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    #31
    This treatment would be a cake walk! if something sounds too good to be true, it usually is.
    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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      #32
      Katje,
      'Stranger things have happened'.

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        #33
        Stomach ulcers and malaria

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          #34
          Right on Jerry and Mable...

          “For years it was thought that stomach ulcers were caused by stress, foods, etc. The idea that stomach ulcers might be caused by bacteria was laughable to some, and pretty much disregarded by everyone else. Then someone purposefully infected himself with bacteria, got an ulcer, treated himself with antibiotics, got rid of the ulcer and shocked the medical community.”

          Professor Julian Gold gives a 15 minute overview of the Charcot Project in London which is investigating a viral cause for MS: http://www.youtube.com/watch?v=GTD1Bp-LZk44

          Notably, he talks about viruses in our personal genome which may be activated by Vitamin D deficiency, Epstein - Barr virus, smoking, etc. Perhaps stress and other factors are involved, too.

          He states, “When you look at patients with MS and you look using extremely sophisticated viral techniques you actually see in the blood of people with MS small viral particles which represent viruses contained in the genes of cells which have been switched on (activated). And you don’t find them in people that don’t have MS." He is talking here about activated HERV (Human Endogenous RetroViruses).

          He continues, "This work has been published widely. You can follow and see these little viruses. We know that because these viruses come from your own genes, they are actually part of you, and when your body reacts to this it is called an autoimmune reaction. When people talk about MS being caused by an autoimmune reaction it may in fact be the body’s response to these little (viral) particles which are produced by your own body.”

          Pender’s work in Australia dovetails nicely with the Charcot Project.

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            #35
            How long have you had MS myoak?
            Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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              #36
              Thank you for asking but my story would quickly bore you so I’ll leave it at that.

              The focus in this thread is research and discussion about it. I believe critically important areas of MS research are grossly neglected because financial incentive is absent. For example, there are multi-billion dollar businesses built around modulating the immune system, DMT’s (Disease Modifying Therapy), expensive stem cell procedures are coming but very, very, very little money or effort is spent looking for the cause of MS.

              Look at the schedule of presentations at any MS conference (hundreds of studies are presented at every major conference) and you find almost no research directed toward finding the cause. Tons and tons of studies about treatment but so little on cause, every conference, every year. About 70,000 were expected at the ECTRIMS in 2013, just that one European MS conference. Yes, 70,000! Google it. MS treatments are big business indeed.

              So whenever a small group of researchers comes up with something notable about a possible cause for MS it is important that MSers and MS caregivers talk about it. Big business is going to ignore it and if profits are threatened they will discredit it. Unfortunately, that is how the world works.

              Thank God there are people like Pender. Thank God for Julian Gold and the small group involved with the Charcot Project. If patients don’t support and talk about what those small groups of dedicated researchers are doing then discovering the cause of MS will continue to be delayed.

              I want to encourage them. They have few supporters although they are doing the hard work and not benefitting financially as those working for the money interests. So be thoughtful, Katje, try not to belittle their work or those who support them; the life saved or disease cured may be yours.

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                #37
                I think you answered it already and i am not trying to belittle you or them. No need to be on the defense or snarky, however you need understand some of us had MS a very long time. I was DX when primrose oil was considered a treatment. I have seen all kind of theories, cures that would make national news and the papers over the years. Where are there so called cures now?

                I think it's an accurate guess you havent had it as long as me and some others on this board so you are most likely at the stage that the first time something like this comes up you get excited and feel like the end is near for your MS. Well I have news for you, I have been there many many times and look where I am today. Still on the MS forum and getting treatment. It's not to say there wil never be a cure for this disease and it's always good to have hope. But trust me, you're going to exhaust yourself putting so much hope into something done on a small group of people.

                We'll see how you feel about things 10 years from now.

