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Given Dr Lerner and Montoyas findings, why arent a subset of us getting treated now?

Discussion in 'Latest ME/CFS Research' started by snowathlete, Nov 3, 2011.

  1. snowathlete

    snowathlete

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    I dont get it. Given the research that they have done which shows a subset of patients with Herpes viruses, but without co-infections, can be treated with anti-virals and have a good chance of recovery, how come this hasnt become much bigger news, and made available to us patients?

    Here is their paper:

    http://www.dovepress.com/subset-directed-antiviral-treatment-of-142-herpesvirus-patients-with-c-peer-reviewed-article-VAAT


    So, why is that? I know some people are getting treated, but not many really. It doesnt seem to have been taken up widely. Why not??
  2. Nielk

    Nielk

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    I think that many patients are taking some sort of anti-virals. It works for some and not for others. From reading the studuy you posted, it seems that only patients who had herpes virus with NO co-infection, had good results with the anti-virals.
    I think most ME/CFS patients have more than just herpes virus infections. I know I do. I was on anti-virals for years and it didn't help me.
  3. Timaca

    Timaca Senior Member

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    Snowathelete~ Here is a website for more info (if you aren't already aware of it): http://chronicfatigue.stanford.edu/

    Research is currently going on (see #1): http://chronicfatigue.stanford.edu/about/projects.html This may shed more light onto the situation. I am excited to see the results of this research project.

    I am one that seems to have many viruses and some bacterial infections causing problems. Both antivirals and antibiotics have helped me; although I'm not yet well. I do know people who have taken valcyte alone and gotten well, and a friend who has taken both antibiotics and antivirals and gotten much better (we have different pathogens making us sick.)

    I appreciate Dr. Montoya and Dr. Lerner (and Dr. Chia) a great deal.

    Best, Timaca
  4. snowathlete

    snowathlete

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    Yes, i see that alot of people on here are having this treatment, but most either see one of the few experts in the USA or self medicate - which i may do also.

    I understand that it doesnt work if you have co-infections and that some people do have that, but according to the research thats only about 1/3 of people with ME/CFS. the other 2/3 of people with ME/CFS dont have co-infections. Obviously i am hoping that i am one of the latter.

    So given that 2/3 of people could be treated with this, why isnt this treatment/research being verified and the treatment rolled out?
    It doesnt make sense. What am i missing here?
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    if its a bacterial co-infection then its normally treated with abx like doxycyline and probiotics along with an antiviral. the abx should be easier to get then the antiviral.

    good luck
  6. Timaca

    Timaca Senior Member

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    Snowathelete~ What is missing is money. It costs money to do research. Doctors won't treat unless there is research behind the theory and/or treatment. Dr. Montoya is working on the research. I posted one research project in my previous post. Here is some more research: http://cfinitiative.org/research-programs/ Dr. Montoya is participating in this research too. All of this research is happening because of private donations. Without that there would be no research going on.

    If the research proves that there is a link between infections and CFS/ME in a subset of patients then more research is needed to figure out additional information such as treatment, tests, etc.

    Heapsreal~ The antibiotic used needs to be specific for the bacterial pathogen targeted. Doxycycline didn't touch my Cpn. Rifampin did.

    This is a puzzle that needs bright minds, and money to figure out. I am grateful that some doctors are willing to work on it.....and that gives me an idea.....I think I'll post a thread about thanking our doctors! :)

    Best, Timaca
  7. snowathlete

    snowathlete

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    Of course i know that...but usually when there is a significant breakthrough (which in my opinion this was) there are other researchers keen to try replicating it. Even in ME/CFS! I dont see that here. Or at least I havent read anything about it. I know that Lerner and Montoya arent massively prestigious outside of ME/CFS, but they are not nobodies either. I know XMRV was different, and seemed more 'sexy' but even if it had stood up, it wasnt any more significant than this research, and didnt come from anyone more prestigious than Lerner, and Montoya.

    Maybe we would have campaigned more of verification of this work had it not been for XMRV taking our eye off the ball...but does that make it too late?
  8. Timaca

    Timaca Senior Member

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    Snowathlete~ Let's see what the results will be of the Montoya/Lipkin research. That should be illuminating and will be done in the next several months.

    Best, Timaca
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I dont think Dr lerners stuff is classed as a study as it wasnt blinded, its more of a picture of his experience with treating a sub group of cfs patients with antivirals off label. I think it was published more to increase interest in the subject so someone else may llok into more research in this area. I think research into cfs just isnt 'sexy' like other illnesses such as cancer who get research dollars easier, plus i also think that theres a potential career ending move researching cfs which is what has happened in the past which is a shame. Plus , just too much politics as well.

