Is fibromyalgia caused by a herpes family virus living in neurons?

Discussion in 'Fibromyalgia Main Forum' started by richvank, Sep 23, 2009.

  1. richvank

    richvank New Member

    Hi, all.

    Here is a repost of a response I just posted to Aunt Tammie on another thread. She had posted an abstract of a paper from Italy that reported on finding a connection between chronic urticaria (hives) and fibromyalgia. As you probably know, up to now, fibromyalgia researchers have not had a clue as to what actually causes fibromyalgia, and I have not been able to figure out the connection between CFS and fibro, which seem to have one, because they often occur together, which is of course why they are included together on this board, and in several other venues. This problem may be beginning to crack!

    Hi, Aunt Tammie.

    Thank you for posting this abstract. I had not been aware of a connection between chronic urticaria and fibromyalgia.

    I think this could be an important clue to the cause of fibromyalgia.

    Some time ago I posted that my friend Dr. David Gregg has suggested that fibromyalgia is caused by a herpes family virus living in neurons. There are two types of herpes viruses that live in neurons--herpes simplex and herpes zoster. So if it's a herpes virus living in neurons that causes FM, I think it has to be one of them.

    I just checked PubMed, and I see that there are some papers connecting these two viruses to cases of chronic urticaria. So these pieces seem to fit together.

    If this is truly the origin of FM, I think it would also explain the connection between CFS and FM for a lot of people. CFS involves dysfunction of the immune system, and in particular, a shift away from the Th1 response, which is needed to combat viral infections effectively. So if a person developed CFS, and their immune system became dysfunctional and Th2-shifted, it would seem that they would be more vulnerable to propagation of herpes viruses, and hence, then, perhaps to the development of FM.

    The viruses are invulnerable so long as they stay inside the neurons. However, when the viruses begin to propagate and move out of the neuron via the axon, they are recognized by the immune system, which launches a Th2-type attack with antibodies. The resulting inflammation is what produces the pain of fibromyalgia, according to Dr. Gregg's hypothesis for FM.

    I think this is really getting interesting. As far as I know, the possibility of a herpes virus etiology has not been explored much in fibromyalgia. It would really be interesting to know how fibro responds to treatment with acyclovir, which is effective against these types of herpes virus. [I've added the following to my original post: And as I mentioned in the past, Dr. Gregg has suggested raising the lysine to arginine ratio to suppress these viruses as a possible treatment for FM. He has suggested taking 6 grams of L-lysine per day and holding down the consumption of foods high in arginine, such as chocolate and nuts, in order to raise this ratio. Raising this ratio has been found to suppress herpes simplex viruses, and I think it works on herpes zoster viruses as well.]

    Thank you again!

    Best regards,

    [This Message was Edited on 09/23/2009]
  2. AuntTammie

    AuntTammie New Member

    This does sound quite interesting....I'm glad that I could help, even if in such a small way. : )
  3. openyourmind

    openyourmind New Member

    an interesting piece of research---my husband seems to have developed symptoms similar to mine--he recently had a bout with shingles too--

    we have talked a lot about fibro being communicable --perhaps being passed to family members since so many in my family have it---perhaps genetic--tho--I am always looking for answers
  4. SnooZQ

    SnooZQ New Member


    Not a small number of us with FM developed symptoms & were dxd following a trauma.

    What are your thoughts on how the Gregg/herpes FM theory might extend to that scenario?

    Best wishes.
  5. Mikie

    Mikie Moderator

    FMS not only "travels" with CFIDS but also with RA, MS, Lupus, Lyme Disease and a few other conditions and illnesses. I think this may be why it has been so difficult to find the root cause of it. There are often overlaps in symptoms which further confuse things.

    There is no doubt in my mind that the Herpes Family of viruses is connected with our illnesses but I don't know that one can say they can cause FMS. While it may be true that they do, all I can see is a relationship. Like most of the research, nothing has answered the "chicken 'n egg" question. Do infections cause a change in our bodies which lead to our illnesses or are we already genetically predisposed to react differently to these infections, triggering FMS and other illnesses/conditions?

    I was given Famvir prior to facial surgery for preventive purposes. I went into a complete, but temporary, remission of both my FMS and CFIDS. I continued taking the Famvir for 1 1/2 years, pulsing the last year or so. I now keep Acyclovir on hand because when I get sick, injured, or run down, something viral reactivates and I start the Acyclovir to drive it back into latency. With CFIDS, EBV, CMV and HHV-6 are the most common suspects. As you can tell, I was never tested. It was a fluke which led to my doc's treating me empirically.

    I also keep Doxycycline on hand because mycoplasma cysts, deep inside body tissue, can also reactivate. As I'm sure you remember, it was a mycoplasma infection, which showed up on a blood test, that triggered my CFIDS full blown back in 1990. I went on working for another 10 years before I became bedridden but I was never the same after than infection, which left me crippled for months after the initial ABX treatment. We now know that it takes at least six months on ABX to drive mycoplasma infections into latency. I only received two short courses of them.

    Many with the above-mentioned conditions have chronic stealth infections which thrive below the immune system's radar. This is probably why people often report feeling so much better after being given AV's and/or ABX. Unfortunately, these meds do not cure the condition. This also leads me to question whether these infections are the cause of FMS. Of course, once one is infected, there may be a whole range of other conditions which appear and need to be addressed.

    One such condition is the hypercoagulation from excess fibrin in the bloodstream. In addition to the AV and ABX, I took Heparin injections to help rid the bloodstream of pathogens which hide out in the fibrin/platelet clumps in the bloodstream. The strongest Herx, or Herx-like, reactions I had were to the injections. At the time, my SED rate was down to 1. Docs don't realize that a really low SED rate may indicate hypercoagulation. The SED rate test isn't definitive but it certainly signals that the doc needs to look further. Mine after the treatment was a more normal 7.

    Sorry, I've written "War and Peace" here. Just thought I'd chime in with a few things which occured to me.

    Love, Mikie
  6. IntuneJune

    IntuneJune New Member

    Mikie, I read in a post towards the end of September, you were not feeling well and have not seen you on the FMS board since. I pray you are feeling better.

    And am curious, what are your thoughts on the recent news of a possible XMRV link in relation to your improvement with the antiviral treatments, the zapper, et all.

    Thanks, June
    [This Message was Edited on 10/17/2009]
  7. interesting as since a young child I constantly I had cold sores. Now when I feel them coming on I take the lysine, maybe a reg. dose is better.
  8. nah.stacey

    nah.stacey Member

    I never really made this connection before, I didn't realize that others have had these cold sores too.

    Goodguess, I soooo relate to what you are talking about with the cold sores in childhood and your brother teasing you. I had the same exact thing and yes I too would get sooo mad at the "herpes" word. Made me feel like a pariah. Of course now I feel like a bigger one, being too sick to really associate with anyone because I'm sick all the time. When I do have a vertical day and I'm with my family they tease me and say "She's in the world". Wish I were in it more.

    I was looking over my original blood work done back in 2005 and I never realized why the Herpes 6 was on there. Does anyone know more about the H6?

    I would love to here more about this, it sounds so rational.


  9. I had to giggle as I too had cold sores on my lip in all my school pics. Then the older I got they got bigger, my entire lip was HUGE and so painful. But I can't imagine everyone with fibro had them!?