Well that sucked.
Some of you may remember that I’ve been dealing with IRIS caused by my experimental treatment, GcMAF (see my previous posts, “Everybody Gets Through IRIS” and “Further Adventures in IRIS”, and if you want a brief explanation of GcMAF, read “The Post-Appointment Post”). I started the GcMAF on June 21st with a 20 nanogram dose, and was slowly increasing the amount every five days up to the full 100 nanograms, which I reached on July 31st. August 10th was my seventh dose, and my third at 100 nanograms, and that day was when the IRIS hit.
My birthday is August 12th. This is not among the best birthday presents I’ve ever received.
It wasn’t unusual for me to feel a bit puny, warm, and miserable on the day of dosing, so at first I didn’t realize anything was up, but usually I would feel markedly better the day after. When it didn’t subside the next day, I thought maybe the cumulative effect of the full doses was just causing the dosing yuck to hang around a little bit longer than usual. But when it continued getting worse for days, I realized I was in IRIS.
My expectation, from hearing about others’ experiences, was that it was going to last for a few days, or for two or three weeks at the most. Not only did it not end that quickly, it persisted for five months, finally trailing off around January 10th. Because of that expectation, at some point I stopped calling it IRIS and just called it a cytokine storm.
It wasn’t as bad as it was at the beginning for a whole five months, but those five months have included quite a bit of concentrated misery. The first month, I felt so overheated all the time that I couldn’t manage to keep any clothes on at all. I had never really wondered whether I wound enjoy nudism, but that month allowed me to determine that it really wasn’t for me. In September, I still felt hot all the time, but I was able to go Donald Duck-style – shirt but no pants. I didn’t get pajama pants back into rotation until sometime in December.
I had originally thought I would restart the GcMAF after the IRIS abated. After all, I still have four months worth of it sitting alongside our summer’s worth of home-grown tomato curry sauce in our chest freezer. But by the time my IRIS got going, Dr. Cheney was working with Marco Ruggiero on a probiotic yogurt version of GcMAF called MAF 314, and getting ready to offer seminars in how to make it. In October, there was a seminar that fit with Chimp’s teaching schedule, and we didn’t know when there would be another one that would, so he went down to Asheville to learn, and came back with the starter.
When my IRIS symptoms finally went away in January – it was five months pretty much exactly, January 10th – the list of pre-MAF 314 tests had been lengthened, and having felt bad for months, I wasn’t really in the mood to do the human pincushion routine again any time soon. So I’ve decided that I’m going to wait until at least after my appointment with Dr. Cheney in March to start on the MAF 314 process. I want to talk to him in depth about the risks, and waiting a little bit longer will allow him to gather more information on how other people are doing on it, and hopefully figure out how those results are likely to translate to me.
I’m not bitter about the IRIS. It wasn’t at all fun, but this is one of those things that comes along with an experimental treatment. I would have rather have been a person who got miraculous improvement out of it and no downside, but there are no sure things in ME/CFS treatment, and I’m very grateful that I seem to have come out of the experience without permanent harm.
I do seem to be doing better than I was before I started GcMAF. I’m able to get my own breakfast these days, and I seem to find myself up slightly more often during the day, though of course I still have to watch how much I do that pretty closely. On very good days, I’ve even done a tiny bit of cooking here and there – things that I can do sitting in a chair for a few minutes, like measuring a few dry ingredients or warming tortillas. I can’t say exactly what is making this possible, other than continuing to sleep and the Cheney Protocol in general.
I do worry that I might never restart chemical GcMAF – after all, what would I expect to happen if I did, given what happened last time? And depending on how others do and what it seems likely to do to me, I worry that it’s also not a sure thing that I’ll ever even start MAF 314. If I decide I’m not able to do either, that’s certainly money I would rather have saved, but unfortunately, sometimes we have to make decisions without complete information. It’s a sunk cost now. This is the first time in the seven years that I’ve had ME/CFS that something became available to me that seemed like it might be a game-changer, treatment-wise, and I feel like I made the best decisions I could along the way. I know, though, that I’ll undoubtedly have this experience in mind when the next new treatment hotness (heh!) comes along, and I might be more prone to let others be the guinea pigs for a while first.