Everyone has convinced me that IRIS could happen in CFS patients taking antiretrovirals.
I experience increased inflammation even when I take gentle natural antiviral things.
I wish more people were aware of the work Dr. Ritchie Shoemaker has done on treating mold illness.
He has studied the inflammation response that happens when someone is poisoned with biological neurotoxins.
I think it is the same thing that is happening in the bodies of a lot of us with CFS. Even in people who don't know that mold toxins are an issue for them. Or even in people who are dealing with Lyme toxins or toxins from certain species of algae. Being poisoned is such an integral part of the CFS experience.
According to Dr. Shoemaker, poisoning with biological neurotoxins causes the complement or innate immune system to be tremendously activated, causing lots of inflammation. And our acquired immune system is underactive, not fighting hard enough or disabled in some way. I know it is true for me.
According to Dr. Shoemaker, steroids would be really bad for a person in this situation. He says it is like pouring gasoline on a fire.
So the point I'm trying to make is that things that help AIDS or HIV patients with IRIS might not be helpful for us.
The things that have helped me the most in reducing inflammation while taking antiviral things are seven precious mushroom extract, bromelain, and most of all, sleeping outside.
What's New in HIV/AIDS: Treatment Immune reconstitution inflammatory syndrome (IRIS) can complicate management of patients on antiretroviral therapy.
■ Improving immune function can be associated with an inflammatory process that poses a significant threat to patients even though their immune status is improving.
■ The onset of immune reconstitution inflammatory syndrome (IRIS) symptoms can occur as early as 1 week after the initiation of antiretroviral treatment. Yet, symptoms may also manifest as late as 1 year or more after treatment initiation.
■ IRIS is estimated to affect approximately one-quarter of patients who start antiretroviral therapy.
■ A paradoxical worsening of symptoms has been noted with other disease processes that are similar to HIV infection. Thus, although most of the information we have focuses on HIV, the implications for IRIS may be broader.
Is there any thought about whether IRIS can occur in ME/CFS with antivirals like Valtrex or Valcyte, or is this limited to antiretroviral treatment?
I had a substantial increase in symptoms at 2-2.5 months into Valcyte treatment which looks to be finally fading out after 2 months. My doctor told me to expect it and is not concerned about it, but I am curious about what is causing this substantial increase in symptoms -- especially ones that up to now were quite mild. In particular, I had facial swelling (like mumps) followed by swollen lymph nodes and sore throat, which were not big features in my ME/CFS before. I had a frog face for most of two months! I also had an increase in muscle aches and exhaustion, and a significant decrease in cognitive function, all of which have been on-going ME/CFS symptoms for me.
I also got a positive active HHV-1 test during that period, but no obvious external signs (cold sores). HHV-1 tests had been negative before that, but I think that's a commonly reactivated virus, so it probably doesn't mean anything....
I've heard of "Herx-like" reactions with Valcyte, but it can't be a true Herx rxn because Valcyte stops the virus replicating; it doesn't kill it off. There should be no Herx from rapid microbe die-off. Could this often-seen reaction to Valcyte be IRIS, or is that not even possible.
I guess I'm wondering about all this because IF I'm XMRV+, and IF I end up on antiretrovirals, might I be one of those more genetically disposed to IRIS while taking HAART?
Those suggestions of things that help me personally in reducing inflammation are not Dr. Shoemaker's suggestions. Sorry I wasn't more clear about that. He has a whole program of prescription drugs that treat the inflammatory response in the immune system, and must be done in a particular order.
I have to confess that I have not been able to follow Dr. Shoemaker's program, because I don't handle most prescription drugs well. He is a conventional doctor, not an alternative medicine guy, so he uses prescription drugs.
I believe his very first step is to put people on cholestyramine for a month or more. It sucks out neurotoxins.
I flunked out at this point, because cholestyramine was too strong for me. So technically, I am probably still at his first step. I've been taking soluble fiber for ages, which does the same thing as cholestyramine but a lot more slowly.
If you want to see if his approach would work for you, you could try some phytosterols. They are available at health food stores without a prescription. They are not as strong as cholestyramine, but stronger than soluble fiber. If they make you feel better, then you might get some help from following Dr. Shoemaker's program. He spells out his program in his books and maybe on his website, www.biotoxin.info
The frustrating thing to me is that Dr. Shoemaker has so far not seemed to really get interested in the XMRV discovery. Here we have this doctor who understands so much about the immune system and how his patients have an inflammation cascade, and on the other hand we have CFS patients experiencing increased inflammation when they take an antiretroviral drug.
I wish someone could integrate Dr. Shoemaker's knowledge with the things being learned about XMRV. You know what I mean?
Hopefully one of his mould patients will get into the XMRV side and see Dr S, then share it with us. I have such a bad reaction to prescription drugs. Hopefully, just a matter of time until he gets involved (fingers crossed).
I see that it says that there are no methods of testing viral loads yet. Which is correct.
But what I'd like to see explored, would be the possibility to test for other abnormal values.
If you see this post, there's a list of tests done, which may very well be abnormal markers (just like CD4 is with HIV).
CD56, CD19 etc. These values are often abnormal in CFS patients, and I suspect that they may play the same role as CD4 does with HIV.
As I am sure you know, Peterson recommened the NK cell function test, "if you could only afford one test"...
So, for a future post, could you interview some of the researchers about the possibility that these could be markers?