What Happened After You Got the "Killer Flu"?

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Oct 31, 2009.

  1. Slayadragon

    Slayadragon New 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,

    [This Message was Edited on 10/31/2009]
  2. TeaBisqit

    TeaBisqit Member

    It's really hard to tell in my case if there is one cause or more. I got sick with the worst flu thing of my life around 85 or 86. And that right there was the beginning. I developed all the Fibro symptoms from that. Within a year of that, I was told I had Mono. I never recovered from this stuff. I had a quasi remission where I was able to have half a life. I went to school part time because if I tried for more days, I got sick. I wasn't really okay at all. But I was able to exercise for awhile.

    A year into college, I was forced by the school to get a polio shot. They insisted I was missing one, which wasn't true, but I couldn't prove it. I was literally blackmailed into getting that shot. They said I couldn't come back to school or any school without it. So I did it, against my will. And that whole year, my health declined very badly. By the end of the year, I caught something that fully disabled me.

    So in my case, I really don't know how many causes there are. I was already advanced Lyme. I got bit as a kid. But I know each time I caught something and my immune system was hit. The last thing that got me gave me full blown CFIDS/ME in January 1991. But the question is, did it just unlock it or was this a new infection. I don't know.
  3. hubcap_halo

    hubcap_halo New Member


    I'm so glad the mold avoidance has helped you so much! Do you think Dr. Guyer has been a major help in your getting better?

    I feel like I've experienced two illness stages as well, and the crazy thing is the years correspond to yours and I've never met you nor lived near you.

    December 8 1995 I caught the "killer flu" and sinusitis--test positive for active EBV. Was bed bound and mostly depressed all of 1996, but all the time doing acupuncture, healthy diet, supplements, and once I got my infected tonsils out and a sinus surgery which open up my "closed up and full of infected rubber cement" (words of my ENT) sinuses, I began a rapid return to decent health and thought I was 100% for the spring of 1997. I took a job as a graphic designer. Quickly realized full time was too much, cut to 4 days a week and needed 10 hours a of sleep. Then in the fall had my first relapse and stared the cycle of semi remission 70-80%% and then relapse 40-60%. The way the illness changed from week to week and has so many facets, it's hard for me to put a percentage--I don't like that scale because I'm either sick or well on a lot of levels. But at times I was definitely "working sick." Going to work, then eating and sleeping. Not much else. Other times I was living and having a pretty good life.

    I started doing a variation of the Teitelbaum protocol with Dr. Vrchota in 2002? I can't remember the exact year, but that helped me improve more and have fewer relapses. My Igenex was, Dr. Vrchota said, positive for lyme, but I didn't have the classic symptoms, never remembered a tick bite, and no neurological symptoms. But we tried 6 months of rotating abx---a lyme protocol for the different forms the lyme takes--with Cholestyramine and I just felt tired during the treatment and returned to baseline with no improvement afterward--my gut said this is not the treatment I need. I felt like it was a wash. I'm happy for the people who seem to really have lyme and the heavy abx really help them. My gut has always told me that my problem is too multi faceted to be cured by attacking any single pathogen, and my history has shown that to be true.

    So we continued doing all the immune boosting stuff from earlier, and I began to improve more. I was tired of the illness dictating so much of my life that I made a pretty bold (rash?) move in 2005 to NYC to work as an ad writer. Strangely after a hard first winter, I started feeling 100% and loved being in NYC. I thought NYC was actually good for me. I really felt 100%. It was probably adrenaline. I didn't realize the wealth I had of just partial health in MPLS. I relapsed hard in Oct 2006 after working full time for ten months...I went on Valctye under Dr. Levine in 2007 because I fit the Montoya profile and his early success made us hopeful and I was desperate---but the treatment simply knocked me out for 6 months and at the end I was worse than before I started. I truly believe this was a major setback from which I'm still recovering. Came to DC because I could not work and am living with and taking care of my elderly father. I tested IGM positive again for EBV in March.

    I am still trying to get back---I'm at about 60% right now with some dips back to 50%. But I'm also up from 8am to 9pm, active all day and using restorative yoga poses and meditation instead of naps in the last few months so I must be doing better. Last winter I was napping all the time. Taking care of my Dad has been a bigger job since he had back surgery.

