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    #61
    Myoak, this thread is extremely interesting. I assume that the drug, isentress, has a positive track record treating HIV. It is interesting that it has been considered to treat MS. It will be interesting to see the outcome of the trials, in the spring of next year. The virus connection to MS may turn out to be the 'key'. Who knows ?

    Comment


      #62
      Myoak:

      I currently take 1 gram of Valacyclovir twice a day. That's the immunocompromised dosage, which I increased to once I started on Tysabri about two years ago and had some viral activity.

      Previously, I took 500 mg of Famciclovir twice a day, also an immunocompromised dosage.

      Comment


        #63
        Didn't read the entire thread. But, I know this.

        Betaseron was only marginally effective for me. Copaxone works much better for me. Whatever they discover doesn't change what meds work for me and what doesn't.

        It could be that multiple triggers contribute to MS, and multiple treatments can treat MS. However, they have already discovered one treatment that works well for me.

        ~ Faith
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment


          #64
          Thanks Special Kay for your response. As Jerry indicated, if a viral connection to MS is established it may become the “key” to future treatments.

          Kay, I’m reading chapter 17 in the Handbook of Clinical Neurology by Berger and quoting from page 362,

          “A nationwide Danish study of HIV-associated PML found that the incidence rates declined from 3.3 per 1000 person-years in 1995-1996 (pre-HAART era) to… 1.3 per 1000 person-years in 2000-2006 (late HAART era), confirming the decline in incidence of PML following the introduction of effective combination antiretroviral therapy”. End Quote.

          This particular chapter is on PML. Interesting that antiviral treatment decreased PML by 60% in HIV patients. PML is caused by the JC virus, period. Regardless of the population, AIDS, MS, SLE, or whatever.

          Of course, the biggest concern among JCV+ MSers on Tysabri is PML. I hope researchers will investigate the possibility antivirals may produce a similar reduction of PML in MS that they have in AIDS. Especially considering it isn’t the disease which is causing PML; it is the JC virus.

          Those on antiviral meds may be getting a benefit not currently recognized in MS. My hope is that electronic health records will someday be mined for this kind of information.

          It is unlikely, IMO, that anyone will attempt a clinical study to define the value of antivirals in avoiding PML in MSers on Tysabri but we can hope.

          However, a database could be mined.

          This is the kind of interesting idea which is the fruit of discussion. So much progress comes from people sharing thoughts and experiences. You never know what small thing shared may turn into something massively good.

          Thanks again, Kay. And best wishes to all following this thread… big hug to Faith.

          Comment


            #65
            Thanks myoak.

            ~ Faith
            ~ Faith
            MSWorld Volunteer -- Moderator since JUN2012
            (now a Mimibug)

            Symptoms began in JAN02
            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
            .

            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

            Comment


              #66
              Evidence points to a viral cause for MS.

              Herpes viruses HHV-6 and EBV are likely involved in the pathogenesis of MS. T cells responding to these specific herpes viruses are enriched in the spinal fluid of people with MS. A viral cause for MS is highly suggested by this recent study published Aug 2014.

              A complex role of herpes viruses in the disease process of multiple sclerosis.

              http://www.ncbi.nlm.nih.gov/pubmed/25148387

              BTW, any progressive MSer who may have opportunity to get into a Daclizumab trial may want to based on evidence such as this quote from the study's
              RESULTS:

              “Qualitatively, the intrathecal enrichment of herpes virus reactivities was more pronounced in MS patients. This enrichment was completely reversed by long-term treatment with the IL-2 modulating antibody daclizumab, which strongly inhibits MS disease activity.”

              We are on the verge of a new direction in the treatment of MS involving medicines which counter viruses. IMO.

              Comment


                #67
                Why haven't we cured MS yet?

                Enter that phrase on YouTube if the link I'm including is not allowed:

                http://www.youtube.com/watch?v=QMzViP-2f4A

                MS researcher, Dr. Giovannoni presents his thoughts.

                Comment


                  #68
                  There is no way to answer your question in a short sentence, Myoak. But your posts have clearly enunciated many of the comlexities of the politics of curing this MonSter.
                  Thank you for the posts. There could be a path that leads to a viral cause for this disease. I hope that the medical/ pharma establishment fully investigate this.

                  Comment


                    #69
                    There have been several studies that have seen a link between viruses and MS. The connection between EBV and MS and/ or HIV and MS has been documented in medical journals abroad. One patient with HIV was treated with an antiretroviral drug and saw an improvement in his/her MS symptoms. This should be an avenue to follow, I hope.

                    Comment


                      #70
                      The Charcot Project investigates the possibility of a viral cause for MS. Separately, new meds exploring that theme are being developed.

                      GNbAC1 is a new medicine under development which targets a human endogenous retrovirus. A poster presentation at the 2014 MS conference last month in Boston was remarkable; GNbAC1 is revolutionary, IMO.

                      I have never seen anything more promising for the treatment of MS. I could not be more optimistic that this will eventually soundly trump all existing MS meds. Sure, it is preliminary but this has several WOW components to me. And, it has small human trials behind it already.

