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XMRV Link Gives False Hope for CFS

Discussion in 'XMRV Testing, Treatment and Transmission' started by Fejal, Sep 11, 2010.

  1. Fejal

    Fejal *****

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    Mij,

    450 mg of tumeric with 50 mg of standardized extract to 95% curcumineroids taken twice daily 12 hours apart. Recommend preloading with standardized milk thistle first as the effect on fatigue and sleep quality is profound while doing the Marshall Protocol.

    Diesel,

    > You should publish it through a journal, great science by the way.

    Thanks! Having never completed a formal masters in science yet (I have a professional alternative health degree) I’ve never been published and am a little shy to do it-also I’m still in treatment with the CFS so have to deal with the brain fog and fatigue but should I make a good recovery using this protocol I’ll discuss publishing something with my MD.

    Daffodil,

    My vit 1,25D was 63 pg/ml which exceeds the high normal range. Marshall has criticized vit D testing methods at some labs for allowing it to degrade. He recommends using Quest labs (that’s the one I used). I’d say try a therapeutic probe by avoiding vitamin D for a few weeks with no food intake, supplements and light exposure, try to turmeric experiment in the other thread and see if it provokes your symptoms. If so then that’s a positive and indicates you would benefit from treatment.

    EnergyOL,

    > I think it is a bit odd how long some of the moderators seem to remain on the protocol. 2-3 years or more sometimes. This suggests it is not curative.

    I agree and have criticized the existing treatment here for not addressing all of the blocked pathways causing incomplete and slow treatment tolerance.

    > Also couldn't the L-form bacteria merely be infections secondary to XMRV/MLV induced immunodeficiency?

    If that were true then we should see good responses to antivirals which doesn’t happen.


    > If these L-forms were solely the cause of CFS wouldn't they get more consistent results with the mycoplasma testing? (this is L-form bacteria). Wouldn't they find like a good 90% of CFS people all have mycoplasma? Surely?

    No, there are many other species. It just depends on what was around at the time. Also, once one bug suppresses the immune system then others can infect so it would be progressive.

    > Please can you put me in touch with anybody out there who once had CFS who has now finished the Marshall Protocol and is now SIGNIFICANTLY better, and remains better without having to adhere any longer to any of the MP - i.e. no longer any sunlight avodiance, vitamin d avoidance, chronic benicar and antibiotic consumption?

    As I said before, I don’t think they are lying but I do think they make many mistakes due to being out of their field. I do think it is partially correct but needs to have additional supplements to work rapidly and completely. I would not recommend anyone do the MP without these modifications. If anyone is interested they can email http://www.chronicillnessrecovery.org/ who I have sent the protocol (ask for the BALI protocol by Allen Botnick DC).

    Jenbooks,

    The reason I take curcumin is because it unblocks the PI-3 pathway related to histamine in mast cells improving immune function.(Adori, M 2010) When I took this it gave a positive immunoprovocative response which is interpreted as showing effectiveness in bacterial killing. Because the minocycline is also immunosuppressing I take them together but have discerned that the silymarin is a required protectant and must be dose 1 hour prior to minimize curcumin’s NF-kB blocking. If another agent was available I would stop it immediately. Given that I don't have any other symptoms of estrogen overdose and avoid xenoestrogen sources I should be alright with it. Hopefully the antibiotics can

    Which species of bacteria are stimulated by estrogen? Do they have L forms? Silymarin definitely helps with the detox. I suspect what is happening is that the turmeric is exerting an antibacterial effect, releasing toxins as the mast cells degrade and the liver has to detox this or they inflame the system, causing nitric oxide overload and impairing mitochondrial energy synthesis which we feel as the symptoms of inflammatation and fatigue. If bacteria were strengthening then symptoms would improve, not needing sylymarin (milk thistle) and this doesn't happen to me. Actually milk thistle was the first supplement I tested and without turmeric it doubled my treatment rate by halving the cycle duration for the bacterial kill as reflected by low grade fever appearance and resolution. This was because it unblocked the NF-kB pathway.

