There’s a second entry on this topic, “Further Adventures in IRIS,” here, and a third, “The End of IRIS,” here.
That’s what Dr. Cheney told me at my appointment in April. IRIS, approximately, is what happens when your immune system wakes up and realizes that something has been effectively hiding from it – and it then freaks out. The freaking out is manifested as inflammation. I started the GcMAF on June 21st. I’d had no IRIS to speak of, and was hoping I was going to escape it altogether, with my immune system waking up gradually and taking a measured approach to things. What I was hoping for was the immune system equivalent of Navy SEALs: swift, targeted, and efficacious. No such luck. What I got was the immune system equivalent of a pack of seven-year-olds full of birthday cake and caffeinated soda going full tilt on the whack-a-mole games at Chuck E. Cheese. It hit like a ton of bricks on August 10th, two days before my birthday. Thanks for the thoughtful gift, body!
What had been happening for me was that I’d take my dose of GcMAF, have a little bit of a rough day, then two better-than-normal days, one falling-back-to-baseline day, and then it would be time for another dose. With the eleventh dose, I never got the bump. I just got the misery, and it’s been getting worse instead of better. Because of that, I asked Cheney if I should hold off on taking any more GcMAF until I was feeling better, and he said that was advisable.
So, how have I been dealing with the IRIS? The first day or two, some Tylenol and a cold compress would mostly take care of it, but I figured there was going to be some discomfort, so I thought I’d try to tough it out if it was only going to be a couple days. Then it was clear that wasn’t enough, and it wasn’t going to be just a couple of days, and I started trying the over-the-counter antihistamines Cheney recommended. None of them seemed to help at all, and it was rapidly becoming clear I was feeling precipitously worse. Toughing it out became not something I could manage.
With the first line of defense having failed for me, I moved on to the second, which is hydrocortisone, which is reserved for severe IRIS. I decided that since the antihistamines were useless, it was fair to class this as severe and have the steroids thus fair game.
Without medication on board, the IRIS feels like the world is collapsing in on me. I’m feverish, I have terrible flu-like pain, and a total overload of my nervous system that I know from experience is a cytokine storm. I can’t think straight to make a decision, can’t follow a train of thought in order to converse, can’t read, type, or prop myself on an elbow to eat (as I usually do). And sadly, I’ve lost some ground. I’m not up to walking to the bathroom, going out on the deck, or getting myself a snack out of the fridge. I hate feeling my life growing more circumscribed. Hopefully this setback will be only temporary.
The thing is, since the IRIS hit, I’ve felt much better at night than I do during the day. At night, my sleep drugs include a couple of antihistamines, and those – unlike the non-prescription ones – seem to help me feel much better. And that got me thinking: What could I use during the day from my night regimen to make me more comfortable? I decided yesterday morning that I would try taking a small amount of Seroquel (50 mg) during the day. It has an antihistamine effect at low doses, and I figured if I took a small amount, I would get the benefit without it making me feel groggy. And indeed, that seemed to work just the way I hoped it would.
Since I’m not taking the GcMAF right now, I don’t need to avoid opiates. So with the Seroquel, I took a Norco (hydrocodone and acetaminophen), which, being an opiate, gives better pain relief than the Tylenol alone. And having done that yesterday and today, the Seroquel-Norco combination works better than the combination of steroid and Tylenol did, for sure, and far better than the over-the-counter antihistamines (which were about as effective as Skittles). I also knew that the magnesium spray I use to help me fall back to sleep more easily during the course of the night helps with cytokine storms, so I tried that out to see if it would help. It seems to as well.
The thing is, I know I should be glad that this is happening. It means my immune system is coming back, and now it has a shot at defeating some of the nasties that have been flying under the radar. It’s hard to look to the long-term, though, when I’m feeling so utterly wretched, even compared to my usual level of incapacity. But everybody who takes GcMAF under Cheney’s care survives IRIS….or has yet. I hope to be added to that tally as soon as possible. Frankly, it can’t happen fast enough.
Thank you for sharing your experiences, No Poster Girl. I am sorry to hear that you are having these rough experiences, but I appreciate you sharing the truth. I hope the IRIS ends for you soon and you start experiencing the benefits of GcMAF.
HGRV+, 25 years M.E.
Sure thing, Patricia, and thanks. I keep reminding myself that it is a good thing, as uncomfortable as it is. Now that I have a better approach, I’m feeling a bit more hopeful. Knowing you’re going to feel awful all day is discouraging.
I am so sorry that you have to deal with further restrictions – FOR NOW. And I am glad to hear that you found a solution to make things more manageable. Very important information for all of us. Thank you for sharing.
Although you feel rotten right now I think it is a good sign that your immune system is reacting to the GcMAF. As I understand it that means you are a responder and I hope very much that it will be worth in the end for you.
Hang in there and take it as easy as you can – your body is working for you.
All the best
You are absolutely right, of course, Inge. If this is IRIS, it means the GcMAF is working precisely as it should. I wish mine had happened before I got all the way up to 100 nanograms, but we don’t get to choose how our bodies will work.
Oh, honey, I’m so sorry. One of the things that has really floored me as you’ve gone through this horrible experience is how you’ve been able to remain your own best advocate–smart and creative in managing your disease, even when it’s taken you to some very dark places. Of course I wish you’d never had to draw on these inner resources at all, but I’m always amazed by your strength. –d
Thanks for the kind words, D. I did say to Chimp last night, “I wish I hadn’t had to figure this out from scratch.” Well, I didn’t have to figure it out from scratch – I had plenty of guidance from Cheney and fellow patients about what *should* work – but it wasn’t fun to have thing after thing really not work and to be fearful that I was going to be in continued torment. I am glad I kept thinking about what was happening and trying new approaches. Cheney is good about that – he gives us the freedom to adjust our regimen, listens to what we find that works, and tests it out on echo. So refreshingly non-doctrinaire!
And I’ve sent the Cheney patient group an email with what finally worked for me. Hopefully it’ll help someone else, or will show them a direction to explore within the group of drugs and treatments they already know are effective for them.
Everybody gets through IRIS, especially you. Kudos for your resouceful juggling of your meds. I wish it wasn’t a skill you needed. Love you!
Thanks, Mom. It’s down to just feeling warm now, thankfully.
I couldn’t do this. I don’t have medication to see me through an episode as bad as this one. I don’t have decent painkillers and if the muscle pain got worse than what I go through, I could not deal.
Well, some people get through it with just the use of over-the-counter antihistamines. Not everyone gets the ass-kicking I have.
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Gradualmente vaya subiendo a un ejercicio más
rigoroso hasta llegar a hacer por lo menos 20 minutos diarios
de ejercicio aeróbico de alto impacto como correr jugar tenis.
Il est ainsi important de garder à l’esprit que même si le vin aide à protéger contre les maladies cardiaques en générale (à condition d’être
consommé avec modération), il ajoute ses calories
à la longue liste d’aliments que tu manges et que tu bois dans ta journée et
donc participerait à une prise de poids.