This Is MS Multiple Sclerosis Community: Knowledge & Support

Also, as far as I am aware, Sriram has not yet had a trial involving metronidazole, probably because it would take too long for the university authorities. He does use it for individual people, though. They both se the need for clinical trials, but Lib, these are not so easy and inexpensive as you seem to assume. Also they tend to be only for rrms people and they have any other available treatments which they obviously will go for, so it isn't easy to find the required number of people.

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 greatly appreciate the efforts that Sriram, your husband and others are doing. I just wish others would do as much as they do. It is too bad that all the trials are focusing on RRMS and they are mising the point that there is an accumulated damage in the meantime.

If it helps others I am very happy to provide info on my "trial". As you know I had to stop CAP for a few months, but I want to continue it. I believe we must try everything to combat this disease. It might be a wishful thinking, but I thought that even without formal, expensive clinical trials if the treating doctors like Sriram collects data on patients (e.g. RRMS, SPMS, PPMS, active lesions are present or not, etc.) and see how abx works, then we might get closer to see what is going on. You remember, I told you earlier that neurologists I know do not rule out that bacteria is causing MS. It would be so great if somehing happened and there would be MS patients who would get abx under the supervision of neuros.

I also do not understand why MS patients have not tried FMT off-label. It is another, relatively quick option to do something against bad bacteria. What if abx works in another way what we assume with CPN.

I found this on the net:
"German researchers have linked gut bacteria to multiple sclerosis (click here). We all have millions of microbes living in our guts, normally to no ill effect. However, more and more research links these bacteria to some autoimmune diseases. The researchers who did this study used mice genetically engineered to develop a Multiple Sclerosis like disease, and allowed some to develop gut bacteria, and others to remain gut microbe free. About 80% of the mice with gut bacteria went on to develop MS like symptoms, while none of the sterile mice did. While it's a far cry to go from mice to humans, this study does demonstrate that intestinal microbes do interact with the immune system, something that has long been suspected. Of course, most of the bacteria are in our guts is harmless, and some even serve a beneficial effect, but these research results certainly warrant further investigation."

How to customize? Actually, I did the same protocol that was in the CPN handbook. I thought it is prettey much standardized.
The reason why I raised all these questions, because I also think that bacteria could be behind MS. However, as I read other research results it is quite confusing what is happening with MS patients, not to mention the different types of MS. I think we know not much about the role of bacteria in our gut, but there are some doctors who attribute even diabetes, obesity and autoimmune disease to our gut flora.
Also, I just assume that results are not universally positive with abx, but that does not mean that abx can not be a "cure" for some MS patients. We should just figure out whose MS are caused by bacteris.

Thanks. I did the other version with doxy, roxy and tinidazole. Actually, first I strted with azytromicin, but I switched for roxy. At the beginning I did only doxy for almost a month as my doctor prescribed only that one. Then I did azitromicin 2 times a week and in the second week went up to 3 times a week. Then after a time I did the change for roxy.

Would the speed of the introduction of the different abx change the outcome? I mean the effect on MS? I did almost 7 months, but I havn't experienced significant change in the progression of MS. I also saw some posts here from people who did not benefit from CAP and Sriram talked to me about mixed results as well. Of course, all these negative things did not help increase my confidence. So, that is why I was looking for some results. As I got prescribed abx from my doctors, I also had to battle with his/her warnings. So, I got cautious. Reading all the different angles of MS, it was hard to put all my eggs into one basket.

That is why it would be really great if some contacts could be established between doctors, the one who treats me in my country and the one who has experience with the protocol (Mr. Wheldon or Sriram, etc.). Doctors can make out indications based on which they can prescribe the abx, so no danger in helping them, but it would really calm me that there is a doctor who supervise the treatment. I went through several blood tests and I had no problems, so my major concern was the gut flora as the role of it is still not well known.

Couldn't this be the reason why abx works?

Tetracycline Antibiotics
•The tetracycline antibiotics, including minocycline and doxycycline, have immunomodulatory and neuroprotective activities. They appear to decrease the passage of leukocytes across the blood-brain barrier. An earlier trial of Copaxone plus minocycline showed favorable MRI data.


•In a small trial in patients with RRMS, minocycline decreased gadolinium-enhancing activity by 50 percent over a period of six months. A subsequent 24-month trial showed a significant decrease in lesion activity and clinical status.


•A Phase III trial that began in 2008 is studying the effect of 100 mg of oral minocycline twice daily on the conversion of CIS to a diagnosis of MS at six and 24 months.


