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    #46
    Myoak I found this in another forum, I thought it might be of interest to you. http://www.ncbi.nlm.nih.gov/m/pubmed/22433582/
    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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      #47
      Thank You, Katje!

      Great find and ty so much for passing it along. It opens another avenue for personal study with the possibility this supplement could be added to a daily regimen to downregulate EBV infection as this study suggests.

      The abstract is definitely worth posting for those interested in EBV and MS.

      “Lactoferrin (LF) is a multifunctional glycoprotein that plays an important role in native immune defense against infections, including human herpetic viruses, such as cytomegalovirus and herpes simplex virus types 1 and 2.

      However, its anti-Epstein-Barr virus (EBV, a γ-herpesvirus) function has not been reported in the literature. EBV is widespread in all human populations and is believed to be linked to tumorigenesis, such as lymphomas and nasopharyngeal carcinoma (NPC).

      We previously reported that LF expressed a significantly lower level in NPC tissues and was a likely tumor suppressor. Since EBV infection is a major carcinogen of NPC development, we investigated the effect of LF on EBV infection and found that LF could protect human primary B lymphocytes and nasopharyngeal epithelial cells from EBV infection, but had no effect on EBV genome DNA replication.

      LF prevented EBV infection of primary B cells mediated by its direct binding to the EBV receptor (CD21) on the B-cell surface. Tissue array immunohistochemistry revealed that LF expression was significantly downregulated in NPC specimens, in which high EBV viral capsid antigen-IgA levels were observed.

      These data suggest that LF may inhibit EBV infection and that its downregulation could contribute to NPC development.”

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        #48
        HIV and MS: Could a Link Lead to New MS Treatment?

        This post contains quotes from the March 20, 2014 article titled above by John Gever, editor of Medpage Today.

        “People with HIV appear to be at vastly reduced risk for MS.

        What does HIV status have to do with HERVs or MS? Because nowadays, essentially everyone with HIV in developed countries … is treated with antiretroviral drugs.”

        “… Julian Gold is an HIV specialist -- the Albion Street Centre, which he directs, is Australia's largest HIV outpatient clinic. His "aha" moment came when an HIV-positive patient who also had MS came under his care.

        "Within months of commencing HAART, all MS symptoms gradually improved. Within 2 years, his urinary incontinence was controlled to the extent that he stopped wearing pads and fecal incontinence resolved. He has had no MS relapses."

        The disease was not completely eliminated, the researchers indicated, because gadolinium-enhanced MRI scans made in 2002 continued to show lesions consistent with MS, even though clinical symptoms had largely disappeared.

        Two clinical trials now underway offer the first tests of an intriguing but still not widely accepted theory of multiple sclerosis -- that its trigger lies in human endogenous retroviruses," or HERVs.

        When the first full sequences of the human genome were released, one of the biggest surprises was how much of the genome appeared to encode retroviral elements… By one estimate, 8% of the entire genome was made up of such sequences.

        At first, these were assumed to be nonfunctional. But subsequent research established that... they can become activated to express proteins. Gavin Giovannoni.... in London, told MedPage Today that all herpes viruses, of which EBV is one, can trigger HERV expression. But, he said, "EBV is particularly effective in activating HERVs."

        Also, according to Gold, HERV expression has been linked to activation of both the innate and adaptive immune systems, providing a connection to the well-documented immunological and inflammatory features of MS.

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          #49
          Charcot Project.

          If we could all stop paying the drug companies for 1 month, I feel sure the collective revenue would significantly fund the Charcot project. Most of us would be no worse off !!

          Comment


            #50
            The first results from the Charcot Project should be out by early fall. Evidence points to a link between EBV, Retroviruses, and MS.

            An article titled “Multiple Sclerosis and Retroviruses: Is It Complicated?” can be found at: http://www.medpagetoday.com/resource...iruses/a/44119
            If the link doesn’t work Google the title.

            Quote from the article, “One line of research suggests that an infection with a bacterial or viral neurotropic agent—possibly in conjunction with vitamin D deficiency and/or other genetic and environmental factors—may trigger MS.

            Viral infections have been linked to inflammatory demyelinating disease in both human and animal studies. Organisms that have been studied as possible MS triggers include measles virus, human herpesvirus 6, human endogenous retrovirus (HERV), and Epstein-Barr virus (EBV). EBV has gained quite a bit of traction as an identifiable trigger, though a causal link between EBV and MS is far from established.

