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Vitamin D Receptor Dysfunction

Discussion in 'Latest ME/CFS Research' started by PhoenixBurger, Feb 21, 2013.

  1. PhoenixBurger

    PhoenixBurger Senior Member

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  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    PhoenixBurger

    I have seen similar research before, but am not competent to evaluate it.

    Quite a few of us have had our Vit D receptors tested for SNPs though, and they are common with us.

    Sushi
    Wayne likes this.
  3. Hip

    Hip Senior Member

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  4. PhoenixBurger

    PhoenixBurger Senior Member

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    Sushi - how does one get these tests you guys all had? I have an appointment with Klimas in April but I wouldn't have the first clue as far as a list of tests I should ask her to run. No other doctor would be willing to take such a "ridiculous request" from me .... they wont even run CMV PCR at my request .... i can forget about anything that involves actual thought, or expense.

    PB
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I had mine tested at Redlabs and like many I have SNPs. http://www.redlabs.be/ You can send blood from the US.

    KDM talks about Vit D receptors in the 3rd video interview that was just posted here yesterday.

    Best wishes,
    Sushi
    Wayne likes this.
  6. SOC

    SOC Moderator and Senior Member

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    Dr Klimas will do lots of labs when you go there the first time. You don't need to know what to ask for at that point. :) They'll do excellent immunological testing and lots of pathogen testing. If you want exercise testing while you are there, you probably need to call and ask in advance. That will give you plenty to work on at first.

    By the time you are done working on the things that come up at the first appointment, you'll have a relationship with Dr Klimas and a great deal more knowledge of the illness, so I'm sure you'll be more comfortable about additional testing to ask for.
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  7. rlc

    rlc Senior Member

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    Hi PhoenixBurger, My personal view, is that extreme caution should be used, with anything connected to the Marshall Protocol, which this basically is. Dr Marshall is not a Doctor of Medicine, he is a doctor of electrical engineering!

    If you read it carefully, you will see that there is no replicated evidence that even shows what these bacteria are, or proof of their role in any of the diseases listed. He also is at odds with everything that the medical world’s modern research, has to say about the effects of vitamin D on the immune system.

    Dr Holicks, who is one of the world’s leading experts on Vitamin D, has said this about the Marshall protocol.

    How does the Marshal protocol which concerns Th1 pathogens and vitamin D receptors. It seems that they are saying vitamin D is harmful in chronic inflammatory conditions. Very confusing. Please comment.


    Response: In my opinion, Marshal does not fully appreciate the expansive biologic effects that vitamin D has not only on the immune system but on the body in general. He has assumed that vitamin D either turns on or turns off Th1 and Th2 lymphocytes. Unfortunately, what he doesn’t realize is that vitamin D through its active form 1,25-dihydroxyvitamin D is an immunomodulator that modulates the immune system for maximum health. There is in my opinion no evidence that vitamin D is harmful in chronic inflammatory conditions, and there has never been a report to suggest this.


    See http://vitamindhealth.org/2009/03/dr-holick%E2%80%99s-responses-to-participant-questions-during-the-december-5-2008-live-webinar-presentation-%E2%80%9Cvitamin-d-chronic-disease-risk%E2%80%9D/

    Large amounts of research being done by real doctors, is finding that increasing vitamin D levels show promise as a effective treatment for auto immune disease, and that low levels of vitamin D found in people in the western world due to sun avoidance, are contributing to, or maybe even causing the auto immune diseases, which are largely unheard of in countries with high sun exposure.

    So the evidence from the scientific world does not in any way back up the Marshall protocol.

    The other thing to consider is that if people deliberately lower their vitamin D levels, the one thing that they can be certain of is, that they will develop the symptoms of vitamin D deficiency, i.e. numerous symptoms such as Fatigue, muscle and bone pain, poor sleep, low mood, poor concentration, osteoporosis, due to the fact that it is a proven fact that vitamin D is essential for the immune system to work, they will not have protection from infections, and research also shows that low vitamin D levels are associated with causing over 30 different types of cancers.

