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Dr. Jay Levy found no XMRV in my blood

Discussion in 'XMRV Testing, Treatment and Transmission' started by mojoey, Nov 22, 2010.

  1. omerbasket

    omerbasket Senior Member

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    I think it might be a question of what procedures and tests did he use. First of all, if he used only one PCR test, than if you see the numbers of the WPI's study when they used only PCR - you get 7% of XMRV positives, when the real numbers are about 80%-90% (this is about 57 patients - not all of the patients). Second of all - it might be a question of collection and proccesing. Dr. Mikovits have talked about the blood working group discovering that it is a crucial part of the testing. I guess that it might cause a scientist to not be able to find XMRV even if the person who has beewn checked do have XMRV in the peripheral blood.

    Dr. Levy might be a well respected virologist/retrovirologist, but XMRV is a new virus and the people who know the most about it right now are people such as Dr. Mikovits, the Ruscettis, Dr. Silveman, Dr. Klein, Dr. Singh etc., and probably not yet Dr. Levy.
  2. George

    George waitin' fer rabbits

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    It's interesting, Cort, that it took so long to culture your blood but that it did grow virus. As if the virus is there but latent. It's also interesting that Dr. Hansen found 8 of 10 currently ill patients with XMRV positive blood and only 3 of 10 who considered themselves recovered to have the virus. This would argue for causality. If an active, easily (relative term here, grins) found virus is found in those whom are most ill and latent, very hard to find and culture virus is found in those who are in better shape then the viral load and the latency of the virus speaks directly to the severity of the patient.

    That's pretty cool if you ask me. The next thing to look at would be what get's fixed with what treatment. I've heard patients who have taken Ampligen talk about getting cognitive function back to about 90% and reducing overall symptoms by 80 to 90% but, it seems they do not regain the stamina or the ability to get up and go to anywhere near pre-illness levels. (could totally be wrong on that so anyone who has done the Ampligen please chime in if so.) I haven't heard from Dr. Deckoff-Jones on if the cognitive issue's are better for her and her daughter, does anyone know? But she seems to be somewhat better in the stamina department. So for now it looks like either or, or a combination of both my get us mostly up and running but not at pre-illness levels. It also looks like for now that we are stuck with the virus and will always have to live with it's effects as life moves on.

    No magic bullets, darn!
  3. LaurelW

    LaurelW Senior Member

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    That's exactly what happened to me, George, on the levels you said, but I still got PEM if I wasn't careful. I had a clear 3-day recovery time then. I went from a KPS of 60 up to 80 after Ampligen. I could go for hour-long walks 3x a week as long as I kept my heart rate below my AT and completed the majority of my college degree.

    I relapsed last year and am now a 50 KPS and don't think I ever get over PEM, just from doing basic daily activities. I have to use a wheelchair to go shopping, which I never had to do before. One of these days I'm going to wear my heart rate monitor all day and try to obey it and see what happens.

    Magic bullets would be perfectly hunky-dory with me.:angel:
  4. George

    George waitin' fer rabbits

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    Laurel (I love that name) how long after you were off the Ampligen did you take the nose dive. Was it gradual or sudden? Did you have a viral trigger again?

    'cause I'm wondering what we will all need to do in order to keep the virus in check once ya get it in check.
  5. LaurelW

    LaurelW Senior Member

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    Thanks, George! Now I'm truly resting on my Laurels. :sofa::D

    I was well for 4.5 years after going off Ampligen. I think I would still be well, but I had a series of really, really stressful events (some voluntary and some not). I think in the future, when I get better again, I will make sure to build rest into my schedule no matter what.:In bed:

    The nose dive was pretty sudden (about two months), with no viral onset--it was after a strenuous 6-week study abroad trip and not immediately taking to my bed afterwards. (Can we spell C-L-U-E-L-E-S-S?):D

    And yes, I'm XMRV positive.
  6. George

    George waitin' fer rabbits

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    Have you been tested for XMRV Laurel? (and have I just totally forgotten because my brain only holds about half of what I read, duhhhh)
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    If I had the money for Ampligen, not sure I would use it ("moderately" affected here), I just think it would be torture to be so functional and then lose it when you go off the drug!