            Compared with people with other neurologic disorders and to normal controls, people with MS have higher levels of HERV. The production of MS-associated neurotoxins and antigens, as well as MS progression, has been correlated with HERV levels in some studies.”

            Treating MS someday with an antiviral is an exciting possibility. We should get the first report from the Charcot Project this fall.

            Comment


              #51
              LDN used as a DMT for MS (the theory and mechanism of action) and LDN used as a symptomatic treatment in MS is explained by Dr. Turel during an interview conducted by Dr. Daniel Kantor at the 2014 the 2014 Annual Meeting of the Consortium of Multiple Sclerosis Centers

              Dr. Turel explains the mechanism of LDN’s effectiveness in animal models of MS as being one of reducing proliferation of T-cells and B-cells. These cells cause damage in MS. Some of the most effective MS DMT’s work by reducing the activity of B-cells… Tysabri prevents B-cells from crossing the blood brain barrier and Gilenya sequesters B-cells in the lymph system. Another highly effective med although not FDA approved as a DMT for MS is rituximab, which kills B-cells.

              LDN, Tysabri, Gilenya, Rituximab all reduce B-cell proliferation by different mechanisms of action. Only two are FDA approved as DMTs in MS (Tysabri and Gilenya). The advantage LDN has is that it is non-toxic (does you no harm), it is inexpensive and if it doesn’t work for a particular individual (not all meds work for every person) at least your endorphins get increased on LDN so quality of life is improved (scientific study is available proving this point).

              To view Dr. Kantor’s interview with Dr. Turel you can go to YouTube and enter “What is LDN”. Hopefully, the mods will allow the following link since it was originated by MSWorld and Dr. Kantor: https://www.youtube.com/watch?v=f2iSWKypWks

              The Charcot Project is about treating MSers with an anti-viral drug (raltegravir called Isentress) to reduce EBV infection of B-cells and discovering what effect that has in MS. Just a teaser… I have heard a couple individual good reports but trial results will not be known until later this year. Very exciting, IMO.

              Comment


                #52
                Thank you Myoak !!
                You are always so informative
                Linda

                Comment


                  #53
                  Fantastic, useful information--my head is killing me today, so special thanks for the clear, succinct summaries!

                  Comment


                    #54
                    Thanks for the new information. Some light in the tunnel is always good !

                    Comment


                      #55
                      While I know this is probative of nothing, my initial trigger was one of the herpes viruses, HSV2.

                      This is not my theory, or my speculation, it is a fact verified by my docs at the time, including an HSV infectious disease expert. At the time I was exposed, I had not been exposed to any of the endemic herpes viruses: EBV, HHV6, HSV1), except varicella (chickenpox). This is rare for an American adult, and my immune system went crazy.

                      Because of the HSV2, I have taken antivirals the entire time I have had MS, upping the dose to an "immunocompromised" dose once I started on Tysabri.

                      Could this be why my MS has been silent for 8 years? Who knows? But personally, I'm happy to see the research continuing.

                      Comment


                        #56
                        Tremendously exciting! The possibilities cannot be overstated for treating MS.

                        Recruitment for the anti retroviral trial using raltegravir has been completed. The trial will close when the last recruit finishes the 6 month regimen in January. Results will be reported 3-4 months after closing. A report should be out April or May.

                        Raltegravir (Isentress) Pilot Study in Relapsing Multiple Sclerosis (INSPIRE)
                        http://clinicaltrials.gov/ct2/show/N...lerosis&rank=1

                        Comment


                          #57
                          HIV positive patients are 75% less likely to develop MS than others. The theory is that those HIV positive and on HAART (Highly active anti retroviral therapy) are protected from MS by anti retroviral drugs.

                          A study accessing one of the world’s largest linked medical data sets looked at 21,207 HIV-positive patients and 5,298,496 controls.

                          HIV and lower risk of multiple sclerosis: beginning to unravel a mystery using a record-linked database study
                          http://jnnp.bmj.com/content/early/20...7-d2a8dbcff92a
                          This is an open access article so the pdf is available in the link.

