Further Adventures in IRIS

My first entry on this subject, “Everybody Gets Through IRIS,” is here, and a third, “The End of IRIS,” is here.

My immune system is still freaking out for fun and profit. Yes, it’s true, we’ve reached the six-week mark on the IRIS. Dr. Cheney told me at my appointment this spring that most people would have it for a few days or a couple weeks. I’m just lucky, I guess. Anyway, it started for me on August 10th with my seventh GcMAF dose, which was my third dose at 100 nanograms. Just this week, it finally appears to be starting to ebb a little bit.

To deal with it, I’d been taking at least one Norco a day for weeks, and most days was taking two. (They’re the 5 mg hydrocodone/325 mg acetaminophen ones.) But now I’ve had several days within the last week in which I’ve been able to forego Norco entirely. I don’t feel great, mind – I’m only barely foregoing it. Each day there comes a point in the afternoon when I start to feel very warm and quite overtired, and I think “Should I take a pain pill?” Generally I decide to try to wait it out a little while and see if I can endure it. The difference is that instead of continuing to struggle and realizing I can’t get by without the painkiller, now I sometimes forget I’m waiting it out and deal with the discomfort just fine.

I’m still feeling warm for sure, and my energy level remains worse than it was before the IRIS started, but both are improving. The cooling weather is helping with the overheated feeling in particular. After lying around mostly unclothed for a month, I’ve been able to keep my shirt on more. This is really a relief. Imagining I was lying on my own little nude beach here was really not doing it for me; I’m more of a hike in the mountains person than a stretch out on the sand person. Or I was, before I couldn’t do either.

Since this has been going on for so long, I asked Dr. Cheney last week whether he thought what I was going through was really still IRIS, or whether it was possible it was just a downturn, or something else. I hadn’t heard of anyone dealing with it as long as I had, and I was really starting to lose hope of ever coming out of this stretch of discomfort. What he noted, in responding to me, was that my calcitriol had continued to go down each time it’d been tested, meaning that the symptoms weren’t being caused by Vitamin D toxicity, and that because of where I was in the dosing regimen, it was likely IRIS.

But while it’s good that I wasn’t in D toxicity, that calcitriol drop is bad news. If GcMAF was effective for me, my calcitriol should gradually rise toward the upper double digits. It hadn’t done so yet. It tested at 26.9 on May 25th. At that point I was still on Vitamin D supplementation. I started the GcMAF on June 21st. My next calcitriol test was on July 8th: 27.5. Then on August 9th, the day before the IRIS started, it came in at 21. That, in effect, means the GcMAF isn’t doing what it’s meant to do, or at least it wasn’t showing in the test results yet. I certainly had some transitory benefit from it, but it would fade away before I got to the next dose – and during the seven weeks I was on it, that didn’t build into a greater rise in functioning, as it did for the people it worked best for.

Why didn’t it? We don’t know for sure yet, but there’s one more test we had blood drawn for before I started the GcMAF. That test was to be done at a university lab, and because of the particulars as to how the test needed to be performed, we’re still waiting on the results. It’s a Vitamin D receptor polymorphism test. The long and the short of this test was that my particular receptor type may indicate whether I’m likely to be a good responder or not to GcMAF. I have a feeling the results are going to indicate I’m not likely to be a good responder. Dr. Cheney told me at my April appointment that there were ways to work around a non-optimal polymorphism; the one he mentioned was to increase the dose of GcMAF.

I suppose the question now is whether I’m going to keep on with it, if the results come back that I’m likely to be a non-responder. I still have enough GcMAF to carry me through four more months at 100-nanogram doses every five days. If we needed to increase it, it wouldn’t carry as far as that. Unfortunately, BGLI, who supplied my GcMAF, hasn’t been able to get shipments into the U.S. for most of the summer, and hasn’t been able to give us any information about when or if they might be able to start again. So what we have is probably all we’re going to get, I think.

But we have some on hand, it was a big investment, and I feel like it would be a huge waste not to try to keep on with it. I have to admit, though, that having gone through six weeks of IRIS, I’m worried about what the next dose might bring. When I restart, when this has finally run its course a little more, I’ll start at a low dose again and see what happens. Will it kick me into further weeks of discomfort? I’m pretty afraid of that, but I’ve survived it and I could do it again if I had to, as little as I’d like to. Will it never actually bring me any benefit? That’s another thing I’m afraid of, but I knew going into this experience that it was a highly experimental treatment – and that that was a large percentage of the likely outcomes.

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18 Responses to Further Adventures in IRIS

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

  2. I am so proud of you. And I have a complaint letter to the universe.

  3. Inge says:

    I am so sorry that you have such a hard time of it with GcMaf. And I admire your practical way at looking at the situation.

    I cant say it often enough, you are doing us all such a great service in reporting WHAT IS. It helps us all to make better informed decisions.

    About your vit D levels: Do I remember correctly that you are taking D2? My Vit D levels normalized only when taking Vit D3 ( one year on 4000 iu got me up from 31 to 60, and when I thought I could go down now to 1000iu maintenance it got down to 30 in 6 month and that were the summer months). Just my observation. Everybody is different.

