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Dr. Marshall on XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Nov 17, 2009.

  1. SDD1244

    SDD1244 Guest


    Well said, oerganix.

    My intentions for being on this thread is to also try to clear up any misconceptions about the Marshall Protocol, or any other antibiotic protocol, for that matter. I agree with myco.... I am very concerned about the fact that many people are ignoring the importance of mycoplasma infections in CFS patients. You know I find it interesting how medical schools have failed to teach medical students about CFS and also about mycoplasma (excluding one mycoplasma.... mycoplasma pneumoniae).

    Antiviral therapy is fine, but it will lower your immune system and I would think that if you have a bacterial infection... then you will get much worse. I read a testimony already online about a woman who was on the Valcyte study (2nd study). She said that it was unsuccessful for her and her CFS symptoms are worse than ever. I'm assuming it is because she has a bacterial infection that needs to be addressed.
  2. Katie

    Katie Guest


    I made my comment based on his response to the XMRV news, it did not fit his theory so he discounted it, I will apologise for the way I phrased it but I found his tone abrasive and his reasoning odd.

    Thank you for your response though, I don't think badly of anyone taking this root as a course of action, I'm still dubious but I think you will have to leave me in a dubious state. I don't want to fight for or against it, everyone has to make their own choices based on their own research and what they think is right. I think we will just have to agree to differ. If it makes any difference to you I will double proof read before posting on subjects like this again. Little victories and a small shake of hands perhaps?
  3. dannybex

    dannybex Senior Member

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    YES. I agree...that statement is basically the saying the same thing. I disagree that it's been repeated and repeated, but others have certainly commented that the 'Dr' label could be misinterpreted by others, (I'm assuming they mean those with more brain fog).

    And you're correct that prospective patients "are told from the very beginning that they need to have an MD or an OD supervising and prescribing, AND that Dr Marshall is not an MD."

    So, we DO agree on a few things! :)

    (Thanks too for your PM).

    d.
  4. oerganix

    oerganix Senior Member

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    Shake hands? Sure!

    Katie, I'd even welcome a hug!:)

    Dubious is good.

    I don't hope to convince anyone that the MP is "the answer" for everyone. I'm not even sure it's the answer for me. I do know I got a lot better on it and still retain some of the benefits, such as not having MCS anymore, or back pain. I'm still waiting and looking for something better and I hope antiviral treatment will offer that. I just object to the dehumanizing of someone who has some of our common human flaws, like arrogance and abrasiveness, which those of us who have interacted with him have admitted, as well as having mentioned that he can be very caring and supportive. I believe his arrogant heart is in the right place, whether his science will turn out to be totally correct or not.

    I object to rumors and gossip being presented as fact by those who demonstrate they are not familiar with the protocol. Anyone who knows me would say I am not subject to joining any "cult", not even an "XMRV is it" cult. ;)

    And I absolutely understand having a "knee-jerk" reaction when someone else acts like a "jerk", in my opinion. This is why I usually wait a day or two before answering a post that offends me. Often, by then, it doesn't push my buttons hard enough to bother with them. I would characterize Dr Marshall's response as a knee-jerk reaction to the XMRV study in Science but who knows what kind of day he was having when he said it?

    Wish you (and everyone) small and large victories and the best outcome possible,
    Lilly :)
  5. oerganix

    oerganix Senior Member

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    Danny

    There are probaby a lot of things we can agree on. :) A hand shake and/or hug to you, too. (Here in Latin America I've got used to the hug and kiss on the cheek they do routinely, and I kind of like it.) ;)
    Lilly
  6. SDD1244

    SDD1244 Guest

  7. Sheesh!

    Sheesh! Guest

    Blaney's interview is a very good introduction to the ideas behind the MP--one in layman's terms. When you hear it, note how many more questions you might have. It is not easy to respond to misinformation about the MP on the Internet because just explaining the basics takes quite a bit of background. Our explanations would be LONG and always incomplete. (It takes a long time in person too.)

    The MP really is something that someone has to study for his or her self and then decide.

