Recently Diagnosed, antibiotics seem to help, ????

A forum for the discussion of antibiotics as a potential therapy for MS

Recently Diagnosed, antibiotics seem to help, ????

Postby gstein » Mon Jun 03, 2013 9:47 am

I am hoping somebody here might be able to help me with a little problem. I was diagnosed with MS a few months ago (MRI, bands in CSF), although I have apparently had misdiagnosed MS for a long time with my first likely attack in 1982 at age 22. Over the years starting in about 1996 I have noticed that Erythromycin seems to help the neurological problems left over by a bout of transverse myelitis (severe MS Attack?) in 1992. Unfortunately, I haven't been able to convince anyone in the medical community to help me follow through with a prolonged course of antibiotics. The walking problems, spasms, memory problems and all the other fun stuff have become bad enough that, a couple of years ago, I decided to keep shopping doctors till I found the answer, which is "Ideopathic Transverse Myelitis with subsequent MS". During the process, a urologist tried a round of Bactrim, then Flagyl, then Erythromycin to see if some of my problems might be bacterial. 10 days of Flagyl eliminated the leg jerks and improved balance and walking although the problems returned soon after stopping. Erythromycin helped as well, although not as much. Oddly, Bactrim when combined with a large dose of Ibuprofen makes a Huge difference until the Ibuprofen wears off, although neither one has any effect individually. Combining Bactrim+Ibuprofen, I was able to fly across the country without using the restroom or twitching and jerking, which felt very abnormal and out of the ordinary at the time. Bactrim + Naproxen has no effect, so it won't work overnight.

I was prescribed BetaSeron by my neurologist, but I am not particularly interested in managed decrepitude with side effects when there might be a better alternative. Given the slow, steady progression of my affliction, a trial of antibiotics would carry a fairly low risk when compared with the possible benefits. The problem is that that the doctors I have seen don't seem particularly inclined to consider my reports of improvement with antibiotics. Also, there seems to be very little research lately into antibiotic use with MS, although there seemed to be a fair amount of interest starting about 10 years ago. The research I have found on the subject doesn't seem particularly rigorous, although that seems to be true for MS studies in general.

People react like I am asking about Leatril or some other hoax treatment when I try to discuss it. Even Vanderbilt Clinic won't directly admit to research in this area, and the only reference I can find online from them is a brief statement on the "compassionate use of antibiotics in the treatment of MS". This brings me to my question for this forum, Is anybody still researching this subject, and is anybody still using antibiotics for treatment? Has this research reached a dead end? I am hoping somebody on this site knows something that will help me dig into the research on this subject.

Thanks in advance, George.
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Re: Recently Diagnosed, antibiotics seem to help, ????

Postby Loriyas » Mon Jun 03, 2013 9:58 am

George, where are you located? Can you make an appointment at Vanderbilt MS Clinic? If you do you will need to go to the appointment and request the antibiotic protocol. Worth the trip.
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Re: Recently Diagnosed, antibiotics seem to help, ????

Postby gstein » Mon Jun 03, 2013 10:35 am

I am in Houston, but I have the luxury of being able to go anywhere I need to. Vanderbilt only does referrals so I need someone to refer me for that treatment. I probably haven't talked to the correct people, but I couldn't find anybody that would admit antibiotic treatment is even available there so I don't know what I need to be referred to. I am going to see an the internist that originally suggested I have MS a year ago and I am going to try to convince him to contact Vanderbilt to find out what they can do and possibly refer me. I am going to give it a shot with the neurologist that made my diagnosis as well. Is there a particular department or person at Vanderbilt that knows about their protocol and what they can do?
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Re: Recently Diagnosed, antibiotics seem to help, ????

Postby Loriyas » Mon Jun 03, 2013 5:58 pm

George
I sent you a private message
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Re: Recently Diagnosed, antibiotics seem to help, ????