    Ukx,

    I hope that the MP evolves, however Trevor Marshall is really hotheaded and not open to research. I think at the point he thinks he has a working treatment. Interesting information on the origins of the antibiotics. I wasn’t aware of that. I agree that he has no right to a modified protocol which is why I recommend the BALI protocol which is more accurate.

    Also be aware that Faherty's article on the extra pathways wasn't published until 2008. The MP originated in 2003 and Trevor Marshall has a strong bias against all supplements.

    Anyway, don’t assume this won’t work Ukx. It fits the data quite well and is worth a shot. What has anyone got to lose?

    Xrayspex,

    It is very likely there are a few different diseases under the same moniker CFS. The only way I know to tell if someone is L form compromised is by a therapeutic challenge and watching for inflammatory immunopathological symptoms and confirming this with increased vitamin 1,25D.

    This infection doesn’t lower natural killer cells so you appear to have another disease. Dysbiosis is easy to treat using supplementation so just find a competent to guide you through it and hopefully it will help. As for calcium it requires stomach acidity so consider whether you may be taking antiacids that are blocking the absorption. Calcium is a balance so avoid things that drain it like excess animal protein (which should be eaten in excess) and phosphates in diet soda. Everyone needs to eat green leafy vegetables which are high in calcium but given the low soil levels I always recommend a good chelated multimineral (I take Country Life Total Mins Iron-Free) at least in a half dose daily because that covers all the bases. Magnesium deficiency will also cause you to be deficient.

    Everyone, as a patient myself with CFS I am very critical of treatments. I just want to craft an effective treatment and get well myself. I am personally disabled with CFS and really need to recover. I do not profit financially by the BALI protocol I recommend. In reviewing the four supplements I endorse I had to screen 15 compounds and rejected most of them due to adverse effects.
     
  2. Daffodil

    Daffodil Senior Member

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    which infection does not lower Nk cells? CFS certainly does.

    xray....if your elastase was high, what makes you say you have no inflammation?
     
  3. Fejal

    Fejal *****

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    Daff,

    No it doesn't, it just lowers their activity.(Levine, 19998) This supports the pathway inhibition theory. L forms parasitize them by blocking their apoptosis and using some of their energy resources. This apparently doesn't kill them so they complete their normal life cycle but can't effectively mount the normal immune response, explaining why CFS patients can't get normal fevers.
     
  4. xrayspex

    xrayspex Senior Member

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    u.s.a.
    hey daffodil
    yea, I thought I have read numerous places that low natural killer cells might be one of the biomarkers with cfs

    well since I don't know much about all those acronyms and what they mean (rnase etc) I just took my docs word for it when he said it was odd I didnt have inflammation, I assumed he was going by the interleukins which were the one normal thing on there. oh, my igm on there wasnt bad either, just the iga was off, the ones vip looked at then.
    so high elastase=inflammation, geez I should have googled it eh or something, I wonder why my doc said that. He is not a cfs guy though but just open somewhat to trying to help figure it out, he's in a mainstream institution and oveworked with stupid managed care stuff and big case load.

    and fejal I don't know what the bottom line is with whats causing my issues but an xmrv result would be interesting.
     
  5. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi, Marshall is an expert on occult bacterial infections, but the expert on NO and mitochondrial impairment is Martin L Pall. If you think NO is a major factor, you have to take Marty's theory into account. Personally, I think most of these things are just different aspects of a very very complicated disease, and we don't have anything like all the answers yet. I think ME or CFS are much more complicated than type 2 diabetes, and we haven't been able to fully understand type 2 diabetes after nearly a century of research. This is underscored by the observation that type 2 diabetes is a frequent symptom or complication of CFS.

