Virus theory

Discussion in 'Fibromyalgia Main Forum' started by Manwithfibro, Aug 7, 2003.

  1. Manwithfibro

    Manwithfibro New Member

    Dr Cheney's HHV6 caught my does feel like the Herpes virus is under my skin or something. If you ever had
    one on your lip, it burns, is non reactive to painkillers and really hurts...imagine a bodywide virus like this...makes sense to me.

    Has anyone been tested for HHV6 and/or has anyone tried long-term use of antivirals? Results?
  2. nancyw

    nancyw New Member

    I've never been tested for HHV6, but I have always had a viral type thing going on with me (per docs). I've had terrible canker sores or other mouth sores (although not cold sores) and the last few years have had scalp bumps and staff infection type things on face. I'd really be interested in the responses you get to this. The virus theory definitely makes sense for me.
  3. baseballmom

    baseballmom New Member

    I have always believed that my fibro began initially with a candida overload that damaged my immune system enough to allow the herpes viruses (HHV6 is one of them) in. I think FM is actually a systemic herpes infection. Herpes is a virus that lives in hibernation in the nerves and inflames them when they activate or flare. If you look at a map of the nerves in our body you can see that the pains we have and burning sensations on our skin we feel seem to follow our nerve paths. The tickly sensations/bugs crawling feelings that we sometimes get can also be attributed to the herpes virus affecting our nerves.

  4. Manwithfibro

    Manwithfibro New Member

    Anyone ever try that? I think this pain resembles Herpes pain. Maybe I have been nailed with the HHV6 for years and that is why nothing really helps much.
  5. elaine_p

    elaine_p New Member

    If you want to see comparisons of SOME antivirals on HHV-6, go to the Institute for Viral Pathogenesis web page and take the Antiviral Treatments link. It does not include Famvir, which is supposed to be good against HHV-6 and HHV-7. It also doesn't discuss any natural antivirals like Olive Leaf Extract.

    Valtrex is very expensive. 500mg 3x/day would have cost $370 PER MONTH. And you're supposed to be on it for at least 6 months. My doc saved me samples but after just 3 months he wasn't able to any more, so I'm just taking OLE. Don't know how that's working yet since I just switched.

    (I was never tested for HHV-6, I think that's the test he said was expensive, so we were just treating empirically. I am/was positive for HHV-4 (EBV) and CMV.)
  6. Mikie

    Mikie Moderator

    I don't know whether or not you have seen my posts about reactivated Herpes-family viruses or not. I found out about it accidently. When I had some plastic surgery about 3 1/2 months ago, they had me take Famvir to prevent a cold sore which can cause blindness when present and surgery is done near the eyes.

    I Herxed fairly severly and then went into a complete remission while I was on the Famvir. When I went off, my symptoms of CFIDS slowly returned (fatigue, cognitive, and memory problems).

    I told my doc about it and he prescribed the Famvir. I stayed on it two weeks and pulsed off. I haven't been able to achieve another remission, but have discovered I had an abcessed tooth which most likely has been keeping me sick for quite a while. The ABX I was taking was probably masking it and when I pulsed off, it became acute. I had to have an emergency root canal. But, I digress.

    In a week, I will pulse off my ABX again and if I do not go into remission, I will resume the Famvir. I post an update here from time to time on my progress with the Guai, the Doxycycline, and the Famvir.

    Many of us do have stealth infections and the HHV-6, as well as CMV and EBV, can reactivate in our systems when we are run down. Cold sores are a perfect example of how Herpes-family viruses can reactivate when we are run down or exposed to toxic substances in our environment.

    In addition to bacterial and viral stealth infections, many suffer from systemic fungal infections. These infections can certainly trigger our illnesses, but they may also be infections of opportunity.

    Love, Mikie
  7. Sunshyne1027

    Sunshyne1027 New Member

    Interesting stuff. Had blood tests done several years ago. The EBV is still detected in my blood. Though its supposedly not active. Had a bad case of EBV when a teenager. Its worth looking into. Yet the costs of treatments is not for me...With my income and lack of insurance. Been suffereing from fevers the last few days. My family had a virus last week.. they are all better. Yet I am still sick.
  8. Mikie

    Mikie Moderator

    Will test pos. for EBV because if you were ever even exposed to it, you will test pos. The thing is the viral load. If that is high, you can be a carrier or be having an active infection.

    Love, Mikie
  9. urge2soar

    urge2soar New Member

    Have you read "Osler's Web" or "The Virus Within"? They both explain about HHV-6 and other valuable information.

    I have been tested for HHV-6 three times now. I had so much activity the computer quit counting...last test I was 8 fold the amount. Valtrex had been success. Then Kutapressin and now it is unavailable.

    Currently I am taking 250 mg. of Famvir daily with Immuneplex (can buy here). I had read that the combo of the two was effective. It has been a little less than a month and I've actually felt more pain and tiredness. Possibly a herx reaction.

    When I am really rundown I can feel a fever blister just start to begin on my inner lip. I use a topical med for it...but know that it is a sign that things are about to escalate.

    As you are probably already alware, HHV-6 is the "roseola" that we get as infants. In those without fms it stays latent and does not reactivate.

    I highly recommend "Osler's Web". It is the history of this disease. The other book has been recommended to me. I see by your bio you have had this since 1990. May I ask what you do for pain/exhaustion?


  10. urge2soar

    urge2soar New Member

  11. baseballmom

    baseballmom New Member

  12. Manwithfibro

    Manwithfibro New Member

    That is why I think HHV6 makes sense. I read somewhere that this virus can cause body to hold onto phosphates.

    This feels like the same burning pain of a blister only under the skin and in the muscles.
  13. Mikie

    Mikie Moderator

    One is strain A and one is strain B. Can't remember which one causes roseola, but the other one does not. They have different aftereffects. I have info here somewhere on it, but can't find it at the moment.

    MWF, I also get this burning feeling on my skin when I am run down. It is especially active in an area of my scalp and my left eye. It's like the feeling that comes on just before a cold sore outbreak, the itching, burning, tingling, sore feelings.

    Love, Mikie