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Thread: MS Cure?

  1. #1
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    Default MS Cure?

    Here is a video entitled "MS Cure?" which I found last night produced by ABCTC Catalyst and dated Sep 17, 2012. Leave it to TV reporters to try and make a claim it's a cure but don't dismiss it lightly! It is reporting on the "infectious theory" of MS and features Dr. David Wheldon reporting on the antibiotic cocktail he put together for his wife Sarah Longlands a few years ago. I have followed this theory off and on for the past 10 years.

    http://www.youtube.com/watch?v=EpMvDe8-qsM

    There are several doctors who are treating patients with this combination. Dr. Wheldon in the UK, Dr. Ram Sriram, neurologist at Vanderbilt University, Nashville, Tennesee and Dr. Powell on the west coast. Dr. Samboni is also featured with his CCSVI vascular theory which fits right in with an infection being caused by the Chlamydia pneumoniae infection which narrows the veins. There is an Australian doctor, Dr. Thibault, who has done a venoplasty on a patient and is now putting her on antibiotics. You can also go to other websites such as Cpn Help and ThisisMS and look under the antibiotic thread to follow Sarah's progress. She posts as Anecdote on both of these sites. David Wheldon's paper on "Empirical antibacterial treatment of infection with Chlamydophila pneumoniae in Multiple Sclerosis" can be found here:

    [url]http://www.davidwheldon.co.uk/ms-treatment.html (You will need to do a google search as it will not link)

    Another article published by PubMed, Epidemiology, 2003 Mar;14(2)141-7 follows: I was only able to pull up the abstract on this. However, the conclusion of this study is:

    These results support a POSITIVE association between Cpn infection and progressive MS. Since my husband has developed a lot of the same symptoms as I have had over the years, it made me start thinking about this infectious theory again. My focus will be on following up on getting tested for Cpn......if possible...and if my neurologist is not willing.... finding another doctor such as an infectious disease specialist who believes in the treatment.

    http://www.ncbi.nlm.nih.gov/pubmed/12606878

    After watching the video, reading Wheldon's paper, and reading the abstract....what is your opinion of this theory? ***Additional article found that is more up to date and published in 2010. It is 20 pages long but well worth the read.

    http://www.hindawi.com/journals/ipid/2010/273573/

    Gabriella
    Last edited by Gabriella7; 01-09-2013 at 07:12 PM. Reason: grammar
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

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  3. #2
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    Default Discussion

    By now, I was hoping to get a discussion started on the "infectious" theory postulated here. Several other MS websites contain patient accounts and much more information on being treated with antibiotics. Does anyone have an opinion or experience with antibiotics they would share here? I have experience with only one antibiotic and will share it if there is any interest. If not.....I will go elsewhere to share.

    Gabriella
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

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    Default

    It's an old theory, Gabriella and if it were true, then why isn't it making he national news. It hasn't really gone anywhere. Nothing to discuss, I guess.
    Love, Sally


    "The best way out is always through". Robert Frost







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  7. #4
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    Sally, sorry you feel it doesn't warrant a discussion just because it is below the radar of national news. It is an old theory but it has never received the funding for clinical trials because it uses drugs that are off-patent. It is being discussed on other sites such as ThisisMS and cpn.help where you will find pages and pages of discussion. You will find patients that have gotten better with the protocol. I think it deserves some investigation from docs as well as patients. The antibiotics are off patent and can be bought as generics so pharmaceutical companies are not interested and we all know where the neuros get their information and kick-backs....from the pharmaceutical companies!

    It doesn't make enough money for BigPharma. If it turned out to be the cure....just think how many people would be out of jobs!

    Gabriella
    Last edited by Gabriella7; 01-09-2013 at 10:09 PM.
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

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    Default Patient Stories

    Here's the patient stories who have been treated with the antibiotic cocktail and improved over time. This will be the last post on this topic as it seems no one is interested in exploring outside the box. Go to the site and look at the banner at the top and you will find "patient stories". Left click and read....You will find a lot of positive results people are willing to share.

    http://www.Cpnhelp.org

    Gabriella
    Last edited by Gabriella7; 01-10-2013 at 05:10 PM. Reason: Repair Addy
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

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    Default The Charcot Project

    Well here is another video about a group who is investigating the possibility that MS is caused by a virus specifically the EB virus. They are going to be treating patients with an antiviral oral drug to see if they improve. This is called "The Charcot Project" in honor of the physician who discovered MS.

    I hope we will see more and more research into finding the "cause" and treating the cause as well as developing new methods of diagnoses (such as blood tests)
    rather than just treating symptoms with more and more expensive drugs.

    http://www.youtube.com/watch?v=GTD1Bp-LZk4

    Gabriella
    Last edited by Gabriella7; 01-10-2013 at 09:45 PM.
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

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  13. #7
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    I remember there had been a member who followed antibiotic protocol. I don't remember the name. I don't think s/he posts anymore, but I may be wrong. At the time I don't think anyone else here was taking antibiotics as a treatment.
    I myself find the thought of taking antibiotics scary.

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  15. #8
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    Hi Gabriella,

    I did come on a couple of days ago and watched the first video. I also read the first patient's story and plan to read some more. I just watched the 2nd video.
    I have been sick for about two weeks and so have not been on here much.

