve believes patients are their own best experts, and clinicians have got to change, there is no choice - must change some fundamental things - 'shared decision making' between clinician and patient is wrong, an arrogant way to look at it -

0:41:00

Clinicians provide information, patients make decisions - this change is happening fast and nurses and doctors are resisting - its a threat to their power - Steve doesn't want any power over people, because it works for everyone - if patients may make a bad decision and it won't reflect on the clinician

0:43:30

Heavy workload contributes to high rate of physician suicide - a high profile topic at the moment - some research has shown some physicians have committed suicide because of bullying - Steve does a lot of medical education now around patient safety and uses patients as co-instructors - his colleague Sam teaches with him on mental health

 

 

Labels can harm

 

0:45:00

Sam was and is a user of services, and Steve was his nurse - they teach the classes equally, they both get paid, there is tokenizing patients - Steve is developing that approach more and more - he often uses anonymized stories to tell about what helped

0:46:30

Patient safety in the UK is an industry, hierarchical - Steve will share stories with his audience in a helpful environment to talk about what would've been done differently - Steve also talks about errors his made - for example, he had a client who was labeled as 'aggressive' and Steve followed the care plan that said this person had borderline personality disorder and hinted strongly she was manipulative

0:48:00

Steve basically fobbed this person off, but came across her a few years later in a different environment with a longer assessment session - Steve realized that the care plan he'd been following, and notes about her, was wrong - Steve managed to get the notes changed, the care plan changed, a note from the psychiatrist and the diagnosis changed, and this person is now a psychologist

0:49:30

Steve has some problems with diagnostic labels - in mental health they can be really unhelpful - a 'working diagnosis' may be helpful if shared with the patient to work together - but that is often not done - and for doctors to get paid, they have to give a diagnosis, ticking a box

0:51:15

Labels come in fads - in early 2000s, it was borderline personality disorder - now its emotionally unstable personality disorder - Steve worked in a place where there were 2 psychiatrists, one often labeled a patient as borderline personality, and the other would label same patient as schizophrenic - the treatments are totally different, and they may not have either

0:52:30

Ticking the box contributes to clinician burnout - pressure to diagnose and create a care plan - Steve was not allowed to spend more time to really figure out what was going on, and that is destroying mental health services

0:54:00

Steve would like to do more medical education - he's involved with an organization called MedLearn with an approach to let patients be their best experts - he supports things that challenge the hierarchy in health care

0:56:30

It is still the norm not to pay patients for their contributions to research - and it is very patronizing

0:59:30

In the UK, patients often have 4 or 5 clinicians, who never communicate in any meaningful way

1:00:00

Steve thinks to change the medical culture, patients have to be brought in - there was a unit that was dysfunctional, lots going wrong - because it was specialist unit, there were patients on the board, and when they found out things were going on, then things changed - so patients on the board would help, and real patients - they don't necessarily have to have board experience, they can learn that - patients need to be in the hierarchy and involved with what's going on in a non peripheral way

 

 

Connect with Steve Turner

 

Twitter: @MedicineGovSte

 

Facebook: Steve Turner

__________________________________________________________________

 

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.

  

 

 

Elsie Saba: Tell the World of Doctor's Death Traps, Deceit and a License to Kill

Author Elsie Saba tells about her experience of misdiagnosis of an ovarian tumour and subsequent surgery where the surgeon removed the tumour, her ovary and - to Elsie’s surprise - he also took out her uterus.

But Elsie didn’t have an ovarian tumour. And the surgeon didn’t remove her ovary. What the surgeon did do was leave Elsie with immense pain, an inability to urinate, falsified her medical records, and then told her it was all in her head.

As you will hear, Elsie is a fighter and wants to warn others about the dangers in the medical industry and has penned an account of her medical experiences in her book Tell the World of Doctor’s Death Traps, Deceit and a License to Kill.

SHOW NOTES

Fulbright Scholarship

0:05:30

Elsie Blanche Saba was born in 1930 - born in Nazareth, when it was in Palestine - when she was 2 months she went with her mother to see her father who was working on an archeaological dig in Egypt for Princeton University - then transferred to Antioch (Turkey) to excavate Roman artefacts - Elsie went to a private school

0:07:30

WW II started and Princeton closed the project - her family to moved to Haifa until Germans bombed and they moved to Nazareth - her parents enrolled Elsie in Smith's College in Jerusalem until 10th grade boarding school with German nuns - when war got worse and they closed the school - so her parents hired French nuns to teach Elsie - when she finished high school, Elsie told her parents she wanted to smuggle herself to the American University in Beirut, Lebanon

0:09:30

Her father said she would be killed crossing the mountains - Elsies parents hired a smuggler to get Elsie across the mountains to Lebanon - eventually she went back and forth 4 times

0:11:30

After she graduated from university she returned to Nazareth until 1955 and moved to the US to attend Kalamazoo University with Masters Degree - in 1962 Elsie won the National Travel Award and in 1964 she won a Fulbright Scholarship to study in Paris

0:12:30

Elsie taught high school in San Diego - in 1972 while helping her students she fell on the floor and went to her internist and he took an x-ray of her back and her ankle - Elsie had severe pain but the internist said it would go away - then Elsie started hemorrhaging and went to a gynecologist and he said Elsie had an orange size ovarian cyst and he needed to operate - Elsie said 'no', she felt she the problem was in her right kidney - but he wouldn't listen and Elsie got another referral

0:14:30

Else went to Dr Vandenberg and he agreed she needed an IVP (x-ray of kidneys) and that she did not have an ovarian cyst - but her internist, Dr Pund, refused the IVP - Elsie begged him for IVP because she knew her right kidney was the problem - Dr Pund said he was not following Dr Vandenberg's orders and told Elsie to have the operation to remove the ovarian cyst - after the operation Elsie could not urinate and told her gynecologist and he said it was 'in her head'

0:16:30

The gynecologist said her removed the cyst and her right ovary and a hysterectomy - for 3 months she went to many doctors and the gynecologist said Elsie was healthy, but her internist refused to sign her disability form and told her to go back to work - Elsie told him she couldn't urinate, and he said he would tell the gynecologist to send Elsie for IVP (to x-ray her kidney)

 

 

Ovarian cyst surgery

 

0:18:30

Elsie asked the internist to send her for IVP but he refused and 'didn't want to get involved' - Elsie went for kidney x-ray and then was sent to a urologist and he said he had to do exploratory operation to find the problem - but Elsie's parents said 'no' and told her to go Dr John Steel, urologist and he took x-ray and diagnosed Elsie with a utero pelvic obstruction and that she was born with it

0:20:30

The nerves of the right kidney are pressing against the ureter and causing the obstruction - he sent Elsie to the hospital for an operation - when she woke she could not move her hands, her arms, legs, or breathe, she was dying - Elsie's parents moved from Israel to San Diego

0:22:30

Elsie's parents hired 3 nurses to care for Elsie in the hospital - Elsie told Dr Pund that she did not believe him when he said she had an ovarian cyst - Dr Pund said he saw the cyst and the ovary removed, but Elsie did not believe him - Elsie had a draining tube inserted to drain urine - Elsie was also harassed by her employer / school

0:24:30

Elsie's class was full of trouble makers - the school had the highest criminal rates - their school wanted Elsie to return, but Elsie said she was too sick - 4 days later Elsie was back home but so sick, she will never forget it: Elsie could not move or ask for help, but she saw a beam of light focus on her utero pelvic obstruction

0:26:30

Elsie went to many doctors telling them the location of her pain, they all said it was 'in her head' - Elsie had to return to work teaching but was still in severe pain and went to see Dr Pund, but he was not there, so Elsie saw his colleague Dr Carmichael, but he refused to help her - Elsie tried many other hospitals and none would help her - she wrote many letters but no one would help her

0:28:30

Elsie's bungalow and classroom where very cold - when Elsie got home from work she cried because of the pain - in the middle of one night, Elsie heard a voice in her sleep telling her to see Dr Michael DeBakey in Houston, Texas - this was after Stanford doctors told her they would do nothing for her - Elsie went to an attorney and said insurance was not paying her because her medical files have been falsified

0:30:30

She hired the attorney - the hearings kept getting postponing for 8 years, then Elsie was told that the statute of limitations prevented her from presenting some of her evidence - Elsie asked her attorney why he didn't protect her, and he said 'because you are nothing, you are a woman and these are 6 male doctors and you are nothing, he kept repeating

0:32:30

Without a doctor, Elsie had to get treatment other ways - she got doxycycline from Tijuana in order to survive - in 1979 Dr DeBakey hospitalized Elsie for 2.5 weeks to run many tests - Elsie found out she still had her ovary and the hysterectomy was unnecessary, and the ovarian cyst did not exist, she never had it - in the court room, the defense claimed Elsie's right ovary had been removed, but she had the recent x-ray to prove it, but the judge refused to allow that evidence

 

 

Courts are for the rich

 

0:34:30

Dr DeBakey's report, which is in Elsie's book, said she still had her ovary, and her right kidney had some minor damage from the obstruction, but she should never have been given toxic antibiotics from Dr Steel, they made her very sick - and she didn't even have an infection according to the Houston urologist - but no doctors want to be involved in the scandal

0:36:30

Elsie had many tests from different hospitals and none of them showed infection - before Dr DeBakey died, Elsie went back to get the tests repeated - he told her she needed annual xrays of her kidneys and an MRI - Elsie made a mistake in telling Dr Pund that she was seeing Dr DeBakey and word got back to Dr Steel

0:38:30

A nurse told Elsie that Dr Steel instructed another doctor not to tell Elsie the true facts - Elsie had a dream of the doctors pushing over a cliff but she managed to escape - Elsie called a taxi at 10pm and snuck out of the hospital without being seen - and in the morning flew back to San Diego - for the next 12 years Elsie lived with pain and without a doctor - she then met Dr Marino

0:41:00

Dr Marino was her doctor until he retired a few years ago, now she has no doctor - Dr Steel had done Elsie's abdominal surgery through her back, cutting her nerves, including her sciatica, and that's why she can't walk and has to use a walker

0:42:30

Elsie has written her book to warn others that going to a prominent doctor does not mean they are honest - going to the best hospital, does not mean they are honest - Elsie has a nurse who comes once a month to re-new her medication and will write a prescription - Elsie realizes she will never get help in the US because of her falsified medical record

0:44:30

Elsie wants to send copies of her book to woman in Congress - 'wake up', you have to pass laws to stop doctors from falsifying records, cannot prevent other doctors from helping patients - the law has to be changed - American courts are corrupted and if you're not a millionaire, the courts are not for you - the courts are for the rich doctors, the rich insurance companies - Elsie had to pay 1,000s of dollars in premiums and her insurance company did not help her because her health records were falsified

0:46:00

Elsie's attorney wonders if the judge in her case was bribed - Elsie sued 6 doctors, but she didn't want their money, she just wanted her medical record to have the truth so she can get help - years later Elsie found out Dr Steel's license was revoked for scandalous reasons - Elsie couldn't write her book sooner because she kept falling - she broke her wrist, her hip and injured her liver

0:48:00

On one of Elsie's mountain crossings, she met a Catholic priest, Father Michael, who said he was a psychic - she later found out he was the best psychic in the Middle East - he told Elsie that she would have a severe operation in her lower abdomen - he said she would die for a few seconds but would make it

0:50:00

The priest also told Elsie that she would write a book about her experience and it would be heard by many and change a few things in the medical profession - Elsie paid for the publishing of the book because she wants to help people - she wants to tell people that if someone says you're crazy, don't believe them, believe yourself - and that is Elsie's story.

 

 

 

Connect with Elsie

 

Buy Elsie's book on Amazon

 

Buy Elsie's book from Outskirts Press

 

Social media:

 

https://facebook.com/outskirtspress

https://twitter.com/outskirtspress

https://pinterest.com/outskirtspress

https://instagram.com/outskirtspress

 

_____________________________________________________

 

Like what you read / heard / watched?

Support Medical Error Interviews

Become a Patron

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

Or $5 / month to be a Premium Patron and watch the video versions of Medical Error Interviews.

Be my Guest

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

Scott Simpson: 

Counsellor + Podcast Host + Patient Advocate

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

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

I have been living with HIV since 1998, and thanks to research and medications, it 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.

Need a Counsellor?

