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Great article, MS/Bipolar/Schizo=retrovirus activated by other infections

Discussion in 'XMRV Testing, Treatment and Transmission' started by CAcfs, Nov 16, 2010.

  1. Jemal

    Jemal Senior Member

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    I know where you are coming from. I am also waiting for some more news from the BWG, before putting effort and money in getting tested for XMRV and such. It would be nice to know if I got this virus, but nothing is really proven at the moment and I wouldn't be able to get a treatment from regular doctors. I have considered visiting De Meirleir as well, but I have been reading a lot of patient stories and I am not sure what to think of him. On some points he seems to be very far ahead of the game... on other points I am not so sure. And I detest having to pay for everything. I am Dutch of course :D

    I do feel XMRV is somehow the silver bullet to this disease (playing a big factor), but we'll see.

    Yeah, I know the recommended daily amount of Vitamin D in the Netherlands is outdated. But my symptoms got worse when I took larger amounts of Vitamin D, so I am just taking 100% of the recommended daily amount at the moment and I feel that is helping.

    I had a minor Vitamin D deficiency by the way, discovered by the internist I was seeing. I got supplements and got retested: I was no longer deficient.
    (now I am always wondering how accurate these tests are, because I know some tests prove nothing, like some B12 tests).

    I quit taking Fish Oil, but I see it popping up a lot on the forum lately. I guess I will start taking it again to see if it makes a difference. My biggest problem was that I had a closet full of supplements and it was getting ridiculous: I was taking like 10 - 15 different supplements and vitamins. About 6 months ago, I kicked out most of the supplements and starting experimenting with 1 supplement at a time to see what helped. I am aware you need to take combinations of vitamins some time, I am taking some Zinq, Calcium, etc to support the other supplements.
     
  2. FancyMyBlood

    FancyMyBlood Senior Member

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    I hear you about prof. de Meirleir. Reading some of his patients reviews made me reconsidering consulting him, but there are also tons of positive reviews. After the EenVandaag item and the laudatory words from that internist in Lelystad I decided to give him the benefit of the doubt. And let's be real, what other options do we as patients have? After being told I had something that could be resolved by CBT and anti-depressants I lost all confidence in the Dutch medical guidelines. Hopefully this XMRV thing pans out and these guidelines will finally be changed (and covered by insurance!). If not, or XMRV- (don't want to think about that, lol) my only option will be de Meirleir.

    There is also consensus right now that vitamin D levels should be upped to 50 ng/ml instead of the 20ng/ml is now being used as a vitamin D deficient border. But if you feel better by taking the dose you're using now there is no need to change it. Especially if higher doses make you feel only worse.

    I've also used every supplement imaginable, but in the end it all boiles down to proper eating habits I think. You don't need multivitamins or anything like that if you're eating a balanced diet. And I don't believe these natural virus inhibitors like quercetin, curcumin etc. help anything either. At least in my experience.
     
  3. redo

    redo Senior Member

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    Speaking of endogenous retroviruses and MS, here are three more studies on it:

    Expression of HERV-Fc1, a human endogenous retrovirus, is increased in patients with active Multiple Sclerosis.
    http://jvi.asm.org/content/early/2012/01/18/JVI.06723-11.short?rss=1

    Pathogenesis of multiple sclerosis: expression of HERV-Fc1: a human endogenous retrovirus
    www.ncbi.nlm.nih.gov/pmc/articles/PMC3236868/

    Genetic association of multiple sclerosis with the marker rs391745 near the endogenous retroviral locus HERV-Fc1: analysis of disease subtypes.
    http://www.plosone.org/article/info:doi/10.1371/journal.pone.0026438
     
  4. Bob

    Bob

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    Thanks redo. So the first one is a brand new paper and the other two were published last year?
     
  5. czecher

    czecher

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    I have a son with schizophrenia, and a strong family history of depression. I have depression, along with a weakly positive rheumatoid factor and elevated ESR. I also have achalasia, a swallowing problem, of which the cause is not known. So, lots of inflammatory problems. I also have major GI motility issues, some of which may be caused by autoimmune problems against certain cells. I guess what I'm trying to say is that I feel that some of these syndromes are a part of an epigenetic problem; passed on from family member to family member by birth, but not in the usual mitotic cell division. Maybe more as a result of a mitochondrial DNA/ RNA cell division. Just a theory I have, but I've always had problems with stamina, which slowly worsened over time to the point that I have had to stop working.
     
  6. redo

    redo Senior Member

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    Yes. I posted them both as "a bookmark" for myself, and in case others wanted to check them out.

    Endogenous retroviruses are central to epigenetics, so that makes a whole lot of sense. I think that when some genes are switched on (ERVs activated), the body is almost chanceless to stop it on it's own, and the result could be MS, schizophrenia, perhaps ME. That's what I think.

    What we know, is that the immune system uses methylation to silence these endogenous retroviruses (epigenetic changes), so a good bet for you would be to try to go on a methylation protocol. There's a subforum about it here, and several great people with lots of knowledge on the topic.

    Here's a short introduction to the topic:
    http://en.wikipedia.org/wiki/Methylation

    I actually think a major reason why people benefit from the protocols, is because it makes the immune system more able to handle activated ERVs.
     
