This Is MS Multiple Sclerosis Knowledge & Support Community

Dear all,

The great plus point about this site is it's scientific approach and the fact that debates are undertaken on a range of issues. Current and possible future treatments are discussed e.g. stem cells, statins. Dignan's work on all the treatments currently in trial provides us with hope and a good source of information when we visits our neuros to discuss treatment options. Well informed discussions have also taken place on the Tysabri fiasco.

I do, however, have a concern that this site is to an extent being hi-jacked by one treatment regime - the anti-biotic regime (Dr Wheldon's regime). It is of course right that a site such as this should be the place where treatments options are highlighted, but I fear that many coming to this site might be drawn to this one treatment regime without any real data to base their decision on.

I am of course happy to hear the views of others (particularly if they counter mine), but I thought that this was worth raising. I have posted a lot on this site, but most of my postings have been about articles / research that I have come across from elsewhere. I am not wedded to any specific treatment regime.

I have asked before about the wider results from those following the Wheldon regime or indeed from the regime being used in the US. Given that Dr Wheldon is, for some, issuing prescriptions for abx, then I imagine he is following up their effectiveness with his patients.

The approved therapies have published data on their effectiveness and this site showed it's strength with the analysis of the Tysabri trial data. I therefore think it would be useful for Sarah and her husband to provide some data as to how many people are on the Wheldon regime, how long they have been on it (average times), how many have stopped the regime, and how many have seen improvements. For example: 40 people are following the Wheldon regime; 60% have been following it for over six months and 40% for under six months; X of the 40 have stopped; x have seen very good improvements / x have seen moderate improvements; x have seen no improvements.

If I was to play Devil's advocate, I could say that I have only seen dramatic improvements reported by the wife of the Dr who has developed a theory about CPn / MS and anti-biotics! Sarah has reported dramatic improvements (I'm sure one of the postings said EDSS 8 to EDSS 2). Such improvements are almost unheard of, and Sarah reported dramatic improvements in her MRI scan. Again, if I was to play Devil's advocate, why isn't Sarah's neuro impressed with the results and reporting them?

In terms of CPn, I have seen a number of research papers concluding that CPn isn't involved. An example is provided:

http://www.bostoncure.org:8080/article. ... ode=nested

Again, why aren't researchers finding CPn during tissue analysis (lesion projects / autopsies)? I'm not convinced by the argument that it is difficult to find!

I hope none of you mind me raising these issues. I'm glad that Sarah has reported such good improvements from following the abx regime (although one could argue that the doxycycline is having the same benefits of minocycline rather than anything to do with CPn). I just believe that more data should be made available before individuals with this disease start cramming themselves full of heavy duty anti-biotics.

This site is also about debate and discussion, but I fear that on the abx (Wheldon regime), that it is becoming more of a pro-abx mouth-piece. People are being drawn to a treatment regime primarily on the basis of the reported improvements of one individual. It may turn out that CPn is the culprit (in all or some cases of MS) and that the Wheldon regime was the right approach. But until I hear about ten Sarahs then I must remain open-minded and challenge for more date - this is what we would do for any other treatment regime.

Apologies if I have offended anyone - this was not my intention. But this site must remain an unbiased site that examines and discusses all possible treatments. ABX is of course one such treatment, but we must be careful that as a site we do not become too closely attached to just this one treatment regime, or that we do not challenge it as we would for other treatments (all just my opinion - I may be on my own on this one).

Sarah, I appreciate how you have shared your experiences with this regime and your support for many who use this site. My intention is to generate some debate about this issue and is in no way an attack upon you.

Regards

Bromley

Bromley,
I share your concerns. I have been taking ABX since April/05. I'm concerned about the lack of research support for the approach. I don't know why Vanderbilt had so much difficulty recruiting subjects for its trials, why the trials seem so limited, and why the results have been so ambiguous. I'm no where near as well briefed as others on this site, but I do find the explanations rather thin. I realize the lack of commercial potential may have curtailed research interest/funding for ABX. But statins appear to have enjoyed fairly wide ranging trials, with measurable impacts on lesion load and, like ABX, they're inexpensive (at least in comparison to CRABS) (and in fact I'm paying more for ABX than I would for statins). I realize that statins have some serious potential side effects but no one has been able to assure me that long term use of ABX is not going to have an impact; my own prescribing doctor has no answer. There are some convincing testimonies on this site as to ABX effectiveness: there are also some updates which concern me since some rather alarming symptoms arising during an ABX regimen are assumed to be attributed to a healthful purging of bacterial loads. And I believe that people are, in fact, more inclined to self report on a treatment when there is an improvement, not the reverse, so that what we are seeing on the site is, if anything, overemphasizing positive outcomes (and those seem slim). I submit this post hoping that there will be further discussion, I would very much like to believe that ABX will prove useful for MS, I just wish there was more to convince me of that.
LJM