    The is also the question, if what I have heard is correct (supposedly from Cheney), of just what it means that nearly all chronic Lyme patients are xmrv positive?

    bye
    Alex
     
  6. Fejal

    Fejal *****

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    Alex,

    Next time please be considerate and post links. I found information on his methods and study here.

    http://chronicfatigue.about.com/od/treatmentprotocols/a/Pall_Protocol.htm
    http://www.meresearch.org.uk/research/projects/oxidative_stress.html

    I'm in agreement with him. He totally supports what I'm saying about inflammation triggering excess nitric oxide. The only thing that needs to be done is figure out what is causing the inflammation in each specific subgroup of patients. If the MDs do that then they will have a good chance of curing this disease.
     
  7. ixchelkali

    ixchelkali Senior Member

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    SOME researchers have said that. Other researchers, including some well-regarded retrovirologists, disagree. Most that I've heard comment think that it's too early to judge, because we don't have enough data.

    This is a chicken-or-the-egg question. Do people with ME/CFS have higher levels of XMRV infection because of a lowered immunity, or do they have a lowered immunity because of being infected with a retrovirus? Until we have more data, it's an open question. There are good arguments for both points of view. Therefore, at this point I don't find it appropriate to tell others what they "should" do. I think you'll find that many people here have already spent years concentrating on "finding and treating the culprits behind the lowered immunity" and are still sick. If you have found a protocol that works for you, that's good.

    I have been impressed by Dr Martin Pall's theory of the nitric oxide/peroxynitrite cycle in neuroimmune diseases, as discussed in his book Explaining Unexplained Illnesses (http://amzn.com/078902389X). Dr David Bell has summarized this theory in simplified form in his book Cellular Hypoxia and Neuro-Immune Fatigue (http://amzn.com/1595941797). Personally, I think that even if XMRV and/or other gammaretroviruses prove to be the cause of the immune dysfunction in ME/CFS, that damage to the nitric oxide/peroxynitrite cycle may be mechanism for many of the symptoms.

    In any case, whatever the cause of the chronic immune dysregulation, it will cause oxidatitive stress, and all those free radicals are not going to do a body good. So a protocol that emphasizes antioxidants is probably a good idea. It's probably a good idea for anyone with a chronic inflamatory disease of any sort.

    I also think that even if XMRV is an opportunistic infection that's more common in ME/CFS patients because of lowered immunity or genetic predisposition or whatever, having a retroviral infection probably isn't good for you. It's never made sense to me that once the powers-that-be decided that Epstein-Barr or HHV-6 or the others weren't the cause of ME/CFS, they ignored them. It seems to me that even if they are opportunistic infections, you're going to feel better if they are treated. Walking around with a bunch of chronic low-grade infections doesn't make sense to me, even if they aren't the root cause of the illness. With AIDS, they treated the opportunistic infections before they ever discovered HIV (and still do).
     
  8. Fejal

    Fejal *****

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    Prior to starting the original MP I took high doses of anti-oxidants, they were completely ineffective against the disease. However I do see the value of providing some support while treating just to help the body out. I take 2 g of vitamin C per day in four doses to increase glutathione for liver detoxification purposes. But anti-oxidants alone will not make a dent against CFS unless the causes of the inflammation are not elucidated.

    If XMRV is the cause then everyone would be doomed. Luckily the evidence doesn't support that assertion, virologists be damned.
     
  9. jenbooks

    jenbooks Guest

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    Fejal, you ask:

    Which species of bacteria are stimulated by estrogen? Do they have L forms?

    That's a good question. The problem is phenols. Estrogen has phenols and the estrogen receptor, which is fairly universal, has receptors that are very phenol-loving. This is why everything from bpa (bis-PHENOL-A) to arsenic to all kinds of pesticides, plastics, and many modern chemicals, are hormone disrupters. Phenols are both stable and easy to manipulate and are the basis of the modern chemical industry.

