Myelin, ashwagandha, and a medical disaster
Someone just emailed a "miss you" to me, which seemed to be a sign to come back here and share the bad news.
There's more than one way to go astray when it comes to diet -- or, in this case, it might be more mishap than a terrific mistake, but it probably was my own doing.
Sometimes some seemingly trivial action can lead to such far-reaching consequences that it almost seems to carry a cosmic purpose.
To save time, here's a link to Wikipedia's article on Guillain Barre Syndrome. Read it, then pay especial attention to the Miller Fisher variant. This is me.
You can also Google Miller Fisher Syndrome. and also 'ashwagandha and myelin". Also notice the incredible usefulness of ashwagandha for a multitude of purposes, and its safety record of use by millions of people over thousands of years, with no side effects or drawbacks noted.
From now on, I take ashwagandha. A person from the piano tuners list (someone I didn't know) emailed me information about how a rebuilder who had been gradually losing strength to a slow neuropathy involving demyelinization started using ashwagandha and says it saved his life. Guillain Barre is a FAST (like a runaway steam locomotive fast) demyelinization of one's own nervous tissue, an autoimmune disease.
My own sad/STUPID story, which I owe the Apple due to my posting fondness for very rare/raw inside meat goes like this:
In a hurry on a day at the end of March, leaving for three jobs on the coast, I hadn't prepared Primal rations the night before, like I should have. I had some nice organic, free range chicken, nice fresh package. I threw it into a skillet and cooked it, then threw it into a container and stuffed it into the car. No fast food or scavenged groceries for me!
It sat in the car till lunch time ("well, it's still cool outside") then I ate most of it, for lunch and some more later. The meat was pink down by the bone.
Next day, runs, very strange (Primal?) runs? ... liquid, but no cramps, no fever, no nausea or vomiting, just lots of liquid over three days instead of the usual 48 hours. Reduced food a lot, very gradually started in again, just like for a normal intestinal bug or bad water or food poisoning episode. After about a week, was pretty good, gradually started normal food again a little at a time --- had a relapse. Same -- liquid, cleaned me out, no fever. Crawled back the same way, postponing a few tunings and picking them up later. Luckily managed several important concerts in between bouts, during the time when I felt fairly normal.
This happened two or three times, each time with me feeling a little weaker and more frustrated. Usually I self-manage this kind of thing just fine.
April 27 (call this "Day One") I woke at 4 a.m. for no particular reason. The fingers on both my hands were tingling a little, as if asleep. But my feet weren't, and my hands didn't stop when massaged, etc. The NEXT day I had the trots relapse, and was kind of woozy, but I managed to scrub out the bathroom. Also disequilibrium, and this time almost my whole hands were involved, except the little fingers, including the palms and thumbs. As the day advanced, my left hand got worse, while my right got a little better.
I realized by Day Two that this required real, traditional, heavy duty medical attention, and I struggled over the next two days to work my way into a system which I had avoided and ignored for three decades. A pleasant old customer allowed me to use his name as my primary care physician, and saw me on Day Three. Immediately sent me off to the ER because my blood pressure was very high.
It was a day too early -- and the ER doc dropped the ball. My blood chemistry was normal, just the sugar a bit high, the MRI showed I had not had a stroke. These would have constituted an emergency in his book. Apparently a complete neurological meltdown in a matter of three days did not. He sent me home, with a beta blocker. I took it, realizing that it is good against panic, and if ever I needed an effective cool head, this was the moment.
I had already made my will -- the old one was way out of date and had some mistakes in it ... somehow I couldn't face ending up in a hospital without a good one. Online (shameless plug) bought "legacy writer" -- you fill in the blanks online, pay them a very small fee, they email you a file which prints out to a valid legal will for your state, also instructions on how to sign and witness it.
As I drove to the local State Farm office (friends there) to get it witnessed and notarized, I noticed that as well as disequilibrium and awkwardness, my vision was getting tricky, trying to double. I got home, it was just a few blocks, parked the car, and started emailing various friends, acquaintances and business connections. I couldn't drive, so I needed for people to bring me whatever I needed, and also to get me to the doctor and/or hospital.
The concert people, way out into the summer, needed to know that they could not hire me for the foreseeable future, and to be guided to tuners who could stand in acceptably. Did that.