                My guess is STC is probably the best option for most diseases including MS. That is where our future is.
                Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                  #38
                  I agree with you, Katje, that there has been a lot of 'snake oil' in this 'MS cure' story for many years. Doesn't it seem reasonable to study all methods to discover a good treatment? Even if that treatment doesn't work, then we know it doesn't work. I choose to hope that it works.

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                    #39
                    Myoak, thank you for all your great information. Your wife is lucky to have such an advocate -- so are we.

                    Bree

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                      #40
                      If I had progressive MS I would be following this more. MIS416 http://bionews-tx.com/news/news-tags/mis416/
                      Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

                      Comment


                        #41
                        Thank you, Bree, how very kind of you.

                        Katje, let’s see… how will I feel 10 years from now?

                        First, I will be relieved that I finally waded through the 3 studies on top of my pile… “Contribution of Vitamin D Insufficiency to the Pathogenesis of Multiple Sclerosis” http://www.medscape.com/viewarticle/780172

                        I’ve been tracking some EBV issues in cancer and discovering a fascinating convergence of behavior in EBV in cancer and EBV in MS. This study adds to the intrigue: “The Epstein-Barr Virus Nuclear Antigen-1 Promotes Instability via Induction of Reactive Oxygen Species” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3115054/

                        And the third study on my desk right now is, “Deficient EBV-Specific B-and T-Cell Response in Patients with Chronic Fatigue Syndrome” http://www.plosone.org/article/info%...l.pone.0085387

                        I have been kept away (temporarily) from these by another area of study which utterly fascinates me… that being the role cellular metabolism plays in both cancer and MS. I’m doing a great deal of reading at the moment gain understanding because proper cell metabolism is so very critical to good health.

                        Briefly stated I can say those MSers who are attempting to help control MS through various diets are on the right track. Bringing metabolism back to a more historic norm by restricting sugars is especially helpful. Benefits of a proper diet seem to extend even to the genome where EBV or HERV may not get activated within the DNA and thus do not have the opportunity to wreck havoc with the health issues they author once activated.

                        The practical application is this: Katje, you have had MS a long time but you have EDSS of only 1? That is fantastic! You are pretty healthy. There is a good chance that you are already managing the disease effectively through a good diet, sunshine everyday for Vit D, and a few quality supplements. If any of those 3 are lacking or could be improved you may have even more success. And, I believe LDN could be a huge help, also. Definitely don’t leave out alpha-lipoic acid with the requisite B-complex vitamin.

                        Continuing...In 10 years there will have been tremendous strides taken to treat and prevent MS. Much of that progress will come from small groups of researchers outside the venue of big business. Researchers like Pender in Australia, Walhs in Iowa, and Julian Gold with the Charcot Project in England. Will their work be accepted and acknowledged by the mainstream? Very unlikely, imho. Why? Because of money. Even Superman is no match for billions and billions of dollars. Wall Street expects the existing DMT’s for MS will increase an additional 40% by 2018.

                        But for MSers and caregivers who will dig for knowledge as for life itself, it is they who will overcome the disease by adopting truths discovered by Pender, Wahls, Julian Gold and researchers like them.

                        Perhaps, in 10 years all a MSer will have to do is pop an EBV anti-viral or get an EBV vaccine.

                        Comment


                          #42
                          Myoak - thank you for bringing all these studies to the forefront. I just want to mention that the url for "Contribution of Vitamin D Insufficiency to the Pathogenesis of Multiple Sclerosis" gives us a log in page for Medscape. Perhaps you'd like to try that one again?
                          1st sx '89 Dx '99 w/RRMS - SP since 2010
                          Administrator Message Boards/Moderator

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                            #43
                            TY Seasha,

                            The study, Contribution of Vitamin D Insufficiency to the Pathogenesis of Multiple Sclerosis can be Googled if someone doesn’t use Medscape. This March 2013 study is also free at: http://www.ncbi.nlm.nih.gov/pubmed/23483715

                            A quote from the abstract:

