This Is MS Multiple Sclerosis Community: Knowledge & Support

A new abstract is available ahead of article print on pubmed. Copied below...

We MSers interested in research frequently complain about the fact that MS researchers are not thinking outside the box and recognizing that MS is not EAE, that it is possibly infective, and that research continues to focus on lesions and proprietary MABs to knock out immunity rather than what MS actually IS.

This paper is focused on MS from a different perspective. It may be the beginning of a new era in MS treatment. Obviously, D Wheldon (who was has published medical literature before, by the way) is the doctor who, devastated by his wife's MS diagnosis and determined to find a cure, searched and studied until he found the research at Vanderbilt by Sriram and Stratton on MS. After evaluating this theory with his extensive medical background (including study of Pathology, Medical Microbiology and Neuropathology at the Radcliffe Infirmary, Oxford as well as an active medical career as a practicing Consulting Microbiologist) he found it very plausible and treated his wife via the particular version of treatment that he adapted and which is found here http://www.davidwheldon.co.uk/ms-treatment.html.

This woman who was SPMS had her symptoms reverse with treatment and is still recovering function 2 years later. She posts as Anecdote here on thisisms. Stratton and Wheldon ended up collaborating and sharing their learnings and understandings as they studied and developed ideas and eventually were invited to co-publish the theory in Trends in Microbiology, the abstract of which is quoted above. This is peer reviewed material. But more than that, this theory has at it's heart
a medical researcher whose life was personally touched by MS; someone for whom the outcome was life or pseudo life for his dear wife. How many times have I read here that somone wished the researchers would get MS THEN we'd see progress.

Well, this theory has that kind of motivation at it's heart. Though at this point it remains a theory as it has not yet had a clinical trial of it's effectiveness, and treatment of MS using it's precepts is based on anecdotal evidence that it may help (such as Anecdotes recounting of the progress here in the regimens section)it is available today with the help of a willing MD for the person who finds themselves unhelped by current "approved" therapies, as I did.

So wherein lies the possibility that CPn causes MS? This paper discusses the mechanisms by which it may occur, and the possibilities are related to understanding of the chlamydia pneumoniae germ itself (something foreign to neurologists) combined with understanding of the neurobiology of MS. These talented researchers have put two and two together and have come up with an answer that may be the "h pylori of neurology". But heres a little tidbit, unless your doc is interested in such ideas, it is not likely a neurologist subscribes to Trends in Microbiology as he does not see it as pertinent to his practice because germs are simply a non issue in the brain because of the BBB---or so they think.

The theory is interesting!
marie

Marie,

Thanks for your post.

I like you believe that MS is an infectious disease, but my gut feeling (only that) is that it is caused by a virus, probably EBV.

My problem with Cpn is:



So someone starting on the abx regime must take a leap of faith that Cpn is involved and that they are in the subset who would benefit.

Cpn may well be the infectious agent in a subset of MS, but I can't understand why it has not been found in the tissue of MS patients.

My other issue, is that it has sometimes been represented as 'the' cause of MS and individuals have been encouraged to take the abx route. Some have reported good results, but I am also seeing the reporting of not so good results e.g. a recent post:



I just think that a full picture of the abx protocol should be given to those considering it e.g. it might not be the cause, it might be the cause in a sub-set of MS patients (3%, 20%??), and that some on the regime may not see the dramatic results reported by some.

I think the MS research world is coming to the view that one of the primary events is the death of oliodendrocytes. I think the abstract is spot on with:




The sooner the experts find the infectious agent/s the better.

Ian

Thanks, Marie, for posting this excellent resume. There is one little error I would like to point out, though: I have now been on treatment for somewhat over three years, not two, having started in August 2003. I remember spending the months coming up to the two year mark slightly on edge, because I knew that the people with secondary progressive disease on the first campath trial had all started to deteriorate before two years were past. I kept looking for this in me, but not seeing it. This only bothered me because I live in the Addenbroke's catchment area, and my neurologist comes over from Cambridge to hold outpatients sessions here. I had already fallen out with him because I refused to go over to Cambridge to see the MS nurse. I didn't see the need. All I had been offered was a few days at Addenbroke's for IV steroids, should the need arise, and I didn't like just being written off at the age of 45 because I had progressive disease.

Sarah

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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.

Bromley, you have completely taken Alex's quote about her walking out of context and anyone who wishes to see why she said that should look here, under the posting "One and a half years":

http://www.thisisms.com/ftopic-898-270.html.

As many people have CPn antibodies as EBV antibodies, probably more and you don't show signs of recovery from an EBV infection by taking doxycycline. Likewise, doxycycline has some anti-inflammatory properties, but apart fro the fact that inflammation is not considered to be a major part of SPMS, once, like me, you are on intermittent therapy: no antibiotics for two months or more at a time, you should start showing a decline after a couple of weeks. I never do, but I continue to slowly improve.