Bromley, if you've seen my post in the antibiotics forum then you know I mostly agree with you. More and more people seem to be abandoning conventional treatment strategies for an unproven one. Don't get me wrong; Nothing would please me more than to see some proof that multiple sclerosis has a cure as easy as taking a couple antibiotics three times a day. I would be ecstatic.

I want to see the same data as you, bromley. I don't think that is out of line; if someone came to the site and claimed their miracle diet could cure multiple sclerosis, we'd all be skeptical and want to see data. This is no different, really. If someone is going to be such a strong advocate for an unproven treatment, it is only fair to ask for hard info.

Apart from that, no one has been able to replicate the Vanderbilt teams data on C.pn. The Vanderbilt team claims that is because of their new and improved methodology. The other teams claim that the "improved" methodology is anything but. Who is correct? We don't, at this point, know.

Anyway, this debate can't be anything but healthy, bromley.

Isn't it simply a matter of 'Suck it and see'?

I don't think the advocates of the antibiotic regimen are trying to drag people off other treatments. Rather, they seem to be offering hope where there isn't much, at no personal gain to themselves.

For people like me, there is no recognised treatment, so why not give abx 'a go'. I don't feel the need for a full scientific trial before acting. It would be nice but that could take years.

Bromley, I recently received this from Dr.Wheldon:

(Attachments successfully scanned for viruses.)

Attachment 1: 05.03.23a-cpn-dw-cs.doc (application/msword)

Attachment 2: cpn-ms05-06-28.doc (application/msword)

Katman and I are another two cases. I think Sarah knows about one more man with PPMS who got much better on the ABx. It makes eight of us.

I definitely agree with you. There is not much evidence yet that the ABx are the way to go. Very few people try this approach, because no doctor in the country recommends it. It also might not work for everybody. It is impossible to tell without clinical trials. At Vanderbilt they had 5 people that agreed to participate. I heard from Daunted the results are not that good so far. We might never get any studies.

This has been my seventh month on Dr Wheldon's protocol, if I don't count the two months last year (June and October). Each time I stopped ABx because of the recurrence of paresthesias. Now I think it was a Herxheimer's reaction.

I was on statins since November 2002 till February 2004 ( Lipitor 80 mg a day) and I improved dramatically within few months. I switched to ABx looking for "cure". I will get the next MRI in February.

I did not realize that we are hijacking this forum. I joined to help Sarah and others with my example. People who get a very good response from their current therapy are unlikely to try. I was unable to get any interest in ABx in other two forums I frequent. On the other side, if a person tried everything only to endure a steady decline, it is one more option.

ljm, Justinian, Brainteaser, LifeontheIce,

Thanks. This was the sort of debate I was trying to generate.

Everyone is entitled to try anything they want to make their lives better. My only concern was that some may be making decisions on very limited information. Sarah who says she was into the Secondary Progressive phase of this disease has reported pretty continous improvements, both clincally and MRI. She reports that she now cycles around the park and is back to work, yet two years ago was heading for a wheelchair. I can see why those who had not had much success with the approved treatments would look to the abx regime with real hope. I just want to ensure that a full picture is presented. If for ten on the regime, three reported the same improvements as Sarah and seven saw no improvements, then the effectiveness would be 30% - not as impressive as the 100% so far reported (i.e. just Sarah's case). LifeontheIce is reporting improvements but also reported very good results with statins.

I know that Raven started the abx regime but switched to Campath. I was on the ABX regime for five months until a relapse that affected my walking very badly (thankfully steroids got me back to where I was before). One could argue that I (and perhaps others) had not been on the regime long enough. Who knows? And that's the problem. There's a sort of unofficial trial being undertaken and that worries me, particulalry regarding the data being collected (or not).