    Just my thoughts.

    GG
  8. George

    George waitin' fer rabbits

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    I don't know GG, if Ampligen get's approved by the FDA the cost will likely go down a little in the begining and lot later on, and if it got me working agian and on an insurance plan then the cost may be very reasonalble. So if it was only say $400 per month would ya do it then? I think the problem comes with haveing to be on it forever, but then it's the same for anti-retrovirals, and the cost would be about the same most likely, especially because they will need to tailor the anti-retroviral for the protease inhibitor part. So ya got's ta figure we will be looking at around $400 a month for a ARV regiment. But we may not need to be on it forever like our HIV brethren, Cort has a lot of functionality and it looks like he's managed to get his viral load down. So if we get our viral loads down with either ARV's or Ampligen or both and then watch our lifestyles we should be o.k. and if we do get into a trigger situation then we go back to the doctor and get a cocktail for a while and get our selves back on the wagon so to speak.

    I do agree that an ARV cocktail would be easier to take than IV Ampligen but heck I'd take either at this point. (big grins)
  9. Cort

    Cort Phoenix Rising Founder

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    That's pretty good though - 4 1/2 years of improved health..... but now back in wheelchair (ouch!) It's such an amazing illness - I just think if researchers would read some of these posts they would be all over it.....Any chances to get back on Ampligen?
  10. dsdmom

    dsdmom Senior Member

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    Laurel,
    Do you know if anybody who goes on Ampligen is able to do aerobic activity? I'm confused because in previous posts you have talked about how you considered yourself 'normal.' I guess it was my mistake in assuming that 'normal' meant 100%. Maybe it's a difference in what people did before they were sick - I was super active so 'normal' to me means being able to do aerobic activity and I'm just trying to gain a more clear perspective on Ampligen. Out of curiosity, are you aware of others on Ampligen who did return to more normal than 80%?
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    "So if it was only say $400 per month would ya do it then?"

    Depends upon what the costs would be for all other supplements and meds that I need! $400 out of pocket every month, so nearly 5K per year for 1 med., wow!

    GG
  12. LaurelW

    LaurelW Senior Member

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    Yeah, I guess I should qualify that. To me, "normal" meant being able to have a life instead of laying in bed all the time, exhausted and achy. To me it meant traveling a lot and taking university classes. I even did a bunch of hiking at Arches N.P. I was never able to do aerobic activity, though, and I don't know anyone else who could either. But my energy levels were way up, my achy muscles went away for years, and cognitively I'd say I was doing pretty good considering my degree is in Japanese. (Could I have picked something harder, do you think, maybe organic chemistry? Or perhaps pathology would have been a better choice!) :D

    I don't think I could have held down a full-time job, but maybe I could have done part-time work. I went to a number of conferences, and was pretty tired if I went all day for several days in a row. But it was manageable. How I feel right now is hardly manageable since I get constant PEM from just cooking, bathing and eating. Kind of hard to cut those out.:headache:

    Anyway, Dr. Bateman is considering starting up the AMP-511 again, and I'm thinking about it....but I don't know. It's a LOT of money. And I'm wondering if that will disqualify me for future clinical trials. But how long am I willing to wait for them, being in pain every single day? No easy answers here. At least I'm fortunate to live in one of the cities where clinical trials can happen and have the choice.
  13. George

    George waitin' fer rabbits

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    I think both of you are raising really good points about the future of ME/CFS patients.

    In the area of costs here is a blurb from May of 2009 regarding HIV drugs from this HIV/AIDS web site (read more)

    So looking at the HIV costs we may have to endure something similar if XMRV is the culprit. The good news could be that "lifetime" may not be necessary.

    The other problem that we most likely face and that nearly all people with a severe illness face is that we don't get to "go back" to the way we were in terms of health. Damage has been done and 80% may be a good target to get back to for most of us.

    Some tough realities, but it could be worse right? We could get left to the CBT and GET crowd. (grins)
  14. LaurelW

    LaurelW Senior Member

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    What about health insurance? Are the costs you are quoting for people who are uninsured? I wonder how the new health care laws will fit into this.
  15. urbantravels

    urbantravels disjecta membra

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    Costs are costs, whether you pay them or the insurer pays them.

