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What Happened After You Got the K


Senior Member
I've been thinking recently about my own history, in the hope of understanding more about how the different pieces of this illness fit together.

One thing that I've realized is that I actually had TWO different viral infections (each appearing to be merely an extremely bad cold lasting for about two weeks) that marked downturns in my health.

One was back in 1996, which is when I got the illness that put me into the category of Chronic Fatigue Syndrome.

I was quite sick at first, but after a number of months recovered some measure of health through various interventions. Most of them were things that Paul Cheney now advocates (gut/candida, food sensitivities, sleep, glutathione stuff, stress management) as well as a bunch of hormones. I remained at a level where I was able to work part-time in jobs that required moderate cognitive function (e.g. management rather than academic research). I had maybe six good hours a day.

This went on until early 2007. I had just started taking the "mild" antiviral Famvir, which gave me as much of a die-off in a low dose as most people have with Valcyte. I was feeling somewhat worse but had some hope that it would help.

Then I got another virus. Following this, I was pretty much in a daze and bedridden for the rest of the year. By this I mean that I did leave the house every couple of days for a few hours (and often felt a little better then.....getting away from the mold for a while would have been a good thing), but overall was in extremely bad shape.

This went on for the rest of the year, until I started addressing my mold reactivity. It took about six months of moderate mold avoidance to start to feel better, and a movement to "extreme mold avoidance" a few months later to get to closer to a level of real functioning.

By the end of 2008, with extreme avoidance, I started to feel a lot more normal. But in a few respects (especially cognitively) I wasn't much better than I was throughout my illness (prior to that second killer flu).

It's only been since adding antivirals (Famvir and then Valcyte) that my cognition has started to come back. And none too soon either, since trying to figure out how the different components of this illness fit together is a challenging task that few (if any) doctors/researchers seem to be taking on.

What I wish I knew is what that second "flu" was. It was really a doozy.

I'm of the impression that when viruses reactivate, they don't cause "flu" symptoms of that kind. That makes me think that the second infection must have been something new.

But what could it have been?

Prior to getting that second "flu," I had HHV6 IgG levels that would have put me in Jose Montoya's study. Those could have been HHV6b, I guess. But I had to have SOME kind of tremendous herpes infection, or I wouldn't have gotten such a huge die-off to Famvir.

Prior to that second flu, I periodically had reactivated Epstein-Barr, elevated IgG for CMV, and elevated mycoplasma.

I never had Lyme come up on a standard Western blot, but that doesn't mean anything. I took a course of doxy a few years into my illness and didn't get any substantial die-off, so perhaps I didn't have it at the beginning. But I don't think that would have caused that "flu." I got the flu in the middle of winter, and I've never heard of Lyme causing "flu" symptoms.

I can't remember if I ever came up with chlamydia pneumoniae prior to getting that second "flu." I had hugely elevated IgG levels of that by late 2008 and a lung infection (which could have been caused by that or by aspergillosis) to go along with it. But I've never heard that cpn causes THAT big of a drop in health to have made me that sick.

The other obvious candidate is XMRV. However, I _clearly_ had CFS prior to getting that second "flu." My case history, test results, symptoms and reactions to treatment were textbook (if there were a textbook on CFS, of course). In reading Paul Cheney's site, I was almost exactly typical of his "average" patient: about 75 percent on the Karnofsky Performance Index with interventions (probably 70 percent without).

So insofar as XMRV is diagnostic for the disease, that can't be it either. And I'm not of the impression that retroviruses cause flu-like symptoms anyway.

The bugs that cause particularly severe problems are the parasites (toxoplasomosis and babesiosis). But my symptoms don't really match that disease.

It could be that the Famvir weakened my system or that the mold problem in my house got worse. Those things actually were true. But the fact that the virus precisely marked the downturn suggests to me that it was in some way causal.

It seems to me that whatever that bug was, it went latent with moderate mold avoidance after about six months. After that, I got back to better than I was prior to the second flu. And the fact that I'm getting die-off and improvements with antivirals makes it clear that there's some herpes-family virus that remained active.

So what WAS that second virus? Maybe a second "undiscovered" herpes virus? Or something else?

Obviously this is centered around my own single case, which is just a start toward understanding anything.

I thus would like to hear others' experiences.

What happened to you after you got the "killer flu"? Has anyone else gotten one twice?

Thanks much,