The End of IRIS

Irises at the Meiji Shrine by Eugene. I hope to Pete this is the last time I need to post a picture of these flowers at the top of an entry.

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.

Advertisements
This entry was posted in ME/CFS and tagged , , , , . Bookmark the permalink.

33 Responses to The End of IRIS

  1. lewwaite says:

    ” … and I feel like I made the best decisions I could along the way.”

    for NPG, I second, third and fourth your comment. Both you and Chimp, have excellent decision-making skills, given your respective: 1. Natural-born intellect, 2. professional training and 3. career and applications. XO

    • lewwaite says:

      edit: career and *life* applications.

    • Jocelyn says:

      Thanks, Dad. I know from experience I have a tendency to jump on things I want as soon as they’re available to me – I think if Dr. Chapman was evaluating this, he would have called it impulsiveness and maybe linked it to my ADD – and that is what I’m going to try not to do treatment-wise in the future.

  2. Nina says:

    My IRIS, or whatever it was, lasted pretty much exactly 5 months, too. I had gotten a severe cough with it, so it was easy to realize when that was gone as suddenly as it has come.

    I got my gcmaf from a different source but our reactions seem to have been remarkably similar.

    I’m a big fan of the “Donald Duck style” as well 😀 I wore long sleeves all of 3 days this winter, even with the windows open I feel hot most of the time. Guess that tells us something about our immune systems.

    I don’t regret having tried such a promising option either, but there would have to be a VERY good reason for me to try it again.

    Happy to hear you’re doing better now in any case!

    Best wishes,
    Nina

    • Jocelyn says:

      Wow, Nina, that’s interesting. Five months is about the longest I’ve heard of. How long had you been on it when the IRIS started?

      The shirts I wear all the time are very stretchy men’s v-necks – I wear them loose because snug clothing touching my body is exhausting. Because of that I was able to pull them down, tunic-style, when I needed to, and hike them up when I needed to.

      Glad to hear you also have no regrets. Do you feel like you got any lasting benefit out of it?

  3. I’m glad that you’re getting better. It’s like you’re speaking an entirely foreign language in this post about ME treatment, all our specialist team locally could offer me was pacing! How amazing that there’s more on offer, it’s got to be worth the downsides as you say! 🙂

    • Annie says:

      I’m so glad you are getting better, sounds like you went through a horrendous time with the iris. May I ask what is the difference between the maf yoghurt and the gcmaf by injection? If you can’t tolerate the injection, would it not be the same with the yoghurt? Also which tests are now recommended before trying maf? Hope it’s ok to as these questions. Thanks for sharing your experiences with us all, it’s very helpful. Just sorry you didn’t have more success with the gcmaf

      • Jocelyn says:

        Annie, there seem to be people who respond well to one but not the other, and it may be the case that the yogurt causes fewer side effects, so there’s a possibility that the yogurt would be a better fit for someone than the chemical GcMAF. I don’t know a ton about that yet, or if that applies to me – I’ll probably get quite a lecture about it at my appointment next month, at which point I can share more.

      • Annie says:

        Thanks for sharing that, very appreciated. Really hope if you do decide to try gcmaf again, perhaps at the lower doses people are mentioning on here, it will help you improve.

    • Jocelyn says:

      Thanks, IE! Hey, if you want a sense of what my protocol is like, I did a post about it about a year ago that lays it out. Most of it (the stuff that’s not for sleep) is obtainable without a prescription.

  4. Carla says:

    Hi there, thank you for posting about this. I went through similar problems but ultimately restarted the GcMAF (same source as you) but in lower doses and I’m doing fine on it. Not saying that it was the miracle cure i hoped for but certainly improved my quality of life dramatically. I was jittery too about restarting but the other alternative (going backwards) was not an option for me. Some people take as little as 0.01 ml a week and that seems to work for them. Not everyone should take a full dose and in some cases, a full dose is simply too much for the rest of the system, whereas smaller doses seem to be just what they need. It’s not a -out of the box, plug and play- product, you’ve gotta work it. Many people struggle even more on the 314, i’d first try and see how low doses on this stuff go so not all is lost.

    • Jocelyn says:

      Hey, thanks for weighing in, Carla. I hadn’t really thought very much about the possibility of restarting but keeping the dose low, so that’s helpful. I did seem to be getting benefit even at the 20 nanogram level, so maybe I’m one of those people. I’ll bring that up to Cheney at my appointment. So glad to hear that you’ve gotten benefit out of it!

  5. Elizabeth says:

    So glad you’re feeling better. And really, after IRIS, menopause ought to be a (cool) breeze for you. 😉

  6. Sushi says:

    Hi,
    To comment on Carla’s comment, after 27 shots at 50 ng (I never went up to 100 ng), I got a level of inflammation that made my legs ache a lot. My doctor told me to stop for several months. The inflammation went away (at least the part I could feel) after a couple of weeks.

    I restarted at 25 ng, have been injecting that dose for several months, and so far no detectable inflammation. I do think that the dose is important. I too know several who are on only 10 ng, getting improvement, and not getting inflammation.

    And, I have improved at lot and continue to do so.This is an experimentatl treatment, but I am very encouraged and my lab tests are greatly improved. Maybe you could bring up the idea of very low dosing at your next appointment.
    Best wishes

    • Jocelyn says:

      Thanks for your input, Sushi. I guess I had really only thought about the version where you ramp it up, but I was getting some benefit at 20 nanograms. I’ll definitely talk to Cheney about it.