    I think the montoya study will be interesting.

    cheers!!!
  10. Hip

    Hip Senior Member

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    Roadmap for CFS treatment

    What I'd like to see is some type of advice guidelines or "roadmap" drawn up (perhaps on this website) that every person that has CFS can be given.

    This simple roadmap would tell every person with CFS what to do, step by step.

    The roadmap guidelines might start off by telling you which tests to get (for viruses, bacteria, other co-infections, co-mobid diseases like IBS, interstitial cystitis, UTIs, etc), and where best to get these tests in each country. It would also advise on what diseases should be ruled out before settling on CFS diagnosis (like anemia, hypothyroid, hep C, etc).

    Then, depending on the results of your tests, the roadmap would suggest the best course of treatment. So for example, if you have herpes family virus infections but no others, then the advice might be to follow the Montoya anti-herpesvirusl protocol discussed in this thread. If this protocol did not help after X months, then the guidelines might suggest another routes to take, or other tests to take.

    If you had high levels of coxsackievirus B or echovirus antibodies, then you might be advised to follow some of Chia's protocols.

    If you parvovirus B19, you'd be advised to take IVIG medication.

    If you have Chlamydia pneumoniae, then antibiotics would be suggested.

    There wold be a lot of contingencies to the roadmap guidelines, like: "if this fails, then do this; it that fails, then try this other thing".


    I have never seen such a CFS roadmap provided by anyone least of all by the health authorities like the CDC, who should be offering such advice.

    Given the substantial pool of knowledge available from the CFS patients on this forum, I am sure that we could together develop a roadmap like this. Even the the various CFS doctors might show interest in this idea.
    cigana, alexa, iwantsimple and 5 others like this.
  11. Enid

    Enid Senior Member

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    There seems to be so many infections to screen for (bacterial and viral) outside the simple blood test we have here one wonders if the UK will ever catch up. "Isolating" the common ones found and specific tests seems an awfully good idea - a road map.
  12. anciendaze

    anciendaze Senior Member

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    One of the curious aspects of this is that treatment for psychological conditions is also experimental. Very few therapies are significantly effective. Therapists often switch from one strategy to another in a way that would not be tolerated in a clinical trial. Then we have the PACE trial, which actually showed that 12 months of therapy costing thousands of dollars or pounds would leave objective performance of those treated at a level corresponding to patients with heart failure, COPD or recovering from surgery. It is not a question of untried, experimental treatment versus anything effective. At this stage of general ignorance all treatment options are questionable. I might understand a reluctance to spend public moneys on experimental treatments, if it applied to all. I do not understand the unwillingness to allow patients to spend their own money, as I would be willing to do. Are they afraid I might get well?
    taniaaust1 likes this.
  13. globalpilot

    globalpilot Senior Member

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    I read a bit of their study and it seems they selected patients who had already taken antivirals so there would have been a reason for taking them. If they took a broad sample of the CFS patients they may have found a lot didn't have these infections.

    It took me a full 12 years to get tested for ebv, cmv and hhv6 properly. Noone bothered. It turns out I don't have any of them but do have enterovirus so the approach used in the study would not have helped me.
  14. Timaca

    Timaca Senior Member

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    Hip~ Not enough is known about CFS/ME to suggest such a road map. The Stanford website gives some ideas. First rule out other problems: http://chronicfatigue.stanford.edu/overview/diagnosis.html If the patient isn't ill with one of those problems, then consider infections: http://chronicfatigue.stanford.edu/infections/

    Nothing beyond that is known for sure, so any advice is based on personal experience. That kind of advice is helpful, for sure...but is not something that can be written in stone. Research is needed to prove the various theories that abound.

    Best, Timaca
  15. Hip

    Hip Senior Member

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    Those are useful links, thanks Timaca.

    I think these days we are getting to a stage where at least a provisional roadmap can be made.

    Such a roadmap might be useful for people that turn out to have treatable or partially treatable forms of ME/CFS, such as ME/CFS caused by parvovirus B19 (I believe this form often resolves with intravenous immunoglobulin); ME/CFS caused by Chlamydia pneumoniae (treatable with antibiotics), herpes only ME/CFS (which we now know Montoya has a good partial treatment for); chronic EBV infection (which produces symptoms identical to ME/CFS); focal infections like bone infections (which produce symptoms identical to ME/CFS); for enterovirus ME/CFS, Chia's oxymatrine treatment gets useful results in 25% of cases; mold initiated ME/CFS is often improved, and even resolved on occasions, by removal of the mold triggers, and other actions. ME/CFS like symptoms also arise from infection with Coxiella burnetii, Brucella, Toxoplasma gondii and these are all treatable. Ross River virus also causes ME/CFS symptoms.

    So a roadmap to guide newcomers through testing and treating all these might be useful.