    I can think of one extremely important way the new health care law will affect our lives - in 2014 (assuming no gutting of the law takes place between now and then) insurers will no longer be able to refuse coverage or apply discriminatory pricing to people with pre-existing conditions. So we will be able to buy health insurance on the open market just like healthy people.
  16. August59

    August59 Daughters High School Graduation

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    I also believe "Lifetime Maximum" on benefits will no longer be allowed after 2014 (unless it has already been terminated).
  17. George

    George waitin' fer rabbits

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    Hey Laurel,
    According to what I've been reading. RAW costs or the cost's without insurance run about $15,000 per year for drugs and around $5,000 for additional testing and doctor visits. This is without insurance.

    Insurance carriers however don't like to cover the costs on the drugs because they change so often, in addition most of the new drugs that come out of the labs have patents that run 7 to 20 years and can cost up to $1,000 per 30 DAY supply. (GULP) So that's why the high cost's on a monthly basis. Most people start out on the generics like AZT and Tenofier and work up to the more recent drugs over a period of years. Insurance covers most of the test's including the CD4/CD8 count that is recommended 4 times per year but the coverage varies from 80 to 90% so there is some cost to the patient.

    I guess that's why Hemisphere BioPharma is comfortable with charging $15,000 a year for their drug. It's inline with cost for drugs that treat similar illness. Add in the costs of doctors visits and assundry and you get about $20,000 a year.
  18. alex3619

    alex3619 Senior Member

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    Hi everyone

    HIV is not a good model for care costs for one very important reason. It is relatively easy to prevent passing HIV on to others. If XMRV is transmissible via saliva, or via means other than sexual contact and blood transfusion, then public risk is huge. Not treating XMRV, not making it available via subsidy, will entail huge public liability, with potential cost blow-outs for private insurers in billions or even trillions of dollars. Sooner or later they will get that, or at least that is my hope.

    Bye,
    Alex
  19. lancelot

    lancelot Senior Member

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    yes, by knowing the cause(XMRV/MLV) we can get to the root and not get confused by everything else not directlly related to the retrovirus or pathophysiology. This is exactly like trying to figure out AIDS without knowing the cause. It wasn't until HIV was identified where we able to figure out that disease. The same will be the case for CFS/ME. All this time we have just been seeing the symptoms of CFS/ME and going in circles.
  20. free at last

    free at last Senior Member

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    Congrats Cort on our possible target, ( couldnt put it better if i tried ) I agree i kind of assumed flu like onset might make + diagnosis more likely, but then thinking about it logically what about the healthy 4% + ?

    xrayspex if it helps. my flu like onset was just like typical strong flu, 102 temps or higher shivering cold, burning hot the next. aching all over. chest irratation ( actually i think respiratory infection ) very weak. loss of appetite. the usual bad flu feeling but no one ever caught it ?

    Hi Alex
    I assume it isnt the virus that is causing the symptoms but the immune response itself. can anyone say if that is correct ? so surely if that is so, then those with a clear marked antibody reponse surely should be feeling more symptoms not less. can the Virus itself produce symptoms ?

    As i always thought it was the immune response itself that produces the symptoms. In which case as i tended to recover surely my antibody count would go down. Am i not understanding this correctly. if anyone could help me understand this more. Is it also possible that some patients actually have a very gradual constant antibody response, that controls the virus, That also the immune system learns over time, but producing mild symptoms almost daily ?

    But with flare ups occuring when the antibody response becomes stronger. Possibly in response to higher copies of xmrv being detected by the body, and reacted to against them ? Out of my depth. but trying to understand.

    This can be tested, as sicker patients should show more positive anti body testing in higher numbers. in a nutshell no response = less symptoms. but is it possible gradual antibody attack could also produce very mild symptoms. day to day mild symptoms.

    with the occasional stronger symptom flare up equaling a greater antibody attack.Those that are sickest should show the highest responses of all shouldnt they ? Im probably not understanding this correctly. Alex your thoughts would be welcome

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