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Ep #18 - Jayne Barnard: Medically dehydrated for 20+ years

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Jayne Barnard Show Notes

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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

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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

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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

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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

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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

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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/