    So basically, the opinions of Dr (in Electrical Engineering) Marshall and his colleagues are just that opinions!! Not backed up by replicated scientific evidence, and are not taken seriously by the medical profession, Dr Mercola has a lot to say about it here http://articles.mercola.com/sites/articles/archive/2009/03/14/clearing-up-confusion-on-vitamin-d--why-i-dont-recommend-the-marshall-protocol.aspx

    So my view is that people should stay well clear of these unproven, un replicated and potentially very dangerous opinions, stemming from someone with no medical qualifications.

    Hope this helps

    All the best

    Lala, Lotus97, Wayne and 3 others like this.
  8. Hip

    Hip Senior Member

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    I am not arguing for or against the Marshall Protocol, but in fact Marshall is a Master of electrical engineering, and Doctor of biomedical engineering.

    Trevor Marshall's 1985 biomedical engineering PhD from the University of Western Australia was entitled "Mathematical Modelling of the Insulin Glucose Homeostasis in Diabetic and Healthy Individuals". It was his 1978 Master's degree that was in electrical engineering. Refs: 1, 2, 3, 4.

    Marshall is currently Adjunct Professor of the Faculty of Health Sciences, Murdoch University, Western Australia.

    It is true that Trevor Marshall's field of study and views are controversial: Marshall believes that L-form bacteria are the cause of chronic fatigue syndrome, and that L-form bacteria are the cause of many other diseases.

    But Marshall is not the only person working in this controversial field: Gerald Domingue is one researcher who has dedicated his whole career to studying the possible role of L-form bacteria in disease, and Domingue has "implicated L-form bacteria in several kidney-related diseases including pyelonephritis, glomerulonephritis, idiopathic hematuria, and interstitial cystitis. He also speculated about their role in other diseases such as rheumatic fever, tuberculosis, syphilis, and rheumatoid arthritis".
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  9. rlc

    rlc Senior Member

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    Hi Hip, from the information I have read Trevor Marshalls qualifications are, Bachelor of electrical engineering from the university of Adelaide in 1974, in 1978 he obtained a Master of engineering (RF Digital Electronics), and he has a Ph.D. issued by the university of western Australia’s, Department of electrical and electronic engineering (not Biomedical engineering). Yes he did write a thesis on diabetes care. But none of this is in anyway a Medical Doctors qualification.

    Marshall appears to have problems in recalling what his own Ph.D. was in. Here he statesDuring that tenure I received my Masters Degree and commenced my PhD Research at the University of Western Australia, in Biomedical Engineering.see http://www.prohealth.com/library/showarticle.cfm?libid=10636

    But when he was CEO of YARC Systems he lists his qualifications as “Trevor Marshall PhD, Chairman and CEO, holds a Doctorate in Electrical Engineering.” see http://web.archive.org/web/19970406212025/www.yarc.com/profile.htm

    He appears to have had quite a checkered background according to the information here http://impnvestigator.chat.ru/

    Yes he is an adjunct professor at Murdoch University, but in the college of Veterinary medicine, animals not people, see http://search.murdoch.edu.au/?q=trevor+marshall&searchSite=external and http://www.murdoch.edu.au/School-of-Veterinary-and-Life-Sciences/Our-staff/College-of-Veterinary-Medicine/

    I don’t have a problem with people with non medical training coming up with theories about medicine, but they should have to be validated by proper scientific research, before they can be pushed onto the public.

    What gets me, is that there seems to be no controls on people being able to say things as if they are facts, when there is no proof of it, and then convince vulnerable people to part with their money, for unproven tests, and treatments, which are potentially very dangerous to people’s health, and be used as guinea pigs, to try and prove these often very unscientific theories, without the scientific evidence to say that the treatments are safe. In fact with regards to the Marshall protocol, being vitamin D deficient is proven to be very detrimental to people’s heath.

    I’m amazed, that there are not more controls on this. But then I was equally amazed that XMRV tests were being sold, when the science was nowhere near complete enough to warrant them being sold, I have yet to hear of anyone getting their money back.

