Dr. Teitelbaum's Take on XMRV

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Oct 14, 2009.

  1. Elisa

    Elisa Member

    Hi All,

    Not what I had hoped his response would be...but nonetheless worth readng...


    God Bless,

  2. AuntTammie

    AuntTammie New Member

    It seems that he is taking somewhat of a wait and see approach....acknowledging that this is potentially good news, but that we don't know enough yet to be sure if this is another opportunistic infection or the cause....honestly, I think that is good, though I might have worded some of what he said a bit differently

    I did like this quote a lot:

    "as some nitwits out there still like to make believe CFS is 'all in people’s heads,' this study, along with dozens of others, again confirms just what nitwits they are. But don’t expect a study in Science or the truth to sway their thinking anytime soon. Perhaps eventually they will learn they can offer "coping counseling" CBT in any severe disease (e.g., cancer, MS, etc.), without trying to invalidate the physical nature of the illness and imply people are nuts because they are ill."

    and those of us with ME/CFS know exactly who those nitwits are : )

    Wouldn't you just love to see the headlines- Discovery of XMRV Confirms: CDC Are Nitwits
  3. jasminetee

    jasminetee Member

    Thanks for posting this Elisabeth. It's interesting to see what Dr. Teitelbaum's thoughts are regarding this retroviral discovery.

    I went to a talk Teitelbaum gave back in 2003 or so in my local health food store. I don't always agree with his conclusions but I'm always happy to see a doctor working to help us.

    LOL AuntTammie. One thing we all have in common is we have a common enemy.
    [This Message was Edited on 10/14/2009]
  4. TigerLilea

    TigerLilea Active Member

    The XMRV could turn out to be a big fat "nothing". People are getting way too excited. Let's wait and see how this plays out.
  5. Dantes

    Dantes New Member

    Seems to me that he is downplaying it to push his own treatment protocol.

    Where have we heard this before....

    Either XMRV is a cause, of some subsets, or it is an opportunistic virus.

    I have not studied viruses enough to distinguish their characteristics but it seems that Herpes viruses and retro-viruses are two, greatly different animals.

    Seeing that Montoya and Lerner have met with "iffy" results, regarding Herpes viruses, this may be the missing link... or, at least, the other half of the subsets.

    Example: If Montoya and Lerner were able to see positive results in 50% of their patients, treated with anti-virals and then the WPI is able to treat with 50% success, then we may have 100% here.

    That is not 100% of the solution but maybe 100% of what is causing the immune dysfunction. Lyme, Mycoplasma/Chlamydia Pneumonia and Herpes Viruses may be causing a large part of suffering because of the XMRV/Herpes immune component.

    Getting rid of the immune system saboteur is key here. I expect this new discovery will make that identification easier.

    Then, like Lyme treatments, we can get combo therapies that target multiple pathogens. Take an anti-RV with an antibiotic, etc.

    A multi-prong approach will likely be the ticket for many of us. However, we have to nail down the diagnostic testing and connection with CFS/ME. If we do not, then we will have to speak in code to find a doctor willing to treat us... like Lyme patients are familiar with.

  6. quanked

    quanked Member

    I read his response. I also looked over his site. If his protocol cures/heals CFS then why aren't people writing about this on here?

    I grasp what he is saying about XMRV virus--there may be any number of causative factors involved in CFIDS. On the other hand he does not seem to even consider how XMRV figures into the scheme of things except as a possbile avenue for making huge sums of money for big pharma.

    If his protocol brings significant relief to sufferers of CFIDS I do not believe this board would exist.
  7. Elisa

    Elisa Member

    I guess I feel a retrovirus is very different than any other infection - because it causes LONG LASTING illness - unlike the course of regular infection. To me this defines ME/CFS - it's nature - that the immune system doesn't get rid of it - it persists. Other infections in most cases come and go.

    I think XMRV sets the stage - and then complicates with its co-infections.

    Thanks for all the EXCELLENT feedback!

  8. slowdreamer

    slowdreamer New Member

    Also WPI are saying that XMVR Virus is activated by hormones and so many Complementary CLinicians etc are using hormones as treatment for CFS...Please correct if I have got this wrong...
    What interesting times we live in.
    Conundrum watcher
  9. skeptik2

    skeptik2 Member

    Today, thru the Dallas Ft Worth CFIDS SG, Dr. Cheney said something
    to the effect that it makes sense to him; XMRV is the answer.

    Then Dr. Bell chimed in with his newsletter, saying he's sorry he's
    not going to have a quiet, serene retirement; he wants any patients
    that were his original patients in 1986 in the Lyndonville outbreak
    to get in touch with him; he wants them tested for XMRV. He's that
    sure of how important it may be.

    Dr. Bell also mentioned that herpes viruses are famous for
    harboring a retrovirus, which caught my attention.

    Can't wait for further developements!

  10. jasminetee

    jasminetee Member

    Elisa – Well said. I think that's the most likely scenario too.

    Slowdreamer – I wonder if that's why women with CFS & FMS often become worse when they try taking hormones.

    Skeptik2 – I can't wait either. That's very interesting that herpes viruses are famous for harboring a retrovirus. Wow!
    [This Message was Edited on 10/15/2009]
  11. Ales

    Ales New Member

    I would disagree that "hormones" cause damage to a retrovirus infected patient. In AIDS related kachexia the standard treatment is oxandrolone, which is an anabolic steroid. The muscle gains then help immunity.
  12. GFK

    GFK New Member

    Better take a look at this.....pay close attention around 3mins 30secs.

