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Investigating Chlamydia Pneumoniae and MS

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    #31
    MacIntosh....been reviewing the same info and will continue to do so. If interested also might want to look into "Why is There No Multiple Sclerosis at the Equator" by Jeff Bowles.

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      #32
      Ga dancer,

      Your doctor might be on the right track... "He said he actually believes that most diseases come from bacterial or viral causes and that is why he chose Infectious Disease as his specialty. IVIG has helped both Parkinson's and Alzheimer's, and there may be a causal relationship to bacterial or fungal and neurodegenerative diseases."

      If the target of the immune attack in MS is something in the CNS, perhaps EBV virus or infectious microbe then it would make sense to get rid of it if possible. IMHO, there is a great deal of evidence which suggests the MS saga begins with infection.

      Check out this link and the analogy: http://www.msdiscovery.org/forums/di...y-or-secondary

      The train wreck photo and Dr. Stys take on it ... " The train wreck image is analogous to a human pathology slide—and as valuable as the analogy is, it should be interpreted with caution. Step back and pretend you are an investigator from another planet who beamed into the crash site. You see the guys in red have infiltrated the site, like T cells penetrate into the brain. If you look closely, you see some of them with welding torches. It's reasonable to interpret that these guys are running around trying to wreck what remains. Maybe they even got together before the train arrived and sabotaged the tracks.

      Then you talk to someone who was there before it happened. Your witness noticed a loose rail and saw the train leave the tracks. You think, wow, that is so different from how I was thinking. When you press, the witness reveals that there weren't any guys in red when the train left the tracks. You can say the witness got it all wrong, or maybe the witness was lucky to be in the right place at the right time."

      Maybe an infection is what causes derailment of the immune system in MS and perhaps treatments to date have only dealt with the aftermath of derailment not the cause?

      Keep us informed. Information exchange is always helpful but never more critical than when we have to research treatments individually because pharma and related entities deal primarily with research which promises to lay the golden egg of patent profits.

      Stay strong. Expect the "nattering nabobs of negativism" to come out of the woodwork and act their part, as always. There are plenty of others with an open mind who are very much interested in the Wheldon protocol and personal testimonies involving it. Stay in touch.

      Comment


        #33
        I feel like IVIG has been doing wonders - I actually crawled under a bannister and up and around people in bleachers when we went to Gallery 63 (anyone ever watch Auction Kings, that is the place). Anyway, I said to my husband before I started towards the only seats in the place that needed someone strong and flexible to get there that I was about to be embarrassed. But I was able to do it just fine!

        I received a call from NIH at the Primary Immune Deficiency Clinic in Bethesda because I have been referred there to be studied. I'm going - its free, they provide a room free for 3 days and I have to pay to get there. We got seats on Megabus for my husband and myself for $56 round trip. They will pay my travel if they need me for future studies.

        I am really pleased with the function I have and have been enjoying my improvement. We go dancing, have been traveling and do 6 hours of water aerobics a week. I just purchased a used coaster bike, wide tires, no hand brakes just a simple bike and I am able to balance on it.

        I don't want to stop IVIG and hope that this continues. I'll take my improvement and if that is all there is I will savor this time, I no longer take walking for granted.

        I'll let you know what happens after my NIH appointment which is not until the end of October.

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          #34
          Eye opening

          Wow. I've been reading this thread with great interest since stumbling across a study in Science Daily (October) conducted by Weill Cornell Medical College and The Rockefeller University exploring if the bacterium Clostridium (C.) perfringens type B may be a trigger for multiple sclerosis. Another possible bacterial connection to MS.

          Thank all of you who are contributing to this thread. All of us living with this disease need to be open minded and think outside the Big Pharma box. All I ever hear is we don't know what causes MS, so why should we blindly accept that these same people know all the answers as to what can 'manage' it as best as possible? My MS also reared its ugly head when I had a bacterial infection 2 1/2 years ago.

          I've failed on two drugs already (Betaseron and Tecfidera). My neuro wants me to try Tysabri next. I wish I could find a doctor in my home state (MA) who might be open to something like IVIG or the Wheldon Protocol. If anyone knows of anyone in New England, please let me know!