  7. redo

    redo Senior Member

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    Perron whom made the discovery of HERV W (or MSRV as it's called), is working on a monoclonal antibody which stops the virus from excerting it's pathogenic effects. It has worked in a animal study (as stated in the article). What was done there was to inject HERV W into the mice, the mice became clumpsy and died, but when treated with the monoclonal antibody he developed, they survived. Now phase one of human studies are done. The medicine is safe in humans:

    8th February 2012, Plan-les-Ouates, Geneva, Switzerland. GeNeuro SA announces today the successful completion of its phase I clinical study with GNbAC1, a humanized monoclonal antibody targeting a human endogenous retrovirus, to treat multiple sclerosis. The randomized, double-blind, placebo-controlled, phase I study of single ascending intravenous doses of GNbAC1 in healthy volunteers demonstrated that GNbAC1 is very well tolerated.

    I have really high hopes for this approach. www.geneuro.com/en/news.php
     
    cigana likes this.
  8. Bob

    Bob

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    Thanks for the info Redo... This is very interesting research.
     
  9. anciendaze

    anciendaze Senior Member

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    For what it may be worth, I have been thinking that the distinction between endogenous and exogenous retroviruses is not quite what people assume, and endogenous sequences, even if highly defective, may play a role in defense against infection by similar exogenous retroviruses. Here is a recent blog post of mine. The HIV model is appropriate for exogenous retroviruses which have no endogenous counterparts. For those with many similar endogenous sequences things become more complicated. The assumption that individual exogenous viruses will generally "breed true" may not be justified at all. Models based on unbiased probabilities may also be highly misleading if the dice are loaded by sheer numbers of endogenous sequences. Molecular clock arguments about sequence age depend on the rate of neutral mutations, and become invalid if the sequence is part of active defenses.
     
  10. redo

    redo Senior Member

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    Here's the full text (my bolds):

    8th February 2012, Plan-les-Ouates, Geneva, Switzerland GeNeuro SA announces today the successful completion of its phase I clinical study with GNbAC1, a humanized monoclonal antibody targeting a human endogenous retrovirus, to treat multiple sclerosis. The randomized, double-blind, placebo-controlled, phase I study of single ascending intravenous doses of GNbAC1 in healthy volunteers demonstrated that GNbAC1 is very well tolerated.

    GeNeuro SA, a Geneva based private biotech company developing therapies for neurology disorders, has announced that the last subject in a Phase I study has been dosed with its monoclonal antibody GNbAC1 for multiple sclerosis (MS). This Phase I study is a single ascending dose study focusing on the safety and pharmacokinetics of the monoclonal antibody. During the study, 33 subjects have received the monoclonal antibody up to the maximal dose which was very well tolerated.

    GNbAC1 targets the envelope protein of an endogenous retrovirus which could play a critical role in the pathogenesis of Multiple Sclerosis. Discovered in the early 90s, the Human endogenous retrovirus of type W is closely associated with MS and, due to its neurotoxic properties, could be a causal factor of the disease.

    Franois Curtin, MD, CEO of GeNeuro said: This is an excellent news for the company to have shown the safety of the product in Humans for the first time. This is a critical moment for MS patients and the MS community in general, as GeNeuros approach is a real breakthrough in the therapeutic of this disease and is now ready for testing in patients. We have here a treatment which may stop the progression of the disease by targeting a key upstream factor of MS and which leaves the immune system untouched.

    GeNeuros next step is to administer the monoclonal antibody to MS patients in clinical studies which will start within the next months.
     
  11. wastwater

    wastwater Senior Member

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    Just posting message here because I think this is where the answer is to be found and I want to come back and read it.Theres some good research going on in MS right now they think that EBV/HHV 6 and HERV are all important I was wondering about HHV 6 that's intergrated too CIHHV-6
     
  12. maryb

    maryb iherb code TAK122

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    I missed this thread, Redo's post on the research looks like really good news for MS sufferers.
     
  13. redo

    redo Senior Member

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    Well, perhaps not just for MS sufferers. There's a whole host of what used to be syndromes, which are now known to be bacteriological diseases.

    Taking a quick look at Wikipedia, one can see they have listed:
    - Over hundred bacteriologial diseases
    - Over hundred viral diseases

    If (and yes, it's a big if) Perron is right, and endogenous retroviruses turn out to be at the core of both schizophrenia and MS, then I don't think it would stop there. I think it would be a paradigm shift, and various syndromes will stop being mysteries. I highly doubt that we'll end up with: Diseases from HERVs: Two - and that's it.

    Judging from how ME often gets triggered, I have reasoned that if indeed a retrovirus is causing ME, it's either:
    - An exogenous retrovirus which lies dormant in a major part of the healthy population
    - A HERV which lies dormant and doesn't cause any problems with healthy people

    The reason I suspect a 'ME retrovirus' being common and dormant in healthy people, is that illness often starts with a trigger, such as mononucleosis, giadiasis, lyme borreliosis, a common flu.
     
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  14. Enid

    Enid Senior Member

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    A great thread (I've missed before) - thanks CAcfs. Very informative.
     

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