    To me it seems very wrong, that anybody can come up with un replicated theories i.e. pseudo science, and be allowed to make money, and/or possibly endanger vulnerable and desperate people’s lives, and this is legal.

    Can’t say I have read Gerald Domingue’s work, but I find it somewhat baffling that they think that L form bacteria, have a role in Rheumatic fever, tuberculosis and syphilis, when the causes of and successful treatments for these diseases is already known.

    All the best

  10. Hip

    Hip Senior Member

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    I am glad that Trevor Marshall has made his ideas available for anyone to try. I went on the Marshall Protocol myself for 3 months, and noticed some mild improvements; but I stopped the protocol because I wanted to test other treatments that I thought might be more promising. I may decide to give the Marshall Protocol another try at some point.

    Though I do agree that Trevor Marshall and the people that work with him are jumping the gun when they state that "L-form bacteria are the cause of chronic fatigue syndrome," given that there is no proof at all of this.

    There is no data to show that L-form bacteria are even associated with ME/CFS, let alone data that proves L-form bacteria cause ME/CFS.

    Researchers are entitled to make statements such as "we believe/suspect that L-form bacteria may be the cause of chronic fatigue syndrome" or words to that effect, because such a statement is about the beliefs and hunches that a researcher may have. All researchers have hunches and entertain beliefs, and their research efforts are guided by their beliefs.

    But proving these hunches and beliefs actually requires decades of work and effort.

    Most of the doctors and researchers in ME/CFS have their own particular beliefs and interests. Dr John Chia, for example, believes that enteroviruses are the cause of ME/CFS, and works hard to try to gather data to prove this belief. So far, he is doing very well. But Chia does not go around saying "enteroviruses cause ME/CFS", even if he believes it to be the case, because he knows saying that would be jumping the gun of proper scientific proof.

    Note however that Trevor Marshall is not making any money from his theories, as any patients that try his protocol do so through their own doctor, or do it by themselves. In any case, the Marshall Protocol is pretty cheap; you only need to buy the blood pressure drug Benicar in order to do the Marshall Protocol.

    Also note that unproven theories are not necessarily pseudoscience; theories may even turn out to be wrong, but that does not make them pseudoscience. Though it is certainly wrong to portray an unproven theory as a fact, when there is not any proof for it.

    I generally support Trevor Marshall's academic interests and theories. He is one of the few people out there that are pushing the envelope when it comes to making the medical research community more aware that many common diseases may well be underpinned by chronic microbial infection. I personally agree with this view. I think we will find that a whole raft of common diseases from Alzheimer's to cancer will turn out to be caused by microbes. Trevor Marshall is doing good work in raising awareness that microbes may be the cause of many diseases of currently unknown etiology.

    Another person who has worked to bring greater awareness that microbes may be the cause of many common diseases is Paul W Ewald.

    It is not uncommon for more than one microbe to be involved in the progression of a disease. For example, while we know that HIV is the cause of AIDS, it is thought that co-infection with the virus HHV-6A can dramatically accelerates the progression of AIDS. Ref: 1
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  11. Rolo

    Rolo Too ill to twist

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    Hi Sushi,

    Indeed he talks about vit D but he stays very vague about it. Have you any idea about his theories? Is it in line with Marshall theories or is it just the opposite? He refers to a study they have done. Is there any detailed information around about this study or his ideas?

    He also seams to say that it is not that significant because only a minority of people with ME has this deviation.

    I'm following the Marshall Protocol for more then a year now, so you could say that I'm a believer (critical one) of at least some of the theories of prof. Marshall. Although I think that the protocol itself will not be sufficient for most PwME but it could be helpful factor. (or just the opposite depending on what you believe?)

    That's why I'm always interested in other point of views or confirmations from other specialists on the subject.

    Thanks, Rolo



    Video:
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Rolo,

    I believe KDM looks at the Vit D receptor mainly in relation to GcMAF. Its functioning may influence a patient's response to GcMAF. I don't have details of his study of the Vit D receptor. However, now that he has been giving GcMAF for over 2 years, it seems that the D receptor doesn't seem to be a very accurate predictor of how a patient will do with it. Maybe that is what he as referring to.

