37.5 Viruses Activated In CFIDS

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Nov 13, 2006.

  1. Mikie

    Mikie Moderator

    I found this article on the National Forum website while surfing websites about the latest in CIFDS research and treatments. While I knew that PWC suffer from an abnormal number of chronic infections, I had no idea the extent to which this is true. Formerly, it was believed we suffered from one to seven infections at any given time.

    Love, Mikie



    by Gail Kansky

    He's been published, given lectures, worked with the Pasteur Institute on CFIDS and plans a return trip, and is a researcher who is on the cutting edge of research; yet, unless you're a resident of California you may not know his name! Darryl M. See, M.D., is a name every PWC (person with CFIDS) will be hearing sooner or later. Dr. See plans to travel to France again soon to expand his research there. He has no doubt that the main causation of CFIDS is genetic, and then an "environmental trigger" has to come into the picture. He believes that if one can manipulate this disease on a genetic level, it can be cured, and he is already investigating ways to accomplish this task! Dr. See stresses that there is no diagnostic marker at this time and cautions that ones that laboratories offer are not to be trusted. After carefully ruling out all other illnesses, he tries to find out what sub-class the PWC is in and he states that "there are many!" Some tests he includes in his workup are:

    Quantitative IGG
    Natural Killer cell function
    Testosterone levels
    Cancer panel
    HHV6 titers
    Lymphocyte assay

    Although endocrine disorders in CFIDS are important, he believes "it is a secondary...and not a primary cause." A genetic predisposition (he's doing a lot of work in this area) has to be in place. A triggering agent, such as Mycoplasma Incognitus (MI) or HHV6 (human herpesvirus 6) leads to chronic immune activation and disequilibrium which then becomes a vicious cycle. "Our job is to break this vicious cycle so you can get better," said Dr. See.

    While in France, Dr. See found that a typical PWC has "37.5 viruses activated at any one time." [Note: The winter 1997 issue of the National Forum stated in error that the average PWC has 375 activated viruses.] While three markers have been identified there are "many more to find." There is also an allergic reaction to viruses that persists in the body.

    Some of the viruses actually insert themselves into the genome. The result, found by Dr. Vojani (Immunosciences Labs) and others are programmed cell death. He believes this can successfully be treated with glycopeptides and glycolupids. In an average AIDS patient, there are 25 million cells dying off but only one cell out of 1,000 is actually infected with HIV. Why do these other cells not infected with HIV die? They are getting signals from the infected cells! "The same thing happens in chronic fatigue syndrome," explained Dr. See,"but it works in a slightly different way." In the PWC, the white cells that should be at rest are activated and they don't know enough to shut down. However, there is now "really exciting new research in this area that leads to...blocking this."

    EBV (Epstein Barr Virus) initiates only 5-10% of CFIDS cases. Enteroviruses are taking a much larger part (coxsackie, hepatitis A, polio, etc.) and this is Dr. See's specialty. Enteroviruses have recently been found to play a role in diabetes, heart problems, and Lou Gehrig's Disease. Reactivation of viruses causes the Natural Killer (NK) cells to malfunction. He believes people acquire the illness as children, often through roseola, so the PWC is actually all set up for CFIDS and is just waiting for a trigger. He's looked at the viral load of HHV6 in CFIDS and found it in much higher numbers than controls.

    There are three retroviral classifications: oncoviruses (associated with cancer; retroviruses (associated with AIDS); spuma viruses (now discredited as part of CFIDS). His main focus is a class of virus called human endogenous retroviruses. Everybody has these and there's a lot of them, but when he does antigen (protein) tests on membranes, he found "tremendous amounts" in PWCs and they're being "transcribed in PWCs instead of just sitting there." He has published on this.

    In Europe, one team has found the PWC's ATP reserve barely exists. This translates into having no energy left so that the PWC collapses. He's looking for ways to increase ATP. Antioxidants are a help in this area.

    The immune system is complex and it is important to know what category you fall into in this area because the treatment that helps one PWC could actually be harmful to another. He published a study on interferon a few years ago. Interferon boosts NK cell function and kills viruses. Only PWCs with defective NK cell function did well on interferon and their quality of life improved dramatically. Since then, he has done a larger trial that is due to be published in the Annals of Internal Medicine.

    [The rest of this article appears in the Winter 1997 Forum, and includes a discussion of some of the drug and nutritional treatments Dr. See uses.]

  2. cherylsue

    cherylsue Member

    I wonder if any more research has been done in this area. I'll have to look up Dr. See on the internet.