I should have gone back on Friday (Day Four). Neuropathy on the soles of my feet, my lips were buzzing, my teeth in front didn't seem to feel temperature. I was scared witless ... because of another aspect of the story.
*bumping up against post size limitations: see Part II*
medical disaster, Part II:
Starting Day Two, my sister and I had been ransacking the Internet for any and all information which might help us understand what was happening to me. She especially -- I was doing all the stuff I needed to spread the word, get my clients looked after, get some medical attention, and sort out things because I might be spending a long time in hospital.
She would stir up with dozens of possibilities, then rule out anything which didn't fit, and send me the short list. I'd throw out a lot of them as poor matches, and she'd start in again. By Friday (Day Four) with my feet and lips going numb, she hit the first link which struck me as important: she had found out that Guillain Barre Syndrome (not a perfect match for my symptoms, but close in some ways) is triggered by an immune challenge, like food poisoning or even a flu shot, and that one of the most common triggers is "campylobacter jejuni", commonly found in undercooked poultry.
Bingo One. I told her about the undercooked chicken and the month long on and off diarrhea.
The next day (when I should have already gone back to the ER) she nailed it. Short list:
* MS ("No," I said,"it takes years, not days.")
* botulism (very, very close. The docs asked a lot of questions about home-canned food or raw honey. Yes, I had had some raw honey. But the web said this usually affects infants under one year of age, who hadn't colonized their little guts yet.)
* Guillain Barre Syndrome.
I had checked this a couple days before, and had rejected it because it starts with weakness in the legs, and moves upwards. My legs were still strong, and my eyes and hands were bad. Then my feet later. It had moved down, not up.
Wikipedia article I just linked to: I found the Miller Fisher variant, fit like a glove. Sunday I had a friend take me back to the ER (different doc, very different reaction.) My pupils were unresponsive, my eyes couldn't follow a moving finger, my reflexes (remember the little hammer on your kneecap at the doctor as a kid?) totally gone, plus severe lack of coordination, proprioception, ... and I had double vision bad.
I should have gone in Saturday. The sooner the treatment is started the better. They did heavy-duty testing Sunday, started an IV drip with bottles and bottles of immunoglobulins on Monday, completed it on Tuesday. More people showed up and gave me neurological exams than seemed strictly necessary. Lots of penlights. "Oh, the battery is shot" and they'd find/borrow another. The nurse patted her waist pockets -- oh, the doc had borrowed it and kept it.
By noon the second day of the drip, my pupils tried to constrict in response to light. They didn't make it far, and then they expanded again, and they did a different amount from each other, but they were trying. That day two small groups of medical students were brought in by a doc, and one each group was set to give me a neurological exam. My room mate behind the curtain, a real cut-up with an incredible medical history, told me I should charge admission. I was very lucky she was there, with her devoted family and friends dropping in. We had a high old time. Her problems were very bad, stemming from birth defects, but she never let it get her down. We had such a neat time that nurses would drop in to hang out if no one had pushed the call buttons. Someone said it was like a dorm room.
Just as well .... I needed all the distraction I could get.
Guillain Barre is sort of weird -- people get it in days or even hours, it can lead to total paralysis where a ventilator is needed. Then, sometimes with aching slowness, it gradually self-corrects. Some have lasting deficits, especially older people. Others recover completely.
Miller Fisher even more so. Tends to improve faster than the classic GB, but no promises. Eye involvement is the pits. Partial paralysis -- I can move them some now, but slowly. Double vision weeks later (this is Week Four.) I use an eye patch. Also a slightly queasy stomach, because everything slows down. The body is in a state of chaos, which was why the blood pressure was high. It flips up and down erratically. So does the blood sugar, within bounds.
I never got into the more severe problems, like total paralysis. I managed to walk with a walker and some careful attention even at the worst. I could manage simple tasks. But there are lots of signs my nerves are still right on the brink of not working, and there's lots of pain (a nerve disease, Duh!) especially as previously out of touch places start waking up. I thought that my main task would be slowly working on small muscle control, but it has been managing pain, especially at night. I was extremely poor at this, still trying.