    Intra muscular gamma globulin has been the biggest help for me this year. Still doing the usual CFS supps, pro biotics, and found a great chinese herbalist. I'm seeing slow but steady improvement. I'm doing an anti parasitic treatment with Dr. Daniel Jaller--2 anti-parasitics and zithro--very low dose of the abx because I'm cautious of "anti" drugs because they've never helped before, until now--- but this treatment seems to be helping as well. I am hopeful for the first time in years.

    One new problem is sleep. I've always had some disturbed sleep, but it's almost impossible for me to stay asleep longer than four hours at night, then I wake and have just light dreaming and waking all night. I know if I could just sleep through the night I would improve dramatically. The days I sleep well I feel great. I know part of this is deep seated stress and frustration, but I can only meditate and do so much therapy. Did a sleep study and it told me the obivous--8% of my sleep is stage 4. Sleep meds not helping much. Seeing a new sleep specialist soon.

    Valcyte definitely weakened my system as famvir did yours. I'm very cautious about "anti--" treatments now. But am seeing that low doses can possibly work for me if there is good cause.

    I'm waiting like everyone else until we know more about XMRV. I stay out of the debate simply as an energy saver, for now.

    But I definitely had a killer sickness in 1996, and then a killer relapse (or new sickness?) in 2006.

    I wish I could offer more brilliant insight into all of this, but I just am living it right now. I'm glad you're so much better! I'm determined to do whatever it takes to get back to a much higher level of functioning.

    Keep us posted

    P[This Message was Edited on 11/01/2009]
  4. TigerLilea

    TigerLilea Active Member

    Hi Lisa - I've never had a "killer" flu. For me it was a six month cold that wouldn't go away. It turned out that I had two badly infected teeth. The infection spread to my sinuses and into my blood. Once I started on antibiotics, the cold cleared up and I felt great. That lasted for all of half a day, and since that evening, I have had CFS.
  5. hubcap_halo

    hubcap_halo New Member

    Your infected teeth didn't have anything to do with "jaw cavitations" did they?

    I've had chronic sinusitis as a major factor in my cfs for 13 years.
    And when I was 20 I had four wisdom teeth extracted, got dry sockets. And a year after the whole left side of my face was, within hours, swollen like a balloon. Infection. Went back to the orthodontic surgeon (correct term?) and he cleaned me out and I had no problems with sinuses or jaw until my CFS in early 1996.

    I'm trying to find an ENT or a dentist who can help me with these problems that I believe are interlinked. Any more on your story would be great!
  6. springrose22

    springrose22 New Member

    Your posts are always so interesting. I lurk a lot mostly because I wear out so easily at the computer.

    Why are you of the opinion that XMRV does not cause flu like symptoms? My problems started after getting a flu vaccine 5 years ago - lots of head problems, dizzyness, followed by several colds, aches, over a period of 3 months, then a HUGE flu with more neurologic problems. While sick with this, I felt as though my head had been attacked - could barely see or think - the only thing working sort of was my hearing. The acute stage passed, but I never recovered and have not been able to work, etc. I'm very interested in the new virus, they are probably on the right track. I think it's very important for us to backtrack as much as possible. Will await your reply. Thanks. Marie
    [This Message was Edited on 11/01/2009]
  7. gasolo

    gasolo New Member

    My illness began with an acute brachial plexitis. This is a temporary partial paralysis of the brachial plexus, thought to be sencondary to a viral infection. After 3 months and complete resolution of my symptoms, I then developed a bad upper respiratory infection that didn't reslove for several months. I subsequently went into the abyss. I'm not sure this represents the "Killer Flu".

  8. TigerLilea

    TigerLilea Active Member

    No, no jaw cavitation. My previous dentist did a bad job on two cavities. They later became infected, the only problem was that I don't get toothache, so I didn't realize how infected they were until several years later when I became so sick. Even then it took a long time before anyone realized that it was my teeth that were the problem.