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

  

 

Hillary Johnson: The Banality of Medical Evil (part 2)

In part 2 journalist Hillary Johnson shares more about her work and her life. If you’re not familiar with the story of how a biological disease that occurs in sporadic and epidemic forms was labeled as ‘all in your head’ by the Centre for Disease Control, than you’ll want to hear how it all went down from the one person who uncovered the corruption.

Hillary talks about her healthiest 9 months in 35 years of being ill when she was taking Ampligen and why she’s not still taking it. Hillary shares about being banned from the Centre for Disease Control (CDC) for seeking the truth and how that didn’t stop her from writing Osler’s Web. Hillary also tells how the CDC and a United Kingdom psychiatrist obliterated the lives of millions of patients worldwide by perpetuating a psychosomatic label that denied them biomedical care.

 

SHOW NOTES

 

Heart attack and cancer

 

0:06:00

The cardiologist found abnormal EKGs - myocardia eschemia, everything short of a heart attack and refused to approve Hillary for surgery until she found what was wrong with Hillary's heart - but Hillary had to fly for a funeral and had a heart attack on the plane Hillary returned to New York about 5 days later, and went to the cardiologist and the results showed Hillary had had a heart attack and the cardiologist again refused to approve Hillary for thyroid cancer surgery

0:07:00

Simultaneously, Hillary was working with a lawyer for 4 years fighting with disability insurer who said Hillary was making up her illness - the lawyer suggested to ask the cardiologist for a note for the insurance company - but the cardiologist refused - but the next day her staff notified Hillary that she'd been approved for surgery, so Hillary called the cardiologist and she said that it had just dawned on her that Hillary had cancer and needed surgery and "whatever happens, happens"

0:08:30

Several years later Hillary had heart attack symptoms again so made an appointment with the cardiologist - the cardiologist met Hillary in the waiting room and said she'd only agree to examine Hillary for a heart attack if she agreed to seek psychological counselling

0:10:00

About 6 years ago Hillary went to an ER with cardiac pain - they cared for her for 10 hours and recommend she see a cardiologist - this one said Hillary's symptoms were just stress - Hillary's EKGs are always wildly abnormal but she's given up trying to get help for it

0:11:00

Sometime, and usually now, Hillary does not disclose she has ME to a doctor - but even when she does disclose, it changes the relationship with the doctor, they pull back, not as friendly - there is no understanding or knowledge among doctors and we can thank CDC (Centre for Disease Control) and National Institutes of Health (NIH) - derogatory media worsens and they never stand up to contradict

0:13:00

They are glad, it allows them to continue to barely fund research - an anecdote about naming ME (myalgic encephalomyelitis) as CFS (chronic fatigue syndrome) and those CDC letters - one of the doctors made a joke that by calling it other than CFS would set up insurance companies for 'chronic' disbursements - in other words, protect the insurance companies

0:16:00

Simon Wessely in the United Kingdom has done a lot of damage saying ME is psychosomatic - after the CDC published its report and rolled out the name CFS - Wessely sent Holmes a letter, and you could almost see Wessely rubbing his hands together in gleeful anticipation - he congratulated on a wise choice in name and he had always thought ME was psychosomatic not organic and eager to collaborate for a long future

0:20:00

Hillary believes all the psychological proponents should be criminally charged - patients in the Netflix documentary Afflicted are suing the producers for defamation - Hillary hopes they bankrupt Netflix - but the original defamers, Gary Holmes, John Kaplan, Larry Schonberger really controlled this disease: no funding, no resources, no epidemiology

 

 

Goose that laid the golden egg

 

0:21:45

Hillary believe there should be a trial in The Hague about ME - and wonders if it is possible to un-Knight someone in the UK (re Wessely) - Wessely's corollary in the US was Stephen Strauss - Hillary's editor said Strauss reminded him of the quote about the Nazis and 'the banality of evil'

0:24:00

The CDC obliterated ME patients by saying ME wasn't real - they caused problems with medical care and personal relationships with spouses and families - Cheney said so much of his time was taken by attorney's in divorce proceedings and testifying that ME patients were sick, not crazy

0:25:30

Hillary reported the crimes of the CDC and were followed up by 2 federal investigations and her allegations were confirmed - the CDC received money starting in 1988 for ME research, about half a millions first year, and more each year after - after a decade was $150 million, but the investigation only went back 2 years, about $13 million misappropriated

0:27:00

This funding was informally known as 'the goose that laid the golden egg' for all the scientists who were using ME funds for their pet projects, not for ME research - each spring the head of CDC would go Congress for more funding - Hillary has the letters, a list of lies - Hillary's contacts in the CDC were secretly telling her ME research was not being done - just lies for a decade

0:29:00

The investigation by Health and Human Services (HHS) and General Accounting Office (GAO) both confirmed Hillary's work in Osler's Web - she is bewildered why there has not been a lawsuit - Walter Dowd was Acting Deputy Director knew the money was misappropriated and said he would make it right - instead a whistleblower scientist was then stopped from accessing the CDC and shortly after left before he could be fired for spilling the beans

0:31:00

Was CDC ignorant, incompetent, colluding, sociopathic? Hillary found a letter posted in CDC, the infamous "Dear Sirs" letter - devastating satire and making fun of people very ill and laughing at their pain - it had been posted for over a year - and a few years later it was still posted

0:35:00

Larry Schonberger was very resistant to removing the "Dear Sirs" letter from the bulletin board but finally relented - it has come back to haunt them as Hillary included its full content in her book

0:37:00

Hillary saw a neurologist about 5 years ago and he asked about her symptoms - everything about this disease has befelled Hillary - small strokes, brain abnormalities, encephalitis 5 or 6 times - Hillary feels like she's in a dream: the old 'me' that lived for 35 years without ME, and the current 'me' who has lived with it for 35 years - its hard to believe she was that person - and often dreams of her life before - overall waste of time / life

 

 

Ampligen gives 9 healthy months

 

0:40:00

Pneumonia and the flu are like mosquito bites compared to ME - Hillary dreams about all the books she would've written, the number of friends she'd have - she found no way to express how devastating and terribly unwell she was to friends, they did not understand her life had changed, that she was suffering - as years went by it became easier not to try

0:42:00

The lives of her peers at age 35 look unreal compared to Hillary's reality - before illness, her life was full color and full of activity, many friends, she had talent, went places, had a career and identity - now her life is hazy black and white blur

0:44:00

The best 9 months of 35 years with ME was taking Ampligen - the disease impoverished Hillary, and she has remained poor, she does try to write and has a subscription website - she has written about ME, and that is about her life - Hillary has tried to stop thinking about all the bad things US, Canadian, British, etc governments have done to ME patients, but she's always sucked back in

0:46:30

No one has had Hillary's experience of living with this illness while being with these people laying down the policies - those interviews are still fresh in her mind - they are real flesh and blood people who took those actions and have failed Hillary and everyone else who has ME - she has a tremendous amount of anger

0:48:00

"Hillary Johnson, writing with quiet fury" is one her favorite lines from a review of her book - Harvey Wittemore, famous Nevadan and helped found the Wittemore Peterson Institute, said "I had a difficult time reading your book. I would get to the end of the page and be so angry I would want to throw the book at the wall" - that is what Hillary was going for - she still hopes some day the evidence laid out in her book serves as a basis for reparations and lawsuits from those who've had their lives destroyed and live in poverty - unfair, unjust, criminal and still going on

0:51:30

The book is one thing Hillary is pleased about, she only wishes she'd been healthy enough to do more

0:52:30

Hillary first heard about Ampligen when it was first given to a woman named Nancy Kaiser who was dying of ME - Dr Dan Peterson was reading about Ampligen, an immunomodulator and anti-viral - it was invented late 60s / early 70s, it is a drug, interferon, synthetic and it is non-toxic, even FDA admits it is safe - 1,000s of doses given to people with ME, it is probably most potent drug that could possible help people - does not help everyone, but helps most

0:54:10

Hillary managed to get Ampligen when she was ill for 29 years - it involved laying on your back for 4 hours for infusion, twice a week - at the beginning you want to feel like you want to crawl into a cave and sleep - but around 4th or 5th month, things started changing, very gradual - by 9th month a friend who did not know Hillary before she was ill, within 10 minutes said "you're completely different, I feel like I'm meeting you for the first time"

 

 

FDA denies Ampligen

 

0:55:45

Hillary was upright, felt sharp mentally, walking felt like gliding, a strange feeling and she finally realized that it was the first time since she was 35 years old that she was walking without any effort - no pain, or dragging her legs, not out of breath - this is how healthy people, but it had been so long for Hillary it felt unfamiliar - Ampligen is a fantastic drug

0:57:30

AIDS drugs were fast tracked with very little evidence they worked, but activists demanded access to medication because they made life hell for the people at the Food and Drug Administration - Hillary has talked to the CEO of Hemispherx Biopharma that make Ampligen, and he said "people with ME need to go to the parking lot of the FDA office in Maryland with a bunch of mattresses and set them on fire - something that will get people's attention"

0:59:00

He's right, but we never see that being done - people create petitions that get sent to someone who could care less - in about 2012 the hearings for approving Ampligen occurred and many patients arrived to testify how it had helped them - the FDA voted against approval, but said it was safe - Antony Kamaroff voted 'no' - Beth Unger who manages ME at CDC voted 'no' - so she's been useless

1:01:00

For some unknown reason, people with ME, a disease that destroys lives, are not allowed to have Ampligen - its safe, efficacious - is because medicare would have to pay for it? Is there concern from insurers? Why does FDA continue to deny proof of efficacy? - Hillary knows Canadians are trying to access it via a special access program

1:02:15

Hillary had to stop Ampligen because Hemispherx ran out of supply - it is very expensive to produce and they are a tiny company, and after that only people who could pay for it got access - she was receiving it on a compassionate care basis, she cannot afford Ampligen of $40k year plus infusion / nurse costs

1:03:30

After 3 or 4 months without Ampligen, Hillary's symptoms returned and walking became difficult again - this also adds to Hillary's anger

1:05:00

4 million Americans may have ME, 80% women, apparently their expendable - Hillary has lost about $1.5 million in income because of ME - Ampligen is a sad story, there are others who had Ampligen withdrawn - Hemispherx are using Ampligen in oncology trials in the US and Europe, maybe they can increase access to people with ME

 

 

Osler's Web

 

1:07:10

The only thing that ever helped Hillary, was Ampligen - gammaglobulin used to make her feel somewhat better - she hears talk now of low dose naltrexone, but there was talk about in 1987 - it feels like she's seeing a replay of the 1980s - but people much more activist oriented and they modeled their actions after AIDS activists

1:09:00

San Francisco city council held meetings about ME and invited doctors like Paul Cheney to testify, but you don't see that any more - now they tell their congress person their stories of woe, but Hillary says no one cares about those stories, and they do not change policy - healthy people don't want to hear about it - its not the way to go about making change

1:11:00

The only thing that motivates Hillary to write is ME - but does tweet a lot so is doing journalism by tweet but hates it - because it is simplistic it reduces reporting to the number of characters - twitter induces snarkiness - Hillary would like to do another book about having written Osler's Web, there is a big story of how she interacted with the subjects

1:13:00

The original Osler's Web manuscript was 3,200 pages and she had to cut 1,200 pages - while she often says 'don't write about yourself', in some circumstances you have to write about events you are involved - but her health is a challenge - in many ways Hillary is sicker then 10 years ago, more disabled - it must be ME combined with age

1:15:00

Hillary tries not to get angry and frustrated with herself and has to constantly remind herself that its not that she doesn't want to do 'that', its that she can't do 'that' because of this illness - but since she's been ill for so many years, she sometimes forgets that - Hillary says she's talked more about herself in this interview than any time before

 

Connect with Hillary Johnson

 

Website: Osler's Web

Twitter: Osler's Web

Facebook: Osler's Web

 

 

_______________________________________________________________________

 

Scott Simpson: 

Counsellor + Podcast Host + Patient Advocate

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

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

I have been living with HIV since 1998, and thanks to research and medications, it 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.

Need a Counsellor?

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 find out if I have any counseling appointments open:  RemediesOnlineCounseling@gmail.com

 

Be a podcast patron

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

Or $5 / month to be a Premium Patron and watch the video versions of Medical Error Interviews.

Be my Guest

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

Hillary Johnson: The Banality of Medical Evil (part 1) - Investigative journalist pulls no punches to the medical industry.

Osler’s Web author and whistleblower Hillary Johnson got up close and personal with the heroes and villains inside the medical industry. Motivated by her investigative journalistic sense of health care corruption, and by her own experience with chronic illness and medical errors, Hillary exposed the $150 million criminal diversion of researching funding that prompted two federal investigations.