    • Jocelyn says:

      Thanks, Inge. I feel like it’s only fair to share my experience with this stuff, because so many people want to try it. I know I wanted to read about other people’s experiences before I started the stuff, and there weren’t many to be found.

      Coincidentally, Chimp and I were talking last night about my vitamin D regimen. You’re right, I did D2 before I started the GcMAF. I tried some a few weeks ago, and over the course of a few days it actually made my IRIS worse, which was weird. I feel like it would be a good idea to get my level up as much as I can before restarting the GcMAF, because low levels of D seem to be associated with non-response. Cheney suggested cod liver oil, the idea of which I really dislike – I took fish oil capsules in the past, and always felt terribly guilty about it, because I’ve been a vegetarian since 1990. And it plain old tastes terrible. So last night Chimp and I talked about switching to D3 to see if it would work better for me. I think I will take a stab at that soon and see if it worsens the IRIS again or not.

  4. kathy d. says:

    Vit. D3 is what is recommended on Vitamin D. I’ve been taking D3 for quite awhile, although I don’t take the levels others here take. My level is 30, or was a year ago, and my doctor told me to take 1200 I.U. of D3 a day. I don’t take exactly that, actually I do. But my parathyroid hormone is high. I think that hormone leeches Calcium from the bones if one’s body doesn’t have enough Calcium; a problem for me as I have osteopenia and osteoporisis and have had two fractures. Time to see my internist but I don’t have the energy to get there.
    Have no idea why but I haven’t had energy for weeks, been home more than usual, and haven’t taken a shower for days. Usually I do it daily or every other day. Washing my hair was hard, my arms didn’t want to do it.
    I have stopped drinking iced coffee as it was the only way for me to get out of my house. I think iced tea might do it. But the iced coffee was doing it, but it aggravated the sleep disorder craziness and feeling wired. It is so hard to figure out what to do and how to get the heck out of my house.

  5. Flo Henson says:

    Thank you for the continuing reports. A while back, there was research showing that D2 was dangerous in some situations, but that D3 was fine. Since then, I’ve noticed that several multivitamin companies have switched from D2 to D3, but D2 is still used in vegetarian formulations. I believe D2 is cheaper. I wish I could remember the details, as this vagueness is probably not much help to you.

  6. kathy d. says:

    My doctors — internist, gynecologist — say Vit D3 is the best one. Most vitamin combinations with Calcium now contain D3, at least in the nearby health food and vitamin stores. It’s supposed to help absorb Calcium the best.

  7. Elizabeth Manwell says:

    Just checking in here for the latest, and so sorry that you are still IRIS-ing (which, given the classical reference ought to be nothing but rainbows, and clearly is not). Hope there is better news soon.

  8. kathy d. says:

    Have you seen the news that Whittemore Peterson fired Judy Mikovits for not giving her cell lines to another researcher there to look at? A week later, Annette Whittemore fired her. Also, a few newspapers have inferred that she manipulated data on slide samples? This isn’t proven; it’s alleged. Mikovits said that she’d take the cell lines with her to finish working on an NIH blood study which is ongoing; it is. Whittemore said that the cell lines belong to the institute, but then said it’s up to NIH to determine.
    What a mess!
    At least others are working on trying to find biomarkers for this disease.

    • Jocelyn says:

      Sure have. I’ve been talking about it all over fb and Twitter the past couple days. I left a comment on the WPI facebook page in the comments about the letter posted today,

  9. kathy d. says:

    Oh, I don’t do Facebook so I don’t think of it. In my CFIDS state, it seems like one more thing to do.
    There are several articles at the CFIDS Association website underneath an article in the Research 1st section.
    Whatever has happened, I believe Judy Mikovits is trying to help us and has been well-intentioned. It is her research and I don’t think it belongs to WPI. It’s her work. Also, I think her attitudes on some other things are o.k, but she may have mistakes.
    I hope she’s not burned at the stake no matter what. Her research brought our disease out of the closet and into public view. It’s taken more seriously
    I hope it doesn’t go back into the closet, but I don’t think so. Ian Lipkin is doing viral research, the Lights, Komaroff, Natelson are doing other research.
    But the nay-sayers are using this setback to again marginalize this disease and those who have it. It’s absurd.

  10. kathy d. says:

    Your Facebook Statement is very good. Many people make good points. I don’t know about WPI. Now three scientists have left. There is a lot of question about the money making here. When I first learned of WPI and found an entry on Wikipedia that questioned the integrity of Annette Whittemore’s spouse, who had gotten in financial hot water. So I was leery.
    Who knows the truth though? I just hope that Judy Mikovits can get her research materials, although I agree with the person who said that this will become a fight about intellectual property rights and courts usually side with companies — sadly.
    I hope that Ian Lipkin and others keep up the research and don’t get demoralized by all of this nor that our disease gets swept back into the closet. And maybe Judy Mikovits can do research somewhere.

  11. I am very sorry that it’s been so hard for you, Jocelyn. I just plain sucks! No other way of putting it.
    Sending you good vibes, Jeannette

  12. Pingback: Happy Blogiversary to Me | No Poster Girl

  13. Pingback: The End of IRIS | No Poster Girl

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