Sarah

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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.

Sarah,

I don't think I have taken a quote out of context - it was not my intention.

My point is that some may see no benefit from the abx regime because they are not in the subset (your husband's words) whose MS is caused by Cpn. If they are not in the subset, and are seeing no improvement, then it would be wrong to suggest that they continue taking abx. I'm assuming that you agree with your husband about only a subset of MS cases being caused by Cpn.

As I have said before, it would be good to hear about other dramatic improvements in EDSS as reported by Katman and yourself. And indeed, cases where those follwoing the regime have seen no improvement. This might give us some sort of idea of what proportion the subset is likely to be.

I am only asking the same questions as I would ask of any treatment regime. The sooner the abx protocol is formally trialled the better. I for one will be thrilled when the infectious agent/s (EBV, Cpn etc) are identified.


Ian

Maybe this is another reason for taking Vitamin D supplements that will fit into the infectious cause camp:

The following is taken from a paper, "Vitamin D in preventive medicine: are we ignoring the evidence?", in the British Journal of Nutrition (2003), 89, 552-579. The author is Armin Zittermann, Department of Nutrition Science, University of Bonn, Germany.

Lynda, yes, you are quite right here, vitamin D is essential. I still take 4000 iu a day: the world would be a healthier pace if every body took at least 1000 iu a day. You can't sit out in the sun for too long whilst taking doxycycline, but that is only for a year or two. I am tall and long boned, but have never broken a bone although I have fallen a few times. Maybe this would have been different without the vitamin D supplementation.

Bromley, you have taken that quote out of context and you know it. Alex is carrying on with the regime and knows she has benefited. She was having an off day for other reasons which I won't post here, just read the thread. The only people to have been on the regime for anything like as long as me are Katman and LifeontheIce. 'Ice, a physician herself is asymptomatic, Katman (Rica) still limps a bit, but what is a slight limp compared to what she was like. Somedays I limp a bit, some days I look as though there is nothing wrong. I can paint all day (large canvases) and I don't need glasses.

Do you want to know why Stratton, Sriram and David refer to "A small subset"? It is because of a need to actually get into print in the first place. David did a small study of local people he treated who he saw regularly:

http://tinyurl.com/mmsy6

Seven out of ten people responded to treatment, two out of ten were doubtful as to whether they even took the antibiotics. That is quite a large subset to my mind. It was about eighteen months ago.

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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.

Hi Sarah,

Thanks, so much, for the draft copy of David and Stratton's article that you had sent to me!

It arrived just in time for me to print a copy to take with me to my eye doctor. I had seen her a week ago, and she is just another to add to my list of people who can hardly believe how much I've improved, since starting Samento (a quinolone, like Cipro) and Doxycycline. Seeing, for herself, that my optic nerves now appear so healthy, and that I longer walk with my cane; she wants to recommend my alternative GP and antibiotic protocols to her own patients.


She was ecstatic when she saw the article, and immediately started to read it. This is because she has MS patients with optic neuritis who are desperate, and not responding to standard treatment. And, because she has seen patients with macular degeneration, with intense pain; who were diagnosed with CPn infection. And, treated successfully with Doxycycline, too!

Congrats to David, and many, many thanks to you both

Minai

Sarah, you wrote,

I think you are quite right--you have probably never broken a bone because you continue to keep bones strong with D. To take sentences from Zittermann's above mentioned paper's abstract:

Though bone health is the only approved area of use for Vitamin D at this time, the suspicion of involvement in these other areas may give us more reasons to add D. I'm glad to hear that you are taking it. Here's to D!!! Drink up!!! (Shouldn't that be: "Swallow down!!!"?)

Everyone doing every treatment goes on a leap of faith. If you are going to use Campath then you are taking a leap of faith that such suppression will not harm the unknown cause of MS. If it is infectious, then the long term consequences will not be so good, though right now the long terms are unknown. Don't kid yourself, traditionals are a leap of faith too.

The good thing about antibiotic treatment is it is completely reversible and reasonably benign. If you decide after treatment for a year that it is not helping you personally, you've lost that time, but nothing else, and certainly if you personally had a big exacerbation on treatment you could of course go to prednisone or whatever your doctor wanted for that. Using abx does not preclude other treatment.

But taking some immunosuppressives we see some people with profound lymphopenia at 7 years after treatment (Campath trial)or other serious consequences like cardiotoxicity (novantrone). These things are not benign nor necesarily reversible. I have had MS for 15 years. I am personally glad I did not do something like that in my first year or two out of fear for what MS might do to me because I am really glad I am here today and healthy-I have no atrophy at all by the way-, and I find it incredible that traditional medicine has gone the route of drugs with potential side effects so severe they could kill for benefits that may not have any meaning (reduced lesions? please).



