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Some Insights into BFS. Possibly

PostPosted: April 19th, 2014, 8:35 pm
by BFSBurger
Hello everyone -

It's been awhile. I have kept with my regimen and done fine. Seem to have calmed whatever was going crazy in my body before. Unfortunately I got Influenza A about a month ago, and it all came back. This is when i really started thinking that BFS is heavily influenced by the immune system. I have zero concern about MS, so don't even worry about that nonsense. But influenza clearly causes an *extreme* immune response. One that creates such a cytokine storm that some people even die from the Flu. it has been hypothetized that its not the virus that kills those who do die from the flu, but the immune system being triggered to such an intense level that it causes shut down of the whole system.

It has been about 4 weeks since the flu, and I have managed to slowly get myself almost back to ground zero again.

Here's why I mention all that:

As some of you know, my "trigger" was a 4 week course of powerful, poisonous, toxic antiviral medications that i was forced to take after an exposure to HIV. I have always known that these medications cause something called IRIS. Immune Reconstitution Inflammatory Syndrome. Typically this immune inflammation syndrome only happens to those who had suppressed immune systems prior to taking the meds. However I have every reason to believe IRIS happens to "regular" folks as well. This reminds me of the fact that many here got BFS after a serious Infection, flu, or some sort of viral sickness. I tend to theorize that some infections can have the same effect on the immune system. Kicking it off kilter. Making it "inflammatory". Trigger happy. Overactive. I suppose you can call that autoimmunity but probably smarter to call it an inflammatory syndrome.

Since doctors are of absolutely no help, I decided to create a website dedicated entirely to people who took HIV prophylaxis, who are still having ongoing health problems. The goal was to draw them out of the woodwork, and get them to share their stories. Then to get us all to compare test results, and hopefully come up with some conclusions as to a "cause" or "diagnosis". In doing this, I have thus far unearthed 6 individuals who took the same drugs I took, and who spent the next year and a half dealing with the same symptoms I (and everyone here) has been dealing with. Including the twitching, exercise intolerance, nerve pains, etc.

While its only 6 people, the consistencies are shocking, and the insights have been shocking as well. Nearly all individuals report inflammatory immune syndromes. Note: this does not mean ANA tests, or the other absurdly vague ways doctors identify autoimmunity. In fact I am not 100% certain yet that this is traditional autoimmunity. There have been some consistently elevated CD8 levels, and out of whack IL-markers, Th2, Th1, etc. Also, several show at least 1 if not multiple reactivated viruses or bacterial infections that they had as children, yet not a single person (including myself) has had a positive PCR for those pathogens which show IGG/IGM markers (immune activity against them).

This means the body is acting like there are multiple infections, when in fact there aren't.

A couple don't have these issues, but one person ended up with a diagnosis of Guillan Barre Syndrome, which is temporary in itself, and can be treated. Another person was put on Valcyte to treat supposed reactivated CMV, and that did the trick for her.

Anyways, I am going to try and gather as many people as possible. Obviously we have a different "trigger" / history than you guys, but the symptoms seem to be identical, and the underlying theme seems to be the same: Inflammatory Immune Syndrome of some sort. This doesn't surprise me as stress reduction results in lower cortisol levels, which results in calming the whole system. Anti- Inflammatory lifestyle changes including avoiding gut inflammation / damaging foods would play a huge role also. I will report back if anything solid comes of all of it, but I do believe this is some sort of immune dysfunction.

Re: Some Insights into BFS. Possibly

PostPosted: April 22nd, 2014, 1:14 pm
by muppetdog
I can get on board with that. Pretty good theory since that's what the doctors have been telling me, also.

I was never on any HIV drugs, but all my stuff came about after 6 months of off and on illness starting with a horrible gastro thing in South Africa and ending with the singles. Immune system over reaction to taking a beating seems like a pretty good thought process to pursuer.

Re: Some Insights into BFS. Possibly

PostPosted: April 22nd, 2014, 4:41 pm
by leaflea
I am buying it too. Makes some sense for me given some circumstantial evidence...bits and pieces I put together trying to make some sense of this nonsense. Best theory so far. Quite a bit on here that points to it also lately.