          Comment


            #35
            Hi Carole,

            Thank you for being interested in the topic of infectious triggers for MS! We know that low vitamin D is a contributing factor and infection could be another. Be sure to check out the Charcot Project thread for more on possible causes.

            You mentioned your neuro may suggest Tysabri. First, I’m sure they will do a blood test to check JCV index number. There are several threads about that. Bottom line… if you are JCV negative or have an index number below .9 your risk of PML is extremely low, almost non-existent in the first two years of Tysabri.

            But if you are interested in the Wheldon protocol you would have to look for alternative therapy doctors. And, you might have to learn enough to educate even an alternative doctor about the protocol, no easy task. But at least not impossible as it would be with a traditional neuro.

            Another therapy some MSers are using is LDN. Last month I attended an LDN conference in Chicago. The first presenter was Dr Pradeep Chopra from Brown University, an Ivy League school you are no doubt familiar with being from NE. He spoke extensively on LDN’s inhibition of pro-inflammatory cytokines.

            Last week a study came out which highlighted demyelination induced by pro-inflammatory cytokines when they are present in the space above the brain. Because LDN demonstrates effectiveness to inhibit these cytokines, it appears LDN could be of benefit in several types of MS; RRMS, SPMS, and PPMS.

            Here are 3 relevant studies supporting that hypothesis, if you are interested. Of course, LDN would not be in the domain of most neuros. You would have to look elsewhere. The best site, as far as scientific data goes is ldnnow, IMO.

            All 3 of these studies indicate brain inflammation is a big problem for MSers. Medicines, like LDN, which reduce pro-inflammatory cytokines could be a huge help. Won’t repair damage but may help prevent damage, such as demyelination; or at least slow down the process.

            1. Brain. 2013 Oct 30. [Epub ahead of print]
            Cortical grey matter demyelination can be induced by elevated pro-inflammatory cytokines in the subarachnoid space of MOG-immunized rats.

            A substantial proportion of cases with secondary progressive multiple sclerosis have extensive inflammation in the leptomeninges that is associated with increased subpial demyelination, neuronal loss and an exacerbated disease course. However, the mechanisms underlying this extensive subpial pathology are poorly understood. We hypothesize that pro-inflammatory cytokine production within the meninges may be a key to this process.
            http://www.ncbi.nlm.nih.gov/pubmed/24176976

            2. Brain. 2012 Oct;135(Pt 10):2925-37. doi: 10.1093/brain/aws189. Epub 2012 Aug 20.
            Meningeal inflammation plays a role in the pathology of primary progressive multiple sclerosis.

            Our data suggest that generalized diffuse meningeal inflammation and the associated inflammatory milieu in the subarachnoid compartment plays a role in the pathogenesis of cortical grey matter lesions and an increased rate of clinical progression in primary progressive multiple sclerosis.
            http://www.ncbi.nlm.nih.gov/pubmed/22907116


            3. Brain. 2011 Sep;134(Pt 9):2755-71. doi: 10.1093/brain/awr182. Epub 2011 Aug 11.
            Meningeal inflammation is widespread and linked to cortical pathology in multiple sclerosis.
            Our findings suggest that meningeal infiltrates may play a contributory role in the underlying subpial grey matter pathology and accelerated clinical course (of MS).
            http://www.ncbi.nlm.nih.gov/pubmed/21840891

            Best to you, stay strong and investigate.

            Comment


              #36
              Thank you, Myoak, for all your excellent posts and information. I should have added that I was first diagnosed as being vitamin D deficient (my level was 17) and, when my neuropathy spread up to my saddle area, my neurologist ordered brain and spinal MRIs. LDN is very intriguing. I've been reading quite a bit about it but, when I asked my 'second opinion' neurologist about it (I wanted another professional to tell me what my second tier drug options were), she said that it 'only helps with some MS symptoms' but has no effect on the disease progression at all. Hmmn. I'll check out your LDN link to see if I can find someone local who might prescribe...I've got nothing to lose and, based on my latest brain MRI, may have something to gain. I will definitely read about the Charcot Project as well. Also, thanks so much for the info about Tysabri. I told my neuro I would consider going on it short term but don't want to be on it for life. Let's hope new research on viral and bacterial causes will give us better options in the future!

