CFS/ME/FM What positive tests have you had for infections?

Discussion in 'Fibromyalgia Main Forum' started by sunnyslumber, Nov 9, 2006.

  1. sunnyslumber

    sunnyslumber New Member

    Hi all,

    I thoght this would be an interesting question to ask, since with CFS/FM some infections seem to be more common than others (EBV, HHV-6, mycoplasma(sp?)) but apparently a lot of other infections can cause it (or trigger its development) so I was wondering what have you guys been tested for and tested positive to? Since we get tested more for the things that studies have shown higher antibodies against in CFS (EBV etc.) maybe some things have been overlooked because people just don’t usually test for them? (since there are no studies about them and CFS).


    john duncan
  2. fight4acure

    fight4acure Member

    This virus has been overlooked. PIV-5 in 95%of those with CFS.

    I think people would feel more comfortable if you answered the question first. It's a little too much to write for me.

  3. Adl123

    Adl123 New Member

    Dear John,
    My oral surgeon found 4 centers of bone marrow infectioon in my jaws, at the base of old root canals. That was done by a nuclear scan. Then a piece was taken out via operation, and that was sent to be biopsied. The result was what I said. My doctor at the time, as well as the oral surgeon, think that my CFIDS/Fibro were triggered by those infections. I would feel a lot better if I could take antibiotics, but I can't

    My Dr. told me that he had had, at that time (1998) over 70 patients whose CFIDS/Fibro had been cause by this and who improved remarkably after they were all eradicated (The infections, not the patients).

    p.s. I see that you are in San Diego. My oral surgeon is Dr. Swann, in Milpitas, just north of San Jose. He is super.
    [This Message was Edited on 11/10/2006]
  4. Daisys

    Daisys Member

    Thanks for that info. I have an appt. to follow up on a root canal that accounts for my recent relapse. I asked at the time if he'd consider doing a culture and he said it doesn't matter what caused it.

    John Duncan, I've had several bad relapses thru the years and it looks like it's EBV every time. I know I have a low level chronic EBV infection all the time. I'm constantly working with sore throat and stuffed sinus issues.

    Every time I've suffered a total relapse I've tested positive for past, new, and ongoing EBV infection. I'm looking into the transfer factor focusing on EBV for my next new procedure.
  5. kat2002

    kat2002 New Member

    Years ago I had a bad run of strep throat - took several months to clear it up. My md said I was a carrier of the strep virus and was reinfecting myself.

    Hmm...wonder if it has anything to do with my FM? Good question.

  6. beeleaf

    beeleaf New Member

    DOn't know if anything else has been tested.
  7. Catseye

    Catseye Member

    I had Epstein Barr and hep c. I didn't test for any others but I read an interesting story about the "monkey virus" a while back. Apparently, when they grew the polio virus in the 50s and 60s, they used monkey to grow it and it passed on this monkey virus to everybody. I swear I'm not making this up! Look it up on the World Health Organization's site or something. I do have a cfs brain which isn't allowing my memory to work properly but I remember something about it may cause cancer and it just makes you realize how dumb these scientists were to use animal flesh without really knowing what they're doing and so who knows what else we have lurking in our bodies. What does the WHO have to say about the fact that monkey virus got passed on to us? "Well, you don't have polio." That's what they said! Our health care system is not based on health care, it's based on "drug sales". Until it really is based on "health care", it's going to continue to be pretty scary. Now go google "monkey virus polio vaccine" and get ready to laugh your ass off and be scared out of your mind at the same time.
  8. sunnyslumber

    sunnyslumber New Member


    Thanks for your replies fight4acure, jillstarr, prickles, Adl123, kat2002, daisys, beeleaf, & barrowinnovations.

    Since fight4acure thought it would help if I answered my own question I have been tested positive for (in order of time):

    Human Herpes Virus 6 (no EBV, how weird is that?)
    Borrelia (on WB)
    Bartonella (on ELISA)
    Babesia (on FISH)

    Suspected: Coxsackie virus or Echovirus (I think this is what it is called?) both Enteroviruses. But this wasn’t ever shown and just strongly suspected.