Yes it has been cultured by a number of people in MS brains, but persistent infections (one potential phase of a CPn lifecycle) are probably not culturable at all. This paper references not ony people who found CPn in MS brains but also people who did not. And as this is a peer reviewed paper, you can trust that the papers were not misquoted or misapplied as we often see in "alternative" treatments. You can also trust that every paper referenced was also peer reviewed material. IT is good, solid science. The point is that whether you personally believe it or not the scientific community at least has said this is plausible as a theory. Remember, autoimmunity is a theory too.

And it should be said that every drug offered for MS helps a "subset" I have yet to read any research that shows 100% of people were helped by anything, or that 100% of people had any feature of MS (not even oligoclonal bands are universal). For crying out loud, the much anticipated tovaxin has been tried on something like 15 people! and only half of them benefitted! It's the internet blog of a single very young (thus more healable) person whose gains have us quivering with anticipation! It's still in trial, and frankly I am more interested in tovaxin than other things as it it appears reversible (repeat injections are required every 6 months) and is seemingly benign, though efficacy is still to be determined. The long term copaxone material had a 53% drop out at the review which was 8 or 10 years. SO over those years, 53% in the trial realized it was not actually helping and they dropped it. Seems like a subset to me. How many of them took it for long years before deciding it was not for them? How often were they encouraged by their neuro to keep at it (I have been) even in the face of deterioration? Adequately trialled and tested, it still does not help everyone. SO objecting that abx helps a subset is really off topic because nothing helps everyone. Furthermore, no one knows if ANYTHING will help them til they try it no matter what it is.

This is still not a proven approach because we need blind trials to get that level of what we call proof. Anecdotally, some people have had dramatic results others less so, but IMHO everyone ought to have a chance to hear about it and try it if they feel it might be right for them since it is available now.

I think the critical thing to take away from this and to understand with the publication of this paper is that peer review has supported the theory as plausible. stuff like "but everyone gets CPn so it can't cause MS" and "But this researcher over here did not find CPn in MS brains so it can't be right" are all statements made in ignorance of the lifecycle and difficulties of dealing with CPn, ignorance that people with this expertise and specialty do not have. They know how CPn works in the body, what it does to the target cells, and how cryptic forms are unculturable, and they said, yes this makes sense as a theoretical possibility for the cause of MS.

Again, autoimmunity is just a theory too. But unlike knocking out the immune sytsem abx are safe, well tolerated, have long safety records with some ordinary monitoring any physician can do.

I am very grateful to Sarah for sharing her story. I am getting better too Bromley. More slowly, but I have more longstanding deficits as well and will need regeneration of some kind Today I walked- with no cane or anything -all over a new 1/3 acre lot we just bought to build a new house on. Then I walked on a rough trail about 1/8 mile to look at the beach again no cane no support. Someone seeing me would see a lady with a limp. That's all. I can't go more than 1/3 mile YET! without significant drop foot, but that's OK.

I really want to reiterate that though this does not "prove" antibiotics will help MS, what it does prove is that the science behind the theory is sound and it is an idea that makes sense to a group of scientists with expertise.
We can support people doing this and watch with interest to see where they go, and, if you personally feel that the drugs you have been offered have not benefitted you and for some reason want to add to that medicine antibiotics (I have taken copaxone 10 yrs too-afraid to give it up what if it's keeping me from more rapid progression as my neuro believes) you can have the security of knowing it is reasonable to talk to your doctor about it.
marie

Excellent, Marie.

Thank you for a concise and impassioned statement. I have said before that if I were Dr. God I would put all MS patients on the abx regimen and all supplements for at least one year. It would not surprise me at all to find that more patients got into trouble and sank faster into disability on the usual drugs than those of us who stay with abx longterm. As my husband, Dr R, (who is on it for hypertension) says "these are easily tolerated drugs by nearly everyone". My two years and more now have brought me back from a cane all the time and a walker some of the time and a mental soup in which I was drowning. I even walked up a flight (14 steps) of stairs without touching ANYTHING last week. This is indeed a day for celebration.

Rica

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2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

oo

Excellent post Marie!

I was interested in Tovaxin as well, but I did not qualify for the trial (too high on EDSS) and was so thankful my husband found Sarah's post on thisisms.

You are walking with out a cane 1/3 of a mile, I read this part of your post 4 times, we have all been waiting for this - the best news!

A little off topic.
Have you got a link for this? I have only read of much higher results.

From one of my earlier posts...

From this information, it could be possible to interpret that only half of the patients benefited especially with the statement that only 40% of the patients had and improvement in their disability scores. However, with a 90% reduction in relapses, I think that more than half of the patients in the study received benefit. I tend to think that it would be great if a treatment could halt the disease progression and this would certainly be a benefit. Restoration of function, i.e., a lowering of a disability score, albeit a much desired outcome, is icing on the cake.

NHE