    Of course, for those who will try anything a doctor they trust suggests, you can wait to decide to check it out when a trusted doctor near you suggests the protocol or when the medical community in general accepts it. Remember, though, according to medical research, doctors tend to be 15 to 20 years behind on the research. (Sorry no reference for that.) How much longer until the community has a general consensus? Your guess is as good as anyone's I suppose. No doubt there's some research on that as well, showing how long it takes for paradigm shifts to happen in the larger medical community once the scientific community accepts something.
  8. klutzo

    klutzo Senior Member

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    Some facts

    Some reading for you:

    1.Re : legal cases and convictions: One case in California, and one in Denmark.
    http://sci.tech.archive.net/Archive/sci.med.diseases.lyme/2005-08/msg01695.html
    ETA that this link appears not to work, though I copied it exactly. You can find a PDF of the court cases/convictions by Googling "Trevor Marshall" + Denmark and clicking on the 4th listed item from the scitech archives.

    2. Re: Prognosis of Sarcoidosis: This is just one link; you can find many others along the same lines if you look.
    http://www.wrongdiagnosis.com/s/sarcoidosis/prognosis.htm


    3. I posted my lab results on the MP site long ago, without mentioning my hospital/medical work background, and that I know what normal lab ranges are. A nurse who was his assistant on the MP site told me the following about my lab results:
    1. She said I was anemic. This was not even close to being true.
    2. She said I had high triglycerides and that this showed I needed the MP. My triglycerides were not high at all. There is no evidence triglycerides have anything to do with this, even if they were high.
    3. She said my 25OD to 1,25OD ratio was way off and proved I needed the MP. This was not true by Marshall's own standards. He had posted that a ratio of 1.0-1.25 is normal. My ratio is 1.08.
    4. I posted sarcastically that I was going to call my doctor right away and let him know that everything he'd ever been taught about lab results was wrong. Then I left and never went back.


    The above are facts, so I will not waste time arguing about them. Now for my opinion: I have two good friends with Lyme who have been on the MP for a long time (years), though I've seen no change in one's level of illness, and the other is now dying. This is not personal, since I like them both very much and their support of the MP does not change how I feel about them.
    After reading about the court cases, the truth about recovery from sarcoidosis, and my own experience with being outright lied to about my labs, I would never trust my health to this man. Just my two cents, which I am entitled to.

    klutzo
  9. Koan

    Koan Be the change.

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    For what it's worth...

    I did a kind of modified Marshall Protocol by default.

    Being exposed to sun, even through glass, made me feel very ill. Antibiotics made me feel much better.

    When I found my apt. I was sorry that it did not have a view because the apt. building next door is only about 15 ft. away. But, given that I'm heat intolerant and sun intolerant, I thought I'd take it anyway. The first summer I was here was very sunny and hot and I could not afford to run my window air conditioner so I covered the window glass with 3 layers of those foil like emergency blankets, to block what reflected sun there was, and it was quite dark in here for several months.

    I also worked with my doctor to pulse Doxycycline which has always helped me. I began to improve.

    Because my financial situation is pretty tight, I stopped buying dairy products because I simply could not afford them. I don't take any supplements because I can't afford them, either.

    I improved some more. When I eat dairy, I have no immediate reaction and no gut reaction as one might expect with a casein intolerance. But, not eating dairy would really cut down on my vit. D consumption. This made me nervous, I must say. But, I continued to improve.

    A friend gave me dark wooden slat blinds for my windows so I don't look like I'm trying to keep martian rays out with the emergency blankets any more :p
    I have lived in a very dark apt. for lug-bhug (approx.) four years now, taking doxycycline for lug-bhug 4 or 5 mo. of the year. I have slowly improved.

    Interestingly, the sun no longer makes me feel ill as swiftly as it once did. Since living in the dark (I have been largely house-bound) I find I can occasionally spend time in the sun without feeling the life drain out of me. I used to feel like a vampire on a sunny day if I had to be outside and even wore really ugly sun protective clothing.

    And, yes, I should have my vit. D levels checked. I believe it was Althea who reported that her vit. D was high, despite not taking supp.s.

    Anyway, not Marshall Protocol but very similar and I'm feeling better than I was.

    For what it's worth...

    As I said, for what it's worth.

    ETA "lug-bhug" is a Gujarati (province in India) expression that I, and some others, are experimenting with. We are seeing if it catches on - goes viral so to speak :D After all, bungalow, pyjamas and many other Indian words have done very well.
  10. Koan

    Koan Be the change.

