HepC Patient Awaiting Results For Cytomegalovirus, Epstein-Barr

Discussion in 'Fibromyalgia Main Forum' started by MilesKeatonAndrew, Jan 12, 2004.

  1. MilesKeatonAndrew

    MilesKeatonAndrew New Member

    Hi everyone.

    My name is Miles. I'm infected with hepatitis C. Some of you may know that many hepC patients suffer from chronic fatigue - basically for the same reasons as people diagnosed with CFIDS. Sometimes it's immune related. Sometimes it's viral. Often, it's both.

    For most of the last 10 years, I have suffered from debilitating fatigue. In 1997, I got really sick and was diagnosed with cytomegalovirus. It nearly killed me. Two years later, I did 6 months of treatment and cleared CMV. It came back immediately after treatment ended. I also failed to clear hepC.

    Later, I was diagnosed with Epstein-Barr virus - high titer - so high, my doctor was concerned about lymphoma.

    CMV and EBV are both known to cause severe and chronic fatigue, and are often found in people diagnosed with CFIDS. People with CFIDS can also be either viral or immune, or both, for a diagnosis.

    Last year, I did another 6 months of therapy. This time with a more advanced interferon and an injectable immunomodulator known as Thymalfasin. 3 months into treatment, my doctor called me and said I had tested negative for both CMV and EBV. That was last March. I've had no major fatigue problems since I stopped therapy, and this is my first winter without joint pain since 1997. If I'm still clear, it means my body had sustained a cell-mediated immune response on its own for 6 months.

    Since I'm still HCV-infected, there is a likelihood that I will relapse when the hepC immune response becomes dominant again.

    There has been some talk about treating CFIDS with the same drugs used for hepC. Thymalfasin is under consideration for monotherapy treatment - the drug has virtually no side effects of its own. But like people with hepatitis C, CFIDS patients may require interferon and ribavirin as well, but probably at much lower doses than a hepC patient needs. Also, you may be able to clear and stay clear.

    Anyway, we'll see how my blood tests come back and I'll let you guys know if I'm still clear of cmv and Epstein.

    Miles Keaton Andrew
    Vice President
    Hepatitis C Association

    miles@mkandrew.com

  2. tonakay

    tonakay New Member

    I've been fighting EBV/FMS/CFS since September and it's wonderful to hear someone has come out of it! Let me know
    how the bloodwork goes, God Bless, Tona

    P.S. did you do a special diet? I'm on a 4 month strict candida diet right now.
  3. Mikie

    Mikie Moderator

    I'm so sorry for all you have been through.

    I have never heard of CFIDS being divided into immune and viral because no one know whether viruses can cause CFIDS or whether a genetic defect makes PWC more prone to infections of opportunity. Even if it is a virus which triggers one's CFIDS, it's still an immune issue.

    Both EBV and CMV are in the Herpes family and neither can be wiped out. Once you have them, you have them for life. The best we can do is to keep them in a latent stage and not allow ourselves to get run down. That's when Herpes-family viruses can reactivate. The Hepatitis is probably what allows them to reactivate in the body.

    Some docs are having good results with antiviral medications. Some of our members have been having good results with transfer factor. CFIDS is often secondary to another illness, but it is most likely a genetic defect and would have been triggered by something at some point.

    I wish you luck in your treatments.

    Love, Mikie
  4. caj

    caj New Member

    What is CMV? caj
  5. Mikie

    Mikie Moderator

    This virus contaminated the live Polio vaccines because monkey liver tissue, which was infected with the CMV, was used to grow the vaccine. Most of us have probably got CMV while lies dormant in our bodies, but it can reactivate just like all the Herpes-Family viruses.

    Love, Mikie
  6. MilesKeatonAndrew

    MilesKeatonAndrew New Member

    When I first realized I was suffering from chronic fatigue, I applied for disability. Back then, you had to test positive for Epstein-Barr virus to qualify for CFS disability. Now, you no longer need to be infected with any virus at all for a CFIDS diagnosis, because a lot of people were suffering from chronic fatigue without indicative viral infection. The newer designation, CFIDS, replaced CFS when it was realized the problem can be either immuno-genetic, viral, or both.

    In terms of viral infection, there is also the possibility of viral titers too low to detect, but high enough to disorganize immunity.