In part 1 of the interview, Hillary shares about her early life and passion for writing, working for major magazines like Rolling Stone, and how a mysterious illness derailed her sky-rocketing bi-coastal career.

Always a Writer

0:05:30

Hillary born in Minneapolis, Minnesota - lots lakes, father had a huge sailboat and race it every summer - in winter Hillary skied and skated - wonderful childhood but marred by parents divorce when she was 12 - Hillary wanted to live at an elite girl's boarding school - an incredible advantage to attend - later attended UC Berkeley for undergrad degree in journalism, the only thing she ever wanted to do - moved to New York to attend Columbia University for a Master's in Journalism

0:09:30

Hillary has been obsessed with writing her whole childhood - had written 3 novels by the time she finished grade school - Hillary's mother was very literary person, read 2 or 3 books a week, and pass along to Hillary - and she become comfortable with language and was encouraged by her mother

0:11:20

First job was a newspaper reporter for Minneapolis Tribune - but a very sexist environment, only 2 women reporters on staff, Hillary was sexually harassed - hired to Congressional Quarterly in Washington DC, but again sexual discrimination in that workplace

0:13:15

Hillary then worked at Women's Wear Daily, a very trendy newspaper - also covered culture, Hillary assignment - could interview writers she admired, business people (Malcolm Forbes), Watergate prosecutor...fascinating people of the time - did for a couple of years then hired by Life Magazine, a news reporter for 4 years

0:15:05

At age 31, Hillary decided to leave Life to do freelance work - was a contributor to Rolling Stone magazine - wrote for all major New York publications - a wonderful life - traveling back and forth between her 2 apartments in New York and Los Angeles

0:16:30

When in LA in March 1986 to work on her first book - on March 8th woke up sick and that was the end of her journalism career as she had known it - but it took about a year for her editors to get the message because they kept calling asking her to work - Hillary didn't want to believe she was permanently sick

0:17:30

Hillary was soon diagnosed with encephalitis - it was hard to explain to people neurological deficits - on morning of March 8th, within 2 steps of walking she crashed into the wall - she was supposed to go with her fiancee to meet his father and they drove to another city but Hillary was too sick to raise her head to look at him

0:20:00

Hillary had very high fever, extremely sore throat - she couldn't understand the conversation at lunch - went to washroom and passed out and had to be carried out - Hillary lost consciousness multiple times that day, could barely walk - she knew she was incredibly ill but couldn't imagine what it could be

 

 

Outbreak

 

0:21:30

Hillary's fiancee was alarmed - they knew each other about year - Hillary just got worse until she was bed ridden, unable to walk - he took her to see a doctor, but had to be carried - by chance, this doctor had been talking with his friend at the CDC (Centre for Disease Control) so was aware of Hillary's symptoms but didn't have a name for it, but had been seeing 20 to 30 patients a month with identical symptoms

0:23:30

Hillary was wheeled into the waiting room - after 2 years of Hillary being severely ill, her fiancee moved on and the relationship ended and she moved back to New York

0:25:15

Hillary has been sick for 35 years and has had many, many experiences of outrageous behavior by doctors - the first doctor she saw said he didn't know what was making her sick, but that she should be fine in 2 years but don't come see me before then - Hillary realized she was really alone with her illness

0:26:50

About 6 months later, Hillary felt like she was dying and called that doctor - he was very angry, told her not to call him because he has seriously ill patients in his waiting room - Hillary was shocked and realized she was alone with her illness

0:27:50

An article in the LA Times about an outbreak in Incline Village, Nevada - Hillary later wrote a book about the Incline Village outbreak: in 1984 the rich enclave had an outbreak of ME (myalgic encephalomyelitis) - large percentage of people fell it, perhaps 300 and more who never went to see the town doctors - 6 doctors in town, but only 2 were highly competent: Paul Cheney and Dan Peterson, both knew a lot about infectious disease

0:30:30

The outbreak got a lot of publicity in mainstream media - Hillary would find out later the CDC had been receiving calls from all over the US and the world about this disease for quite a long time before Incline Village - but CDC simply did not want to believe it was a disease, they called it hysteria and tried dismiss it - a very political move

0:32:30

CDC sent 2 investigators - one very inexperienced - the more experienced stayed 5 days and did not interview any patients - the other one, Gary Holmes, stayed about 10 days and examined a few patient, unwillingly - Dr Cheney said Holmes preferred reviewing charts in the office and didn't want to meet patients - Hillary interviewed those patients, and they felt like they were imposing on Holmes

0:33:45

Hillary later uncovered that the CDC had been receiving reports about this for quite a few years, so was already spreading, especially on the US coasts - San Francisco and Los Angeles were seething - so Incline Village was not ground zero - its importance was that the CDC had a chance to do serious science, but they didn't do that

0:36:30

Because so many patients were women, CDC decided it was hysteria - except there were men sick too - more cynical explanation is the AIDS pandemic already caused a lot of concern, and the government couldn't bear to acknowledge it

 

 

Banned from CDC

 

0:38:30

Prior to the CDC involvement, previous outbreaks had no hint of a psychosomatic explanation, but was a transmissible disease - no other explanation why the disease would explode - the US government probably knew it was infectious based on immunology - one of the first findings in ME in very low natural killer cell (NK) function, published in 1992 - only see low NK in cancer and infection

0:40:30

Many examples of ME research that scream infection - because ME happened concurrently with AIDS is an important clue that should be examined - Hillary says there was concerning at the CDC about long term disability payouts if credence was given to ME - Hillary accessed via FOI (freedom of information request), letters of 5 -10 scientists who worked with Holmes to come up with a name for the disease

0:43:30

They considered 'myalgic encephalomyelitis' and ruled it out because it implied it was a real, organic disease and they didn't want to do that, it was clear in those letters - but the all time favorite name was 'chronic fatigue syndrome' (CFS) and it did not imply it was infectious, so no public panic - the term inspired hatred of the people with this disease

0:45:30

People with ME were renamed as having CFS and experienced ridicule, dislike, disgust, outcast - the name had an incredibly powerful impact - Dr Anthony Kamaroff at Harvard was key in the naming, but has subsequently apologized - he claims at the time he did not foresee how damaging the name would be - but no one else has apologized

0:47:00

Stephen Strauss and Dr Nelson Gantz are both dead - Holmes tried to engage a famous infectious disease specialist, Elliott Keith, and he was part of naming process for a while, but when they decided on CFS he wrote a letter of contempt and withdrew his support and asked if they were trying to create another psychological syndrome

0:49:00

Hillary's book about this is titled: Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic - Hillary was forced to use CFS in the title in 1985 for marketing purposes - the book was written for the general public, but mostly read by ME patients - took 10 years to write while very ill and poor - $700 / month for a decade - its still available on Amazon, but Hillary never made a penny from the book

0:52:00

Back to Hillary's personal experience: she was feeling like she was dying and called her doctor and he dismissed and chastised her - Hillary says what is different in 2019 is social media

0:53:30

Patients don't feel as isolated as in the 80s - a CDC supervisor referred to Hillary as 'live and in captivity', reducing her to an animal - his point was that it was rare, there was no outbreak - he later banned Hillary from the CDC, that didn't stop Hillary and she set up office in the lobby and use the public pay phone

 

 

 

Encephalitis

 

0:56:30

Hillary asked many CDC scientists for an interview and interviewed quite a few after she was banned

0:58:15

Hillary was very ill for 6 months, couldn't walk, barley lift her head off the pillow, had already been diagnosed with encephalitis - but she was still being asked to work, and didn't want to disclose how seriously ill she was - the editor at Rolling Stone kept asking

1:00:00

Hillary made the connection between cases in Los Angeles and in Incline Village and mentioned to her editor at Rolling Stone that it could be a big story and he wanted her to explore it - as ill as she was, she began to investigate and talked to the person in charge of epidemiology of LA county and she said they were getting lots of calls about this disease, more then AIDS - she said she was very concerned

1:02:00

But everybody was working on AIDS, and there was no staff to work on ME - Hillary dragged herself to Incline Village and spoke to Paul Cheney - Hillary realized her life was about to change - she felt Cheney had almost solved the disease in '86

1:03:30

Cheney had done a lot of investigation and gathered much info - Hillary knew Cheney was an extraordinary figure and a book could be built around him - he was primary figure and inspiration - but the story got bigger than Cheney - she has 100s of hours of interviews with Cheney

1:05:30

Hillary also interviewed Dan Peterson a lot, who was resistant to speak to a journalist but warmed to and trusted Hillary

1:06:30

Hillary's most outrageous experience with health care was with a woman cardiologist - Hillary had thyroid cancer in 2008, it was like a head cold compared to ME, it was 'no biggie' - given what she'd been through in 20 years with ME - cancer was not a surprise - the only thing that frightened her was the anaesthesia which can be difficult for ME patients

1:09:30

Hillary was ready to die, having been so ill - after 35 years its hard to remember what normal is

1:10:30

The cardiologist found abnormal EKGs - myocardial eschemia, everything short of a heart attack and refused to approve Hillary for surgery until she found what was wrong with Hillary's heart - but Hillary had to fly for a funeral and had a heart attack on the plane

END OF PART ONE OF INTERVIEW

 

Connect with Hillary Johnson

 

Website: Osler's Web

Twitter: Osler's Web

Facebook: Osler's Web

 

______________________________________________________

 

Like what you read / heard / watched?

Support Medical Error Interviews

Be a podcast patron

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

Or $5 / month to be a Premium Patron and watch the video versions of Medical Error Interviews.

Be my Guest

If you are a survivor, a victim’s surviving family member, a health care worker, advocate, or policy maker and have a medical error experience you would like to share, send me an email with a brief description of your experience: 

RemediesPodcast@gmail.com 

Scott Simpson: 

Counsellor + Podcast Host + Patient Advocate

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

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

I have been living with HIV since 1998, and thanks to research and medications, it 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.

Need a Counsellor?

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 find out if I have any counseling appointments open: 

RemediesOnlineCounseling@gmail.com

  

Jayne Barnard: "Falls" author medically dehydrated for 20+ years and doctors oblivious

Award winning detective mystery author Jayne Barnard has been permanently harmed by medical error: multiple doctors over multiple decades failed to investigate if chronic dehydration from medication was slowly killing Jayne.

Through her own research and tenacity - and in spite of a neglectful and ignorant health care system - Jayne has come back from years of being bed bound and non-functional and unable to communicate, to pursue her creative passion for writing. 

Jayne is still quite disabled and needs oxygen and regular saline IVs in order to function for 15 minutes out of every hour. Recently she started a new medication and it is the 1st time in 27 years that her neck muscles were strong enough to hold up her head without pain and collapse.

Jayne shares how she had to orchestrate her own diagnosis and treatment, how she managed to live for years being severely sick and disabled and cared for by her family, and how she created her own incredible stranger-than-fiction narrative by producing award winning writing and snagging a 3 book publishing deal for The Falls Mysteries trilogy from a mostly horizontal life.