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    I just want to add that my post is not a comment on the Marshall Protocol but, rather, a warning that there may be a baby in the bath water.
  11. SDD1244

    SDD1244 Guest

    Koan,

    That is what I like to hear... other peoples experiences. Regardless of how we feel about Dr. Marshall, I have read and heard from people who have had positive experiences on his protocol. Actually, I'm one of them. And I have found that my body does not want vitamin D and I cannot tolerate the sunlight (especially when my illness is at its worst).

    I think mycoplasma is just as bad, if not worse, than XMRV. In fact, mycoplasmas may have some characteristics of viruses. I am deciding what to do at this point and may go back on antibiotic therapy. However, I'm not sure that I will choose the Marshall Protocol. The good news is... we have several options and there are treatments out there right now that have helped many CFS patients:

    http://www.immed.org/publications/Treat[1].consider.05.11.rtf

    http://www.gordonresearch.com/category_protocols.html

    http://www.roadback.org/
  12. CJB

    CJB Senior Member

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    Can't speak to the MP protocol, but I took doxycycline for a year and finally worked my way out of the constant low-grade fever and swollen glands. It was one milestone in my improvement. But I'm still very susceptible to crashes and have to rest a lot.
  13. GoWest

    GoWest

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    Why the Marshall Protocol may help some folks - because minocycline will reduce retroviral action, particularly in the brain.
    http://diseases-viruses.suite101.com/article.cfm/hiv-prevention-through-an-acne-drug

    HIV prevention through an acne drug
    Minocycline has a renewed purpose
    Share Article | Mar 24, 2010 Candace Y.A. Montague

    At Johns Hopkins University, a familiar acne treatment from the 1970's has been found to skillfully target immune cells infected by HIV and prevent replication.

    Johns Hopkins scientists discovered recently that an old acne drug has a purpose in addition to warding off acne. The drug minocycline, prescribed for years to treat moderate to severe acne, has been proven to improve on the standard Highly Active Antiretroviral Therapy (HAART). The drug has been found to target infected immune cells in which HIV lies dormant and prevents them from replicating and reactivating. This research has been published in the April 15 edition of the Journal of Infectious diseases. “The powerful advantage to using minocycline is that the virus appears less able to develop drug resistance because minocycline targets cellular pathways not viral proteins,” says Janice Clements, Ph.D., Mary Wallace Stanton Professor of Faculty Affairs, vice dean for faculty, and professor of molecular and comparative pathobiology at the Johns Hopkins University School of Medicine.

    Drugs in action
    T cells are the Achilles Heel of a person infected with HIV. T cells are used to fight infections within the body and when compromised the body will grow weaker. T cells are a major component of the immune system and HIV breaks them down. The drugs used in HAART work on targeting the virus within the immune system and halting replication. This new study shows that minocycline reduces the ability of infected T cells to activate and proliferate. Dr. Clements adds "Minocycline reduces the capability of the virus to emerge from resting infected T cells,” Szeto explains. “It prevents the virus from escaping in the one in a million cells in which it lays dormant in a person on HAART, and since it prevents virus activation it should maintain the level of viral latency or even lower it. That’s the goal: Sustaining a latent non-infectious state.”

    New understanding leads to new hope
    The idea for using minocycline emerged from research by another study that showed the anti-inflammatory effects of minocycline on rhuematoid arthritis. The Hopkins group then tested minocycline on monkeys infected with SIV, a primate version of HIV. Once treated with minocycline, the viral load significantly decreased. The success with that model ignited a study of the effects of the antibiotic with human T cells infected with HIV. Using cells from HIV-infected humans on HAART, the team isolated the “resting” immune cells and treated half of them with minocycline. Then they counted how many virus particles were reactivated, finding completely undetectable levels in the treated cells versus detectable levels in the untreated cells.

    Read more at Suite101: HIV prevention through an acne drug: Minocycline has a renewed purpose http://diseases-viruses.suite101.com/article.cfm/hiv-prevention-through-an-acne-drug#ixzz0jAG4MeGE
  14. natasa778

    natasa778 Senior Member

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    Minocycline chelates cellular calcium.

    it has been sucesfully used in many neurological disorders.. there is hardly a disorder/injury with "psychological" sequelae that hasn't been helped by it or by doxy (apart from ALS I believe).
  15. oerganix

    oerganix Senior Member

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    I didn't notice improvement in brain function (although it may have been there) while on the MP but my exteme back pain went away and so did my MCS. And although I did all the vitamin D avoidances...diet, clothing, cave-like living, no-infrared sunglasses...for 3 years, my vitamin D levels never came down to the optimum MP range. I feel that a spinal chord infection was either repressed or knocked back while on pulsed antibiotics. I had radiating pains down my sciatic nerves and sometimes had "charlie horses" so strong they left visible buises on my legs and thighs.

