Valganciclovir Helps With Energy In Patients With CFIDS

Discussion in 'Fibromyalgia Main Forum' started by Mikie, May 31, 2006.

  1. Mikie

    Mikie Moderator

    This article was in my e-newsletter from ProHealth today. I thought y'all might want to see it. Many of us suffer from the HHV-6 Herpes Infection and it is very difficult to deal with. I have found the transfer factors sold here very helpful for dealing with stealth viral infections too. Famvir helped me but I have not tried this AV.

    BTW, if you want the e-newsletter, go to the Home Page here and sign up for it. It contains many very helpful articles, by the foremost experts who research and treat our illnesses, on the most cutting-edge treatments.

    Love, Mikie


    A Herpes Drug May Make Energy Soar for Chronic Fatigue Syndrome Patients
    by Editor


    A drug normally used to treat herpes infections has produced a dramatic improvement in patients suffering from Chronic Fatigue Syndrome (CFS). Patients that had formerly been house-bound report being restored to normal life activities. CFS affects about 1 million patients in the United States, and about 240,000 in Britain. There is no cure for CFS, only ways to manage the condition.
    The London Daily Mail newspaper reported the study results, which were delivered at a scientific conference earlier this month by Professor Jose Montoya, M.D., an infectious disease researcher and Associate Professor at Stanford University. The study took place in California, and involved 12 CFS patients who were given the drug valganciclovir, which targets the human herpes virus (HHV-6). Nine of the 12 patients reported a great improvement in their condition. The professor’s findings were reported at a conference on the HHV-6 virus held in Barcelona earlier this month.

    Donna Flowers, a onetime champion figure skater now aged 50 and working as a physiotherapist, was quoted in the Daily Mail as saying “Two years ago, I was spending 14 hours a day in bed and my brain was so fogged I couldn't write a letter. I wasn't functioning at all. I'd been diagnosed with chronic fatigue, but the doctors didn't have anything to offer. I had to employ a full-time nanny just to look after my three-year-old twins.” Now she is now back to coaching young Olympic hopefuls, has fired the nanny, and has started taking ballet lessons.

    Participants Report “Soaring energy levels”

    “When Donna came to see us, her energy levels were around 10 per cent of what she considered normal,” Professor Montoya was quoted as saying. “Today, she is functioning at 90 per cent.” A patient who could hardly walk all the way around the block is now bicycling for up to three hours each day. Another patient who could not even leave the bed now comes to breakfast every day at 7:00 AM.

    CFS patients often have signs of pre-existing viral infections, and viral infections have even been thought to be “triggering events” for the onset of CFS in some patients. This is the first clinical study to indicate that treating one of the viral infections would also be effective in the underlying CFS symptoms.

    “I was amazed by the results,” Professor Montoya was quoted as saying at the infectious diseases clinic he heads at Stanford University. “Donna was sent to me because high levels of another virus (Epstein Barr) had been detected in her system. I found high levels of HHV-6 virus as well, so I treated her with valganciclovir to bring down her viral load. I'd hoped it might help a bit, but I didn't expect the results to be anything so dramatic. It was pure serendipity.”

    Careful Patient monitoring is needed

    Valganciclovir is a prescription drug approved for treating HHV-6 infections of the eye, which can occur in individuals with severely weakened immune systems, such as transplant or cancer patients. The HHV-6 virus is not the same as the herpes simplex virus that causes cold sores. Most commonly, it is associated with a condition called roseola infantum, a fever and a rash in children.

    “I have treated hundreds of immune compromised patients with the drug, so I am very familiar with it,” stated Professor Montoya in The Daily Mail. “It can have serious side-effects including anemia, so you have to monitor patients very carefully. But so far none of the CFS/ ME patients have reacted badly to it.” These preliminary results will have to be studied in many more patients before the drug valganciclovir can be used as a standard treatment.