 

Sick Baby

0:05:40

Jayne's father was in the military, air force, so although born in Cold Lake, Alberta (Canada) and was an ill baby, spent a lot of first year in the hospital - her family was terrified she'd be dead before her first birthday - started as a kidney infection, very high fever

0:06:45

They moved 12 times in 14 years, in 5 provinces, 2 US states, and Germany on a NATO base - Jayne forced herself to overcome her shyness to make friends each time they moved - she learned she had to make her social life, nobody else could do it for her

0:07:45

Jayne went to college for social work, got married, got divorced, back to University for psychology and theatre, almost finished her degree and got a diagnosis of ME (myalgic encephalomyelitis) in 1992 - onset seemed sudden at the time, but in retrospect the signs were there

0:08:30

Jayne was under a lot of stress being a single Mom with a controlling ex-spouse - there were not a lot of supports for chronically ill people - she was commuting about 70km / 50 miles, both ways and unbeknownst to Jayne, her car was spraying antifreeze and she was inhaling it - she got an opportunistic infection

0:10:20

Jayne had such severe cognitive impairment from being sick that she had a car accident - she went to her doctor and said something is seriously wrong - Jayne always had an abnormal response to exercise, but she was fit and a runner and hiker, biked, swam - but always 48 hours later severe muscle pain

0:11:30

Jayne learned about post exertional exacerbation of symptoms, now recognized as hallmark symptom of ME, was always an experience of Jayne in response to exercise - but when she got sick she could barely walk 2 blocks

0:12:30

Her GP wanted to send her to a psychiatrist - but Jayne kept insisting it was physical and he sent her to the town's only internal medicine doctor and he was dedicated to finding out what was wrong - Jayne got a diagnosis of 'chronic fatigue syndrome' from a specialist

0:14:50

But the specialist said there was nothing they could do for her - that was crushing for Jayne, she was at the start of her career, in peak physical shape, and this diagnosis hit like a ton of bricks - if she didn't have 2 small children she probably would have committed suicide

0:15:30

The internal medicine doc prescribed steroids, and they kept Jayne on her feet for 2 years - and this is the 1st of 2 medical errors impacting Jayne's life: he also prescribed aldosterone / spironolactone - it acted as a diuretic and it pushed Jayne into chronic dehydration causing long term tissue damage and was not corrected until 2014

 

 

 

Crippled and Home Bound

 

0:18:00

So it was 20 years of chronic cellular dehydration and none of the many specialists she saw ever looked into it - one of the global problems with an ME diagnosis is that patients are so scared of being accused of psychosomatism they don't seek mental health support - Jayne was in great need of grief counselling - she's been carrying this grief for 25 years

0:19:30

Grief for loss of career, most of her friendships, ability to raise her children as she wanted to, loss joy of further education - she lost her entire life in about 4 months and had to keep it together for her children - Jayne thinks everyone who gets a serious diagnosis should be offered counselling support

0:21:20

Fast forward 8 years (in 2000) Jayme met her 2nd husband and moved to Calgary (where she still lives) - the drier weather and higher altitude put more stress on her dehydrated body - her house was at same elevation as Banff ski resort, so in the highest elevated city in Canada - from the day she arrived in Calgary her health deteriorated

0:23:05

Until 5 years later she was completely crippled and home bound with teenagers - Jayne was too sick to have care: sound hurt, light hurt, weight of clothing hurt, very often too sick to eat - the smell of cooking food would make her to ill to eat for 12 to 24 hours

0:25:30

But caregivers need instructions and that takes energy - writing a 2 sentence instruction for a caregiver was beyond Jayne's ability for 5 years - she could not finish a sentence verbally or in writing - Jayne attributes it to lack of blood flow and oxygen to her brain - Jayne is currently receiving oxygen from a tank to her nostrils

0:27:00

Jayne started drinking rehydration fluids instead of just water, and started to receive supplemental oxygen, her brain started to wake up, but it took about 2 years - yet none of the many doctors even mentioned dehydration

0:28:50

Jayne still doesn't know if she has mild or medium or severe ME because so many things have gone wrong - her liver and blood vessels are impaired, and genetically she can't expel toxins very well - her body is a toxic waster dump, stored in fat, and when Jayne burns fat she feels like she's being poisoned

0:31:00

Jayne is active with the online community to give back to the people who kept her alive - she sees a lot of people globally with similar symptoms - Jayne suspects that ME is a unique disease for everyone depending on their genetics and environmental exposures

0:32:30

Now in ME community, there is greater recognition of benefits of IV saline - in 2012 when Jayne started more research - Jayne had to urinate frequently, impeding her ability to rest and sleep - in watching a video of research Dr de Meirleir that he treats all his ME patients with diabetes insipidus protocol and an antidiuretic

 

Geographical Cure

0:33:50

Jayne had to convince her GP to prescribe her an antidiuretic, Jayne had to jump through medical hoops for 6 months to get a paediatric dose to allow her to sleep for 8 hours - this was a huge step in addressing her chronic dehydration - the downside is it washes out sodium creating electrolyte imbalance - Jayne does not understand why she was not told that up front

0:35:30

Jayne tried the 'geographical cure': if she lives somewhere else, it will be different - so she moved to sea level on the west coast of Canada for a winter - but Jayne didn't realize the move would change how much diuretic medication she needed - her sodium levels dropped and she was nearly comatose

0:37:30

Because hyponatremia (low sodium) symptoms are almost identical to post exertional malaise - nausea, aching, brain fog, etc - nobody around her realized it was not another ME crash - but her new landlord saw her and said he had to take her to emergency and they gave her high sodium IV for next 48 hours

0:38:10

But Jayne had neurological damage for next 2 years - auditory hallucinations, visual distortions, and severe memory impairment - took a year to regain cognitive function

0:40:00

A lot of her memories are still gone, a blessing and a curse - for so many years she was filled with grief and rage, and a lot of those memories of pain, anguish, despair have faded and that is a relief

0:42:20

As she recovered, her muscles and joints moved in new ways - her brain was able to think through the stages of a problem again, a huge benefit as she know had the benefit of a thinking brain - rehydration and freedom to mover her body without pain was huge for Jayne

0:43:45

She was able to attend and dance for 3 minutes at a family wedding, when people weren't expecting her to even stand - in her research, she found that ME doctor David Bell experimented with giving his patients a litre of saline a day and it cleared their cognitive fog and orthostatic intolerance and improved their quality of life

0:45:00

Jayne tried to get her doctor to prescribe IV saline but was declined - doctors only consider it for emergency situations and they don't realize people with ME are in emergency situations every day - but Jayne found a functional medicine doctor that would prescribe IV saline every 3 weeks in dry climate, and 4 weeks in wet climate to keep her sodium and fluids up

0:46:15

This allowed Jayne to double the number of steps she can take before collapsing from POTS - process food better, less nausea, think more clearly - but the best thing is that from 2014 she's been able to write again - a passion she thought forever lost - it was a huge boost psychologically

0:47:00

Jayne still has ups and down physically - a cold will put her in bed for a month - some days have to keep light low - can't drive in traffic due to constant influx of stimuli - live a quiet and isolated life, but well within confines of her home

 

 

 

When The Flood Falls

 

0:48:00

Jayne's family struggled with her health when she got sick - a lot of responsibility fell on her oldest daughter, age 14 - she had therapy in her early 20s to deal being forced to grow up quickly and fear of only reliable parent was going to die

0:49:15

Jayne's younger son was buffered by his older sister's support, but resentful that Jayne couldn't be there for him as a teenager - and he hasn't completely accepted that Jayne is physically ill - so he carries a lot of anger

0:50:20

Jayne and her second husband thought Jayne would be more functional if she didn't have to work outside the home - but she got worse and he had to make a big adjustment and learn caregiving skills - but when her daughter graduated from university she moved back home so Jayne's husband could fulfill his life long dream to sail across the Atlantic on a tall ship - he trained for a year, was gone 7 months

0:51:30

Jayne didn't want her poor health to further limit her family, so they would hike on the weekend and take pics to show her - having a child psychology degree, access to internet, ability to analyze research and supplements were a big advantage - even so, the lack of medical support nearly killed her multiple times

0:52:30

Jayne's book, When The Flood Falls, was started in 2004 but had to stop 3 years later when too sick - she created a secondary character "Jan" who has ME - ostensibly the book is crime novel / suspense, but Jayne was also showing the stigma attached to ME

0:55:00

"Jan" is sensitive to light, sound, house bound, vulnerable to treatment fads, like stimulants - Jayne was able to accurately describe the stimulant's effect on a body that has little energy

0:56:30

In 1998, from what Jayne could glean from the internet, she hypothesized that ME was a mitochondrial impairment - now 20 years later scientists are finally doing those tests and have found energy impairment - ME patients are in a constant state of brown outs - so not surprising the array of ME symptoms

0:58:30

Sometimes it is easier to process grief by putting onto a fictional character - Jayne did a lot of grieving writing the character of "Jan" - watching every one else live their lives - it was a way to detach from the grief and make it bearable

1:00:00

Early feedback on "Jan" was she was too depressing for a commercial audience - feedback from ME community is that Jayne stayed true to the ME experience while still making it palatable to the general public - Jayne's book and character also serve as outreach / awareness of ME to suspense readers

 

 

 

Where The Ice Falls

 

1:03:00

A typical day for Jayne is about 45 minutes of each hour laying on her chaise in a dimly lit room - this gives Jayne about 15 minutes of energy to be slowly mobile to make tea, putter around - Jayne saw a new internal medicine doctor recently and told him about her level of functioning - the doc said 'that must be terrible' and Jayne said that's the best she's functioned in 15 years

1:05:30

Jayne can't sit up to write unless she had a neck and shoulder and wrist braces - so she writes on her laptop on a wheeled hospital tray - she uses a light weight and ergonomic mouse and keyboard - always has pillows to support her head - for her last 2 books her voice has gotten strong enough that she can dictate to her phone, and it sends it as text to her laptop - she then edits later when she has energy

1:07:45

It takes Jayne a long time to write because she has to rest so much in between - but if she could not write, it would be harder for her to retain hope and optimism - Jaynes' writing process is unique and counter intuitive - she was in speech therapy as a child because she didn't talk - it took her a while to trust that verbalizing her writing would work - now she's written 2.5 novels that way

1:09:30

Jayne has just submitted the 3rd manuscript for the Falls series - her first book When The Flood Falls won the Unhanged Arthur, Canada's top prize for an unpublished mystery manuscript in 2016 - Dundurn Press offered Jayne a 3 book contract, a trilogy

1:11:30

Jayne is pleased her 3rd book, Why The Rock Falls, leaves the characters in a good place - and that readers will identify with "Jan's" improved health with their own lives - while ME is forever, it doesn't mean we have to stop living

1:13:30

At every stage of Jayne's recovery, there was a fear it would be temporary and that if one thing went wrong, the house of cards would collapse again - in 2013 her goal was to walk 50 steps and it took 3.5 months and she had to rest every 20 steps - taking a step off the sidewalk was risky - it is an act of faith that one extra step is not going to destroy her

1:16:00

Jayne's family has had to adjust to her improved health - for many years she was not strong enough to raise her voice to express her wishes - so her gains in autonomy were a big shot to them

 

 

 

Health Gains

 

1:17:30

Jayne helps promote her books by doing stuff online since she's not healthy enough to do in person book signings - her 2nd book "Where The Ice Falls" is a Christmas mystery and also deals with assisted dying - something ME patients often consider and would do if they had the energy - Jayne lived a good part of her life suicidal - but under Canadian law she would not be eligible for assisted death

1:18:30

Many people with ME would like that option because daily life with ME is unbearable - Jayne's initial reaction to finishing her trilogy was "I'm done, I don't need to push myself any more, I could die tomorrow and I'd be okay" - she's not used to not having every day be struggle - what has kept her going for 5 years was getting these book done

1:20:30

Jayne thinks she may her 15 minutes of energy each hour and write a radio play with some of her writer friends - she cannot not write, but it doesn't have to be for publication - and she wants it to be fun - 2 years ago Jayne started on low dose naltrexone helped calm her brain down - 8 months ago she started on low dose of mestinon based on research by Dr David Systrom at Brigham Women's Hospital

1:22:30

He found that low dose mestinon helped get more nutrients into cells and alleviates some of the aerobic deficit - not everyone is a responder - the 2nd day she was on it, a long time friend said she looked taller - it was the first time in 27 years her neck muscles were strong enough to hold up her head without pain and collapse

1:24:00

About cranio cervical instability, Jayne is not sure if its the 'chicken or the egg' - if poor muscle tone contributed to CCI, or if they were born that way - an exciting area of research, but also risky surgery - anaesthesia for ME patients or any one with a mitochondrial disorder needs to print out an emergency alert card so paramedics don't give you something that makes you a lot worse

1:25:30

A friend of Jayne's son was brain damaged from an appendix operation because of his unknown mitochondrial disorder and the anaesthetic - so patients need to make their surgeons aware so they are safe

1:26:40

Jayne hopes that people living with ME can find something joyful, even if its only 5 minutes a day - so they get a sense of peace and progress and hope

 

Connect with Jayne Barnard:

 

 

jaynebarnard.ca

 

Twitter: https://twitter.com/J_E_Barnard

 

Facebook: @FallsMystery https://www.facebook.com/FallsMystery/

 

Instagram: saffron.hemlock https://www.instagram.com/saffron.hemlock/

______________________________________________________________

 

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Scott Simpson: 

Counsellor + Podcast Host + Patient Advocate

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

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

I have been living with HIV since 1998, and thanks to research and medications, it is not a problem in my life. 