    I've had people on my blog desperate for answers to their symptoms, and a few have eventually found they had a treatable form of ME/CFS, which is lucky for them. I wonder how many people there are that have a treatable or partially treatable forms of ME/CFS, but are not aware of it, due to insufficient testing, or just lack of knowledge of treatments available.

    OK, for the rest of us, this roadmap is not going to help much, as the reasons for many cases of ME/CFS are both obscure, and are likely due to more than one cause though eventually, if you include predisposing factors on this roadmap (like IBS, interstitial cystitis, urinary tract infections, nasty gut bacteria), and suggestions on individually treating these predisposing factors, you could develop a "pick and match" roadmap, that people could use to taylor a ME/CFS treatment specifically for them. This is what will probably happen anyway in the future: all the causes factors in the ME/CFS equation will be recognized, and people with multiple factors driving their ME/CFS will be treated accordingly.
  16. richvank

    richvank Senior Member

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    Hi, Hip (and the group).

    In my opinion, one of early steps in the "road map" should be to run the methylation pathways panel. If there is a vicious circle involving glutathione depletion, a functional deficiency in B12, a partial block in the methylation cycle, and loss of folate from the cells, this will certainly cause dysfunction of the immune system as well as the host of other problems found in ME/CFS, and viral infections can be expected to activate and proliferate.

    Treating this vicious circle with a methylation protocol can restore immune function to a large degree. If there are entrenched viral infections, they can hide from the immune system, such as by producing nagalase or using other clever tactics. In these cases, additional measures will be necessary. But unless the immune function is restored, the viral infections may well return after treatment is stopped.

    Best regards,

    Rich
  17. Hip

    Hip Senior Member

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    Yes, your methylation protocol would definitely be on such a roadmap. I know someone that got remission from 10 years of CFS (triggered by very a severe mold exposure) primarily using the methylation protocol plus Th2 to Th1 immunomodulators
  18. SOC

    SOC Moderator and Senior Member

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    Yes, a roadmap would be helpful, Hip. The biggest problem,we all know, is the complexity of the illness. My family has had good luck with anti-herpetics, but none of us had other infections (at least not known ones). However, my daughter and I both did the Pall Protocol (which also works as a methylation protocol) for a year or more before we had anti-herpetics. We also do very careful pacing and aggressive resting. Did that make us able to better tolerate antivirals, while others couldn't? Who knows? We also do better if we add immune supplements (not in Dr L's treatment plan). OTOH, as far as I know, all my uncle did was take lots of anti-herpetics for a long time and he's in full remission (started with mild ME/CFS).

    I think the people who may have the closest thing to a roadmap are Drs Klimas, Petersen, and maybe Enlander and KDM. And I think even they probably wouldn't say they have it figured out.

    If I was to take a shot at a path today, I would suggest starting with pacing along with Pall/methylation (it can't hurt and probably helps), add some immune supplements (I've heard Dr Klimas often suggests AHCC; we've had some luck with Transfer Factor Essentials). In parallel, if the body can tolerate it, I'd try abx to go after the more common infections (assuming one could find a doc to test, intelligently assess results, and prescribe).

    After those treatments have done what they can do -- no more improvement -- then I'd try to go after any enteroviruses or herpes viruses. I think the biggest difficulty is finding a doc who knows enough about how to correctly test for and evaluate the test results for the various infections we have -- and are willing to treat sufficiently aggressively.

    That's just my current rough shot at a roadmap. I'd be interested to hear what other people can suggest. I doubt we'll get a simple map, but we might be able to make something useful.
  19. Hip

    Hip Senior Member

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    I think one of the things a roadmap should do is advise which tests to take first, and which tests to defer for later. Given that testing can be expensive, exhausting/time consuming, and sometimes complex, you'd want to start on the more important tests first.



    There are some good commercial testing/pathology labs in the UK:

    http://www.tdlpathology.com/test-information/a-z-test-list/numbers
    http://www.gdx.uk.net/index.php?page=shop.browse&option=com_virtuemart
    http://www.biolab.co.uk/index.php/cmsid__biolab_A_to_Z
    http://www.neuro-lab.com/list/assay_list
    http://www.breakspearmedical.com/files/pathology.html
    http://drmyhill.co.uk/wiki/Category:Tests
  20. Hip

    Hip Senior Member

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    These doctors no doubt have a clinical experience-based roadmap in their heads, which I expect is updated as they learn more.

    I do wonder wonder, though, whether there is some intrinsic bias in each of these researchers/doctors, that makes them focus on a particular set of viruses or treatments the ones they are most interested in, or have the most expertise on.

    For example, Montoya is into herpesviruses, Chia enteroviruses.

    You'd want a road map to be bias free.
    taniaaust1 likes this.

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