    There use to be a man that would come on every now and then and report on his wife's progress with antibiotic therapy. I can't remember his name, but he always did the posting and not her. He use to measure things precisely and he would video his wife as she walked across their kitchen floor with him timing her.
    I could not notice any improvement, but he seemed to feel that they did which was the important thing. Wish I could remember his name, but I cannot.

    Anyway, I have not given it too much thought because I like to stay away from all antibiotics if possible. I discovered early on that my MS got worse after
    taking antibiotics. It begins while I am on them and my sensory symptoms (of which I have many) are so pronounced and so much worse that I can hardly
    stand it. Then my overalll MS seems to get worse. I do not know if the MS worsening is actually from the antibiotics or from the infection that I would have
    been taking them for. So, because of all this and the fact that I usually get very sick on my stomach when taking antibiotics I have read only a little about this
    type treatment. I did use to read all post that were on here about it - especially the one person that I mentioned. However, I did not think it was anything
    that I could do. In addition, I do not know of a Doctor who would give me this treatment. Certainly not one of the ones I have now. That could be a real
    problem. I could loose my Doctors that I now have and find that I am worse than I am now.

    This is not to be negative about this treatment. It is just that I do not feel that at my age (I am in my seventies) that I should be trying to go too far away
    from my current Doctors, as there are other things that need to be treated. While, MS remains my single biggest challenge there are other things that are and
    will continue to crop up along the way.

    If I knew something would help then I would take my chances on leaving my Doctors, but this is a very slow and long time treatment that may or may not work.
    But I did only read the first patient story and I do owe it to myself to read the others, which I will as soon as I can. Today, I am going out and try to get some
    groceries in.

    I am truly sorry that things have not gotten better for your dear husband. I know you are tired and frustrated.
    Last edited by Virginia; 01-11-2013 at 09:44 AM.
    Virginia

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  17. #9
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    Default Hope

    Thank you for your very thoughtful and helpful reply, Virginia. I wanted to get some feedback and you have contributed just what was needed to begin a meaningful discussion. I have had to take a lot of antibiotics over the years since I was in my twenties because of bladder disfunction and UTI's. I had surgery on my bladder which left me somewhat incontinent when I was 40 and it has just progressed to total incontinence over the years. In hindsight, the MS and MG played a big part in these disfunctions however, the doctors never referred me out for any evaluations and just treated the problems and did not try to find the cause. Come to think about it.....isn't that what they are doing now?

    I'm of the same mindsight with regard to antibiotics. Over the past six months I've had a recurring UTI and the urologist refused to treat me any more stating that he didn't want to create a "superbug". I went instead to my PCP's office for the urinalysis and culture. I actually saw the PA instead and he wanted me to try Cipro as he said the Macrobid that I have been on for months was not working for me. Cipro is counterindicated in "myasthenics" and I told him so he looked it up. We discussed it and I decided to try it anyway. It put me in the bed with extreme weakness and sleeping 16 hours out of 24. I go back on Monday to see if it cleared the bugs out of my system. It was strange that I broke out with hard bumps all over my head.

    There are potential side effects with taking antibiotics such as yeast overgrowth so one needs to take a probiotic whenever an antibiotic is needed. You can develop C. Diff of the intestional tract as well but at this time of my life I need some hope for myself and my husband so I am grasping at straws. If one looks at the possible causes of MS... an infectious cause is the most plausible. The auto-immune theory that is the basis of current research could be correct as well ...as our bodies are just trying to fight the bacteria/viral as they were created to do. The fact that research has not been able to pinpoint the bacteria/virus to blame just means that there might be multiple causes and science does not have the means to find the cause. However, I don't believe that our bodies suddenly turn on a MS switch buried in our genes without a reason. We do have to have a genetic predisposition for MS but there is also an environmental factor at work here which needs to be found.

    The poster you remembered is Ken who posted as "Notasperfectasyou". His wife was treated at Vanderbilt University by Dr. Ram Siram with the antibiotic protocol. Dr. Siram, a neurologist and Dr. Stratton, a microbiologist were conducting a clinical trial and developed the test procedure for detecting cpn bacteria as well as the antibiotic protocol for treating it. Ken posted videos of his wife while he held a stopwatch to time her 25 foot walks. I don't know how she has progressed since he last posted. I will have to see if I can find any of his later posts. There was another person who lived in Florida and drove up to Nashville every six months to see Dr. Siram. My husband and I went to see Dr. Siram but I didn't qualify for his study because of being already classified as progressive/relapsing. He did tell me he thought my MS problems were vascular and referred me to a doctor at Emory University in Atlanta. This fits in with the chlamydophila pneumoniae bacteria which causes narrowing of the veins. This is explained on the video with the patient in Australia and Dr. Thiboult.

    I am still waiting for the CCSVI studies to be completed and consider it too risky at this time. I hope this discussion has opened the way for more to follow.

    Gabriella
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

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  19. #10
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    If MS is caused bt a virus, Which I happen to think mine is, wouldn't anti Viral meds be more effective than ABs? I only want to reserved ABs for bug/germ type infections so that I won't over use them and they become ineffective.

    Just my opinion.
    Love, Sally


    "The best way out is always through". Robert Frost







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