off the wall I know but does any one know if genital herpes

Discussion in 'Fibromyalgia Main Forum' started by seaview, Aug 28, 2003.

  1. seaview

    seaview New Member

    plays into this mess of problems in any way? Just wondering...Thanks for your wisdom as always!...k
  2. Annie3

    Annie3 New Member

    but I'd sure like to find out.
  3. Mikie

    Mikie Moderator

    It appears that many of us experience reactivation of Herpes-family viruses. Some have had good luck with Kutapressin, but the manufacturing has been suspended, and I'm not sure where that stands. Others, like me, have gotten good results with Famvir, an antiviral med. We don't know which Herpes-family virus has reactivated in my system, but EBV, HHV-6, and CMV are often the culprits when these viruses reactivate. I do not have shingles or genital Herpes, but I do get cold sores on my lip when I get run down.

    I went into a complete remission when I first took the Famvir. I pulsed off of it and my symptoms returned. I have gone back on it and am feeling better. If the Famvir doesn't do it, I'm going to try the Transfer Factor C sold here. Some have had remarkable results with it.

    We are just vulnerable to a variety of infections and have to treat them to improve our health. As you know, Herpes-family viruses never leave our bodies once we are infected. The best we can hope for is to keep them in the latent state.

    I believe that building the immune system with colostrum and whey is a good way to start the healing.

    Love, Mikie
  4. LADYBUG2

    LADYBUG2 New Member

    I REALLY FEEL THAT THE HERPES VIRUS, DID CONTRIBUTE, TO MY COMMING TO HAVE FIBROMYALGIA... I HAVE HEARD ALOT OF PEOPLE
    TALK OF HAVEING THIS VIRUS, AND ALSO LATER ON COMMING DOWN WITH FIBRO/CFIDS,ETC,

    I TAKE ACYCLOVIR 800 MG 2 X DAILY,, AND IT DOES HELP WITH HAVEING FEWER OUT BREAKS. LYSINE, ALSO IS ANOTHER HELFULL
    THING FOR HERPES.

    BUT,,,WHENEVER I GET STRESSED,,,I WILL HAVE AN OUT BREAK
    OF HERPES.....MINE ARE GENITAL,I HAD THE BLOOD TEST.
    BUT,,, I DIDN'T ASK ABOUT THE OTHER HERPES VIRUS, FAMILY.

    DO YOU HAVE TO BE TESTED FOR EACH ONE, SEPERATELY????

    I JUST FEEL FOR SURE,, THEY ARE CONNECTED TO THIS DDD.

    MAYBE,,MADWOLF, COULD GIVE US HIS OPNION ,ON THIS QUESTION?

    LADYBUG2

    [This Message was Edited on 08/29/2003]
    [This Message was Edited on 08/29/2003]
    [This Message was Edited on 08/29/2003]
  5. annepat

    annepat New Member

    Mikie-
    Thanks for the Herpes virus info and the Famvir info.

    Re: Kutapressin usergroup. There is a yahoo support group for Kutapressin users that was started by a Ku patient.

    Re: Kutapressin substitution. I posted this brief bit of information on an Argentine beef extract, and I am embedding the info in this email. I suspect that several physicians are using this beef liver extract as a Ku substitute, but I'm still trying to confirm it.

    Many KU patients combine and/or take a compounded KU product. For example, I used to combine my KU w/B12.

    My goals are to: 1. confirm that the Argentine beef extract is being used as a KUsubstitute 2.streamline the info process and get accurate valid info into the hands of patients, physicians, and compounding pharmacies.

    Is there any way that you can help with this? For example, is it possible to have one KU thread where patients can list questions/concerns? 2. Can we work as a group to bump up and keep it on the first page? Our best response is a collective one. I'm concerned about KU physicians and possible KU compounding pharmacies fielding unnecessary calls-their first priority is to their own patients.

    Information on a possible KU substitute from an undisclosed compounding pharmacy:

    “…a soluble beef liver of Argentine origin (certified mad-cow free; BSE free) that we use in our product that is VERY similar to the Kutapressin. It is a soluble beef liver that also contains trace amount of 17 amino acids..."

    FYI: Kutapressin formula. It would still be helpful for physicians and compounding pharmacies to have access to the Ku formula for the purposes of finding, comparing and implementing substitute medication protocols. I'm still pursuing the Ku formula through several channels, but any ideas are appreciated.

    thanks,
    annepat
  6. sanlee

    sanlee New Member

    Well, since I've lived with it since college, I might have some idea of what you need to know. Do you get tingling? That is a sign the virus wants to be active. Lesions usually occur too but there is hope. Daily dose of Valtrex can suppress it.
  7. sanlee

    sanlee New Member

    I totally agree and have had the feeling for years that what you are saying is true. Anyway, that is my opinion.
  8. Mikie

    Mikie Moderator

    Yes, it is possible to post and take a poll or allow people to ask questions about this. It will be up to you to keep it bumped up if it slides over to Page 2. The only post which is allowed to stay on top is regarding the brochures from ProHealth.

    Regarding the tingling. Has anyone else tried a zapper for Herpes outbreaks. I get the tingling on my lip just before an outbreak and if I zap for 20 minutes in manual mode with my zapper, the lesion doesn't come out. It goes away. Catching it in the early stage when I feel the tingling is necessary to stop it.

    Love, Mikie
  9. cma331

    cma331 New Member

    Annepat; Could pleeeaaassse post more info on the yahoo support group; and how i can find it...Been so ill, and need that support badly.......
    Thanx........Carole
  10. kredca4

    kredca4 New Member

    I just put up a Reply to another post about Herpes, hope it will be of interest to you also.

    I can say for sure that I was dx with Herpes, Before the FMS, but who know's how long I had either, at least over 20 years, that I know of.

    It's another piece of the Puzzle,, for me that is.
    sincerely,
    sharonk