                            “…three environmental risk factors have been identified: past Epstein–Barr virus infection, vitamin D insufficiency and cigarette smoking. Interactions between genetic and environmental risk or protective factors may occur during the mother's pregnancy and could continue during childhood and adolescence and until the disease is triggered in adulthood, therefore possibly modulating the MS risk throughout the first decades of life. Furthermore, some clinical findings already strongly suggest that vitamin D status influences the relapse rate and radiological lesions in patients with MS…”

                            Comment


                              #44
                              Originally posted by Myoak View Post
                              TY Seasha,

                              The study, Contribution of Vitamin D Insufficiency to the Pathogenesis of Multiple Sclerosis can be Googled if someone doesn’t use Medscape. This March 2013 study is also free at: http://www.ncbi.nlm.nih.gov/pubmed/23483715

                              A quote from the abstract:

                              “…three environmental risk factors have been identified: past Epstein–Barr virus infection, vitamin D insufficiency and cigarette smoking. Interactions between genetic and environmental risk or protective factors may occur during the mother's pregnancy and could continue during childhood and adolescence and until the disease is triggered in adulthood, therefore possibly modulating the MS risk throughout the first decades of life. Furthermore, some clinical findings already strongly suggest that vitamin D status influences the relapse rate and radiological lesions in patients with MS…”
                              I moved to Dallas for 11 years and was out in the sun and swimming everyday. My Vit D was good. I also had zero issues with MS. I moved back to Colorado 3 years ago and my Vit D is so low a nurse told me it was the lowest she ever seen and I am MS sick all the time now.
                              Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

                              Comment


                                #45
                                There are a couple things I would mention about Vitamin D deficiency. First, it is fat soluble so in order to be absorbed you must take it with fat or oil but there is a myriad of foods which provide that opportunity. Each person in our household takes 5,000IU daily of D3Plus made by Biotech. The “plus” part of this particular vitamin refers to additions, notably Vitamin K2 having menaquinone-7 which provides the benefit of escorting calcium to bones and teeth rather than soft tissue such as arteries. Obviously, extremely important.

                                Women, anyone with osteoporosis or anyone concerned about calcification of the heart certainly wants calcium deposited into bones not soft tissue but many diets are deficient in the specific vitamin, K2, which helps that process. Keep in mind, if someone is on the blood thinner, Coumadin (warfarin) supplementing with Vitamin K will reduce the effectiveness of Coumadin and will lower your INR number.

                                Recently, my mother switched from Coumadin to Eliquis so she could supplement with K2 because of osteoporosis. She is on a blood thinner to prevent clotting because of irregular heartbeat. I should mention Eliquis is more expensive than warfarin so your formulary may require prior approval. Your doctor can help with that, if willing. But there are options besides Eliquis or warfarin, too.

                                Those attempting to boost their Vitamin D level and finding it difficult might want to try a different source of Vitamin D. They may have success with Vitamin D3 as cholecalciferol, imo.

                                Exposure to sunlight may be the best way to get Vitamin D. There are some scientists who believe the sun provides benefit to MSers beyond Vitamin D.

                                You can Google, “Interdependence and Contributions of Sun Exposure and Vitamin D to MRI Measures in Multiple Sclerosis” http://www.ncbi.nlm.nih.gov/pubmed/23385850
                                Quote, “Conclusions Sun exposure may have direct effects on MRI measures of neurodegeneration in MS, independently of vitamin D.”

                                But if the sun isn’t shining there is no alternative to diet and supplements to boost Vitamin D. I hope you can elevate your levels, Katje to a better range.

                                Two of the culprits in allowing activation of HERV (remember these are not viruses you get off a doorknob, these are viruses and virus particles which are in our genes, literally a part of us) are Vitamin D deficiency and EBV. At least a huge and growing body of scientific evidence points to those two culprits.

                                Also, according to the study above, sun exposure is critically important to MSers. Really an important factor.

                                Please remember, water alone and your body does not absorb Vitamin D, it is fat soluble. Good Luck!

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