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New Update From Dr. Jamie: XMRV and antiretrovirals

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by shannah, Dec 30, 2010.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Right, it is all excellent and they let you board first too and get first shot at the bins--and they will lift your bag up for you. Altogether a good thing. Security is easier too.

    Sushi
  2. urbantravels

    urbantravels disjecta membra

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    Haven't used it yet; the one time I've flown out of LAX (I live 15 minutes from it) since becoming ill, I didn't use the wheelchair service - but I really, really wished I had. Next time for sure...though now I have my own wheelchair I may just bring that.
  3. Jenny

    Jenny Senior Member

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    Anyone heard how Andrea W is doing? I believe she's on tenofovir.

    Jenny
  4. Snow Leopard

    Snow Leopard Senior Member

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    While I agree it they may not be a silver bullet, these results don't prove much either way - existing drugs may lack specificity, along with dosage etc.
  5. Jemal

    Jemal Senior Member

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    True, true. I am still hopeful there's already stuff on the shelves that will be of (much) use to us. Maybe 2011 will be our year?
  6. Cort

    Cort Phoenix Rising Founder

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    That brought a smile to my face. That's good to hear.
  7. alex3619

    alex3619 Senior Member

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    Hi sushi, my understanding, which could be wrong, from someone who is under consideration for this testing, is that it is gastrointestinal biopsies. I don't think he is testing stomach lining but colon lining. I will try to confirm this but it will take a while.

    Bye
    Alex
  8. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Good point. Was it Dr Mikovits who suggested that its very presence could be causing an immune response (low grade, chronic and long term)? After all, this retrovirus is foreign to the body and not supposed to be there - its an invader.

    HIV/AIDS may have limited applications as a comparison model.
  9. 5150

    5150 Senior Member

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    There are many extremely sick patients who won't survive this slow walk toward treatment. WE ARE DYING NOW. what a colossal crime to have the path to viable drugs impeded. In one year from now,if it goes like 2010, there will be deaths that were caused by failure to develop these drugs. Meanwhile, just short of death, many valiant people struggle onward, just trying to make it until tomorrow. It truly is that serious. Nobody wants to die waiting, while deals are either made or not. Playing politics with the lives of deathly ill persons is about as low as it gets. One year from now will be too late for many of us. There was such a surge of hope when WPI published more than a year ago. What has occurred since is just nuts.
  10. 5150

    5150 Senior Member

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    I believe it is time the patient community has an answer to this question. Maybe there others who can afford whatever is the financial cost to also receive that treatment. I'm sure everyone wants the best for Andrea. We also want the best for all suffering patients.
  11. shannah

    shannah Senior Member

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    I couldn't agree more 5150.

    It's something that's not talked about and highlighted often enough but it certainly needs to be in the forefront as so many more of us succumb to this disease. I know there are many here who are mild to moderately affected today but since for many, it seems to be progressive, how about tomorrow? Is that the day you permanently lose more function?

    How many of us know of a few who have not survived this past year? I'm sure each one was just as excited as each of us about the emerging research and anticipating finally some concrete help - concrete help which never came. How utterly and unbearably sad!

    How many more will we lose in the next year? There needs to be a sense of urgency and acknowledgement for those of us who are severely affected and barely hanging on becoming more and more invisible all the time while in essence ... the band plays on.

    Perhaps in addition to a clock which counts up the number of days since the Science paper was officially released, we should have a counter tabulating the body count of those dying waiting for treatment.
  12. 5150

    5150 Senior Member

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    it's difficult for me to keep in mind that not all are as sick, (we were the ones who once were not so bad off, too).

    it's the "progressive" conditions that develop into final killers, and many people just aren't there yet.

    thank you Shannah, for your thoughtful response. when you said _body count_ it sure got my attention. i hope nobody panics.
  13. free at last

    free at last Senior Member

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    Hold on a sec dont ARVs work mostly on blood infection ? yet we are told that copies of the virus are low in the blood any way, so how would ARVs help much if they dont actually reach where the virus is hiding, like the brain for example, or muscle tissue, im with what Cort said, or the fact the immune system becomes tricked or trained, or confused in fighting the virus, a sort of auto immune response ( possibly after a series of other viral assaults ) could be many different ones ( same effect ) overactive immune system attacking low copy numbers in the tissues. ARVs might be useless ? unless they reach those tissues ?

    where as, heathly xmrv peoples immune systems have not become sensetized to the virus yet, possibly needing other viral attacks to start the sensetizing process off.

    If true, if one could teach the immune system to start ignoring the low copy numbers of xmrv or de sensetizing it, then symptoms may improve. if theres any relationship to xmrv and sickness in ME.CFS then i belive that has happened to me, but it took 5 years of poor health and another 5 years of up and down health, then another 5 years of even less immune response to get closer to those healthy xmrv carriers that i was before i got sick.