              Comment


                #37
                Originally posted by CaroleK View Post
                Thank you, Myoak, for all your excellent posts and information. I should have added that I was first diagnosed as being vitamin D deficient (my level was 17) and, when my neuropathy spread up to my saddle area, my neurologist ordered brain and spinal MRIs.

                LDN is very intriguing. I've been reading quite a bit about it but, when I asked my 'second opinion' neurologist about it (I wanted another professional to tell me what my second tier drug options were), she said that it 'only helps with some MS symptoms' but has no effect on the disease progression at all. Hmmn. I'll check out your LDN link to see if I can find someone local who might prescribe..

                I've got nothing to lose and, based on my latest brain MRI, may have something to gain. I will definitely read about the Charcot Project as well. Also, thanks so much for the info about Tysabri. I told my neuro I would consider going on it short term but don't want to be on it for life. Let's hope new research on viral and bacterial causes will give us better options in the future!
                I just wanted to chime in here. I am a regular researcher of MS news and clinical trials taking place as well as different studies going on around the world.

                I have been on LDN or Low Dose Naltrexone since 2007. LDN does help with some symptoms, but I still have other symptoms. What I can tell you is that I do not have any new lesions on my brain or spine since 2008, shortly after I started taking the LDN.

                I started taking it in November 2007, so once in my system and working it was 2008. I just had new MRI's done in August of this year 2013 and I still do not have any new lesions or any enhanced lesions. With that being said, I do now have black holes or more black holes than I initially started with.

                I have progressed as far as symptoms of right sided weakness go but I am still mobile and for now am still working. Because my damage was found so late, basically what they found in 2007 on my MRI's was a ridiculous amount of damage already done in all areas of the brain.

                I had been complaining about symptoms for decades but no one would order an MRI until 2007, by that time so much damage had already occurred that was not treatable. But the LDN has kept me from developing any more lesions that that. I am now getting mood swings from lesion placement/damage that had previously occurred.

                I have done a lot of research on both the Chlamydia Pheumoniae infection as well as all of the other possible virus/bacterial infections currently being studied. Not all of the people have Chlamydia Pheumoniae or CPN infection. There have been people with MS that have tried the Wheldon protocol and failed. I am with the person who said it is a SUBSET of people with MS that have this issue, but certainly not everyone.

                The key I believe, in my opinion, is to do more genetic research to find out which viruses and bacterias each of us with MS have. And treat those if treatable and see where a person ends up.

                I just recently read another new article about another new cross breed infection they are relating to the blockages found in CCSVI. This cross breed makes something of a net matrix microscopic in size that blocks the veins. They related stringy spun blood to this infection and also mentioned that magnesium creates a shield or protection over the matrix. So magnesium supplementation does not help with this particular infection. But again, it's a SUBSET and not ALL the people with MS.

                What I am glad about is there is research for many of these viruses and bacteria's being studied all over the world. There are people looking in to this - I just hope it gives us some answers soon.
                Hugs,
                Danielle
                LDN'er since 2007

                Comment


                  #38
                  Thank you, Danielle, for chiming in on this one too. I'm glad to hear that LDN has helped, but I guess there is always residual damage left for many of us. The bottom line with this crazy disease is that what works for one (including possible treatment for a bacterial cause) may not work for another person. I guess that continues to be the challenge. I agree: it's great that it's a heavily researched disease. Let's hope all this research pans out in more effective, less harmful treatments and, maybe someday, a cure.

                  Comment


                    #39
                    Really an outstanding post, Danielle!

                    I am often impressed that those using LDN as part of their therapy (knuckle, kronk, Jerry D, you, and a bunch more), seem especially rational and articulate. Perhaps just a coincidence, but perhaps not. Thank you, Danielle for taking time to share your personal experience.