  13. endfatigue

    endfatigue New Member

    My Perspective on the XMRV Virus
    In a recent newsletter I discussed the XMRV virus and the research on its role in CFS. I offered my concern that the buzz may actually be causing some to miss the larger picture of what is happening in CFS, with XMRV simply being 1 of many infections and problems in this illness. It’s certainly not my intent to dash hopes. Rather, my intention is to offer perspective from over 30 years experience, so that people can use all the tools that may help them get well.
    We have been treating viral infections (and many other infections) as one of the cornerstones of resolving CFS for decades. The recently reported research on the XMRV virus, while a useful new finding that will help in our efforts to find effective CFS treatments, is in essence but one more documented infection.
    Our research shows that 91% of patients treated with the SHINE protocol improve, and many get well. And remember that the “I” in SHINE stands for Infections — with multiple treatments which help treat viral infections (such as XMRV) included. Following the more complete treatment approach that SHINE addresses is what represents real and proven hope.
    It’s good when discoveries are made that point to new infections that are relevant to CFS. And when this happens, we expand our treatment coverage to include them. I look forward to seeing if antivirals active against XMRV offer additional clinical improvement in CFS. But we choose not be distracted to reduce our focus to only a single infection type, when there are so many that we can effectively treat to help you get well now.
    The XMRV research also offers other benefits, such as offering media attention , and helps make it even clearer yet how real and devastating CFS is. This may offer a bit more to silence the nitwits who like to claim CFS is all in your mind (though I would not count on it, as they have ignored reams of earlier research showing CFS/FMS to be very real illnesses). My concern is that this not blind us to the rest of the research in the field—causing much harm to those with the illness.
    My take may not be popular with some folks right now, but it is based on a broad perspective gained by 30 years experience in the field. It may not be what is most popular today, but it is my responsibility to offer in my role as your advocate. With effective treatment already available for many, and this new XMRV viral research offering yet another reason to be hopeful, that’s not a bad thing.
    In addition, the SHINE protocol includes “I” for infections, and part of my program , and the program used at the Fibromyalgia and Fatigue Centers nationally, includes many antiviral therapies that likely help against XMRV as well as other viruses. Especially helpful to many patients are the IV therapies. See my earlier article “Treating Hidden Viral Infections in CFS/FMS Can Sometimes be a Cure”. on my web site

    Love & Blessings,
    Dr. T

    PS- For more, see the Washington Post article, “Don't wait for a cure to appear” by Zachary Sklar (who also has had CFS for 23 years). Zachary Sklar is a former executive editor of the Nation magazine and co-author of the screenplay for the film "JFK."

    PSS- Amazing how simply voicing an opinion to help offer perspective quickly can launch into personal attacks. Sad, but I guess part of today's environments. Anyway, I have no infomercials (despite the accusation below), make no or less money if XMRV becomes important (it's simply 1 more thing I get to treat), and have just finished travelling ~ 45,000 miles lecturing to ~ 2400 physicians and thousands more patients throughout the world over the last 2 months , plus a lot of media (sadly the Oz segment got edited to death--it started out good before edits) to help teach about CFS. No one paid me to do this (I did get one $500 speaker fee), but do it because it is my job and joy as a patient advocate. Despite some of the attacks out there (sometimes vicious and baseless--after what it costs to teach about this illness, who the heck has any money left to make infomercials???), know that I am on your side. I work hard getting out the info because most people can improve with the right treatments. It takes work to figure who needs what, which is why I have a free online "Symptom Analysis" program on my web site that can analyze your symptoms and labs to determine exactly what treatments you need. For the skeptics, I accept NO money from the drug or natural product companies (which is a lot to turn down). I work for you instead
  14. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Dr. Teitelbaum, I want you to know I do know you are trying to help us. I remember that you too were sick.

    While I believe the FFC clinics are overly expensive and overly marketed as a seeming "get cured quick" scheme (only different in topic, but not in tone, to the "get rich quick" scheme), I did get better from the treatment offered at the Atlanta clinic. If there was one in Birmingham and people could afford it, I would encourage people to go but also use their common sense. For example, some of the supplements can be purchased cheaper from herb stores.

    I also know addressing infections is part of your protocol.

    I think where maybe I differ from you is that this virus attacks the immune system in a way that none of the other viruses we have does. Also, as has been stated, the other viruses are already seen in a large part of the population, but the difference in the showing in healthy controls and CFS patients in the WPI study also makes this discovery stand out.

    Does it not make sense that possibly XMRV, like HIV, makes the person weak to the other viruses that have been discovered?

    I know that we don't have all the answers and more research is needed before a causative relationship can be determined. But I don't think it is quite right to lump this one in with the previous viruses as just "one more documented infection." This one is different in its showing in healthy controls compared to PWC and its different in the way it debilitates the immune system.

    If you have information that shows I am wrong, please share.


  15. chrissy12

    chrissy12 New Member

    We do appreciate you coming to this board personally and giving us your input. While I do believe the Shine protocol has a place in this disease, it may not be enough.

    I am a patient of Dr. Lerner's and have followed his protocol completely. The viruses and co-infection are very difficult. The numbers are moving extremely slowly. Why??? I have been on valcyte, valtrex and doxycyline for over 1 1/2 years.

    This new research may shed some light on why??? We are all looking for more answers as I am sure you are, too.

    Please know that your input on this board is appreciated. It is obvious that you do care about this community.