    Therefore I suspect that many fungi and bacteria have estrogen receptors. Don't know about virii but it seems that some virii have steroid receptors and hormone receptors and it would make sense. We've all been evolving together for quite a while.

    I avoid estrogenic herbs, and that is a lot of them unfortunately, but I'm very sensitive to hormonal input and react to them. If you've figured out a way to help yourself and handle them that's good.
     
  10. Daffodil

    Daffodil Senior Member

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    fejal...why would everyone be doomed if XMRV is the cause?
     
  11. Fejal

    Fejal *****

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    XMRV incorporates into the DNA. You're stuck with it for life. The only thing that would cure it would be gene therapy and most of us would be dead before that became available.
     
  12. ixchelkali

    ixchelkali Senior Member

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    I think that's an overstatement, and I disagree. Twenty-five years ago they were saying that anyone with HIV was doomed, and that has not proven to be the case. Or perhaps I should just say, define "doomed."


    What "evidence"? Human gammaretroviruses are so newly discovered there is very little evidence one way or the other. Epidemiological studies have not been done, and certainly in vivo studies have not. They don't yet know about its cellular tropism or transmission or potential pathogenisis.
    Ah, yes, well. It sounds as though you may prefer the anecdotal evidence of your own experience. Personally, I'm still interested in seeing what scientific process comes up with in the way of evidence, and I'm not ready to consign the verologists to perdition.
     
  13. Fejal

    Fejal *****

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    The evidence is the clinical response to antibiotics. Symptoms should not change like they do.

    Ok ix you bet on your horse and I'll bet on mine. It takes 8 years for a new drug to get FDA clearance and gene therapy takes 10-20 years. I'm 40 years old and CFS mortality is around 60. So if you're right then there's a good chance it won't help me or other adults.

    Either way, BALI treatment is very fast. According to the projections I should have a good deal of energy back in three months. So I'll know if this approach works. I'm already sleeping much better and my energy has gone from 10% to 25% in just a few weeks.

    So I have a treatment to test and you have a smug feeling of self assurance. Personally I'd take the treatment any day.
     
  14. ixchelkali

    ixchelkali Senior Member

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    There are many diseases that aren't curable but are treatable. Good treatments would be a big improvement for ME/CFS.

    Given a choice, I don't think any of us would prefer that ME/CFS would be caused by a retrovirus. I would prefer that it be caused by something curable, preferably EASILY curable. But my preferences aren't going to change the facts one way or the other. What I want is to know what the facts are, however unpalatable. I'm not going to say "I won't believe it's a retrovirus, because that would be bad news." Maybe that's simply because having an untreatable, incurable illness with no known cause seems worse. But I think it's because my approach is more to say "What is, is. Now how do we deal with it?"
     
  15. illsince1977

    illsince1977 A shadow of my former self

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    Doomed! and damned?????? That seems a little hysterical to me! I've had this for 33 years. It did not start with a viral like illness it started during pregnancy, so I'm assuming that was the low immune function trigger that allowed whatever (maybe XMRV?) to overwhelm my system. Or did it require another viral trigger that I wasn't aware of, like HPV in my case? Who knows?

    I tried the MP. It just made me sicker and sicker. I've treated the viruses I supposedly have like CMV, the bacterial infections like Cpn. the Lyme, the Babesia, etc., ad nauseum! I'm still sick! Many of us have heard about "the" curative protocol (whatever it may be), done it, and we're still sick.

    There are new therapeutics being developed all the time. Microbiology is advancing. Molecular medicine is advancing. I feel as jaded as the next person about Pharma's interest in developing drugs that will make them lots of money because a large population gets prescribed a patented drug for everyday use and we are not that target population. They are also not interested in neutriceuticals because they are unpatentable. However there are lots of small biotech firms who are developing therapeutics for smaller patient populations and would still be very profitable if they hit on the right therapeutic. 33 years and counting, countless protocols, and I am still optimistic that XMRV may be the answer.