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Nurse CC: Medical Errors and the Medical Mafia

CC* is a Registered Nurse and has a lifetime of expertise and wisdom from both sides of the health care dynamic - as a patient harmed by medical care, and as a nurse. (* “CC” is a pseudonym to protect her identity.)

It is CC’s experience having a permanently damaged body from multiple medical errors that have motivated her to share her story of neglectful and abusive encounters with inept and egotistical physicians so that others are aware and can take steps to protect themselves.

The medical error damage to CC was compounded by a health care system designed to respond to medical errors with mafioso tactics: deny and defend and denigrate.

Nurse CC pulls no punches in telling the tragic truth of the power dynamics, push for profit, and the wholesale of humanity by the Medical Mafia.

 

SHOW NOTES

Childhood Spinal Infection

NB - some of these show notes are based on CC's preparatory notes. Those portions are CC's voice and are italicized.

0:05:00

Born in 1957 just north of Philadelphia to a white, middle class family. Grew up suburban, one of 4 children with a very tough childhood due to family dysfunction. I was extremely ill at age 6 with a spinal infection that resulted in extended hospitalization, inability to attend first grade for 1/2 the school year and confinement in a body cast and body brace for years. Despite many obstacles I was smart, had tenacity and fight that would both make me the awesome person I am today despite much suffering and societal disapproval.

0:06:05

Fought my way to be the first on either side of my family to put myself through college. I entered a collegiate nursing program in a religious institution where I hardly fit in but I had the ability, even by that point, to become a chameleon instinctually knowing how to acclimate to any environment I found myself in throughout my life. Once there, a new world opened up to me and I was on fire.

0:07:00

Began working in a hospital technical job in high school paying well and allowing me to support myself and finance my tuition, books, transportation with a small student loan. Became a RN in 1979. It was hell but I had only known hell all my life so I loved it. It felt normal. Drama, life and death, front seat row to people’s most intimate moments. However, I had empathy even at that point for any human’s suffering and this became more and more of a curse as I aged.

0:08:00

Of course I married, I was pretty, had a supervisory role within 18 months of graduation and by society’s yardstick I was doing quite well. Eventually I reluctantly had children which was interesting because I didn’t ever like children but succumbed to my husband’s wishes and that in and of itself is a miracle that I could only attribute to God. Once my first baby was born, I truly knew love for the first time in life. I wanted to be a full time Mom but this was not even a remote possibility.

0:09:30

CC chose to become a school nurse to be closer to her kids, but away from the life and death drama of ICU - CC had a 2nd child with many birth defects and she had to advocate for him - he'd be dead if she wasn't a good advocate.

 

 

Flouroquinlolones

 

0:11:30

When CC worked in ICU, flouroquinolones were not in common use - I have extremely hard scientific evidence that I was given Levaquin in 2002 during a surgery but that memory would never occur to me till my records had been destroyed due to laws allowing health care providers to destroy after 7 years.

0:12:30

CC was an emotional wreck after that surgery, crying all the time - when she returned to work she had a mean streak - she asked her surgeon friend for an antidepressant prescription, and that helped control her behavior.

0:13:30

In 2011, CC had bronchitis so just went to an urgent care clinic and was given Ciprofloxacin.

0:14:30

Prior to Cipro, I had been superwoman. I worked at times 3 jobs, obtained a Master’s degree and even a real estate license. So, because I was a school nurse and could be off for the summer which I never did, I remained in bed all summer. As September approached I called my internist to report this resulting in a few blood tests and being told I was just getting older. I had never been this age so I accepted this was normal.

0:16:00

CC's symptoms were extreme tiredness and weakness: she couldn't get out of bed - I drug myself to work, had been on an AD (antidepressants) since the surgery in 2002 which I knew when going back for my first post op visit I told my surgeon colleague, I’m mean. I need a SSRI, which sent me to a psychiatrist since that time. Of course all was attributed to my journey in life of mammoth stress and I happily took this which did allow me to continue at superwoman warp speed but in retrospect I had agitation and anxiety apparent but did not interfere with my ability to function.

0:18:00

CC says people in her situation are doubly traumatized when they realize they've been brain washed by the health care system she worked in - so they carry a lot of guilt as a health care worker.

0:20:00

By early 2012 I told my psychiatrist that I could barely get out of bed and he gave me a type of stimulant, not an amphetamine, called Provigil used for sleep apnea and MS (multiple sclerosis) fatigue. This allowed me to get through the work day, going to bed for a few hours at a time but I was able to earn money.

0:21:15

But I became pathetically agitated and no longer could physically be Mother Theresa as everyone knew me to be. I had anxiety to such a degree that if things were going poorly at work, I’d pick up the phone, say I was sick and had to flee on a few occasions. I knew something was wrong but I never associated the word anxiety, panic attacks to my situation. I was confused because I was being abused in the educational system but just performed at superhuman levels and now was saying no. They didn’t like that and labeled me a troublemaker and suspected of having mental health problems.

 

"Lamb being lead to slaughter"

 

0:23:30

I can trace back to late 2012 seeing a foot doc because my feet hurt but was told this was a bony deformity. I attributed it to being on my feet so much as a nurse. I never put together this was progressing small fiber neuropathy and docs certainly would never have a clue till they totally disabled me.

0:25:00

In the spring of 2013, my left foot swelled and was painful. I had done nothing. I could never be athletic because of my childhood disease but did the treadmill daily prior for decades. I saw another foot doc, told him just what I’m telling you and he ordered an MRI. He told me the MRI showed I bruised myself so I had injured myself. I adamantly said I did not, he became angry, threw the report at me to inform me I was wrong. Well I now know they are all Incompetent. So it was June 2013 and I spent that summer in bed and the swelling subsided. 0:26:15

Fall of 2013 I returned to work and immediately my right foot swelled and became painful. I no longer could rest and figured the other got better, I would muddle through. So In October, as I walked down the hallway, I felt a snap and thought this might be a breakthrough but quickly realized things got worse. I didn’t know what to do but happened to run into an orthopeadic doc from my days in the hospital, showed him my foot and said I don’t even know what specialist I should see because I’ve seen them all. He recommended his associate, a foot and ankle surgeon. I made an appointment not knowing I was a lamb being led to slaughter. 0:29:00

November 2014, I was seen and work up done by his fellow who is already a podiatrist, now doing a fellowship in foot and ankle surgery. By now the pain In my feet was unmistakably burning of my soles. I told him everything but had no clue my demise started with Cipro, but even If I had, it would never had been recognized. He did say that my symptoms sounded like neuropathy and asked If I was diabetic which I was not. Subject dropped, never recorded on my medical records I recently discovered. Follow up MRI showed severely ruptured peroneal tendon and things were too bad for rehab. Surgery was my only option. I needed a fix. I had to work so I signed for surgery December 20, 2013 so I could finish my obligations before Christmas break to minimize my sick time. Mind you I could barely walk but I was always Superwoman and this was just how I functioned even as sick as I was.

0:31:00

I had been recruited to accompany the high school choir as a pianist because of political downsizing and building politics leaving the High School Music teacher without other options. He was the president of our union and powerful. But he paid a price just like me In his lifetime. I didn’t know him well and was actually afraid of him but he was desperate, he heard I was quite the pianist , listened to me play, and said “yep, you're good enough”. Now his standards of good enough, I found out as a did this for several years, was pretty high. He was one of the most talented musicians that I’ve ever been privileged to work with. I was again on fire as I worked with him and his Choir.

 

 

Nerve block

 

0:34:00

He protected me when people in management were abusing me and forcing me to go against my nursing license and this was a gift. On December 20, 2013, I went into surgery not knowing the life ending decision that I was embarking on. I was given a Popliteal Nerve Block for pain control post op and receiving general anesthesia. I left, felling no pain, got my narcotics and went home very ok.

0:36:10

The following day the nerve block wore off and I began screaming at the top of my lungs. Nurses in pain, like anyone, do not think rationally, because in retrospect, I had been nursing for 20 years in a hospital and the only patients I’ve ever heard scream like that were in a burn unit in the 80’s when pain control was barbaric. I’ve also endured a natural birth of a 10.5 pound baby and I didn’t scream like that. By evening, I broke down and called the surgeon who assured me I was almost over the hump. Ha. 0:38:25

My best friend and husband stood there paralyzed in fear as I demanded the bottle of narcotics fearing I would take them all. I screamed give me 3 fucking Vicodin. I knew that wouldn’t kill me but even in those days you knew that prescription was not going to last. I also screamed that my husband had to remove the bandages because they were giving more pain. He faints at the sight of blood but I was a crazy woman.

0:39:15

Finally, the surgeon after insisting I might have a blood clot first and I said absolutely not. There’s no redness swelling, tenderness. Then he said have you ever had back problems. I say no then remembering I pulled my back out the previous June but it healed. So he orders an MRI of my Lumbar spine. The MRI is done and my back is a mess Im told (every part of my spine is gone and so Is my jaw). 0:40:30

Flouroquinolone destroys every part of the body on a cellular level - CC has degeneration of her spine - she endures 3 epidurals in an effort to determine the source of the pain

0:43:30

CC under goes 3 epidural invasive, harmful, toxic spinal injections - she has been out of work for months and in tremendous pain - epidural is a steroid that is injected into the spine to decrease swelling, but if you read the data, it does not work, it is a bogus money making procedure - the doctor tells CC her only-from-the-knee-down pain is from her back, her sciatica nerve

0:45:00

CC then undergoes a very painful procedure - the doctor realizes CC has bad neuropathy, and tarsal tunnel syndrome - he tells her to see a neurologist, but CC has to find one - Feb 2014 CC sees a neurologist

0:46:30

Just prior to the MRI date, I am In agony and my husband has no tolerance for my pain thinking I’m a whiner. I drive myself to an ER at 4:30 in the morning in desperation. I tell them my story, which I recently read their documentation and all I can say Is; are they on drugs, does anyone even listen to the patient anymore, total incompetence. I think they’ll do the MRI sooner and I can get answers. Wrong. Narcotics (Tramadol-now classified by DEA (Drug Enforcement Agency) as a controlled substance Class 4 opiate and Valium-a muscle relaxant). Prior it was considered a safe opiate.

 

Misdiagnosis

 

0:47:45

CC saw the neurologist: That man I’m sure is on drugs even though I knew I was. He kept leaving the exam room, I’d have to go out and find him, he does no neurological exam and states I need to see a neurosurgeon. 0:49:00

CC says hospitals cover up medical errors causing harm and death - CC tells about a nurse serial killer who was caught and put in jail - some nurses knew this was happening - The Good Nurse by Charles Graeber is a book about it - a nurse went to the DA (District Attorney) and they exhumed a body, but the hospital didn't tell the examiner what drug to look for based on meds being diverted in the hospital

0:51:10

The pathologist tested 100 drugs, but not the one the whistleblower nurse had reported - and the serial killer nurse went on - worked at 9 institutions - they think he probably killed 300 to 400 people

0:52:00

CC is not glad she is alive, she wished the drug had of killed her - but she loves her kids and is plugging along - I See the neurosurgeon who emphatically shows me the MRI pointing out there in NO compression on those nerves. That pain Is not coming from your spine. I get a second opinion somewhere else and he says the same. He says you have to see a neurologist and I said I did, he sent me to you. He sets up an appointment the following day in that office.

0:53:15

Unfortunately I saw a nurse practitioner but it really wouldn’t have mattered. I ask her sobbing do you think I have MS. She so compassionately comes over and holds my hand and emphatically states there is no way you have MS. Wrong. Nurses are taught never to do such a thing but she felt so confident In her skills that she violated a sacred nursing ethic. But I feel relieved as I sat in the waiting room surrounded by patients horrendously deformed by neurodegenerative diseases. She put me on Gabapentin and orders another EMG of my arms , follow up in three months with a bonafide neurologist. 0:55:30

I return to my surgeon, he sees the horrendous EMG which although abnormal, unfactual and just documentation to support another surgery which was unneeded. I’ve now been out of work for over 3 months, in desperation. He sees the EMG report says I have Tarsal Tunnel Syndrome and offers to operate on that and maybe later do the other foot. I need to work, I think this might be the answer so I agree. I’m so stupid. Desperate people do desperate things. 0:57:00

I refuse the popliteal block because my gut tells me that this is not good. I come through that surgery and while convalescing decide I’ve got to see that neurologist before July. I see him in April. He’s not only incompetent, he’s a liar I now know. He raises his eyebrows that I had the TTS and says I do not recommend the other foot. I told him what the surgeon said and he just doesn’t comment. Conspiracy of Silence.