    Charles Shepherd, a medical advisor to the charity Action For ME (CFS is known as ME in England) told The Daily Mail that CFS/ME has long been associated with prior viral infections. “About 75 per cent of cases begin with an infection which the patient never properly recovers from, so it is quite likely infectious agents lurk in the body. While the role of HHV-6 is certainly plausible, we will have to wait for a larger trial that is properly controlled.”

    Professor Montoya commented on the possibility that the results were just due to a placebo effect. He told the newspaper “that is unlikely because we saw a worsening of each patient's condition around week three to four of the treatment, probably when infected cells were dying off. After that came the improvement. That is not a pattern you get with placebos. But we don't know yet why the drug makes such a difference.”

    The possibility that a drug has been found that could eventually provide an effective treatment for some patients with CFS is just one part of the puzzle being studied by researchers. Genetic research is also providing clues that may lead to new treatments and therapies.

    Traditionally, it has been assumed that CFS had no known cause, no direct diagnosis, and no known cure. Some practitioners considered CFS symptoms to be “all in the head,” and recommended psychotherapy as the primary treatment.

    Now research is showing that these patients have “a disturbance in their body's natural way of dealing with infection,” Professor Malcolm Hooper, Emeritus Professor of Medicinal Chemistry at the University of Sunderland told The Daily Mail. “Anti-viral drugs such as valganciclovir may be allowing it to re-set itself.”

    Dr Jonathan Kerr of St George's Medical School in London, a published researcher on the interplay between gene activity and CFS/ME, told a recent symposium that “We've found that the genes in patients' white blood cells — a key part of the immune system — are switched on and off in an abnormal fashion.” A controlled research study on interferon beta, a relatively old drug, is in the planning stages to see if it can help restore the genetic balance. It is hoped that studies involving the interplay of viral infections, genetic action and immune system functioning will provide new options for the treatment of CFS patients and the management of CFS symptoms.

  2. Tantallon

    Tantallon New Member

    Excellent article Mikie, causes and treatment, that is what we want and it seems that we are getting one step nearer to that.

    Thank you for posting


    ANNXYZ New Member

    I believe it was originally made to target CMV virus .
    The part about resetting the immune system is EXCITING !

    I have a feeling this may be a big plus !
  4. NyroFan

    NyroFan New Member


    Good information. Thank you for posting.

  5. findmind

    findmind New Member

    Why is a study done at Stanford reported in the London Daily Mail?

    Only 12 patients? I've heard one must have 500 for a study to be valid. I wonder if they'll find 500 patients to test.

    Why can't our CDC set up a study using our own doctors who would report the results back to study coordinator?

    It is so hopeful to hear news like this, as there may be a large subset of PWCs/ME out there who could benefit.

    The newsletter from ProHealth is so good, always uplifting and

  6. ilovecats94

    ilovecats94 New Member

    It's not will the doctor give you an Rx for it, it is will your insurance company cover that med.

    I think the insurance companies are causing more problems than the doctor's are.

  7. Mikie

    Mikie Moderator

    A number of docs have been treating their CFIDS patients with antiviral meds with good success. Most of y'all know that when I was given Famvir as a precaution prior to facial surgery, I went into a temporary, but complete, remission. It was as though I had never been sick. This was a big clue to my doc and to me that I had some kind of stealth virus or viruses, probably in the Herpes Family. I started taking the Famvir on a regular basis and Herxed from it. Eventually, I only pulsed it off and on.

    When I learned about the transfer factors, I switched to them and Herxed even more severely. I now pulse the TF's a couple of days every six weeks.

    Most of us simply do not have the money for the types of tests which uncover stealth viruses and most ins. co's will not cover them. The FFC's do extensive testing and some or all of the lab fees have been covered by some of the people who have posted here. It just depends on one's ins.

    Both my Doxycycline treatment for mycoplasma and my Famvir treatment for stealth viral infection were done empirically, without testing. This is a time-honored, and perfectly acceptable, way to treat. The drawback is that one may not know the exact strain of the chronic infection. In my case, both treatments have been successful. The addition of the Heparin for infection-induced hypercoagulation was also successful and uncovered pockets of infection in my blood.

