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I recently came across a bit of information here on KosAbility that wound up having a pretty significant impact for me. It was in mettle fatigue's diary KosAbility: Your Microbiome - the Great Big Blockparty That is YOU (Medscape slideshow)

KosAbility logoKosAbility is a community diary series posted at 5 pm ET/2 pm PT every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. Our use of "disability" includes temporary as well as permanent conditions, and small, gnawing problems as well as big, life-threatening ones. Our use of "love someone" extends to beloved members of other species.

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For a quick description of my condition, (link for a less quick description of MMN) my immune system has decided that my motor nerves don't belong, and that's causing inflammation and deterioration of the myelin sheathing. Just in the motor nerves. It's really weird.

The treatment for this is to take about a thousand units of blood (!) and extract 70 grams of normal immunoglobulin proteins. Mix that with a carrier fluid in a 1:10 ratio and drip it into a vein. Takes about five hours and, in my case, needs to be done every three weeks.  As you might expect, this sort of treatment can come with side effects. Here's a list of the most common:

Headache, fatigue, fever, nausea, chills/shaking chills, pain in extremity, diarrhea, migraine, dizziness, vomiting, cough, hives, asthma, throat pain, rash, joint pain, muscle pain, swelling, itching, and cardiac murmur.
My condition has a history of coloring outside the lines, and the side effects are no exception. I can check the boxes for the first four on that list, but where's the box for "my eyeballs hurt when I move them" or "everything tastes crappy and weird"? Or how about "feeling like an overinflated balloon, and not in a fun druggy kind of way"?  Although I can understand why the side effect I most often report isn't on the list, which would be "feeling like hammered shit".

Between my neurologist and the nurse in charge of my infusions, we've done some tweaking and mostly gotten it down to headache, balloon, and hammered shit. Which is a lot better, but it still leaves room for improvement. One of the tweaks was to replace the saline that runs concurrently with the IgG and use glucose instead. That helped, but it led to a whole new weird thing. I had side effects on the day of the infusion, then the next day I felt fine. Great! Normally I'd be feeling it for three or four days afterwards. But the third day after the infusion I was hit with side effects from out of the blue. Then the third day after that. And again three days later. Did not see that coming. These side effects were less than I'd been having with the saline so we stuck with the glucose, but it was puzzling. The same thing happened again the next month.

It was on one of those rebound-side-effect evenings that mettle fatigue posted the microbiome slideshow diary. I'd been mulling over The Mystery of the Bouncing Side Effects for a couple of months. I kept getting an image of a machine I used to work with. It "knew" where a certain weight-bearing portion of itself was positioned and could adjust that position automatically. Sometimes a stray breeze would confuse the positioning sensor (it was an old machine) and the whole system would start to oscillate, a situation I would have to fix immediately (it was a big machine).

That's what was in the back of my mind when I opened the slideshow diary. Imbalance. Oscillation. In the front of my mind would have been something like "Good, a slideshow, I don't think I could wrap my head around too much tonight". I'll bet a lot of you can relate. It was interesting stuff, but I can't recall if I got all the way through it that night. I'm pretty sure I didn't. I do remember that I lost focus after panel four, because that's where I had my chance encounter. Here's what I read:

Clinically, intake of fructose has been shown to increase lipid synthesis, impair insulin sensitivity, and increase visceral adiposity, which predispose patients to NAFLD.[2] On the microbial level, the presence of this sugar alters the gut microbiome, which allows for overharvesting of sugars and fat, increased gut permeability, inflammation, and liver injury.[3]
Well, that's what the screen said. What I read was "intake of fructose... alters the gut microbiome... inflammation". Fructose isn't glucose, but they're both monosaccharides, biochemically quite similar. And it alters the microbiome how? Well, it really sounded like the ratio between this, that, and the other bug is altered. Some type or types of microbeasties are flourishing more. The balance is changed. When a self-regulating system is out of balance, it may oscillate as it rights itself. And when it said "inflammation" did they mean specifically gut inflammation or just inflammation in general? Because it seems to me that my side effects could be characterized as "inflammation of the fill-in-the-blank".

Could variations in my own microbiome be the answer to the Mystery of the Bouncing Side Effects? I could think of one experiment to test my hunch. Probiotic yogurt. It would be easy enough to try it and see what happened. So I had some for lunch on the next infusion day and for a couple of days after. Luckily it worked, or this diary would have been a whole lot of lead-up to nothing. I'm still not completely free of side effects, but I've seen a pretty big improvement.

I'd told my nurse what I was doing. When I saw her again three weeks later she asked, as always, about my side effects. When I told her the only side effect was diarrhea from the yogurt it surprised a chuckle out of her, but then it sunk in. "Wait, really?" Yeah, pretty much. I still got the balloon thing on the day of the infusion, but that's probably unavoidable when you have an extra liter of stuff in your circulatory system. And I was a little fatigued for a couple of days. Hey, it's kind of a chore absorbing the blood of a thousand victi... er, sorry, donors. I had a barely noticable headache and I felt a little blah for a while. All in all, a pretty significant improvement, and thanks in no small part to mettle fatigue's eye for the interesting and informative.

I'll wrap up by saying, maybe a little defensively, that there's very little science involved here. Correlation is not causation. I know that. And I'm not overjoyed that I feel the need to say it. I like being part of the reality based community, but sometimes DKos feels more like a Reality {wham} Based {pow} Community {blammo!} And I'm gonna cut off that rant before I really get going. This isn't the place for it. Wait, I know how to wrap this up!

Three cheers for mettle fatigue!


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