 

 

 "I asked him what he found and he refused to tell me."

 

0:59:00

He orders the vitamin levels I demanded reluctantly even though this Is research based. He says he wants to repeat the EMG on my legs. I tell him I have the appt for the arms June He says good do arms and legs. Wrong.

1:00:00

I show up at the hospital June 5th for the EMG with his partner. He looks at the order and starts ranting that he’s not going to do 4 limbs in one day and he’s got a splitting headache and has had a horrendous day. I offer to reschedule and he rants No. I now have been scouring the internet trying to find help because I’m even weaker. He then begins a two hour session of electrical shocks as he mutters only to himself as my friend holds my hand trying to help me through the pain. But, I finally hear him say ok, this is starting to make sense. I know he found something. When we are done I ask him what he found and he refuses to tell me. I beg him to see me because he’s the only Board Certified Neuromuscular Neurologist in the area. He says no. 1:01:30

I furiously start calling for the results. The neurologist doesn’t call me back. Finally I call and tell the nurse he better call me because if Im dying, I need to know to make arrangements. Takes days to even connect but I have now discovered there are Peripheral Neuropathy Centers of Excellence and the closest is several states away. I get an appt in less than 2 weeks. The local 2nd neurologist finally calls me back and tells me the EMG didn’t show much in those exact words. I say I’m so weak I can barely get out of bed and he offers me physical therapy. I refuse and politely tell him that I need answers so I’m leaving the state. He becomes angry putting up barriers to getting my records which ultimately I don’t need. Good people don’t care what others wrote. But because I’m a nurse, and know the ropes, I do obtain the EMG report which report which is 8 pages long single spaced starting with the statement this is a highly abnormal and complex EMG. Idiocy. Lies.

1:04:45

I go to the out of state famous guy and to my unknown luck, I show up on a day Obama was In town- I’m the only one there. All the extensive testing is done that day only needing a specialized MRI machine that is not available most places . Skin punch biopsy, 17 tubes of blood, 4 limb EMG done In less than 30 minutes. No begging for any test and more I would never have known. But he does say, because he was the first person that actually listened to me, find out the precise location on your body where they injected you for that block. 1:06:00

Two weeks after seeing the famous neurologist I return for the results but now I’m one of the herd of patients there. He tells me you have small fiber neuropathy probably from Cipro since that’s when it started but of course was placed on other neurotoxic drugs as every body organ began to disintegrate. I also have B6 toxicity which is neurotoxic (seen by the local neurologist several months earlier but never told). He goes on to explain that I had very sick nerves that could not sustain the further injury of a neurotoxic nerve block and they should have never given that to you. He adds and if you think I’m going to court for you I’m not. He states there Is nothing he can do for me. I sob and ask how I will support myself and his response was I could go on disability. He tells me he’s busy and no longer has time for me. I plead that I’m so weak I can barely get out of bed and he scolds me saying you’re not that weak. He ushers me out hysterical.

 

 

 

Another misdiagnsois

 

1:07:30

I return home. Still feeling like I’m dying and I really wish I had. On Saturday night, I’m desperate to see anyone who will help me. My long term internist had left the practice before the tendon rupture but I work with her husband. I email him and beg for his wife to call me and she does. I ask her the name of her Internist as I’ve seen multiple ones with no help and she tells me. 1:08:30

I see that internist shortly and am too weak to even sit upright to speak. She, upon entering, demands I sit up to speak. I cry and tell her I’m too weak. She does listen o my story and has a fuller history to more accurately understand. After my story her response is let’s do a brain MRI because they’ve MRId everything but that. I get that done and she calls me the next night telling me it looks like I have MS. I need to see that kind of Neurologist. I tell her I will not see anyone local. She sets me up with the nearest big city prestigious university head of MS.

1:10:00

That guy was not only Incompetent, he abuses human beings. He demands further invasive testing which was done there and my civil rights were violated and I was treated like an animal. 2 weeks later he tells me there is no doubt I have MS and wants me on toxic drugs immediately. I’m scared but too abused to accept this so I travel 9 hours to a nationally renowned hospital, lying in the back seat of our compact car writhing in pain. He does listen to my story. His verdict is that’s a weird story, but I have seen weird stories. But, I would not take those meds, continue to monitor your brain MRIs and if you get more damage, then take them. Good enough for me.

1:11:45

I have to return to the first MS guy and he’s angry but does not refuse to continue seeing me which many do. I have a few years of monitoring with no further damage revealed but cannot take his verbal abuse. I tell him how he’s hurting people with the things he says, he’s outraged, tries to pawn it off on me and I stand my ground and say I had someone beside me who heard everything you said. I point out the repeated things he said to me, he starts to grovel and says he never intended to hurt me. I respond, I know you didn’t so that’s the point of this conversation. You're clueless about your verbal abuse. I never go back because of that and other things.

1:13:00

In 2016 I read a medical journal article that is titled 40 red flags this is not MS. The first red flag is small fibre neuropathy. I email the lead author from a Colorado. He emails me back within 5 minutes. I tell him why I think I’ve been misdiagnosed. He says go see his coauthor whose closer. I do. The verdict there was I do not meet the complex criteria that Is universally accepted to diagnose MS. The McDonald Criteria. But I should be monitored. A recent medical publication cites 1:5 are misdiagnosed as MS some being on toxic drugs for decades. There is no real test for MS. So why didn’t the head of MS at a city prestigious university not understand the McDonald criteria? Because his big ego and status made he think he knew best. Scary.

 

 

Black Box Warnings

 

1:14:00

CC says recent research shows 1 in 5 MS patients have been misdiagnosed, and they may have been on toxic medication for decades

1:16:00

Black Box warnings on medication come from reports of harm from patients, it is not doctors submitting reports of adverse reactions - there is 1 doctor who is an adverse drug reaction researcher and he is a good man - he is the reason many of the Black Box warnings are at the FDA - CC contacted him and told about her symptoms

1:17:30

Small Fibre Neuropathy (SFN) - basically damage to the nerve - there is also Large Fibre Neuropathy, diabetics get - in MS patients, they experience neuropathy because the damage in their brain manifests the pain, not the peripheral nerve

1:18:45

The pain after her surgery was so bad CC would not have survived without an opioid - she had been prescribed Tramadol, but it was not labeled as an opioid, but it is an opioid and more dangerous than others

1:20:00

1.5 years later I’m (was) still on Tramadol for self preservation and having been told by a Johns Hopkins peripheral nerve neurosurgeon that after 9 months that nerve was not going to heal. My only options were meds or a spinal stimulator implantation. Now I’m near total psychosis. I’m obsessed with death In that I cant stop reading about It. I get pleasure from this. I sob 24/7. I can’t leave the house because I’m a public spectacle. I never ever took more than was directed. One day I take it, start to sob more and realize this poison is making me worse. I abruptly stop them. I go into withdrawal and writhe in pain everywhere for weeks. But when it’s over, my horrendous anesthetic nerve injury pain is gone. My brain was recreating the pain to get the Opioids. Tramadol was labeled in August 2014 by the DEA a a controlled substance, so providers didn’t think it was addicting even though it was an Opioid. Now we know about the corruption between the FDA and Big Pharma and the Opioid Crisis is the tip of the iceberg. My psyche Improved but I will never be normal.

1:22:30

The last years have been spent looking for The Holy Grail, trying alternative medicine and therapies but I now know my life is over. I will never work again, my personality is different as is my perception of people. One by one you r abandoned by friends, coworkers, family, religious entities and finally God. I live in unbelievable pain 24/7 that cannot be relieved unless I risk further brain injury. I’m too weak to leave the house and spend much time in bed. Very little left. I see that my situation Is the result of global profit driven societies from the rich down to the poor. 1:23:30

CC goes for stem cell therapy in Mexico as did others poisoned by flouroquinolones - and CC did respond well, but every body else got worse - CC's quality of life improved enough she could connect with others globally for mutual support - they all have multi system damage - CC was treated better by Mexican health care workers than any American.

---------------------------------------------------------------------------------

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Be my Guest

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

Scott Simpson: 

Counsellor + Podcast Host + Patient Advocate

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

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

I have been living with HIV since 1998, and thanks to research and medications, it 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.

Need a Counsellor?

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 find out if I have any counseling appointments open:  RemediesOnlineCounseling@gmail.com

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

Deann Merchant: Dental Poisoning - "Learn from my mistake. Don't become one."

From early childhood, Deann Merchant longed to share her voice and music. But as you will hear Deann explain, it was a way to escape the neglect and abuse. Neglect that left her mostly toothless by age 16.

As an adult, her musical passion would only be defeated by her lack of a toothy smile. She hid from the world.

But Deann was determined to pursue her passion and she re-mortgaged her house to finance the implant of dentures that would physically allow her to sing, and emotionally free her to perform in public.

Deann was fulfilling her life long dream and sharing her voice and music. She was the happiest she’d ever been.

But then her dentures started to fail, and the nightmare of losing her ability to sing, and confidence to appear in public, vanished.

That loss was compounded by 2 things: metal poisoning as the dental restoration leaked toxic elements into her body, and a dental industry without oversight or accountability.

Deann shares how she’s evolved to be an advocate for people harmed by the dental industry.

 

SHOW NOTES

Born Musician

0:05:10

Deann grew up in Massachusetts but her childhood was not stellar, she is an abuse and neglect survivor, this is important to her story because the abuse and neglect caused her to lose her teeth at 16 - she had a challenging and dysfunctional family

0:06:10

At 3 years old, Deann is on a bar room floor eating coke and chips - at 6 years old she was viciously abused for an undiagnosed physical ailment - at 9 years she watched her mother throwing a knife across a room - at 11 years Deann got tuberculosis because her father was dying in the house - and at 16 years old she lost her teeth

0:06:55

But underneath all that, Deann knew she had a voice and something to offer - music and singing - and that allowed her to survive - her family did not seek medical treatment or dental treatment

0:07:40

At 15 Deann got an abscess and the school finally stepped in and said Deann needs major dental work and it has to be addressed - but it was too late and too expensive to save them, so that had to be removed, except for bottom six

0:08:10

But because it was done to Deann before she had finished growing, it caused her upper jaw to atrophy immediately - over the years Deann became 'indentalist' / toothless because of the atrophy

0:09:10

This caused Deann to feel insecure - Deann has no doubt that had she been born into a loving and accepting family, she would have been on stage singing - but Deann's mother didn't want boys, girls were nothing to her, Deann was insignificant and a burden - this is set Deann up for adulthood in a really bad way

0:10:10

It made Deann hide with embarrassment and pain that she would be judged and couldn't do her craft of singing - all singers need teeth, saliva and all functioning - as Deann looks back, it looks like her mother knew singing and music was Deann passion and made it her sole purpose that Deann would never achieve that

0:11:40

Deann ended up with an upper denture and her 6 lower teeth - over the years because Deann couldn't use her molars to chew, she had to use her front and that caused her upper jaw to wear down, so that an upper denture couldn't be affixed

 

 

 

 

Going After Her Dreams

 

0:12:40

Because her upper denture was not properly modeled, it caused a lot of wear and tear on her gums over 27 years

0:13:40

Deann got married as a teenager, a mistake as she had no social and life skills to make a good decision - she grew up only hearing how stupid she was, how ugly, don't smile, don't talk, keep your head down, use your back because you don't have any brains - so when someone paid her positive attention, she was attracted to him

0:15:10

Her marriage lasted 10 years, but he was physically abusive, broke her dentures, black eyes, etc - but she had 3 boys and didn't want them to see or live in that same situation she grew up in - Deann had to escape the home to escape a death by her husband

0:17:10

Deann then met a man who changed her life - she credits him with supporting her to be the person she is today - he believed in her, encouraged her, positive reinforcement and encouraged her to pursue her passion for music, so they look into dental restoration in 2001 / 02

0:18:40

A dentist tried to take bone from her chin to use to reconstruct her upper jaw - but he was not prepared for such a severe case and it failed - Deann found another surgeon who said bone must be harvested from her hip so they could get enough for her jaw to support dental restoration

0:19:40

3 days in the hospital and Deann got 6 implants on the top and 3 implants on the bottom and everything went great, no problem - but then she goes to a prostodontist (specializes in bones of the face)

0:21:00

The prostotontist makes an overdenture (attachs to the implants) but Deann struggles to get it on and when she does it immediately feels like a vise grip causing pain - and it has remained that way for the last 14 years, causing constant pain

0:22:40

But at that time, Deann considered the dentures to be her second chance at life, at singing, the thing she'd been waiting her entire life and to have a functioning smile - so she ignored the pain and the prostodontist said there was no problem

0:23:30

9 years after the dental restoration, Deann realized her dentures were 'over loaded' causing biomechanical complications leading to implant failure

 

 

 

 

 

0:25:30

Deann has documented this on her website - she was experiencing a rash on her face, experiencing a metallic taste, throat burning and throbbing - she told the prostodontist that it felt like a vise grip on her face, but he said that her dentures fit - Deann fully trusted and bought into what he was saying - but she was still losing bone and tissue at an alarming rate and he did not pick up on that

0:26:40

Deann recognized a pattern among dentists is they always turn a problem around and blame the patient - one good thing about Deann's story is that she has proof

0:27:30

For the procedure, they make a model of the patients' mouth - and while the dentures fit the model perfectly, they had to be forced onto Deann's mouth - that should have been a red flag to the prostodontist but he ignored it - properly fitting dentures should feel like nothing

0:29:10

The prostodontist played on Deann's insecurity, blaming her - 2 things happened: a mis-installment, and the lab owner substituted material with chromium cobalt, poisoning Deann

0:30:40

Year after year, Deann complained about the dental restoration and they would make small adjustment to appease her - they kept telling her there was nothing wrong and that it must be her, and she believed them - but year after year she's getting sicker with fatigue, rashes, problems with her tattoos 28 years after she got them, digestive issues making her feel poisoned after she eats.