    Good info.

    Hope you are feeling better.


    p.s. I read on the internet he is into Mannatech's glyconutrients. I know there is a following, but these do not help everybody. I guess you just have to know which "breed" of CFS you fall into before you treat. [This Message was Edited on 11/13/2006]
  3. Sandyz

    Sandyz New Member

    Thanks so much for this post. Its always encouraging seeing new things coming out of research. THank God for Dr. See and all his hard work for us. I feel strongly that when they find the answer for CFS and Fm they are also going to find out a lot that will help alot of other illness such as MS, cancer and many others.
  4. kholmes

    kholmes New Member

    I hadn't heard of Dr. See and his research. I hope more researches like him continue to attempt to unravel the puzzle of CFS.

  5. mezombie

    mezombie Member

    It's particularly encouraging to read that methods of blocking signals from infected cells are being looked into.

    Thanks for posting this!
  6. Mikie

    Mikie Moderator

    Often bring up more questions than they answer but usually, there is one little kernel of something which gets my attention. What it does tell me is that there is a lot of research going on in little areas we don't usually hear about. Not all of them pan out but if enough is being done, eventually, some of the puzzle has to unravel.

    Love, Mikie
  7. lenasvn

    lenasvn New Member

    mega bump
  8. victoria

    victoria New Member

    didn't Dr. See sort've get discredited, partially because he was hyping ambrotose which his wife was selling, or so they said, altho for some reason then Mannatech dissassociated him from them, he had been on their board or something...

    Altho that doesn't necessarily discredit his research findings... just trying to figure out where he stands today?! I'm kind of surprised she (Gail Kansky) didn't explain some of that?

    all the best,

    [This Message was Edited on 11/13/2006]
  9. DorothyVivian

    DorothyVivian New Member

    I so appreciate articles like this which give us quite a comprehensive view of the complexity of our conditions (those of us with CFIDS and Fibromyalgia)!!

    I, for one, can get extremely impatient with slow progress, which for me seems often to be three steps forward, and two steps back. And sometimes, I sink into real despair, at least for a time, when I have a relapse.

    When I read an article such as the one you've shared with us--I see how very complex and subtle many of the factors in these syndromes are.

    Thanks much!!
    With love, Dorothy
  10. Mikie

    Mikie Moderator

    Anything about this doc. I am not endorsing what he is theorizing but thought I'd pass it along. I am grateful to know about it if he has been discredited. Of course, his business dealings may not affect his research and then, again, they might. I take all these theories with a grain of salt.

    I do know that other research confirms that we suffer from multiple chronic stealth infections. I do not believe these infections are "the cause" of our illnesses but they can trigger them in genetically suseptible individuals. Of course, it's a chicken-and-egg arguement because infections could conceiveably alter our genetic makeup. I do know that unless the infections are treated, we cannot heal.

    Love, Mikie
  11. victoria

    victoria New Member

    do you know when Gail Kansky wrote the above article? Just wondering...

    I was just asking those other questions just in case you knew more about the subject... lots of conflicting info and had just heard something good about ambrotose from an unexpected source...

    All the best,
  12. Mikie

    Mikie Moderator

    I don't recall seeing a date on the website. I didn't bookmark it because it didn't seem to be of much interest other than this article. I'm sorry, I wish I had.

    It's been a very busy day with my post-op visit which, BTW, went very well. The doc was pleased that the surgery seems to have cured the situation. He said the gb was very inflammed and probably had been making me feel so sick. I don't need to see him and can resume normal activities in another week. But I digress...

    I think the website was the National Forum on CFIDS.

    Love, Mikie
  13. victoria

    victoria New Member

    Hope you're on your way to getting back on your feet fully... maybe this is what's been holding you back for so long? I know someone else who apparently had a long-standing tooth infection - taking abx & pulling the tooth has made a big difference. It's amazing how low-grade infections can build without us realizing it!

    Thanks, I think I did look it up but couldn't find a date... adding to my confusion lolol! Was hoping you'd have the answer.

    all the best,
  14. Forebearance

    Forebearance Member

    All this CFS research reminds me of the blind men feeling the elephant joke. There are so many different abnormalities in the body of a person with CFS, and we don't know which are causes and which are effects, it seems.

    I'm glad to read more about it.

    I totally buy the arguments that have been made for glyconutrients being helpful, and I bought some with great expectations, but they made me feel worse! And not in a productive way. So I'm an example of someone they didn't help.


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