                    IMO, you are correct that not every MSer has CPN infection. Just like not every MSer has low vitamin D. The question of individual susceptibility (maybe genetic) comes to mind. What triggers MS in one person may trigger MS in some others but not all others. Some MSers may respond to Wheldon’s protocol because for them CPN may be triggering MS. Others may respond to Vitamin D supplementation because their MS was triggered by a low level of that vitamin.

                    CaroleK, I hope you caught the Oct.3 story at medpagetoday.com, “Higher Vitamin D Levels Linked to Less MS activity”.

                    “Higher serum 25-hydroxyvitamin D levels early in the course of multiple sclerosis robustly predicted a lower degree of multiple sclerosis activity, MRI lesion load, brain atrophy, and clinical progression over 5 years”

                    Primary source: European Committee for Treatment and Research in Multiple Sclerosis
                    Source reference: Ascherio A, et al "Vitamin D as a predictor of multiple sclerosis activity and progression" ECTRIMS 2013; Abstract 96.

                    I know one neuro who takes 5,000 IU of Vitamin D daily as does his wife and children. Some people have talked about taking that amount in the context of possibly avoiding MS.

                    Occasionally, someone with MS will express concern that a family member will also get MS. And statistically MS does happen more often within families where one has MS than in the rest of the population. If the original MSer had low vitamin D then it probably is a good idea for family to make sure their vitamin D levels are not low. In any case, it seems important to take a good deal more Vitamin D than the RDA; and appears exceedingly beneficial for MSers.

                    Perhaps there are several different triggers for MS.

                    A partial list of infectious agents implicated in MS, including Chlamydia pneumonia, human herpes virus, Epstein-Barr virus, Retrovirus and the evidence for implicating them can be found at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2924524/.

                    Certainly would not count stress out of the equation, either.

                    Again, thank you so much for caring enough to take time out of a busy day to share with us. If kindness is the highest form of intellect, you are up there with the best, Danielle. If there is one pleasure involved with MS it is in meeting so many remarkable people.

                    Keeping you in my thoughts and prayers as I do you Carole, especially now as you make treatment decisions.

                    Comment


                      #40
                      My Neuro wants me to continue using the ABX therapy of Dr. Wheldon's

                      even though I just completed LEMTRADA infusions! He says that he believes it's doing SOMETHING, just not enough. I have been on the ABX therapy for 2 years. I haven't had any new clinical problems but I have become SPMS and I had been waiting and waiting for the LEMTRADA to come out and didn't want to go on any new DMT in the meantime. We will see what happens staying on the ABX (Doxycycline and Azithromycin, although I haven't taken the Metronidazole fungicide due to taking Valtrex for 60 days after infusion - I thought it would be too hard on my liver/kidneys). Will advise!

                      Comment


                        #41
                        I am sorry, please clarify

                        Originally posted by Jules59 View Post
                        even though I just completed LEMTRADA infusions! He says that he believes it's doing SOMETHING, just not enough. I have been on the ABX therapy for 2 years. I haven't had any new clinical problems but I have become SPMS and I had been waiting and waiting for the LEMTRADA to come out and didn't want to go on any new DMT in the meantime. We will see what happens staying on the ABX (Doxycycline and Azithromycin, although I haven't taken the Metronidazole fungicide due to taking Valtrex for 60 days after infusion - I thought it would be too hard on my liver/kidneys). Will advise!
                        Would you please clarify what you mean that you have no new clinical problems but have become SPMS. I thought the transition to SPMS involved quite a bit of disability. Which is how they gauge the transition to SPMS. I'm sorry, I don't understand that. Thank you.
                        Hugs,
                        Danielle
                        LDN'er since 2007

                        Comment


                          #42
                          I wanted to open this back up to talk about this. I recently came upon this information as well. I had pneumonia before, growing up. I was sick all of the time during a period of time in my childhood.

                          Anyway, this topic is interesting to me. I like what someone else said about discovering which infectious agents are in each of us, treating that and seeing where we end up.

                          Has anyone found any new research on this subject?

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