I agree with you Brainteaser that those pushing the theory have nothing to gain but are seeking to help others. But the others have something to lose if they abandon approved treatments (albeit with limited efficacy) and find out two years later that abx had no effect and their progression had continued.

Another concern is the long term use of abx. This is often reported in the press. My pharmacist was always taken a back when I presented the prescription. These are heavy duty abx taken for a long time. Have the long term effects of taking this treatment really been thought through?

Again, nothing against the abx regime. More a concern about how it has been 'marketed' and the lack of data.

Bromley

One thing I can't wrap my mind around with regards to the theory that MS is caused by a pathogen is that people actually seem to improve with immune suppression. Look at Campath; it essentially knocks out your immune system for a while. If you've got bacteria rampaging in your CNS, I don't understand why eliminating your immune system wouldn't cause an immediate and serious decline in your health. There would be nothing to keep the bugs in check.

On the other hand, I don't believe that autoimmune inflammation can explain everything, either. If it did, stopping the inflammation would completely halt the disease process and it does not appear to. It may prove to be a great help, but it doesn't appear to completely stop things.

But I guess if the answer were simple we wouldn't be talking about this anymore. Still, I can't get past the whole "knocking out the immune system actually helps" thing when considering a bacterial or viral pathology. I would expect the opposite. I would also expect more clear cut evidence of bacterial infection found in autopsies. Said evidence is singularly lacking.

Watch it turn out to be a prion disease like CJD. That would be... bad.

Heavens above! Nobody is trying to highjack the forums. I very rarely post anywhere but in the Antibiotics forum or the Regimens one, which Arron started before the Antibiotics one. Nobody is trying to persuade anyone to do anything: everyone has the free will to choose to do anything they want. How many postings about antibiotics do you see in this section?

Of course David is keeping track of his patients, but if they don't post here, their data is confidential, they aren't part of a trial. I am his wife, but that is all, I am not employed by him to keep track of everyone. I wouldn't want to be, I have my own life to live, and now, thanks to the delightful Ram Sriram and Charles Stratton at Vanderbilt, (and David), I can do that.

David works part-time for the hospital and does private work in the afternoon. He does not charge for this because he doesn't like to mix money and health. He is lucky in that working for the NHS he can do this because an adequate income is earned before any private work. Some people seem not to appreciate this

One might attribute some of my improvements to doxycycline and its immunomodulatory powers, but why have I not degenerated when I stopped taking them, apart from small booster doses every two or three months?

Quote by Bromley

If I was to play Devil's advocate, I could say that I have only seen dramatic improvements reported by the wife of the Dr who has developed a theory about CPn / MS and anti-biotics! Sarah has reported dramatic improvements (I'm sure one of the postings said EDSS 8 to EDSS 2). Such improvements are almost unheard of, and Sarah reported dramatic improvements in her MRI scan. Again, if I was to play Devil's advocate, why isn't Sarah's neuro impressed with the results and reporting them?

I was EDSS 7, going on to 8, but I never quite got that bad. For years my MS was very mild, but I started to deteriorate in 1999, then more rapidly from summer, 2001. I saw the neurologist privately in May 2003. At this time I could still sign his cheque. I was deteriorating so rapidly by then, that when I had the MRI in August, and the last meeting with him, I had to walk along the corridor holding on to the wall. My right arm was useless. The diagnosis was secondary progressive, without a doubt looking at the scans. He told me to go home and allow the disease to take its course.

The sequence of scans were shown by the chief radiologist here, to one at Addenbrookes, our neurology centre, and this is part of his reply:

................. I did finally manage to show the MRIs to
Dr ******. He was surprised at the change between the earliest
(June 03) and latest (Sept 04) imaging. There are definitely lesions which
have disappeared between the 2 studies, and many of the lesions are smaller than before. In Dr ******'s experience this is unusual for MS lesions which usually accumulate over time, the older lesions showing as an area of volume loss.

The radiological changes seem to reflect the clinical course, and this
circumstantial evidence would seem to suggest that the treatment she had has helped.

I presume I am not under the care of 'my' neurologist any more, because I have had no contact with him for two years. I do know that he saw the second set of scans. He is an epilepsy specialist, apparently. His last words to me two years ago were that if I had a severe event, I could go to Addenbrookes to receive IV steroids within short notice. I haven't needed to. I have no idea why he isn't interested in the results. I can tell you something though, someone from somewhere else is. Can't say where, though. Trade secret!