Postby MacKintosh » Mon Jun 03, 2013 9:53 pm

Why not see Dr. Michael Powell, in Sacramento? He's one of the few we can recommend publicly.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Re: Recently Diagnosed, antibiotics seem to help, ????

Postby SarahLonglands » Tue Jun 04, 2013 11:24 am

I agree with Mackintosh: I will send you a PM with his details!

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Re: Recently Diagnosed, antibiotics seem to help, ????

Postby Gogo » Sun Jun 16, 2013 3:30 am

gstein wrote:People react like I am asking about Leatril or some other hoax treatment when I try to discuss it. Even Vanderbilt Clinic won't directly admit to research in this area, and the only reference I can find online from them is a brief statement on the "compassionate use of antibiotics in the treatment of MS". This brings me to my question for this forum, Is anybody still researching this subject, and is anybody still using antibiotics for treatment? Has this research reached a dead end? I am hoping somebody on this site knows something that will help me dig into the research on this subject.

Thanks in advance, George.


Hi George,
good questions. I would like to get answers to that too. So, if you succeed with it, please share it with us.
I think the only place where you can get unbiased info is Vanderbilt. They seem reasonable people. They treated enough people in years to draw certain conclusions. It is not accidental that doctors did not want to prescribe abx for you for such a long period of time. As you know taking abx for years is not typical and not without risk, mainly not when the treatment efficacy is not proven and it is based on hypotheis.

It would be really useful finding out in which MS cases abx might benefit and what are the odds for it. It is just my personal feeling that if results were so stellar then not only Dr. Sriram at Vanderbilt were the only neurologist who apply this protocol. So good luck and let us know what you found out at Vanerbilt. Unfortunately, many of us are far from Vanderbilt and we have no chance to do so....Consult with doctors and not lay people here in tims who mix facts with faith. :)
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Re: Recently Diagnosed, antibiotics seem to help, ????

Postby SarahLonglands » Sun Jun 16, 2013 6:37 am

Hello George,

As a lay person who never mixes facts with faith I would say to you that he last I heard was that Mike Powell was starting a test,working with Stratton from Vanderbilt.

My opinion is that if your MS is bad, you would be better either selftreating or finding someone to treat you rather than wait for a trial. If you stick to a protocol, I can't see any reason not to do it yourself: I started nearly ten years ago, having develped MS when I was in my early twenties. When it turned rapidly from relapsing to progressive, I had no time to lose. I know that my husband was/is a consultant neurologist, but he didn't specialise in C pn: he just saw the sense in the research. I didn't believe him but he was right. Now I am able to work all day as an artist once more.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Re: Recently Diagnosed, antibiotics seem to help, ????

Postby SarahLonglands » Tue Jun 18, 2013 7:34 am

Hello George, I sent you Mike Powell's details a few days ago but you seem not to have seen it yet. Please have a look then ask me any questions you may have.
Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Re: Recently Diagnosed, antibiotics seem to help, ????

Postby brandonkaylasmommy » Sat Nov 16, 2013 6:00 pm

Yes....I believe ms is lyme disease. Have a chronic lyme history and ms diagnosis. Am having a so called ms exacerbation. Taking antibiotics now. Having a herx. This has happened before. I am reading these posts. I can tell u numerous times ive been on abx for being sick and ms has gone into remission. It makes sense. They dont know what causes ms. Docs suck and wont admit it and we suffer...bs on that.ill live on abx forever if it makes me well...it was so interesting to see ithers here that feel the same way.
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Re: Recently Diagnosed, antibiotics seem to help, ????

Postby SarahLonglands » Sun Nov 17, 2013 8:22 am

No, lyme disease can cause MS like symptoms but MS is started by an infection of chlamydia pneumoniae. Take a look at http://www.davidwheldon.co.uk/ms-treatment.html and also at http://www.cpn(no space)help(dot)org for people who are treating in the correct way.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
SarahLonglands
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