0:31:50

Deann hasn't been to a restaurant in 10 years, she can only eat once a day and needs to smoke marijuana to stimulate her appetitite and soften other symptoms - if she didn't take marijuana before she ate, she would start slurring her words, have trouble understanding others - the less she eats, the better she feels

0:32:50

Deann's research she finds a German researcher who says that swallowing the poisons from her dentures for many years causes digestive problems - only recently has the public become aware of the effects of cobalt, aluminum in the body

0:34:10

Nobody knows about metal poisoning, the US medical system doesn't have a lot of info about it and Deann couldn't find help - in November 2014 Deann had given up and was going to kill herself - she was a burden, she couldn't sing, she didn't know why she was sick - Deann also has MS (Multiple Sclerosis), diagnosed on her bladder and bowel issues and lesions in her brain

 

 

 

 

Cobalt Poisoning

 

0:35:20

Deann says important to know she was a heavy diet coke drinker and the nutrasweet can cause brain lesions - they prostodonist would use Deann's MS diagnosis as the cause of her symptoms, but the neurologist said her symptoms of metallic taste, rash, her hands would swell and get red if she touched metal

0:35:40

Deann then sees an allergist in Rhode Island and after examining Deann he said he's never seen a case like hers and didn't know if he could help her - Deann broke down crying, saying to him that he was her last hope and she can't continue - the allergist said that if this all started after dental work, has any one tested you for metals?

0:37:20

Testing showed cobalt - glowing like a nuclear reactor - in Deann's system - she then went to Dr Shalock in New York (who was working with the directors of the documentary, The Bleeding Edge) - Deann finds out she's also allergic to gold and tin - Deann goes to the lab that made her dentures with her allergy results

0:38:45

The lab gives Deann a copy of the chemical certificate for part of her denture - during this time she fired the prostodontist for working against her and poor work as he had messed Deann up so much she had trouble eating and speaking - this went on for 10 months

0:40:10

Deann started working directly with the lab owner fixed her lisp - Deann's musical career was taking off, but her dental work was preventing her from singing, from fulfilling her life's dream

0:41:10

The lab then used a 'system' and polyurethane to try to hold the denture in place - he told Deann he believed in the 'system' - but he lied, he'd sold the machine that made her prosthetic denture

0:42:10

Deann had audio taped some of her appointments, so she has evidence of what he said - she arranged a meeting with the lab owner - Deann brought her friend a nurse to the meeting - the lab owner accuses Deann of trying to hurt his reputation - Deann replied that he had watched her suffer and her health decline for 9 years, and that he only cared about himself

0:43:40

The lab owner said, 'good luck trying to convince the public, nobody is going to believe you' - in the following 4 years Deann lost her friends, her family turned on her and she has nobody to correct her mouth - he didn't just screw up her mouth, he screwed up her entire life

0:45:40

Deann couldn't find any help - not even her AG (Attorney General) - Deann filed a complaint with the Dental Board, supplying video and audio and witness statements, but she never got a reply - the lab owner refused to give Deann her file, told her to tell her attorney to request it

 

 

Re-mortgaging Her House

 

0:47:00

Deann makes a phone appointment with Harvard Dental School - Deann told the Harvard specialist that she was in a bind - Deann had re-mortgaged her house to pay for the $68,000 dental restoration but she's smileless, has to eat baby food, she's sick and struggles to eat and cognitively function - the only reason she is lucid for our interview is because she took medication

0:49:25

Deann's situation was completely avoidable: if the lab had not substituted metal in making the denture, and if the prostodontist had of listened to Deann about the denture not fitting and causing pain, we wouldn't be having this conversation - what really irks Deann is there is no oversight, they can do anything they want

0:50:10

Unless you can prove beyond a shadow of a doubt, you'll lose in court - and they will sue you - Deann can still be sued, and Deann cannot afford to be sued - she has audio and video evidence to prove her case beyond a shadow of a doubt, and she can't tell her story - she lives in fear and doing this podcast is a risk for her - she'd love to name names, but it would open her to attack

0:52:10

Dentist can jump into specialties without any real training - whatever will give them the most financial gain - originally only surgeons put in dentures, now dentists can take a course - they don't have to tell patients about their training - they love people who are uneducated

0:54:10

One of the 42 attorney's Deann contacted to take her case advised her to record her dental appointments - it is legal and admissable in court in Rhode Island - Deann has audio evidence of admission of knowledge of metals and improper fit - she has audio of admission that the way they decide what metals to use in dentures depends what is cheapest on the market that day

0:55:20

While the prostodontist advertised using all titanium and not precious metals because they are a nightmare - Deann is living that nightmare - Deann has a 5 year old granddaughter who wants to be a performer like her grandmother, but Deann can't visit with her because she's too sick

0:56:40

Deann asks: Is if fair they re-mortaged their home in good faith, while they're enjoying the fruits of their deceitful behavior - Deann hopes that if listeners get nothing else from her story, that they should be their own advocate - Deann went from working out 6 days a week, rode motorcycles, hiking, and now she can't get off the couch

0:58:10

Deann whole system is being poisoned - lungs, stomach, mucus and they think cobalt goes into her organs - her immune system is overwhelmed and she can't fight any viruses and susceptible to everything going around - doctors think her glands in her throat have been poisoned - she has chronically dry mouth

 

 

 

Dental Deception

 

1:01:10

She has to keep her conversations short - and has to hold the phone away from her ear - Deann tells patients to make sure to eliminate and rule out other diagnosis

1:02:40

Re Harvard, she was told to call the prostodontist secretary to make an appointment - Deann calls and emails but receives no response - so Deann ends arranging treatment in Costa Rica

1:05:10

Then she gets an email saying they can't do the procedure, try other dentists in Costa Rica - Deann asks for an explanation - they say how dare she record professionals and put it on the internet - Deann later found out that dentist worked for an American company

1:07:10

When she was first diagnosed with metal poisoning, it was hard for Deann to accept that ADA (American Dental Association) approved device would cause harm - know she understands they are just labels that don't mean anything because there is no oversight

1:08:40

How many labs are doing this to people like Deann, going to specialists to try to find out why they're sick - she got called a hypochondriac - Deann fell through the health care cracks as a child and its happening again

1:11:10

This is more than Deann's smile - she worries if she'll get cancer - and she'll have to pay out of pocket again to get her mouth fixed, to correct the damage they made - a bitter pill to swallow

1:12:10

Deann has become an advocate - she hates injustice - she started just telling her story on her website, but was finding others with dental errors - Deann found Tina Gomes, already a dental advocate and about transparency when dentists err, as the public has a right to know - 10 years later she's still fighting for that

1:13:10

Deann found a video of a dentist who was doing to surprise his client with a new smile - no permission, no informed consent - the client cried with joy - Deann thought the dentist was incredible, what he was doing for people...but something didn't feel right, so she investigated and found he was reprimanded by the dental board for selling prescription drugs

1:14:40

Deann then found a video of him being interviewed about his dental business, but Deann could see the host, a dentist, was uncomfortable with the answers he was getting - they were hyperbolic

1:16:10

The research in the last few years all say there needs to be more study of long term effects - so dental professionals who claim their dentures will last a lifetime - that is not true - Galvanism has been taught in dental school since the '50s

 

 

Galvanism

 

1:17:10

They're taught not to mix metals in the mouth, creating Galvanism - any 2 dissimilar metals in a liquid medium, like saliva, is creating current - you are a walking battery - this is what happened to Deann

1:18:10

Public told these devices are safe - the FDA (Food and Drug Administration) has received 2.1 million complaints about failed dental restoration - last 10 years peri implantitis has become a major problem - has something to do with substandard metals put in people's mouths - no long term studies

1:19:10

Deann knows a woman who went to a periodontist who said he does dental restoration - Deann told her to ask for the chemical certificate, he says he doesn't have it - Deann advises her to leave, stop giving him money - in an email he said he'd remove one tooth, and no implants

1:20:10

He gives her medication before the procedure that makes her loopy - the periodontist asks her husband to sign the release - she left the procedure still with the tooth that was to be pulled, and with 2 implants - she has a pace maker and is allergic to aluminum - so she has no idea what's in her mouth

1:21:25

Deann advised her to call an attorney, but she was too afraid - Deann's website is WelcomeToDDS.com - Dee's Dental Story - she also has a group for people to share their stories and information - she also has Dee's Dental Disaster page on Facebook - and keeps them updated

1:22:40

But people are afraid to complain because they can be attacked - Deann is willing to stand up and point her finger, but she can't - she shouldn't have to suffer and lose her best friend, her voice, that helped her get through the other bad times by singing or humming to herself - and to loose that, she might as well be dead

1:23:55

Deann's music can be found on SoundCloud under Deann Merchant - also on Reverb Nation - from folk to rock to blues - from Whitney Houston to Janis Joplin - Deann only had 7 years behind the mic, but it was the best 7 years of her life

1:25:10

She created her own music, raised funds for a rescue charity - she has 2 entries on DustMyBroom.nl - the validation by her musical peers that she had something to offer means a lot to Deann

1:26:40

Deann will continue with her advocating, but it is hard for her to keep up with the stories from patients - so she educates so people don't end up like Deann - we're brainwashed to believe only people in white coats know what's going on - others like Tina Gomes, Susan Chenesey and other advocates trying to change things, bring awareness, do the research

 

 

Becoming An Advocate

 

1:28:10

Deann's basic premise is to remember Galvanism, that what is placed in your mouth affects your whole body - comparing with organ donation, you need a donor with the same blood type, tissue type, even then require meds to stop organ rejection - but dental industry puts all these alloy together that will increase their profits - no blood levels, no medication, no long term study

1:29:40

Then pain, memory, vision problems - Dr Towers on The Bleeding Edge said that if it didn't happen to him personally, he would never have beleived it - dentists take info from device manufacturer as gospel and put it in your body - what goes in your mouth affects the whole body

1:30:40

Doesn't matter where in the body, hip, knee, toxic materials are released - Deann got involved in the Esure contraceptive controversy - because some of them were having dental problems, rashes on their body

1:31:40

Deann doesn't think metal can be put in a human body and not expect a reaction - no better advocate for a patient then yourself - but the dental professionals say the patient is the problem - so do your due diligence

1:32:55

Deann reads from a government website: "From 1995 these facts have been available but ignored. Overload, rather than component design, is the primary factor in the majority of prosthetic and implant failures. Safegaurding the long term integrity of the restoration, should be a shared responsibility between the patient and the health care team. As orthodentology increases at an exponential rate, it is extremely important to keep abreast of the latest advancements.