Also panic sets in easily. Is it getting worse again? I see the statistics -- people get better from this, almost always within six months. But is that going to be me? Some things get better -- feet okay now, can walk better. Others stubborn -- double vision, muscle pain, queasiness. And today my lips have been buzzing again, on and off, for the first time since about Day Six. OMIGOD, is it reversing?? Is the bad bug, never identified (why didn't they take a stool sample?) still down there, quiescent?
I think I never want to eat chicken again. My messy kitchen is spicky-clean and is going to stay clean. I sadly have bid adieu to rare meat, however superior the source.
Friends, colleagues, and the home health people have been there for me in a big way.
The silver lining: after years without any medical testing, I received a lot in a few days. My A1c, in spite of my being 64 and overweight, was 5.5, normal. The detailed MRI showed extremely little build up in the arteries. Nobody made a peep about cholesterol or the lipid panels from repeated blood testing, so obviously they were good. And the doc giving me a spinal tap, observing my back on fluoroscope in real time, said there was very little degeneration. Not so bad for someone 64, chronically overweight.
I keep researching Miller Fisher. Last night I found something very interesting: In the U.S. Guillain Barre population, 1% has the Miller Fisher variant. In Japan, the percentage os 25%. And minutes later I found an abstract about a young man who had and recovered from Miller Fisher, and then got it back again after eating rotten fish.
Fish now ranks right up there with poultry as being something I'm staying away from for some time.
Mind how you go --- and if your kitchen resembles my "before" kitchen: CLEAN IT UP!!
I may drop in now and then. While I've just written a short novel here, typing and reading are both a pain, since my left hand can't quite feel the keys and my eyes get sore and tired. I switch the eye patch every half hour or so. Neither eye is happy, though.
There is not much more to say than GOOD LUCK AND ALL THE BEST!!! Thank you for sharing your story and I will be thinking of you!!!
I don't know what to say.
You're incredibly strong, and I'm sure this (primal) woe will at least give your body the tools and raw materials to heal.
Don't beat yourself up over the chicken - you weren't to know, and I've quite often found a pink bit near the bone and not worried about it more than a vague thought of Salmonella.
Interesting about the Japanese type variation - do they know why?
Hoping for a speedy recovery for you, please do "drop in" if/when you feel up to it
Thanks, Northern Monkey Girl
I'm amazed that I even found out about the Japanese percentage of Miller Fisher. It's such an unusual syndrome that there aren't all that many people to use for data.
I'm going to keep searching the web, though, and I'll act on what I find, like avoiding fish and fish oil for now, even if it later turns out to be less important than I imagine.
I think that the real problem here is the immune system, not the infection. I pretty much doubt that we evolved to only eat thoroughly cooked meat ...
Sleep may be really important here, because lack of sleep may be the underlying cause of autoimmune diseases. Our body repairs the immune system while we sleep ... if we cut that phase short by several hours month in month out, is it that surprising that it goes out of whack?
My sister got food poisoning last year (from undercooked salmon) which was the immune shock that led to a full-on case of ulcerative colitis. After a year of medicine and having to be super careful with her diet, she is now feeling better.
I hope you recover soon, and fully piano doctor lady!
But it does remind me that on paleo blogs and websites I will often see manifestos against vaccination and hygiene (including hand washing and cooking) - we may not have had to cook food thoroughly back in the day or wash our hands, but now we live with the superbugs of the overpopulated industrial/agricultural age - it wasn't white flour or sugar that killed off most of the modern hunter-gatherers, it was infection, right?
WOW, so glad that you two were on the ball and discovered what was going on. Thank goodness for the internet!
I know I'm a broken record with this, but there's a good likelyhood that as an autoimmune disorder, GB can be prevented (significantly anyway) by optimal levels of vitamin D and that if started early enough, sufficient dose vitamin D may have a treatement effect.
If you've been taking vitamin D, 5000 IU daily, keep it up. If you haven't been taking any, take 20,000 IU per day (which is about 4x the typical optimal dose) for 4 weeks then drop down to 1,000 IU per 25 lbs body weight.
The D information linked in my signature has all of the testing and dosing information and cites.
Best to you,
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Oh my goodness! I have been wondering about you, but never imagined it was so bad .
My cousin's boy had Guillen-Barre and couldn't walk at one point, but recovered fully. I wish you the best
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