    I can only say that presently, there is no KNOWN cure for EBV or CMV. Genes are always involved in an immune system gone awry - especially the interleukins. For example, in hepatitisC, it is not the virus itself that causes liver injury - it is the immune response.

    This may be caused by an inherited gene as with Alcoholic Liver Disease, or it may be caused by a gene mutation in hepC patients.

    In both hepC and CFIDS, there is similar immune system depression. All chronic viruses for which inherited immunity is unavailable require an ongoing cell-mediated immune response. In other words, It's possible to get rid of these viruses for as long as you can maintain that cellular immunity.

    I completely understand what you're saying - that these viruses are not like measles, which induces endogenous, permenent antibody immunity. If I'm cured of hepC, I can keep getting re-infected.

    However, some viruses survive by suppressing the immune response that can kill them. Once that response is suppressed, your body is open to attack from other pathogens, as well as immune-induced genetic crosstalk.

    What I'm saying is this: If the cell-mediated response can be returned to normal, it may prevent re-infection. Of course, there are not a whole lot of people who believe this yet, but that's how new medical information goes - it trickles down very slowly. Generally, the last person to know is your treating physician.

    I am also saying this: The immune deficiency that allows CFIDS, either as the result of genetic crosstalk, or by viral infection, can be turned around. So instead of fighting these viruses with antibody immunity, re-infection is prevented by an omnipresent cellular response.

    In all documented cases of spontaneous clearance of the hepC virus, we see a vigorous CD4CD8 response that immediately eradicates the virus. Although follow-up on these patients has shown no re-infection, we know the re-infection is not antibody-based, because of the way the virus mutates.

    What I'm doing here is giving you news from the hepC community that is going to help your people a lot easier than it is helping ours.

    Miles Keaton Andrew
    [This Message was Edited on 01/13/2004]
    [This Message was Edited on 01/13/2004]
  7. ANNXYZ

    ANNXYZ New Member

    You might find transfer factor really helpful. There are formulas that can be bought that target EBV , CMV, and even HEPC. Check our store here . Also do a google search on transfer factor - there are other labs that formulate it. Lots of doctors are using it too.
    Sujay is a doc who posts here and she used it herself to beat EBV . She uses it with her patients as well.
    There are several doctors who have written articles here who recommend the formulas targeted for specific antigens .
    We also have members who feel it has been a tremendous help in their recovery .
    I had chronic EBV and recovered from it by using a protocol by Dr Martin Lerner in Detroit ( who also had this virus himself) After a long period of time on HIgh
    doses of valtrex, I no longer test positive for it !
    I am now trying the transfer factor for CMV as recommended by my doctor.
  8. ANNXYZ

    ANNXYZ New Member

    Dr Patricia Salvato in Houston treats lots of CFS patients and is known for GETTING THEM WELL!!!! She used glutathione injections for eradicating viral infections and they have had good results with obstinate viruses that can not be treated with any drugs successfully.
    You might consider having your doc call Dr Salvato - mine did and I am going to try the injections as well.
  9. Mikie

    Mikie Moderator

    I think we are both on the same page with this. It's just that I have never heard this distinction in describing these illnesses.

    I have mentioned here many times that just fighting the particular pathogen which is infecting us isn't enough. I take colostrum and whey to retrain the immune system and it seems to be working. I may give the transfer factor a try.

    In addition, pathogens are wizards at manipulating their environments so they may thrive undetected. The last piece of my treatment may be addressing hypercoagulation which gives pathogens a hiding place. I had hoped that when my mycoplasma infection and Herpes-family infection were under control that the hypercoagulation might improve. My sed rate remains very low, however, and I suspect it will take some low molecular weight heparin to clear up the excess fibrin in my blood.

    If I can ever get over this nasty flu and get to feeling better, my doc and I are going to consider the heparin treatment.

    Again, I'm sorry that your Hep. C complicates your treatment even further and I hope you can find treatment which gets you well.

    Love, Mikie
  10. ANNXYZ

    ANNXYZ New Member

    HOW DO YOU RETURN THE CELL MEDIATED RESPONSE TO NORMAL???
  11. advancewithcourage

    advancewithcourage New Member

    There is alot of info on Mark Konlee's site Keep Hope Alive and Progressive Health News on returning cell mediated immunity to normal. Might want to check it out.
  12. morningsonshine

    morningsonshine New Member

    I'm finding alot of great info. on older posts.