    Unfortunately, my fatigue levels were not helped, my biggest disappointment in the MP.
  16. beckster

    beckster

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    Hi Oerganix,
    can i ask if you got so many improvements, why you stopped so early? I've just finished five years and probably saw the most improvements in the last year or little more, although there were changes all along. I think its not untypical for cfsers or lymies to see pem or fatigue improvements after many others. . .

    I also had that weird spinal chord infection, was chronic all winter long, now is just periodic, much lessened. Oh also, it took about 4 years for my d levels too finally get optimal, although they did lower before that . . .
  17. oerganix

    oerganix Senior Member

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    Valid question, beckster. As you know, the MP is hard to do right. After 3 years I needed to do some things, make some changes in my life, where I needed all the energy I could muster. I decided to leave the US because just keeping warm in the winter was costing more than a month's disability check and I was living where one has to have a vehicle for transportation and having more car repairs than I could afford.

    I decided to go to Thailand and get my certification for teaching English as a Foreign Language and maybe stay there indefinitely. I had taught and lived there before and the climate and culture suit me. The MP had got me well enough to do that. I did the cert, but politics there made it impossible to stay long term. I would have continued the MP there, but couldn't get the benicar there.

    I returned to the States and resumed the MP, but the benicar lowering blood pressure seemed to work against me, as my blood pressure was already low. Also, I was never one who felt worse after or during exposure to the sun, so I was never fully convinced on that score. I am sure the pulsed antibiotics helped me, but I'm not sure about the other aspects. I understand they've lightened up some on the sun exposure rules. And I have no doubt that sun exposure sickens some people.

    I then moved to Nicaragua for the low cost of living, the warmth, etc., and benicar is also not available here. So I do the antibiotics periodically, without most of the rest of the protocol. I do cover up from the sun and carry a parasol here, and I avoid dietary vitamin D and would never supplement it. I never saw anyone with CFIDS who seemed to get better than a certain level, the level I had reached, so I decided the benefit vs. downside just wasn't there for me. I also was in circumstances that made it difficult for me to do the reporting the study required and I got turned off by the demands of the site managers. In other words, I wasn't an ideal study subject. And I'm not convinced that bacteria is the only problem for MY CFIDS. It may be for some.

    How would you rate your condition and symptoms now?
    And have you looked into LDN? I'm doing that now and it's helping. It's a lot easier than the MP.

    If I'm ever in the right circumstances, I might try going the distance with the MP. I've still got my NOIRS!
  18. Overstressed

    Overstressed Senior Member

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    I've been reading this thread, and I think the MP Protocol might work, not as expected, but maybe in this way, contributing to improvement:

    http://www.sciencedaily.com/releases/2010/03/100319202528.htm

    OS.

    p.s. Apparently I must be blind. Please remove my link, since it's posted already a few posts above. Sorry.
  19. oerganix

    oerganix Senior Member

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    Yes, you may be right. I and others have thought of that, too. The article talks about T-cells, but doesn't mention that some illnesses, like CFS, seem to be 'shifted' from T-2 toward T-1. What the MP does is shift towards T-2. The MP theory is that 'autoimmune' illness are shifted toward T-1.
  20. Jenny

    Jenny Senior Member

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    Hi oerganix

    Most of what I've read suggests that in ME the immune system is shifted toward TH2, and that we need to shift toward TH1 in order to deal with viruses and intracellular bacteria.

    I think minocycline is interesting. I was much better on doxycycline for a while, and then was put on mino because it was summer and doxy causes photosensitivity. I continued better, then stopped cos I thought I didn't need it and was worried about side effects. After a couple of months I had a severe relapse, and after 5 months of doxy got no better. I had assumed that all the tetracyclines were much the same so didn't ask for mino, but it might be worth trying again at some point.

    Jenny

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