Chrinic EBV and Valtrex or herpes med??

Discussion in 'Fibromyalgia Main Forum' started by Britain, Mar 3, 2005.

  1. Britain

    Britain New Member

    Hi all,

    I have an awesome new doc. Like many of us FMS patients, I have chronic epstein-barr virus. Titers of 19 would make me positive, but mine are 170+! This has been increasing for 6 years. Also, this is the first time I tested positive for rhuematiod (even in August, it was negative). I have many other problems going on, but nothing that can just be "fixed." I did have a second false positive for cyphillis (1st in 1998), which I am told is a sign of lupus.

    The doctor said that right now I have NO immune system because my body is trying sooooo hard to fight EBV. She said that it is unprecidented, but that using a herpes anti-viral might help because they are of similar shapes. I did a little research, and I did find that people are testing this theory.

    Does anyone know of this treatment who could give me some insight? It seems without some treatment that I will keep getting worse and worse.

    Thanks,
    Brit
  2. Juloo

    Juloo Member

    I was on Valtrex for two months in a study that Dr. Dantini of Ormond Beach, FL is conducting. That was December and January. I felt miles better afterwards. (I was on the actually medicine, not a placebo.)

    For me (bear in mind I've been chipping away at this chronic fatigue for several years) it has been the tipping point to feeling more 'normal' than 'chronic', but I feel like, in a way, I've been shot out of a cannon...even my husband has noticed a difference. Three weekends ago, I outlasted him in doing some rather heavy yardwork.

    Also, my husband has been having stress issues for a while, so he was also tested for EBV and his titers were even higher than mine. Now he's on Valtrex also.
  3. wishingonastar

    wishingonastar New Member

    I am on valtrex for an active and chronic EBV. My doc follows Dr. Lerner's protocol...1500 mg three times per day for 3-6 months.

    Wishingonastar
  4. Mikie

    Mikie Moderator

    The EBV is in the Herpes Family as are CMV and HHV-6, all of which can plague us. We need to rid out bodies of chronic stealth infections as well as to build our own immune systems up. I take the undenatured whey, colostrum, and probiotics, all sold here to help my own immune system.

    Has your doc talked about using antibiotics? Depending on the study, 60-70 percent of us have chronic stealth mycoplasma infections.

    Good luck to you.

    Love, Mikie
  5. Britain

    Britain New Member

    I can't wait to call my doc on Monday! I am sooooo excited. For those of you who did take an anti-viral, what diagnosis were you given and did insurance pay? We were worried about that.

    Oh, and yes! I have been on an anti-biotic that I just finished for 2 months (Thank God!). It was killing me!

    Hugs,
    Brit
  6. Mikie

    Mikie Moderator

    At least the PCR DNA tests which are about the only reliable tests for chronic stealth infections that my doc and I did the Doxycycline empirically.

    The Famvir was a fluke. I had facial surgery and my doc had me take the Famvir as a preventative from spreading any cold sore virus to the eyes. I went into a temporary complete remission. This was a hint to my doc and me that there were viruses present causing problems. I took the Famvir constantly for about six month and then started to pulse it.

    I stopped both these medications and switched to transfer factors. The Doxy was no longer causing a Herx, so the bacteria were down to an amount which my own immune system could handle.

    The antiviral is good to take in the beginning because most of us have a high viral load if we've had it long enough. I switched to the TF's because they train the immune system to recognize and kill the pathogens. I took the TF's for three months and then boosted or pulsed them for a couple of days every six months. I have stopped everything for now and am just taking the probiotics, colostrum, and undenatured whey to rebuild my own immune system. Only time will tell if this will be sufficient.

    Love, Mikie
  7. Slayadragon

    Slayadragon New Member

  8. CateT

    CateT New Member

    Mikie,

    I am currently having blood tests done with an infectious disease doctor and we are trying to decide on my treatment regarding antibiotics and antivirals. Is it possible for your doctor to have a conversation with my doctor? I live in Minnesota.

    Thanks for your help,

    Joan
    [This Message was Edited on 12/07/2006]
  9. Mikie

    Mikie Moderator

    I am no longer under this doc's care. Dr. Teitlebaum's website used to have an article about using antibiotics empirically when treating CFIDS. Some CFIDS docs are also using AV's empirically. If one feels worse, it can be a sign that the med is working. Of course, one needs to be sure it isn't an allergic reaction.

    Infectious disease docs have not typically been the ones to treat us. If this doc doesn't help, try to find a CFIDS expert. The doc I used to see was neither. I did my own online research and printed out what I learned and highlighted and annotated the material to save him time.

    Love, Mikie
  10. CateT

    CateT New Member

    Hi Mikie,

    After going to 2 GP's, neurologist, cardiologist, gastroenterologist, endocrinologist, etc., I have yet to find one doctor in MN that is familiar with a protocol involving TF, antivirals and/or antibiotics.

    However, I was thinking of giving one of my GP's the info for a doctor that has used Kutapressin, an "immune modulator and broad spectrum antiviral".

    I can't take Valtrex because it irritates my stomach--feels like I took an aspirin. Protease enzymes have the same reaction. I need to find anitvirals or antibiotics that can be taken interveniously.

    The last few years have been quite a trip. I went from walking around our beautiful parks and lakes to not being able to walk around the block.

    I want to thank you for your diligent research. I also love research, but started to have problems with my eyes a few months ago. Computer research is not nearly as much fun now.

    Joan