If Arron thinks that the site as a whole is becoming too biased, then he is welcome to tell me.

Bromley, I hope you have a good time in Florida, you need the break.

Sarah

Sarah,

I can only reiterate that this was not an attack on either yourself or Dr Wheldon. I greatly admire both of you.

I just wanted to raise a concern that there is little data on the effectiveness of following the abx regime. You have seen particulalry good results but I am concerned that others viewing this site might be drawn to the abx regime and abandon other approved therapies in the hope that they will see similar improvements.

You say that nobody is trying to persuade anyone to do anything, but by highlighting the dramatic improvements you have seen there is a risk that others might follow. This is of course up to them, but I just wanted to highlight the fact that there is no data for an informed decision to be made. I would of course not expect Dr Wheldon to provide information on individual cases but surely it would be appropriate to provide some overall data on the numbers following the regime and a snapshot of its effectiveness. Are any on the regime reporting similar improvements to those seen by you? Are any seeing no improvement? I just think this debate needs to go beyond the experience of one (mainly) to the wider picture.

You say that you have not seen your neurologist for two years i.e. before you started abx regime. Who has made the assessment of your reported improvements in terms of EDSS?

Bromley

Bromley,

I can only reiterate that this was not an attack on either yourself or Dr Wheldon. I greatly admire both of you.

Thank you! What would we all do without you?

Treating MS an a CPn infection is still a new thing, much discounted by most neurologists. I got mail today explaining why the Vanderbilt testing procedure is so much better than what is used in most other places. I'll see if I can get permission to post it by the time you get back from Florida.

What I will say, though, is that there is no reason why people should stop any of the CRAB drugs to start antibiotics, unless their liver function tests indicate otherwise. Statins likewise. There are people on this site who are taking far more: Gibbledegook for example, who has now gone off to Italy without taking her walking stick.

The people who are going to see the most 'spectacular' changes are people like me who had very aggressive SPMS. We are not in the majority. People with very early disease will take longer to know how they are benefiting. I am only a few years older than you, but I have had the wretched disease since finishing at university. Other people like Lizz and Daunted want to nip it in the bud. You had a relapse quite early in the treatment: it can happen, especially if you haven't taken many bouts of metronidizole. I managed to avoid this but I didn't get 'flu and don't have any small children. I wish I did.................

As for the EDSS scores, they are useful but don't pay enough attention to cognitive powers, but can someone with enough medical experience not tell that someone has vastly improved in the ratings if one year she couldn't walk unaided more than a few steps, couldn't use her right hand at all, couldn't speak clearly, certainly couldn't touch her nose with her eyes shut, couldn't tie her boot laces or button her clothing, but the next year can walk unaided several hundred yards, further with a trekking pole, can do all the other things with ease and can do a standing lotus on her left leg if not her right. Never mind the painting and chess.

Sarah

Sarah,

Thanks.

Hopefully, in time, many more will see the improvements you have seen and such results will encourage the relevant authorities to start looking at funding a trial. Like many on this site, I hope that CPn does turn out to be the culprit, as there is a treatment option which appears to irradicate it from our system.

Best of luck

Bromley

I'm posting here rather than in the ABX forum 'cause I think its probably more appropriate.

The kind of stuff that bothers me is, as in the "Personal Data Collection" thread, ljm posted that she has been taking abx for more than 4 months and not seen improvement. The response to her was "don't be down because 4 months is nothing."

Antibiotics aren't candy. They're poison. They're just poison that kills the bacteria faster and at lower doses than they kill you. Four months on antibiotics is not nothing no matter how much we all want abx to be the answer. I think this is the critical issue... if people aren't seeing results we have to recognize that they aren't seeing results. You can always say "keep it going longer, keep it going longer" but at some point you have to look at things objectively and say "it's not working."

Maybe that's at 6 months or 8 months or whatever and not 4 months. But part of the cheerleading atmosphere I (and I think bromley) reacted to is exactly that sort of thing. FOUR MONTHS on antibiotics is, really, quite a long time to be taking them without seeing results!

The kind of stuff that bothers me is, as in the "Personal Data Collection" thread, ljm posted that she has been taking abx for more than 4 months and not seen improvement. The response to her was "don't be down because 4 months is nothing."