    Because most of us have been sick a very long time, it can take a long time to clear up stealth infections. I like the TF's because they train the body's immune system to recognize and kill the pathogens. Immunity isn't permanent and that is why the TF's must be periodically pulsed.

    I still keep the Doxy and an AV on hand in case I need them. Dr. Nicolson told me in an e-mail that even when the mycoplasmas appear to be erradicated in the body, if one gets run down, cysts deep in the body's tissue will try to reactivate. That seems to have happened following the stomach flu recently and I did a course of the Doxy. I Herxed quite significantly, so the Doxy was killing something off.

    These treatments aren't cures and they surely aren't quick but I doubt I would have made any progress without addressing my chronic infections.

    The HHV-6 is especially troubling. The sickest of PWC most likely have chronic HHV-6 infections as do most AIDS patients. AV's have not been very effective with HHV-6. This AV seems to be better as are the TF's.

    I'm glad you all like the article. It has just reinforced in my mind the importance that chronic infections play in our illnesses.

    Love, Mikie

  8. painandagony

    painandagony New Member

    Does anyone know if my HHV-6 test done by my primary family practice doctor comes back negative, could I still have it and the test wasn't sensitive enough to detect it?
  9. kriskwon

    kriskwon New Member

    probably another "dumb" question, but is Valganciclovir a new drug? How is it different from my Valtrex, or Acyclovir?
    [This Message was Edited on 05/31/2006]
  10. Mikie

    Mikie Moderator

    Pain, a lot of the tests the docs perform for chronic stealth pathogens are not sensitive enough. PCR DNA tests are really the most sensitive but unless the blood is carefully handled, false neg. results can occur. I think this is why so many docs, with the exception of the FFC's, simply try antivirals to see whether their patients get better.

    Kris, I don't know whether this AV is newer than the ones which have been used in the past. What is different is that this one appears to be effective with HHV-6. HHV-6 has been overlooked in our illnesses. It makes people feel very sick. It isn't the HIV which makes AIDS patients feel so horrible; it's that most of them have HHV-6. A large number of CFIDS patients also have HHV-6. If you read, "The Virus Within," it will explain a lot about HHV-6.

    There are two strains of this virus, A & B. The B strain isn't as virulent as the A strain. The TF System 200 sold here targets both strains. I guess it is no longer sold under this name but is now called by a different name. When I have to reorder, I'll have to ask what to buy.

    I had taken Famvir for a long time before I switched to the TF's. When the immune response and Herx came from the TF's, there was the strangest sensation which is difficult to describe. I felt as though my body were full of ashes which were being purged. It only happened with the first two Herxes and the first time was much stronger than the second. I can tell from my Herxing whether it is a bacteria versus a virus which is being killed off. This was a totally different sensation. Obviously, the TF's were killing off something which the Doxycycline and the AV had missed. Was it the HHV-6? I don't know. All I do know is that, overall, I'm better and continuing to improve, albeit at a snail's pace.

    My own immune system is usually able to fight off common viruses. The problem I have run into is that when I do get something like a virus or the flu, the old chronic viruses will try to reactivate. That is why I keep the Doxy and an AV on hand. I continue to take my probiotics, colostrum, and whey and I believe they do help rebuild the immune system.

    Love, Mikie
  11. Mikie

    Mikie Moderator

  12. kriskwon

    kriskwon New Member

    I learned a lot and will definetly get that book to read. I never really got into the "why's" and the "how comes" of this (or rather "these") disease(s). I was always too sick!

    BUT, now my husband is in charge! He said, "That's it, I want my wife back."! That was about 2 weeks ago. He even reads this board. I know take about 1/2 supplements and 1/2 traditional medicanes.

    I have just got done with the yeast cleansing (per his directions :<) and will go onto the next cleansing, which I think is parasites.