                          “This report is the largest record linkage study undertaken to investigate a possible association between HIV and MS. Our investigation revealed that having HIV, and presumptively being on HAART, provided a significant and potentially protective effect in relation to the risk of development of MS…”

                          “The first clinical study with Raltegravir in patients with relapsing remitting MS is already recruiting in the UK. Further investigation of our finding has the potential, after more than 170 years since MS was first described by Jean-Martin Charcot, to help reveal the etiology of MS.”

                          Comment


                            #58
                            Hi SpecialKay,

                            I found your post fascinating. There are many researchers who believe the 8 herpes viruses, including HSV2 and EBV play a primary role in the MS. Earlier in this thread the work of Michael Pender in Australia was discussed.

                            Essentially, Pender withdrew blood from a person with SPMS, exposed it to EBV vaccine for 6 weeks, and then re-injected the blood. Pender says this process produces T cells which kill EBV (a herpes virus) infected B-cells in the brain.
                            The patient responded exceedingly well. You can read more about the research at: http://msqld.org.au/homepage/latest-...r-breakthrough

                            SpecialKay, your testimony fits well with Pender’s research and theory that herpes viruses like EBV cause MS.

                            Your testimony fits well with the latest research which found that in those HIV positive MS occurred 75% less frequently than in the 5 million controls they looked at. Presumably because the HIV positive were on antiviral meds.

                            Some researchers postulate that virus pathogens (especially the 8 herpes viruses) produce super antigens which cause immune cells to respond by producing antibodies and reactions to neurological tissue. All part of the cascade of events necessary for demyelination, MS.

                            Your testimony also fits well with the idea propelling the Charcot project… a viral cause for MS. Stop the viruses which begin the cascade and you stop the result, MS.

                            I am stoked about the possibilities.

                            Thanks Again, really fascinating testimony, SpecialKay. It adds to a growing body of evidence this research is on the right track.

                            Comment


                              #59
                              Sorry, Myoak, it took me a while to see your response! And thank you for your interest, knowledge, and references.

                              Most of the herpes viruses are considered relatively "benign" since so many people have them -- it was hard for me at first to get doctors to even consider that I might be having a sustained reaction following the initial illness. Finally I found an ID guy at Roosevelt Hospital in NYC, Bruce Polsky, who had seen it before with new exposure to HSV in adults. Of course, the hard part with a viral-induced onset is that you don't want to give steroids and let the virus run amok.

                              Another thing of note, regarding herpes viruses, I had a close relative die from varicella pneumonia, which is basically the body's immune system over-reacting to another herpes virus. Perhaps a genetic susceptibility?

                              Comment


                                #60
                                An article you may find interesting is titled: “Study shows how EBV triggers MS”
                                http://www.news-medical.net/news/201...iggers-MS.aspx

                                Special Kay, one thought about genetic susceptibility is that it may get enhanced because… “EBV promotes genomic instability”. Google that phrase if you would like follow-up articles. Seems possible that other viruses in the herpes family may do likewise. Certainly seems as though feed-back loops or cascading events leading to MS are greatly influenced by the actions of these particular viruses.

                                May I ask about the antiviral meds you use? Valganciclovir is extremely expensive. May I assume you take famciclovir (famvir) and/or valacyclovir (valtrex)? And, you apparently take a maintenance dose, daily? I don’t mean to pry or be offensive, at all, just attempting to learn all I can for loved ones.

                                But it is just so fascinating to read your posts regarding antivirals. I am brimming with optimism about the future treatment of MS using them.

                                I can’t thank you enough for sharing so we can learn together and hopefully make discoveries which truly make a difference in battling the monster.

                                If you don’t mind I’ll pull a couple relevant quotes from posts above to re-emphasize:

                                1. Gavin Giovannoni.... in London, told MedPage Today that all herpes viruses, of which EBV is one, can trigger HERV expression. But, he said, "EBV is particularly effective in activating HERVs."

                                2. Julian Gold is an HIV specialist -- the Albion Street Centre, which he directs, is Australia's largest HIV outpatient clinic. His "aha" moment came when an HIV-positive patient who also had MS came under his care.

                                "Within months of commencing HAART, all MS symptoms gradually improved. Within 2 years, his urinary incontinence was controlled to the extent that he stopped wearing pads and fecal incontinence resolved. He has had no MS relapses."

                                Thank you, Special Kay, for caring and posting.

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