the devil is in the details

Discussion in 'Fibromyalgia Main Forum' started by gasolo, Oct 13, 2009.

  1. gasolo

    gasolo New Member

    I find it curious that the original article about xmrv published in Science claims a 67% positive pcr rate among a cfs cohort and a 3.7 % among control samples. This was followed by a claim from WPI that 95% of the csf cohort was positive for pcr or antibodies. No report on the number of patients in the control group with positive antibodies. I wonder why this was omitted?

  2. Slayadragon

    Slayadragon New Member

    Hi Gary,

    I was wondering that too.

    I was thinking about you yesterday.

    You're one of the few people I've heard of first-hand who achieved real wellness on Valcyte.

    Do you have any thoughts on that drug in the context of the new info on XMRV?

    How are you doing now?

    Best, Lisa

  3. gasolo

    gasolo New Member

    Thanks b.dip, I would appreciate your help.

    Hi Lisa,
    My cognitive function has improved to 100%. I still suffer from PEM. I'm working full time and just got back from a dive medicine conference in Fiji. I'm also altitude sensitive. My passion for skiing is on hold until these problems are resolved.

    I'm optomistic concerning the xmrv discovery although somewhat concerned about the over enthusiastic language coming out WPI. Time will tell.

  4. Slayadragon

    Slayadragon New Member

    I'm so happy you're still doing so well, Gary.

    I'm increasingly convinced that the Valcyte is the last piece of the puzzle for me. Why it hasn't worked for most people and how it fits in with XMRV is interesting to contemplate.

    How did you feel while you were in Fiji?

    What places at higher altitudes have you been?

    I hope you're back to skiing soon.
  5. gasolo

    gasolo New Member

    Lisa, places like Brice and Park City seem to have a deleterious effect on my cardiovascular system.

    SCUBA diving, dry or humid climates or different building seem to have no obvious deleterious effects.

    Very wet and humid in Fiji. No negative effects.

    Thanks for the kind words,

  6. Slayadragon

    Slayadragon New Member

    There's a whole Yahoo board dedicated to the idea that different locations have different effects.

    Apparently a number of CFS patients have gotten almost full recoveries just by moving to the Caribbean (though reports say that it may be a bit worse than in the past).

    Very interesting to hear about the scuba diving. That makes sense in my view of the world, of course.

    I do very badly in ski resorts these days. In fact, since starting the antivirals, I can go just about anywhere these days (indoors and out) and do reasonably okay _except_ ski resorts. Telluride, Lake Tahoe and northern New Mexico treated me very badly.

    Moab and Salt Lake City were problematic too, actually. A lot other cities and most recreational ares have been much better.

    I'm thinking about trying southern Utah. But now I'm starting to be suspicious of Utah in general.

    Other high altitudes have been fine.

    Dry/humid is not predictive at all.

    The town of Pagosa Springs was only slightly bothersome. However, I didn't get to the actual skiing part, which was about 8 miles from town. It would be interesting to hear how you would do there, though things in the world seem to be changing fast.

    And if you ever go to an altitude that's not associated with a ski resort, that would be interesting to hear about too.

    Do the cardiovascular problems feel like the heart is being pierced or getting palpitations, or that there's some kind of squeezing in your chest area in general?

    That's the distinguishing symptom that I got in Lake Tahoe and Telluride, and very slightly in Moab. I've not gotten it anywhere else.

    Telluride and Lake Tahoe also gave me fierce headaches. I absolutely never get headaches otherwise.

    You've not been to Texas or the Bay Area since becoming well, have you?

    As you go more places, I really would like to hear how you do.

    Where do you live?

    [This Message was Edited on 10/13/2009]
  7. gasolo

    gasolo New Member

    I live in Los Angeles county.

    I have experienced palpatations and occational episodes of mild shortness of breath. No evidence of ischemic heart disease (While in Fiji, specifically Bequa Island, I carried an injuried 150lb woman 250 yards without negative cardiovascular problems. A poor mans treadmill test.)

    [This Message was Edited on 10/13/2009]
    [This Message was Edited on 10/13/2009]
  8. Slayadragon

    Slayadragon New Member


    Are there other times that you've been able to exercise without getting PEM?

    Do you ever get those heart symptoms when you're not at altitude?[This Message was Edited on 10/13/2009]
  9. gasolo

    gasolo New Member

    Knowing the limits of how much execise will cause a crash is very difficult. At times I can lift relatively heavy weights and run while at other times lesser exercise causes a crash(PEM). I never get any biofeedback until I've ready exceeded my limit. The only exercise I do without any worries is walking. Generally 4 miles each day.

    [This Message was Edited on 10/13/2009]
  10. Slayadragon

    Slayadragon New Member

    If you're lifting weights at the same place and running the same route, then the only thing I can think of that might be making a difference is the weather.