    Between me and him, we've done a lot of researching. Also when I'm up to it, we go visit a friend of mine who works at Whole Foods in the vitamin dept. The only problem is that nearest Whole Foods (or the nearest anything for that matter) is 120 miles away. I live in a small town, kinda in the middle of no where.

    But, the biggest change I've done is my diet. That alone has help immensesly (sp?). Mikie, I want to thank you for all the help you've given me in trying to understand all this! And you watch - I will get my life back. Well, maybe not the Martial Arts!
  13. Mikie

    Mikie Moderator

    How wonderful to have such a supportive and understanding hubby. Progress can be agonizingly slow, but progress is progress. You've already taken the first step. Researching and trying new treatments is the way most of us who have gotten better have done it.

    I suggest you go to the Home Page here and order a catalog. The supplements sold here are just for those of us with these illnesses although others can take them. The catalog is broken down into supplements for various problems, so it is easy to use.

    Keep us updated on how you are doing. If I hadn't taken an aggressive approach, I would likely still be bedridden and on Morphine. I'm not well, but I will be looking for a part-time job soon. Thank you for your kind words. If my own healing experience can help others, it will be a double blessing for me.

    Love, Mikie
  14. Mikie

    Mikie Moderator

    It's amazing to find another person who has had that experience. I knew as soon as I felt it that the TF's were killing something off which the Doxy and AV's had missed. I always think it must have been the HHV-6 because the AV's aren't very effective against it but the TF's are supposed to be.

    Our bodies tell us a lot if we are tuned into them.

    Love, Mikie
  15. msmac

    msmac New Member

    This is of great interest, and I hope some confusion can be cleared up about this drug. This is from my drugstore's patient information leaflet: " The drug is labeled as an antiviral, for treating people with immune systems problems, (e.g AIDS, transplant patients) who have a serious eye infection cytomegalovirus or CMV). However it is not effecting in preventing CMV disease in liver transplant patients. It is not a cure for CMV retinitis."

    The CFS use is a new, off label, and I don't yet know if doctors will readily prescribe it for us, nor if our insurance companies will pay for it.

    AND this is IMPORTANT as, comparing it to the price of another antiviral drug, Valtrex, (used for herpes infections), the costs are: Approx. $2,000.00 for the Valcyte, and $650 for the Valtrex. Any information anyone has on this I would very interested in hearing, and again, thanks mikie for the info!
  16. Mikie

    Mikie Moderator

    If Valcyte turns out to be effective at helping other conditions, it will likely become less expensive. Still, that's a lot of money.

    TF's are expensive because they are so labor intensive to produce but nothing like new drugs. I really am a fan of the TF's but I don't think they are "the answer" for us.

    Love, Mikie
  17. jarjar

    jarjar New Member

    I presume the reason this was published in a London paper was because from what I understand the announcement of these results were made at a conference in Europe. I remember reading that when I first read article and posted it.

  18. pawprints

    pawprints New Member

    Is this drug given IV?

    Perhaps the TF can accomplish the same thing without the harsh side effects.

    Any thoughts?
  19. Mikie

    Mikie Moderator

    As I said, I am a BIG fan of TF's, but they can produce immune reactions and Herxing which are the epitome of harshness. Still, I like them because instead of just killing pathogens, they train one's own immune system to recognize and kill them.

    I have had immune responses and Herxing with every treatment I've used which is designed to eliminate pathogens. ABX and AV's produced the mildest immune responses. TF's were worse and the Heparin produced the harshest immune responses. Herxing is about as harsh with one treatment as another. TF's are not for the faint of heart.

    Love, Mikie
  20. Martin L

    Martin L New Member

    Did anyone manage to get a copy of the paper presented in Barcelona by prof Montoya?? I have been searching everywhere see what his treatment protocol was - it definitely sounds worth a go!! (And my doc is happy to prescribe it if I can find out how Montoya used it)