    I had root canals done at first, however, later the teeth were removed as I was having a lot of nerve pain and the dentists couldn't figure out which tooth was the problem. It turned out it wasn't either of those teeth but the tooth next to them.
  9. denis321

    denis321 New Member

    When people first get infected with HIV, some, but not all, present with or recall a flu-like illness at the beginning. Then they may not have symptoms for months-years until opportunistic infections start. This was especially seen in the early years of HIV.

    We don't talk about it as much anymore because healthcare staff suggest testing or at-risk folks ask for the test themselves.

    Here's a quick link: http://aids.about.com/cs/conditions/a/syndrome.htm

    This is my speculation but that second flu might be cause by another virus that in and of itself may not do much but did affect the immune system enough that the underlying virus (XMRV?) kicked up again.
    [This Message was Edited on 11/01/2009]
  10. Slayadragon

    Slayadragon New Member

    Denis321 & Springrose22:

    I looked up some info on HIV and it does seem that a lot of people get a flu-like illness when they acquire it. That’s interesting.

    I wonder if that flu-like illness that so many of us get is from the XMRV. It would be interesting to see if someone can figure it out.

    >This is my speculation but that second flu might be cause by another virus that in and of itself may not do much but did affect the immune system enough that the underlying virus (XMRV?) kicked up again.

    This is an interesting comment. I think it's quite plausible.


    Your history does sound a whole lot like mine. It’s pretty classic CFS, I think.

    I started seeing Dr. Guyer when he first started his practice, and we learned about a lot of things together. Later on, he recommended various things that I did find useful.....mostly the sort of thing that Dr. Cheney suggests.
    ?Then in 2007, I had a bad year. Antiviral, that bad “flu,” methylation protocol, antibiotic. I think it was that the house I was in got moldier, and all those other things shouldn’t be done when in a moldy environment.
    ?At that point, Dr. Guyer’s other treatments stopped doing anything. If there’s too much mold exposure, nothing is going to cancel it out, I think.

    He’s been great at working with me as I’ve pursued the mold angle. He’s suggested some things that have helped and helped me to figure out what’s going on.

    The really good thing about him is that he’s knowledgeable about so _many_ different treatments and custom fits them to each patient’s situation. He’s really encouraging of people taking a strong role in what happens to them during treatment too.

    Are you planning to see him?

    DeterminedOne, TeaBisqit, TigerLilea, Gasolo:

    Thanks for your interesting comments.
    [This Message was Edited on 11/07/2009]
  11. slowdreamer

    slowdreamer New Member

    Internet was not around but the retrospective account called it swine flu. It was a doozy with 15 out of 2000 passengers being buried at sea.. I was one of 5 ending up in the Ships Hospital.
    Symptoms were mainly respiratory but my digestion has never been the same since.
    Great post Lisa
    Prior to boarding the boat I had been working very long hours with autistic chn. and was physically, emotionally and mentally exhausted.

    I am vague about many things..Cfs was not diagnosed I just slept a lot for 2 years and then it seemed to go away..By now I was living in a pristine beach house with an easy job..
    In the intervening years I was very active lots of study, cross country skiing etc and forgot about the episode in my business..
    Decades later I was in a strressful job, and travelling many hours a day in fumey traffic..flu type with gastro more severe..checked for hepatitis clear.

    Sorryabout abbreviations but this type of history is verytaxing for my brain.
    The diagnosis was in 92 and have been in no man's land , which you all know about, ever since.

    Before I had read or heard about ME/CFS I used to say my problem was a virus acting on a vulnerable nervous/immune system.
    My theory was and probably still is the vulnerability was through

    ..chemicals/mould (imagine the air in steerage on a boat going through the tropics)
    The XMVR seems to resonate with my situation but the remission was certainly powerful..In the intervening decades I would mostly relapse if I got a virus when I was stressed or in one case I was living in the tropics when I got a virus..

    I used to find a 2 or 3 week course on very low dose doxepin (5-10 mg) would put me back on track. and I continued working..
    Since the big crash of 92 I have not recovered with the Sinequan and live the ghostlike life.
    Another thing which gave me relapses wereStatistics exams and these days precise, perhaps left brain thinking, is painful.

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