                      The poster presentation on GNbAC1 made the following points:

                      1. THERAPEUTIC TARGET: HERV-W protein associated with Multiple Sclerosis, MSRV-Env
                      2. Environmental infectious factors associated with Multiple Sclerosis can activate HERV-W elements
                      3. MSRV-Env Protein persistently expressed in MS Patients and experimentally induces EAE
                      4. Pre-Clinical Efficacy of GNbAC1, a humanized IgG4 antibody neutralizing MSRV-Env pathogenic activity
                      5. Clinical trials with GNbAC1
                      6. Potential anti-retroviral effect against HERV-W
                      7. GNbAC1 Mode of Action within global pathogenic context
                      8. CONCLUSION AND PERSPECTIVES
                      Will GNbAC1…?
                      A. Inhibit chronically triggered inflammation
                      B. “Unlock” remyelination
                      C. while shutting-off intrinsic retroviral activation of HERV-W elements
                      D. without impairing immune physiological functions

                      Comment


                        #71
                        The following story says it better than I do.

                        Quoting the Business Wire story published at: http://finance.yahoo.com/news/geneur...090200211.html

                        “The Multiple Sclerosis associated retrovirus (MSRV) is a member of the HERV-W family and was initially isolated in cell cultures from patients affected with Multiple Sclerosis. MSRV is normally latent in the genome of individuals, but it can be re-activated by viral infections and other co-factors to express a pathogenic protein, MSRV-Env. MSRV-Env provides the missing link between the observation that viral infections are associated with the onset of the disease and expression of pathogenic factor (the MSRV-Env protein), which can then explain the inflammatory and demyelinating characteristics of MS.

                        By targeting MSRV-Env, GeNeuro expects to bring to patients a safe, long-term treatment that can halt progression of the disease, addressing both the inflammatory and demyelinating mechanisms relevant for all forms of MS. As the first drug addressing a causal factor of the disease, it will radically change the way MS patients are treated.”

                        They are obviously quite optimistic about their new drug, GNbAC1. It will take a few years to develop but it appears we are on the right track in treating MS by treating HERV.

                        Phase 2b trial is now being planned.

                        Comment


                          #72
                          This is huge news! Thanks again, Myoak, for your very informative postings and keeping us all up to date!
                          1st sx '89 Dx '99 w/RRMS - SP since 2010
                          Administrator Message Boards/Moderator

                          Comment


                            #73
                            Sorry to backtrack...

                            Myoak, that is some interesting reading!

                            Could we back up for a second because I missed something you said before:

                            BTW, any progressive MSer who may have opportunity to get into a Daclizumab trial may want to based on evidence such as this quote from the study's
                            RESULTS:
                            I'm probably overlooking something obvious, but can you explain why progressive MSers should have some hope for this to help? Is there some evidence that it might help us too? Thanks again!
                            PPMS
                            Dx 07/13

                            Comment


                              #74
                              Hi J-Bo,

                              You didn’t overlook something obvious, I did. Here is my error… This trial included people with RRMS, SPMS, and PPMS. I skipped over the chart pages and began reading on page 9. I posted before going back and looking at the entire article.

                              It was a complex trial but that is no excuse for my error. I thought all 3 groups, RRMS, SPMS, and PPMS were represented in the group receiving treatment. But only RRMSers received treatment. Both the SPMS (20) and PPMS (21) were entirely in the un-treated grouping. Therefore, the results I thought were applicable to all 3 MS groups were applicable only to RRMS. My mistake and I apologize for making it.

                              Your question was perceptive. Thank you for posting. The most interesting thing to me about this trial was that T-cells responding to EBV and HHV6 were found in spinal fluid of MSers. It is another clue that these two viruses lie at the crux of MS. We know that EBV and HHV6 are herpes viruses which cause HERVs to replicate.

                              Remember, HERVs make-up about 8% of the human genome. These are not viruses you get from something contaminated; they are in every cell of your body because they are in your genes and are thought to be remnants of infections from ages past. All 8 human herpes viruses can activate HERVs. The herpes viruses infect B-lymphocytes and can hide there in a latent state. At times, particularly during stress, they can re-activate.

                              A study presented at the recent MS conference in Boston compared brain tissue from deceased donors and found that “HERV and retroelement RNA sequences are enriched in cryopreserved MS brain compared with normal control specimens.”

                              “Conclusions: These data demonstrate that HERV and retroelement sequences are significantly overrepresented in these MS brain tissue specimens. This supports the hypothesis that expression of endogenous retroviral sequences is contributing to MS pathogenesis, potentially reconciling the autoimmune and infectious nature of this challenging disease.”

                              It looks as though 3 prime factors combine to cause MS. Infection, genetic susceptibility, and environmental factors (low vitamin d, smoking, etc.). If we can deal with infection and environmental factors; MS can be prevented in those susceptible and halted in those with the disease no matter if it is RRMS, SPMS, or PPMS. IMHO.

                              Many believe deficient immune response to infection begins the MS cascade. I agree.

                              Best to you J-Bo, Seasha and all.

                              Comment


                                #75
                                So interesting. Thanks for sharing, Myoak!

                                You sparked my interest awhile ago with the research being done on a viral cause for MS and your latest posts about the ECTRIMS conference in Boston are very encouraging. While I just underwent a stem cell transplant to hopefully halt the progression of my MS, I would love to see the day when MS can be treated with something as simple as anti-viral medication. I also hope that, should this trial overwhelmingly show the efficacy of this treatment, the FDA doesn't take years and years to approve it. Looking forward to your future posts on this subject, and thank you for your research and thoughtful comments on this.

                                Comment

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