Energy debilitating virus & US Open!!

Discussion in 'Fibromyalgia Main Forum' started by mrpain, Sep 1, 2006.

  1. mrpain

    mrpain New Member

    I've been watching the US OPEN tennis tournament from New York on the television.. When Justina Henin-Ardenne was in her match, the TV announcer kept referring to her health problems that she has been dealing with over the years by calling it an energy debilitating virus.

    Isn't that chronic fatigue syndrome they are talking about or is it something else? They never say chronic fatigue syndrome and I've noticed over the years no matter who the TV announcer is, they always seem puzzled by this tennis player's illness. Sometimes she has to drop out due to this illness but they never seem to know how to explain it on television...

    I'm betting it's chronic fatigue syndrome or fibromyalgia because she is also dealing with some pain. Does anyone else know, and is the energy debilitating virus something else?
    [This Message was Edited on 09/04/2006]
  2. Pianowoman

    Pianowoman New Member

    I have been watching the tennis too and have heard the same comments. Over the months, the same things seem to be said by the press. My feeling, as well, is that she has CFS. At the same time, it is pretty amazing that she is able to play a high level of tennis.
    It is possible that she has never publicly said any more than that she has a virus.
    Anyway, I'm enjoying the tennis!!

    Kathy
  3. carebelle

    carebelle New Member

    I have heard something like that to.I wish I could play tennis .It would be nice if the anouncers talked about something that they knew about .
  4. mrpain

    mrpain New Member

    Thanks for all the great information......What did she do to fully recover? She will probably win the US OPEN and Federer will probably win for the men even though I would have loved to have seen Agassi win..

  5. ulala

    ulala New Member

    is the anti-viral Valcyte, generic valganciclovir.

    This is the expensive anti-viral that a lot of people on this site have expressed great interest in getting. There is a Dr. Montoya in Calif. who has been treating people with CFS with Valcyte and getting good results.
  6. mrpain

    mrpain New Member

    Has anyone on this board ever tried valcyte that you know of?? and what were there results? Is this well known? Thanks for the info.... I'll do some research on it..
  7. ulala

    ulala New Member

    written about Dr. Montoya and his use of Valcyte. Some have been on Valcyte.

    Many sufferers on this site have high antibodies to CMV. Mine were 222 which is very high.Have you been tested for CMV?

    Posted by Lamotta77:

    By JEROME BURNE, Daily Mail 11:33am 16th May 2006

    A drug used to treat herpes infections has produced a dramatic improvement in patients severely affected by ME, or fatigue syndrome. Sufferers who for years had been unable to leave their homes now report being able
    to resume normal life.

    This is a remarkable result for a treatment for this complex and controversial disorder that is thought to affect as many as 240,000 people in Britain and for
    which there is no cure.

    The results, reported at a scientific conference earlier this month by Professor Jose Montoya of Stanford University in California, involved 12 patients who had been given the powerful drug valganciclovir, which targets the human herpes virus (HHV-6). Nine of the patients experienced a great improvement.

    One of Montoya's cases was onetime champion figure skater Donna Flowers, now aged 50 and working as a physiotherapist, who lives in California's Silicon
    Valley.

    "Two years ago, I was spending 14 hours a day in bed and my brain was so fogged I couldn't write a letter," she says.

    "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."

    However, she is now back at work, treating young Olympic hopefuls, the nanny has gone and she's just started ballet lessons.

    'Soaring energy levels'

    "When Donna came to see us, her energy levels were around 10 per cent of what she considered normal,' says Montoya. "Today, she is functioning at 90 per
    cent."

    One patient who could barely walk around the block is now cycling three hours a day, while another who could not even get down the stairs to breakfast is now up every day at 7am.

    The professor reported his findings at a conference on the HHV-6 virus, which was held in Barcelona earlier this month. While it's well known that some patients with CFS have signs of various viral infections, this is the first time that treating one of the viruses has been shown
    to be so effective.

    "I was amazed by the results," says Montoya, who runs the infectious diseases clinic at Stanford. "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 like as dramatic. It was pure serendipity."

    'Careful monitoring'

    Valganciclovir is licensed to treat HHV-6 infections of the eye, which can affect transplant or cancer patients with severely weakened immune systems.

    HHV-6 is not the same as the herpes virus responsible for cold sores. Most commonly, it causes roseola infantum in children, who get a fever and a rash.

    "I have treated hundreds of immune compromised patients with the drug, so I am very familiar with it," says Montoya. "It can have serious side-effects including
    anaemia, so you have to monitor patients very carefully. But so far none of the CFS/ME patients have reacted badly to it."

    All the experts agree that a lot more research will have to be done before valganciclovir can be widely used as a treatment.

    "There is a long history of linking CFS/ME with some sort of viral infection," says Charles Shepherd, a medical advisor to the charity Action For ME.

    "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."

    Montoya agrees: "These were individual cases and it is always possible the results were due to a effect," he says.

    However, 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 valganci-clovir could eventually provide an effective treatment for some cases of CFS is just part of a wider picture. Over the past year,
    genetic research has provided a new understanding of the disease that could eventually lead to new therapies.