1:33:55

Deann advises to make sure they explain dental restoration start to finish - had Deann known and understood what a 'passive system' meant in 2005 she would have made them fix it - but she didn't have informed consent

1:34:30

Understanding Galvanism and how important it is before you go to a dental office so you don't end up like Deann - her website motto is "learn from my mistake - don't become one"

1:35:40

Deann encourages people to visit her website The Empowered Patient - take advantage of the info that is there - take advantage learn about metals and anatomy - and listen to your instinct - don't take dentist words as gospel

 

 

Connect with Deann Merchant

 

Dental Website: Http://www.WelcometoDDS.com

 

Pages of interest:

The Empowered Patient - educational page for patients

Share Your Story - The Patients Page - houses patient stories/comments

Kindred Journeys - Creative outlet on personal harm (If you use a computer, music will play automatically. I wrote that about our countries despair and had someone else do the vocals, she also added her own lyrics.

Angels of Awareness - Children who succumb to a dental procedure

 

Facebook Awareness Group & awareness page:

https://www.facebook.com/groups/TheFlossingofAmericasDentalPatients/

https://www.facebook.com/deesdentaldisaster/

 

Musical Achievements:

 

My first professional gig a year after stepping up to follow my passion was in 2009. Every project that followed gave me more confidence and nothing seemed out of my reach. https://www.youtube.com/user/natsway/videos?view_as=subscriber

 

Originals & obscure covers Http://www.Soundcloud.com/deann-merchant

Leaving a digital footprint for my granddaughter Natalie https://drooble.com/deanne.merchant/music

 

One of the first songs I penned was about rescue animals. A rather 'dark' toned song I was able to use it to raise just over $1000. for the rescue. https://www.amazon.com/Shelter-Helping-Animals-Song-Time/dp/B009NWL0JQ

We also did online gigs to raise money, this is one on the Gigee platform https://www.youtube.com/watch?v=25JmlOOmFjU

 

This website houses the most complete collection of renditions of Robert Johnson's infamous blues song 'Dust My Broom'. I have 2 renditions, 1 solo slide, and 1 band performance on this page http://www.dustmybroom.nl/2009.html. Actor Steven Seagal is also on that site. Main page: http://www.dustmybroom.nl/ 

There's also a great article written by Jas Obrecht for anyone interested in the story of the infamous song. 

 

Performing

 

The following link is the song I spoke of that was written by famous bluesman, Willie Dickson and sung by Howl'n Wolf. His granddaughter, Tomiko Dixon, had me do her version as a demo. It was my first crack at doing my own thing and transforming into my alter ego, Mama Dee.  https://www.reverbnation.com/deannmerchant/song/18609081-piece-of-the-pie The other song I couldn't remember the name of was 'Hallelujuah' that's also on reverb. 

 

I became a part of the SESAC family 2013 as songwriter. They are one of three of the major Performing Rights Organizations (PROs) that houses my small repetoire of original music.

This link is one of the two WIB's (Women In Blues) promotional video's I was lucky enough to have a sample of my music featured on. https://www.youtube.com/watch?v=YfKBz8ddC0k

 

I was also a blues DJ for a few years with an award-winning station http://kconlineradio.com/ and my show was called The Juke Joint (still on fb I believe). They still have me listed in the 'About' section surprisingly, lol. And, I still run my Halloween special on social media every Halloween just for good measure, lol. 

 

My partner & I Al Dzeizic won the 1st round in the 2015 Ct. Blues competition for a chance to play at the International Blues Competition in Nashville, TN. Just so happens, that venture got us a spot on 'GrandMa's Attic' on Ct. local TV. 

Proudest moment ever? Being in the same lineup as John Cafferty & The Beaver Brown band!! 

 

And one better? His sax player ended up becoming a personal friend. And standing in front of a captive audience performing my originals (even with a pic line in my strumming arm, lol)? OMG, PRICELESS!! 

 

That little girl who dreamed the impossible dream and against the odds, made it happen!! I was able to come full circle despite my mother's best efforts to break me. https://www.youtube.com/watch?v=x1A-AZATnVw

 

Be a podcast patron

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

Or $5 / month to be a Premium Patron and watch the video versions of Medical Error Interviews.

Be my Guest

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

Scott Simpson: 

Counsellor + Podcast Host + Patient Advocate

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

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

I have been living with HIV since 1998, and thanks to research and medications, it 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.

Need a Counsellor?

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 find out if I have any counseling appointments open:  RemediesOnlineCounseling@gmail.com

  

Lily Kaiser: Patient Gaslighting in Germany - How psychiatry harms

Lily Kaiser is from Germany, and she started getting sick while completing her PhD in mathematics. 

Unfortunately, Lily experienced patient gaslighting by the medical system: they denied her physical symptoms were real.

Gaslighting is a form of psychological manipulation in which a person or persons seeks to sow seeds of doubt in a targeted individual or in members of a targeted group, making them question their own memory, perception, and sanity. Using persistent denial, misdirection, contradiction, and lying, gaslighting involves attempts to destabilize the victim and delegitimize the victim's belief.

It is a common tactic used by sociopaths and narcissists.

And many psychiatrists.

As you will hear Lily report about her genetic testing, it turns out she has a rare pathogenic variant gene that may be responsible for her myriad symptoms.

Note that "Lily" is using a pseudonym to protect her from more medical gaslighting.

 

LILY KAISER SHOW NOTES

Math Wiz

0:05:10

Lily grew up in the country side of Germany with her brothers and sisters - Lily did well in school, very good grades - she was a healthy child with the usual stomach bugs and occasional headache - she did have weak upper body strength so got a poor grade for fitness class - Lily tried to train her upper body, but it did not respond - ("Lily" is a pseudonym to protect her from more medical gaslighting)

0:08:10

Lily studied mathematics at university and she choose this major in part because of the film "A Beautiful Mind" - Lily always liked math and participated in math competitions - she found studying math at university to be very enjoyable - Lily is by nature curious and likes to explore - and math is about thinking, but she cannot do it any more due to illness

0:10:10

But Lily did not like school before university because she likes her freedom and to make decisions for herself - so she had disagreements and fights with her teachers who wanted her to obey - thinking was prohibited

0:11:25

Lily started to get sick during her PhD studies - she had a urinary infection that was treated with antibiotics and experienced gut pain, in retrospect she thinks it is neuropathic pain, especially when she is crashed with post exertional malaise (PEM) - but during that time she continued to have pain and stomach problems - about 4 or 5 years later she got ME (myalgic encephalomyelitis), but initially ignored it as she could still do her work and socializing

0:12:50

But this changed with an infection, and ME started mildly - Lily started to experience the symptom PEM and was too sick to be social on the weekends as she had to rest and conserve energy to make it through the work week - no parties, no dancing

0:14:10

Lily has been diagnosed with Small Fibre Neuropathy (SFN) and it may be implicated in her gut pain - she had multiple infections before ME developed, she just thought she had the common flu but she had other weird symptoms like cognitive and balance problems and felt exhausted - she continued working out but this may have been a big mistake - she was doing high performance training about 14 hours a week before she got sick

0:16:10

Lily had a passion for lifting weights and doing aerobic training but with her symptoms she cut back to 7 hours a week - but it felt like the infection never went away and she was on sick leave for 5 weeks and took 1 week vacation but did not feel better - Lily did not want to miss work and forced herself to return - soon she realized she was not well enough for full time and reduced her hours

 

 

Being Gaslighted

 

0:17:50

But while she cut her work hours, she resumed her 14 hours of physical training - at this point Lily is convinced her problem is not physical, her problem is that she is stressed and that if she did the things she loved, her symptoms would resolve - that did not happen - but Lily was totally convinced that doing what she loved would fix her physical symptoms - her doctors reinforced that Lily's problems were psychological

0:20:10

After about a year, Lily started to question the psychological theory of why she was sick because in spite of doing exercise, she was getting worse - Lily wanted to return to work and secure her financial future - she asked her psychiatrist why she had not improved

0:22:10

Lily started to research her symptoms and when she read the Canadian Consensus Criteria (for ME) list she recognized her own experience and realized the psychological diagnosis was not correct - and this is when the trouble with all the doctors started - and if Lily wasn't the person she was, she could've ended up very depressed and suicidal

0:24:00

The psychiatrist did not agree Lily's symptoms were biological and switched her diagnosis from depression to somatoform disorder / psychosomatic - Lily got a copy of her medical file and read what the psychiatrist had written about her, including to her employer's insurer - the psychiatrist wrote that Lily had 'false illness beliefs', a psychosomatic condition and refuses to accept it is psychological - in reality it is the psychiatrist who has the false illness belief

0:26:55

At the same time, Lily also started to see other doctors and was lucky to get into the Charite (hospital) in Berlin and they specialize in CFS and do a lot of biological testing - but whenever tests came back normal, the psychiatrist would say that Lily must accept the psychological diagnosis - but Lily said they'd already tried to treat her symptoms as psych and it didn't work - they must find the problem in order for the correct solution - trying the same useless treatment is stupid

0:28:55

The psychiatrist did not believe Lily and wrote in her medical file that she will not accept the psych diagnosis - Lily was lucky to find a empathic GP so she didn't have to go to the psychiatrist any more - but Lily had continued working out to prove to the psychiatrist she wasn't depressed - but at this point Lily still did not know she had ME and that exercise was making her sicker

0:30:40

As soon as Lily got an ME diagnosis she learned about pacing her energy in order to not get sicker - but the ME diagnosis made her sad and grieve for the loss of her old life - and that she would have to start a new life

Rare Pathogenic Gene

0:32:25

Lily would've preferred having a depression or burnout diagnosis because the treatment for these were simple and she could carry on with her life - but with ME she had to accept facts and learn to live with restrictions - but Lily told her boyfriend that she felt like she was loosing part of her identity

0:36:00

The most difficult part has been the financial aspect and her inability to earn money - but she has lost from every aspect of her life: friends, hobbies are gone - and she's had and has huge problems with her family believing her - some don't believe she has a real disease and suggest she do yoga, or meditation, or see a spirit healer, or pray for god to help - god is punishing you because you don't believe in god

0:38:10

They are trying to explain it with easy solutions - but life is complex, and the solution will be complex - there is a point one has to accept that it requires a complex solution, and that is hard for most people

0:41:00

After being disillusioned by doctors, Lily started her own research and went for genetic testing via referral from her very supportive GP - Lily had whole exome, a subset of your genome, and known to be connected to genetic diseases

0:42:10

Lily told the geneticist about her 3 main symptoms that were most disabling - the genetic testing had rules to deterimine genetic diseases - but it is not like 23andMe, rather the geneticist looks at fundamental genetic variances

0:44:00

They did find a variant in Lily's genetics of 'pathogenic with unclear significance' - meaning this variant leads to disease in their modeling - next step is to try and find what illness is caused by the variant, to try to find the 'phenotype' - Lily was hopeful at first this would help her treat her symptoms, but there is research to be done

0:44:40

They also found the variant in one of Lily's parents and one of her siblings, and they both have some or most of the same symptoms as Lily - her parent was lucky they were in the US with good medical insurance at the time of illness and received good treatment - her sibling has the same set of symptoms, so they are mutual supports

0:46:10

It is a very rare genetic variant, less then 0.01 per cent - it is too early to say if the variant explains Lily's ME symptoms, or if a subset of people with ME have this variant - Lily questions if she actually has ME, although she fits the CCC 100%

0:47:30

Lily was reading lots of research papers about this protein encoded by her genetic variant - the receptor for the protein needs to be tested to determine if its dysfunctional - if so, it would change the function of the receptor - but its hard to find a lab to do the test and not available in Germany

 

Hope Springs Eternal

0:48:40

Lily, when she's feeling better, will contact international labs she knows from research papers that know about this receptor and to perform a function test - Lily has not been feeling well the last week, her SFN is acting up with lots of neuropathic pain in legs and arms, her head and neck, and couldn't mover her arm

0:50:40

Lily wonders if her disease is progressing - her sister says she is getting worse - Lily is using Lyrica and gabapentine for pain - Lily and her sister are using lidocaine patches on their skin where the pain is strongest and don't have much side effects - used a lot for neuropathic pain - cortisone also helps, especially headaches - but if she has a migraine only vimax helps

0:52:10

Lily also takes immunoglobulin subcutaneously and this has cut down on her infections - and that is good because they worsen her ME - her quality of life has improved - but this year she's more sick then last year

0:55:10

Lily has to spend most of her time reclined in bed - despite this Lily considers herself lucky that she can more than many people with ME - Lily wants to find a lab to test the function of her genetic variant

0:57:10

On good days she's happy for what she can do, and on bad days she reminds herself there will be good days ahead - Lily hopes to return to work, to resume her hobbies, to hike in the mountains again - Lily has not given up.

 

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