•A small Phase IIa study with 45 patients will study minocycline in acute optic neuritis (ON). It began in February 2010, and is scheduled for completion in February 2013. The primary aim of this open-label pilot trial is to estimate the treatment effect of 100 mg of oral minocycline twice daily for 90 days, initiated within 30 days of onset of ON. The study will evaluate the effects on functional and structural optic nerve recovery compared to no treatment. The primary outcome measure will be the degree of optic nerve recovery, as measured by the retinal nerve fiber thickness.


•A small Phase IV study combining doxycycline with Avonex demonstrated a statistically significant reduction of gadolinium-enhancing lesions compared with Avonex alone. A larger trial is needed to confirm these results.

http://www.mymsaa.org/drugs/summer-fall ... ycline.php

Wheldon talks about this as well (the interpretation of disease attenuation after administration of antibiotics), here:
http://www.davidwheldon.co.uk/resistance.html

I just heard from doctor yesterday that in Germany, they showed, again in mice, that gut bacteria are indeed involved in triggering the reaction that causes the body’s immune system to turn against certain nerve cells.

Could it be that CAP is working for a different reasons, not because of CPn but bad gut bacteria?

Have just seen this - as Sarah said many of us have done the abx and are now getting on with our lives instead of hanging around on MS forums. It's wonderful! Dr Wheldon kindly treated me and I have now been off the protocol for quite a while and doing really well. Old damage still flares a little when I get a new infection but nothing new for ages. Previously i was rapidly going down the pan.

I think there was definitely an infective aspect for me - before treatment I had felt cold and shivery for many years - as if my body were trying to fight an infection. After treatment I no longer feel shivery. Did I remember to say it's wonderful!

Hello Agatha: so nice to hear from you. Or should I say it is wonderful!
It is very nearly ten years now that I was given the SPMS diagnosis and David was told quietly that it would only be a few months before he needed to find a nursing home for me. After he unearthed the Vanderbilt protocol and started a rather disbelieving me on it, resulting in my vast improvement, I could have just quietly got on with my life then, but I wouldn’t have been happy doing so, when there were so many other people who might benefit. Maybe I should have kept quiet though, because I had no idea of how long such research takes and how difficult it would be to change people’s auto-immune mindsets.
No, I’m glad David and I spoke out because people like you would have just continued to fall off the radar.
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.

Maybe, Lib, you should be looking into finding someone like Borodi willing to do a faecal gut transplant, since you seem unwilling to believe anything I might say about probiotics and the time it takes some people to show some improvement.

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.

Anecdote, I am joining Lib and those who have reservations about the effectiveness of probiotics pills. One thing is for sure, if you take real abx (not the fake ones) for years that will ruin your gut flora. I have doubts how much you can balance that with probiotics. First, probiotics are not controlled by FDA, so you do not know what you take. Several studies already indicated that many statements about different probiotics brands are not true. Second, probiotics just contain couple of strains, while our gut contains plenty. We do not even know exactly what are the roles of different bacterias inside us. We do not even know what diseases might be attributed to bad gut flora.

Of course, if someone has MS she might take the chance, but as I said many times not much to support the abx use in MS.

Probiotics: for much of the time on antibiotics I just took live yoghurt as a probiotic. I don't really want to subject myself to something like a colonoscopy, but I really do have no trouble with my gut: I defecate regularly once a day and never have constipation, or diarrhoea unless I have eaten something iffy.

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.

Geeze Gogo, what do you want? This continuous bashing of the antibiotic therapy (and of Sarah) is growing tiresome. Not every therapy works for every patient. But a patient should have the opportunity to try whatever therapy they deem appropriate. There is a ton of research available for someone to make an intelligent decision on whether this therapy is the right one for them or not. You obviously have chosen not to give it a try for yourself. Good for you! But others may decide it is right for them. Good for them! But stop with the scare tactics.

Gogo, I took antibiotics for six years. I was sporadic, at best, in taking probiotics and I hate yoghurt, so I don't eat it. Anyway, I did NOT destroy my gut flora. I did NOT damage my systems. I have been overseen by a physician throughout my treatment and I was tested several times.

The antibiotics did NOT harm me, but DID cause my recovery from dozens of MS symptoms and my brain no longer shows angry white spots. Please stop trying to scare people about the long-term effects of antibiotics, because it's just not the case.

I agree with Loriyas. It's obvious you don't intend to pursue the antibiotic protocol, which is fine. But to make smug pronouncements that it is detrimental, relying only on 'word of mouth' and old wives' tales, is irresponsible.

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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