    I might have tested positive to more but I can’t remember without digging through my records (which I don’t have since my Doctor’s office forgot to copy when I brang them in.)

    That polio vaccine thing is really scary! And I haven’t had time to read much about it tonight. There was a good summary in SF chronicle from 5 years ago.

    Also, I just remembered this (so take it for what it’s worth) but SV40 lowers STAT1, which the researchers contancted by the NCF found to be lowered or absent in CFS (sorry not to be more precise, this was a while back since I was up to date on these things.) which is a tumor suppressor protein.

    I’ll also look into PIV-5, I read something about it but must have stopped getting the NCF’s journal. Fight4acure, do you remember if the virus was much more present in CFS people than normal people? It must have been but I don’t remember how much? I’m sure the NCF has articles on it, or we could probably contact them.

    Thanks Terry! I’ll look into that also but am not sure where to start since my teeth have never had major problems. They were good (no cavities) until I after became sick with CFS then I got some small ones. Could you tell me how to get this tested, or taken seriously as a possibility? I don’t think they’ll do a nuclear scan just because I ask them to? Do you know what antibiotic your Dr. used to treat those infections? Thanks for this information, like barrowinnovations said it is all very informative and also really disconcerting at the same time, but the obviously the more you know the more you can help yourself and others. I haven’t given up hope that the pieces might fall together neatly in some treatable model, hopefully sooner than later.

    Anyhow I’m pretty sure that same virus (SV40) suppresses STAT1, which was a result they found in us.

    Thanks all,

    Hoping for more posts (since I feel this topic is important )
    [This Message was Edited on 11/10/2006]
  9. First....I've tested positive for: Chlamydia Pneumoniae, Mycoplasma, EBV, HHV-6, systemic candida, Mercury & bismuth toxicity (high)

    My spinal tap also said somethin' funky about "rare mono-somethin'-cytes" in the fluid---but my aunts said the same thing! So, can't be *that* rare....I have all my spinal tap results here somewhere, but, don't remember where..didn't show much I just remember that at the bottom of 1 page, neuro didn't say a word about it, so, couldn't be too odd. I think I looked it up once, and it didn't say much about it being "good, or bad" "normal, or abnormal" other neuro tests were more important.

    Now, on this root canal/dental thing: earlier this year, my Integrative Medicine doc went to some seminar thing, when he came back, for my next 2 or 3 visits, he wanted to know how many I had (1) he said, this doctor spoke about root canals making some people very ill--particularly, some or one (not sure) case(s) of Crohn's disease...once the person had all root canals taken out, the bowel disease ceased.

    My integrative med doc, and my dentist agree (probably ONLY on this 1 thing) that, without a healthy mouth/teeth, there is no health. The same can be said in reverse, too, I believe. Since getting ill, my teeth are in bad shape, partially due to meds causing dry mouth, less saliva, tooth enamel can erode, easier...meds themselves, can be destructive on teeth, can deplete calcium, & cause problems that way, etc etc.

    All kinds of ways our illness(es) can effect our teeth. A suprising amount of my friends that I chat with about MS, also have dental problems, some never did previously---could be steroids..other meds..or the illness itself. A LOT of MS'ers, also have EBV, & or HHV-6 and researchers believe there may be a link with the viruses & the disease. We may never know. Such a big puzzle.

    I myself, have had 'soft enamel' since I've HAD teeth, which cause a lot of cavities, in my youth..

    My aunt (has fibro & multiple other illnesses) got dentures in her early 20's. My sister, at age 26, and, my sister has a significant amount of her jaw bone missing, due to repeated abcesses/infections. One entire side of her face would swell. Eye would swell shut sometimes, they were so bad. for years, She too, is calcium deficient, and still (4 yrs, after getting dentures) gets tiny fragments of jaw bone that 'work' their way through her bottom gums sometimes.

    I worry about her health a lot. My mom was always terrified that infection was going to get into her blood stream, & kill her. She would never go to the dentist ($$$$) and her teeth were always abcessing, it seemed. With dentures, her sinus problems have all but disappeared, as well.....they were terrible all the time.

    I'm off to read some all

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