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.