  7. rrrr says:

    hi, i’m on only 0.10 cc per week (sometimes 2x per wk) and doing well with that. if i do more, i get sicker. but at this level, i’m doing better than before i started gcmaf. i’m on my 44th shot, i think. — rrrr

  8. kathy d. says:

    Congratulations on feeling better! And being able to make breakfast and do a little booking! Those are milestones.
    I admit I’m a bit of a chicken at starting protocols like this. I had a big problem with massive doses of Vit. C. So I’m very leery of trying anything.
    I’ve just had a problem and had to cut out one sleep medication, as it really elevated my heartbeat, which has become a problem for me, even with drinking 1/2 a cup of iced coffee or in the middle of the night — fast, very powerful heartbeat. It gets scary.
    I so relate to the feeling overheated all the time. I have my radiators turned off. My building feels like it’s a sauna, over which I have no control. I sometimes run my a/c in the winter. And i dress in layers to go out and end up wearing a sleeveless top in situations where friends are wearing two layers. Humorously, I actually went somewhere on the weekend and danced a bit, having to take off my socks and top shirt layer because I was so hot. (I almost fell on my head I got so exhausted, but I had to sit down.) It was worth it to me to dance to a few Whitney Houston songs and old r&b, my favorites. Even though it will take two weeks to recover, it was worth it. (P.S. When I left the location, it was 35 degrees out and windy, and I had forgotten to put my socks back on. But I lasted for six blocks to get home.) And now due to loss of one medication, I’m not sleeping well, the muscle pain is increasing and I’m hot. Oh, well, I had fun.
    Am so glad you’re doing better.

    • Jocelyn says:

      Glad to hear you got some dancing in! That’s great! Have you considered a beta blocker for the tachycardia? I think I may have mentioned to you that I use them because the Seroquel ramps my heart rate up.

  9. Inge says:

    Jocelyn, I am so glad that you are out of IRIS and even feel a little better!

    Just one question: Did Dr Cheney test the GcMAF you took with his cardio machine before you started? And get the yogurt MAF tested when you are with him.

    Best of luck and I am looking forward to your next blog to see what Dr Cheney thought about your adventures.

    Thank you so much for sharing,

    Inge

  10. kathy d. says:

    HI Jocelyn, I don’t think my doctor would go for the beta-blocker. Right now (today) I couldn’t go to a medical appt. because I got two hours of sleep, then had to take more meds and got another 2 hours of sleep, and by then (with a lot of awake time iin-between) it was too late. Then I took more meds and slept 4 hours. It took 13 hours to get 8 hours of sleep, with lots of awake time in there and now I’m groggy. I’m sending my doctor your list of sleep medications.

  11. kathy d. says:

    I just read somewhere that GcMAF was being criticized and wasn’t as helpful as was thought and exacerbated the symptoms of CFIDS, but, of course, I can’t remember where I read this.
    Have you seen the article at the CFIDS Assn. (in Research) about the study that Internet CBT is helping young people with CFIDS? I can’t go into it as it caused more gray hairs to sprout on my head and my blood pressure to rise. I left a comment calling for reason and sanity to prevail, and a few other things. Apparently, to make matters worse this is posted at the HHS Office of Women’s Health. Oh, joy, telling women with CFIDS to “pace themselves” and jog (into collapse).

    • Jocelyn says:

      Jaime Deckoff-Jones said that in her most recent blog entry. While I had some less-than-optimal side effects, I have to say that she probably doesn’t have enough clinical experience with GcMAF to make that judgment. It’s purely her opinion. There are people doing great on it, at least in the Cheney practice, but those people don’t tend to hang around on the internet telling people about their success. You only hear about the adverse effects.

      I did see the CAA article. I skipped reading the article and read some of some of the comments. I skipped it for the same reason you did – I knew it would make me angry, and anger stresses me out and eats up my tiny store of energy.

  12. kathy d. says:

    O.K. Yes, I too can’t read more: Leeches, bloodletting, talking and jogging is what’s offered us! And pacing, isn’t that a novel idea! If we didn’t pace ourselves we’d be unable to do a thing.
    I hope grant money wasn’t spend on this.

  13. Karen says:

    Hi Jocelyn,
    I’ve been doing 20ng/week for 5 mos and doing ok. I got very sick on 50ng. Maybe slow and steady wins the race…I HOPE! I’m back on abx for lyme and co-inf…last time had an allergic reaction. Taking high dose Vita C (IVs when I can), many supps, pacing, you know the drill. Praying that attacking from many fronts will make a difference. Good luck to you!

    • Jocelyn says:

      Thanks, Karen. I think you may be right. I have a bit of trepidation about starting it again, but really, I didn’t get into trouble until the 100 ng level. Up to that point I was seeing some definite benefit. Best of luck to you as well.

  14. kathy d. says:

    FYI: You might want to look at WPI’s annual report, financial and otherwise, which is out and online. I’m sure it cost a fortune with its graphics and artwork and advertising company lingo, even an American flag flying. But what just blew me away and floored me is the callous use of a quote by Anne Frank on the last page, blown up with a graphic. Have they no sensitivity at all, no principles or integrity? Is the Holocause comparable to their financial needs?
    I’m just venting from the shock of seeing that. Who uses the tragedy of Anne Frank to raise funds? That just sent WPI off the face of the earth as far as I’m concerned. (And Judy Mikovits is erased from the pages as if she never existed.)

  15. Pingback: Further Adventures in IRIS | No Poster Girl

  16. Pingback: “Everybody Gets Through IRIS.” | No Poster Girl

  17. Pingback: Posted by-Why No Poster Girl | Barbara C Rowe Author

Leave a comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s