    I have about the worst SNPs in the Vit D receptor and yet have had good improvements with GcMAF, but, it is true that I can't handle as large a dose as friends with better Vit D receptors. I can't say that there is a connection however, this is just an observation.

    KDM doesn't advocate the Marshall protocol but also wants us to closely monitor our levels of D while on GcMAF--particularly Vit D 1,25.

    Best,
    Sushi
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  13. PhoenixBurger

    PhoenixBurger Senior Member

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    rlc and Sushi Hip



    What are your thoughts on the fact that Sarcoidosis is considered autoimmune and people with this condition are HIGHLY advised to avoid all Sunlight and Vitamin D nutritionally? Here we have an example where Vitamin D is clearly accepted in the general medical community as being a promoter of autoimmunity, right?
  14. Hip

    Hip Senior Member

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    I believe Trevor Marshall first started getting interested in the vitamin D receptor (VDR) connection to sarcoidosis when he noticed his own sarcoidosis symptoms always worsened whenever he had a significant exposure to sunlight.

    Marshall developed his protocol initially for treating sarcoidosis, only later suggesting that the same protocol could be tried on other diseases.

    If at some point I try the Marshall Protocol for my ME/CFS again, I will probably not bother with observing sunlight and vitamin D avoidance; I might just take the Benicar (olmesartan) dug on its own.

    I suspect the sunlight and vitamin D avoidance may only be relevant for sarcoidosis, but possibly not so important for other diseases.
    Wayne likes this.
  15. rlc

    rlc Senior Member

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    Hi PhoenixBurger, Vitamin D isn't to be avoided with Sarciodosis because of Autoimmunity, it is to be avoided with Sarciodosis because, it leads to dangerous increases in calcium levels, this also happens with tuberculosis, parathyroid tumours and certain cancers, non of which are autoimmune diseases. Vitamin D is seen as being benificial for almost all other autoimmune diseases. It is not good with sarcoidosis because of sarcoidosis effect on calcium absorbtion, not because of autoimmunity.

    All the best
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  16. PhoenixBurger

    PhoenixBurger Senior Member

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    Ahhhhh!!! That makes more sense. So interesting! Thank you.
  17. dannybex

    dannybex Senior Member

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  18. alwayshopeful

    alwayshopeful

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    Interesting article. Since we are talking about Vitamin D, I wanted to share something interesting. When I take Vitamin D , I get terrible insomnia. I know it's the D because I quit taking everything, then slowly started adding supplements back in. Sure enough--take D, insomnia. Stop D, sleep. Someone figure that one out!!
    Wayne likes this.
  19. Old Salt

    Old Salt Rowing the boat

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    When I take anything that boosts the immune system, the result is insomnia. I only take supplements in the morning, preferably before 9am. It helps. I also take "Sleep Essentials" from Swanson Vitamins at 9:30 pm.
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  20. Ema

    Ema Senior Member

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    When I take large doses of Vit D (above 5000 IU/day), my active Vit D level (1,25 D) goes out of control high.

    Usually the body keeps the 1,25 D tightly regulated and as such there isn't much sense in measuring it. In someone with properly functioning Vit D receptors, the level should stay around 30 no matter where the 25-OH level is.

    When my 25-OH D level climbs much above 50-60 through supplementation, this regulation mechanism seems to go off track and my 1,25d level climbs upwards of 80. This high of a level is supposedly suppressive to the immune system and contributes to inflammation - the exact opposite of what most of us want.

    I suspect Vit D is another Goldilocks situation...both too much AND too little are not good for immunity. I think a lot of people may be shooting themselves in the foot right now with megadosing Vit D especially if they are not measuring their 1,25 D levels as well. I personally think a 25-OH level of more than about 60 is too high. I think most doctors that say otherwise are just parroting the current Vit D trend rather than having any in depth knowledge of the effects of Vit D on illnesses like ours.

    Ema
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