    Sorry, Fejal, I have seen too many protocol devotees in my days who are sooooooooooo convinced their way is the way. Devotees who always seem to have the science to back themselves up. Some of them even come back later and recount how their protocol failed them in the end. Only time will tell.

    Obviously I'm not advancing any scientific discussion here, only a philosophical one, but so were you when you said "XMRV gives false hope." Yes, if I test negative I will have to pick up the pieces and look for the next hope. And yes, If I test positive and get on ARVs and they don't work, I'll have to wait for the next therapy to come along. Will I be worse off for it? For a while, yes! But in the long run, probably not. I've done it before, and I will do it again. I will survive. And when I don't, I will donate my body to the study of this disease, and someone sometime will have me to thank for it.
    :victory:
     
  16. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    The following thread has a comment on this topic:

    http://www.forums.aboutmecfs.org/showthread.php?7507-Dr.-Cheney-comments-on-the-XMRV-workshop

    >"Perhaps most interesting of all was what happened with the injection of a bolus of foreign peptides into macaques that had apparently completely cleared the virus from blood. There was a huge reactivation of infectious virus in the blood proving that latent but persistent virus is just below the surface and that XMRV infection cannot be completely cleared from all reservoir sites. The peptide injection mimics an acute infection (? borrelia or the flu), an immunization or even acute mold exposure.

    Translated:

    Certain factors make this virus more likely to be active. These include a) Lyme infections, b) acute infections like the flu, c) vaccines or d) toxic mold exposures.

    Conversely, not having those factors in play would make the virus more likely to get under control.

    It's my understanding that the Marshall Protocol addresses Lyme as well as other infections (bacteria/mycoplasma). Insofar as it does that successfully, it would take one of those "stress factors" off the tendency of the virus to stay active.

    That's just one factor taken away. It might not be enough to get people well all by itself. But it could conceivably help, which may be why some people report good results on the protocol.

    Just last week, I got a nice e-mail from someone who had read my thread ("Using Cheney's Control Points Approach to Address CFS Viruses") in the XMRV section on this board.

    He said that he started using Erik's extreme avoidance approach to control his toxic mold exposures in 2004. He went from being disabled to going back to school and work full-time, and now is an attorney. He said that he has used the Marshall Protocol, and that this has allowed him to reduce the extent to which he needs to be careful about mold exposures.

    But he still has to be careful, or he gets sick again. (Fortunately, like the rest of us, he's found that resuming the extent to which he's careful allows him to regain his health pretty quickly.)

    So I suggest that it's wrong to think of this kind of a treatment as a "cure" for ME/CFS. Clearly it doesn't work that way.

    Thinking of it as a tool in the toolbox makes more sense to me.

    Best, Lisa
     
  17. ixchelkali

    ixchelkali Senior Member

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    I don't think I'm either smug or self-assured about this. I'm more waiting to see. And perhaps I'm optimistic, because I'm not ready to feel doomed if I have a retrovirus. I'm 56 years old, and I still have hope. What I really hope is that one day we won't all be in the position of having to guess about what the causes and treatments of this are.

    I'm glad you have a treatment to try, and I sincerely hope it's successful for you. Anything that can be shown to help one of us is good news for us all. I hope you'll let us know how it goes.
     
  18. SeaShel

    SeaShel Senior Member

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    I am struck by the hubris of this:

    Followed by this:

    Will you substantiate that?

    Shelley
     
  19. illsince1977

    illsince1977 A shadow of my former self

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    Guess I'd better just hang it up then cause I only have 2 1/2 years left to live! ;)
     
  20. Daffodil

    Daffodil Senior Member

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    fejal..i am sorry you think that being on ARV's is being "doomed"...cuz thats what you will eventually end up being on if you have CFS!

    you're right...curing retroviruses won't happen for another 20-30 yrs if we are lucky...but it will happen.
     

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