    Specifically, I feel much worse (and wholly unable to exercise) when the barometer drops and/or the skies fill with clouds. Especially when rain is expected. If it actually does rain, I generally feel a little better after it starts.

    Even in a metropolitan area that usually feels okay to me, I can get moderate levels of those heart symptoms and headaches on days when storms are expected. Sometimes I get static shocks too.

    Have you ever gotten those cardiovascular symptoms when not at ski resorts? It would be interesting to consider weather and location if so.

    I also sometimes feel a little worse when the wind blows from the direction of a place that's more populated than where I'm at.

    I truly cannot tell you how happy I am to hear that you've maintained the gains you made as a result of the Valcyte. That's really encouraging.

    I'm having a far easier time on the drug when I'm in a place that feels good to me. I've started and stopped a couple of times because it doesn't seem prudent to push it. So I'm on my way to Death Valley, which is the best place I've found. Hopefully it will be a lot easier there.

    I'm going to hazard a guess that if you visited Death Valley or the most desolate area of the San Joaquim Valley (e.g. west of Los Banos), you would be able to run or lift without problem until your muscles gave out. Let me know if you ever try it.

    Even climbing Mt. Whitney might be doable, if you want to test whether altitude is really your problem. I'd love to see that one.

    I'm of the impression that you took the Valcyte according to Montoya's protocol (900 mg for six months). Have you pulsed it or taken any other antivirals since then? I'm inclined to do what you did.

    What I'm finding is that during stretches of time that I'm taking the drug (especially in cities), I feel pretty crummy. But if I take a little break, after three days I feel much better than before, with almost no limitations on what I can do or where I can go. (Except for exercising in metropolitan areas when the barometer drops!) So I'm optimistic for the long-term.

    Are you still living in the house and in the same workplace that you were when you first got sick? If not, when did you make the change?

    [This Message was Edited on 10/13/2009]
  11. jasminetee

    jasminetee Member

    gasolo, I have the same question. First, I'm too fogged to try to look right now but exactly what kind of testing did the WPI do when it found the first number, 67% and what kind did they do when they found the second number, 95%?

    And did they do these same kinds of tests on the Healthy Controls?

    I called the NCF today and they said that anybody can make the number jump that high for a retrovirus when they do the 2nd kind of testing but I can't recall the kind of testing they said it was.

    If that's true then we need to know. People who get tested could possibly lose their Disability by testing negative or there could be a lot of False Postitives. We need to find this out.

    [This Message was Edited on 10/13/2009]
  12. denis321

    denis321 New Member

    The 95% figure refers to antibodies and not PCR. Second study is not published yet as I understand.

    The question comes down once more to whether the tests (or what level of results) mean mere exposure vs. active infection -- the same question that has been haunting us in regards to herpes viruses.

    WPI should not have commented on the antibody study when results are not out yet.
  13. jasminetee

    jasminetee Member

    Thank you! That's what it was. She said anybody can make the numbers jump that high when you look for antibodies.

    So in your opinion -- or anyone else who understands this -- since the way they got the numbers up that high was by looking only for antibodies the second time, would that still mean that XMRV causes CFS? And I know they're not claiming it means that. I realize that. But they seem unsure, like that it might, and I'm wondering, should they be unsure or sure given these circumstances?

    It's interesting that you think the WPI should not have commented yet. Does that mean that they are just guessing at that 95% number?

    Btw, what does your title mean?

    [This Message was Edited on 10/13/2009]
  14. gasolo

    gasolo New Member


    I experienced palpitation while at Brice Canyon during the summer.

    I haven't noticed if weather makes a difference.

    I was on valcyte for 7 months with the Montoya protocol. I haven't tried other antvirals. Valcyte was very rough on me.

    I live near the ocean and the same house for the past 20 years.


    I guessing around 7000 feet. I haven't worked out what the partial pressure of oxygen is at that altitude. I suspect that may be a factor.

    What do you mean by "Don't try to pull a Dessin on us"?


    I believe the 67% represents the pcr positive patients from the cfs group and the 95% the combination of pcr and/or antibody positive test in this same group.

  15. jasminetee

    jasminetee Member

    Thank you Gary. That's what Denis just said in the "Did I Just Read What I thought I did" thread.

    I always felt better in higher altitude with mild CFS. Like I could run forever compared to sea level. I noticed this up in Lake Tahoe when my CFS was mild.


    [This Message was Edited on 10/19/2009]
  16. siebertesther

    siebertesther New Member

    Hi Gasolo,

    I've read that the 67% rate during the actual study was attained with one test. This test was refined and when they tested more people after the study was complete, they found almost 98% of chronic fatigue patients tested positive. I don't know the number of healthy people used as controls.

    They still have to refer to the 67% regarding the study but now they're adding the higher number for post study testing. I will wait till they release the new test before getting tested.