Justinian, under most circumstances I would agree: if you were taking the stuff for a sore throat and you still had that sore throat four months later, I would say there must be something else wrong. However, if you were taking abx for tuberculosis, if you stopped the treatment before six months, you would not be cured. Now, chronic CPn infection is a different matter: because of the insidious nature of the pathogen and its complex life-cycle, you have to take the right abx, in the right order, for at least a year to be sure of being rid of it.

Lizz was talking about her improvements fitness wise: you don't take abx in order to become a champion marathon runner. She is comparatively early in the disease an the MRI she had coincidentally a couple of months after starting treatment showed no active lesions. This might have been because she had only had a single demyelinating event which would never have gone on to full blown MS or the abx had a hand in stopping disease activity. She chose not to wait until the disease became far worse before starting treatment. Her choice and I think the right one.

What I do feel a little uneasy about is people making regular, from the word 'go' updates. I have told Marie this, but again it their choice, and people must realise when viewing these updates, there are going to be some good periods and some bad. I can see the use in it, though. I couldn't have done it because I needed the follow up MRI as solid evidence: I deep down inside knew that I was getting better because when I started my right arm was completely useless and various other things, but only a couple of weeks before the scan, I was suffering the west pains across my shoulders and down that arm that I had ever experienced. I might have thought I was having a relapse except that I was assured that these weren't CNS pains, by someone who should know about these things.

Finally, with regards to antibiotics being poison, you tell me something, apart from purely dietary measures, that isn't.

Sarah

Having followed this thread with interest for the past while I thought that I would jump in and give an opinion (boy, don't I do that often).

First of all, I didn't get the feeling that the ABX treatment messages were "hijacking" or influencing people improperly on this forum. Every once in a while a particular thread on something new does take the limelight for a while but in the end things usually balance out.

Alternative treatments to MS in the research world generally have a real struggle to come up with any kind of meaningful data. Yes a small trial here and another there show some promise as in the case of statins or Campath and BioMS, the company in Edmonton, is doing a trial on a drug for SPMS that has shown some early promise. But when you compare these trials to the "big four" (Biogen, Serono, Teva and Berlex) they are but a pittance of the total money spent on MS research. These guys, who make millions from MS, continue to experiment with their immune system altering drugs and that's where MS research has been for decades.

They have such a "lock" in MS research that the other companies who are working with these other alternative drugs, have a very difficult time trying to show any kind of conclusive evidence that their medication merits further large investment. And most MS docs around the world won't prescribe them unless they can refer to clinical data that shows they work to a certain degree. So you end up in a catch 22 with the current "approved" drugs remaining on top with limited effectiveness and any new alternative drugs not having much of chance of progressing because the money and resources aren't available.

Unfortunately MS research has been in this situation for a very long time and unless something changes, it will remain this way for some time to come. In closing I'll only say that after 50 years of research, neither a cause and certainly nothing remotely close to a cure for MS has been found. And as Dr. Behan stated, that is abysmal!

Harry

As you all know well, this site is dedicated to empowering MS'ers via knowledge. This disease is not something that needs to be accepted-- we are all dedicated to fighting the good fight and ultimately relegating multiple sclerosis to the history books. A significant part of that attitude is exploring alternative treatments that may not be accepted, or even discovered, by the mainstream.

Now to be fair, that lack of acceptance and awareness is often highly correlated with a lack of proven efficacy. That being said, we do believe in the possibility that hidden gems exist, particularly when they are discovered as the result of studious research.

What I want to stress here is that alternative treatments carry with them the unknown (even "proven" drugs like Vioxx have nasty surprises), and that unknown carries with it significant risk to health and well being. No one on this site can claim to know how a given drug is affecting a given person-- and in my belief, no one here is doing that. Opinions, experiences and advice are incredibly important and that is the thrust of the content on this forum.

All of our members must be responsible enough for their own well being to pursue alternative therapies with the knowledge (and hopefully consent!) of their medical doctor. The internet can never substitute for having a GP keep an eye on you and take a look at you when you're feeling unwell-- or worse yet, becoming unwell without realizing it. No one here is a medical doctor, nor claims to be.

Now I know all of you already knew what I have above, but it's worth reiterating every now and then. Doctor's aren't always aware of the latest research or willing to think "outside of the box" to find the very best treatment for you, but they are crucial to keeping you healthy when you are willing to risk taking an alternative therapy.