    No one in my family has ever had ME/CFS type illness. yet my partner must be almost certainly xmrv positive as we have been together for 21 years, and my illness started 16 years ago. why has she not succomed to this illness. it must in some way relate to a variable immune response in different people and possibly for different reasons.

    Otherwise this would not happen, and we wouldnt get healthy xmrv carriers, yet we do. Thats my theory, but really im just guessing based on my own experiances. Thats all i can do, apologies if im off on this ?

    One last thing how come my partner hasnt delevoped cancer after having no immune responses that i can tell off, ( would they show though ? ) thats something i feel worried about developing cancer, just recently ive started getting pains in my stomach just under my ribcage on the left, i can pin point the area, it keeps coming and going, but isnt so far after weeks, actually going.

    Hey hope its a ulcer, thats sounds better ?
    My muscles and joints, pains in the back of the kneck and blurry vision are all getting slowly worse, if the ME didnt kill me. why i do feel like i aint as lucky as what i should feel compared to still being extremly sick.
  14. Jemal

    Jemal Senior Member

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    Desensitizing is very tricky I think as an immune reaction isn't easily altered. Most autoimmune disease cannot be cured and most of the time patients still suffer from (sometimes horrible) symptoms. There will be more relief for us though, when we travel down this path. At least more relief then we are getting now.

    I am wondering about this as well. My own partner is still very healthy after all those years with me. We have seen a study suggest that about 50% of family members of CFS patients are infected with XMRV, I think? So that would mean the virus is spreading in families, just not causing CFS (much).

    There must be some kind of trigger, coinfection or other factor involved. Also, if most of our symptoms are caused by our immune system waging a war on XMRV, I am still wondering if the reaction is necessary or not. If XMRV is a harmless virus, then the immune system is overreacting. But it could also be our immune system is protecting us from greater harm. I have seen it suggested that people with XMRV but without CFS might be at a greater risk to get cancer for example. This is all a hypothesis, however.

    We do know from other viruses that they tend to cause symptoms in only a smaller percentage of people. XMRV might also cause symptoms in about 5% of the infected.

    There's many possibilities. XMRV could be a harmless virus and not cause cancer. If it works correctly, you wouldn't even notice that it has stopped cancer from growing. You only start noticing it, when it has failed to do so. It could also take decades, before a situation exists that causes cancer to thrive. The immune system has many layers and it could take a long time, before a virus like XMRV impacts its function.

    I had that kind of pain on the right side for a few months. It's gone now though. I was starting to worry as well that there was something there...
  15. lancelot

    lancelot Senior Member

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    If XMRV is found to cause CFS or another human disease, i believe it will only affect a small number of those infected like HTLV with a long incubation period(decades) and unlike HIV's large infection rate and shorter incubation period.
  16. CBS

    CBS Senior Member

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    Hi Alex,

    Not seeing Chia but someone who closely follows his protocol in some patients. Chia may test tissue from the colon but enteroviruses can definitely be found in the lining of the stomach and in the duodenum. Near the stomach's lower sphincter is an area called the antrum. The antrum is often red/inflamed and immunohistochemistry (IHC - only available in a very small number of research labs) tissue can show the presence of active enterovirus infection. Tissue from the duodenum can also show enterovirus infection.

    As for Dr. Deckofff's day in the airport, one possibility that I have not seen discussed is that the ARV's could be doing their thing but the disease process has already caused systemic damage that is not simply going to disappear once the original infection is brought under control. Look at all the success we've had in treating polio and now post-polio syndrome is a huge issue in "former" polio patients. I simply don't think we're all getting a "get out of jail free card" regardless of what we learn about XMRV/MLVs.


    .
  17. free at last

    free at last Senior Member

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    That seems about right, whatever the reason HTLV only affects a small percentage of people, if the experts know those reasons couldnt they apply that thinking to xmrv ? as also being for similar reasons
  18. Jemal

    Jemal Senior Member

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    I had never heard of post-polio syndrome before. I read up on it and it sounds a bit like CFS if you ask me...

    I am not so sure HTLV is really causing symptoms in only a few people. It might look like that, but I think our understanding of this virus is limited. It certainly hasn't been studied as much as HIV for example. A virus might cause problems 30 to 50 years later and it would be extremely difficult to make a connection between the virus and the symptoms. I do think XMRV should be compared with HTLV rather than HIV.
  19. moving3

    moving3

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    For me the cocktail of retro virals worked very good (Intelence, Prezista,Norvir,Isentress,) but from the moment I dropped Intellence, the rest of the coctail stopped doing there work on my symptoms; If I took only Intellence, it doesn 't work
    It seems to work only as a specific cocktail in my case. Even when i took 4 times lesser doses, it still worked fine.
    Lucas
  20. Recovery Soon

    Recovery Soon Senior Member

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    Is there actually evidence that people are dying from CFS? I don't mean suicides, but disease-related deaths that can be proven?

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