  17. denis321

    denis321 New Member

    It's the reverse of Gasolo's saying and used just as often.

    Le bon Dieu est dans le detail" (the good God is in the detail)

    I want to see more results published -- otherwise it's just a lot of speculation on my part.

    They're not guessing at the "95%" - it's what they got but to say that and not say anything about controls or details about the people they got it from just fans controversy.

    CFS is already a "controversial" illness so the PR people need to get it right.
  18. gasolo

    gasolo New Member

    I don't seem to have the problem while flying, eventhough as you claim the cabin is pressurized to 7000 feet. Possibly the difference has to do with the level of exertion at that altitude. I use to live in Colorado and hike over 14,000 foot peaks without difficulty. Since I developed this disease, it is no longer possible.

  19. Slayadragon

    Slayadragon New Member

    devil is in the details

    My first thought when I heard that 67% number for the epidemic groups is that the virus wasn’t causal.

    Certainly you could say that only some of the sporadic cases were “classic CFS,” but it’s harder to make that argument for the epidemic ones (which seemed homogeneous in a most other respects).

    The 95% number made me much more convinced that the virus was causal. I suspect that’s why they released it.

    It would be _really_ interesting to know the percentage of the general population that has the antibodies.

    That would give a good sense of whether it’s a virus that is present in a high percentage of the population (and thus just not kept in check well by CFS sufferers’ systems) or is a more fundamental cause of the disease.
    ?If the antibodies are present in a lot of people that are negative for pcr, that would suggest that there is some other important cause at work. Figuring out just what that cause might be would be interesting.

    Even if the pcr for the general population is low, that doesn’t rule out the possibility of one or more other important causes. It seems that (unlike HIV/AIDS), CFS is not especially contagious even amongst intimates. That must mean that there’s _something_ else at work that’s protecting some people and/or harming other people in their susceptibility to the virus.

    What that is remains unclear.

    I never was sensitive to altitude up to about 8000 feet throughout my illness. And in Telluride (9000 feet) a single session in a hyperbaric chamber was enough to stop the altitude sickness that I had at that level in its tracks.

    However, the places that used to go at altitude (Aspen and Telluride) used to be exceptionally good in terms of the very bad outdoor toxin (whatever that is) that bothers me now. Unfortunately Telluride became horrible just over this past year, and I suffered a lot of symptoms that I previously would have attributed to altitude sickness as a result of exposures to whatever that stuff in the air is that bothers me so much. ??I’m absolutely certain that altitude in itself has a big effect on some CFS sufferers too though. This disease is complex!

    I once heard something to the idea that altitude increases are linear in effects on people up until about 5000 feet and exponential after that. So the idea that most people would be fine until 5000/7000 feet and then have problems seems reasonable. It also seems consistent in terms of my observations of the % of people in general who have problems in Aspen (7500 feet), Snowmass Village (8500 feet) and Telluride (9000-9500 feet).

    I feel really good when I’m right on the ocean, regardless of where I am.

    I recall your having a really hard time on Valcyte, Gary. Figuring out why it ultimately had a good effect on you when it didn’t on so many others would give a lot of insight into what some of those other causes (insofar as they do exist) might be.

    I wonder if Dr. Montoya or Dr. Lerner has any thoughts.

    RunningAntelope presented me with some nifty info related to why I might have an easier time with Valcyte in super-good areas with regard to toxic mold. All of the following have some solid evidence behind them.

    Retrovirus + Satratoxins (stachybotrys) = decreased glutathione
    Decreased Glutathione = easier for HHV6a and XMRV to grow
    Retrovirus - Satratoxins = Higher glutathione.
    Higher glutathione = HHV6a is easier to kill.

    Why simply removing the mold thus doesn’t cause HHV6a to be killed automatically (as I get a feeling that XMRV might be) is a good question. One of my doctors once told me that HHV6a in itself can lower NKC activity. And of course, without functional NKC’s, herpes viruses are sticky (since they prevent cells from expressing the MHC that would allow B-cells and T-cells to find and kill the viruses). Drive the viruses out of the cells with Valcyte, and the B-cells and T-cells can find and kill them. But this would possibly be a lot easier if glutathione is abundant.

    So we’ll see how well I do if I just stay in a pristine area and take the drug. If that strategy works, that might be something that others who decide to try the drug might consider doing too.

    Interesting that you mention Lake Tahoe in particular, Tee. Erik states that Lake Tahoe actually used to be superb in general for him with just little patches of “badness” (his word) that would knock his socks off. His scrupulously avoiding those little spots allowed him to remain really well. Recently the whole area has gotten so bad for him that he had to move to Reno and rarely visits there. What year did you used to feel good there? Where were you staying and running?

    I’m absolutely not trying to force-fit whatever data points I get into a theory and then argue that it’s valid though! Just looking for more information and thinking “out loud.”