    For years, the conventional view has been that there is no known cause, no way to diagnose it and no effective treatment.

    Some doctors and health workers believe it is the result of social and psychological factors - and best treated with psychotherapy and exercise.

    Now it is becoming clear these patients have "a disturbance in their body's natural way of dealing with infection," says Malcolm Hooper, Emeritus Professor of Medicinal Chemistry at the University of Sunderland.

    "Anti-viral drugs such as valganciclovir may be allowing it to re-set itself."

    Hooper was one of the speakers at a conference in London for ME Awareness Day on Friday. Another speaker was Dr Jonathan Kerr of St George's Medical School in London, who recently published groundbreaking work on the links between genes and CFS/ME.

    "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," he says.

    The hope is that a relatively old drug, called interferon beta, can help to restore the balance. A controlled trial is planned. What researchers such as Kerr find disheartening is that there seems to be little official support for this biological-based research in Britain. The
    bulk of the funding has gone to the psychological approach.

    But many hope a parliamentary inquiry looking at the progress of CFS/ME research will find that research involving genes, viruses and the immune system
    would benefit patients.
  8. mrpain

    mrpain New Member

    Thanks for taking the time on all the information you have given... This is awesome. Can we get our doctors to give us this drug or do we have to wait for a lot of red tape?
    I sure wish they wouldn't drag their feet...

  9. Jeanne-in-Canada

    Jeanne-in-Canada New Member


    That's the kind of stuff I love to see research dollars spent on. Not this bogus FM/CFS is stress related like we always knew, here's another study that if we really stretch it will prove it. (not really, but darn do they try)

    Jeanne
  10. ulala

    ulala New Member

    There is a doctor Lerner who treats these diseases with Valcyte. You can do a search on this site and read about him.Valcyte is very expensive and is approved for CMV that attacks the retina. Usually people with HIV are the one's that have the retinal involvement but I think that a lot of us have high antibodies to CMV because we have ben exposed to it and our body does not fight it properly so there are pieces of the virus that are not supressed andmake us sick.

    I just watched a show on Discovery Health about a new treatment for AIDS called Secrets Of The Great Plague.

    Scientists discovered a mutated gene, that if a person inherited it from both parents it protected them from the Bubonic Plague and another diseae that killed almost everyone that it infected. Some people never got the diseases even though they were in close contact to those who had the disease and died.

    They have made some medicines that mimic this particluar gene. The gene prevents the HIV virus from entering the cells so they can never become infected.

    The medicines are called fusion inhibitors or entry inhibitors. People with HIV are being treated successfully with these drugs.

    Scarflady posted this today "HIV Medication for Chronic Fatigue 09/03/06 10:57 AM


    Has anyone tried the prescription medication for HIV to help Immune systems? I saw my doctor recently and is treating a patient with the same meds being used for HIV patients. She said the results for her patients Chronic Fatigue were remarkable. The prescription has to be compounded and I plan to try it soon. I could not find any previous posts relating to this possibility and am very interested in finding out more..... "

    I'm wondering if her doctor could be talking about the fusion inhibitors or entry inhibitors?

    Hopefully we'll hear something about this soon! If you can watch the show on Discovery Health about the plague and the gene that they found that protects people from getting some terrible viruses you will see how it can relate to us!




    Hopefully this is true! Keep us posted
  11. mrpain

    mrpain New Member

    Some great information.. Thanks for taking the time to share this with us all. I did some research on this and the meds, and it's pretty much as you have said... Hopefully, they're getting closer with a cure for us all...
    Thanks again!!
  12. findmind

    findmind New Member

    Oh, gosh I have watched Andre for his entire 21 years! I cried when he cried. I know he was crying because of the love the crowd was showing him, but I think he also was grieving for the loss of playing such high caliber tournements.

    I can't wait to see if he plays with the "seniors"! Can he still play the Davis Cup?

    I think its wonderful he and Steffi Graf are married, and aren't those kids beautiful?

    I'd like to see Roddick in final, but don't think he is doing as well as he could yet. New coach, Jimmy O'Connors, needs to work on him some more.

    BTW, what the heck happend to Amalie Mauresmo in the 2nd set? She lost 6-0! I also can't believe how well Sabrina Williams played, with so much BODY to have to haul around! She was amazing, but think her size will take a toll on her as the years come. Her knees and ankles must really be taking a beating.

    Can't predict yet, but think Federer has the definite edge, but I sure like Nadal, too...he's fiery this year!

    In the CST, they go from CBS on weekend, to USA at night and weekdays, and then CNBC (tonite) after 2 hrs on USA...almost missed the end of Williams/Mauresmo match cause was taping it! Thank goodness, checked it out just before it SWITCHED CHANNELS! It made me very mad, as what if I hadn't checked? I tape to go past the commercials, so didn't even see any announcements about the channel change: they really should announce it more often.

    Of course a great tennis player with lots of money, like Henin-Hardenne would have a great dr. who would give her Valcyte in an instant; we all should be so lucky. I hope she recovers fully and becomes a spokesperson!

    later....
    findmind