Fact or fiction?

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.
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bromley
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Fact or fiction?

Post by bromley »

As another week ends, new visitors to this site (which covers a huge range of possible MS therapies, including abx) are re-directed to cpn-help - a site dedicated to one treatment approach. And why wouldn't new members be interested. MS is a degenerative disease and most treatments at best slow down the progress, with some treatments providing some repair / return of function (e.g. Campath - where some have experienced a small improvement in their EDSS score).

And why wouldn't someone with this disease be attracted to the abx option. Katman has reported fantastic results:
You could have my cane except that I gave it away already. I have had PPMS for nearly 11 years and was a 6.7 on the EDSS and am now 2.5. I have also been on the antibiotics regimen found on the site www.cpnhelop.org for 17 months and now walk/run a mile almost every day.
Anecdote has also reported improvements of a similar scale - I believe having an EDSS of 7+ but now 1ish.

These results are nothing short of miraculous - stopping the disease and reversing it.

I know that a number are on this treatment and would be interested in the results they have seen.

I do have a number of questions, they fit with the culture of this website - a challenge and be challenged culture, and a scientific culture based on real evidence / trials data.

My questions are as follows:

(i) Can Anectdote or Katman provide evidence from a neurologist confirming the EDSS score they had reached and confirming the EDSS score they are now at?

(ii) Given the drastic improvements reported (which to my knowledge have never been seen before), why have their neurologists not noted these fantastic results and highlighted them in medical journals etc? If I were a neurologist and saw that my patient had an EDSS score of 7ish (with Primary Progressive or Secondary Progressive MS), I don't think there would be any licenced treatment I could offer. However, if that same patient strolled into my office two years later with hardly any disability (and in Katman's case she is able to run), I would be taken aback somewhat and would want to get all my patients in a similar position onto this therapy.

I would be grateful for evidence that a neurologist has confirmed these reported drastic improvements.

In previous posts I have asked about trials of the abx regime. Attached in a list of trials and on page 8 there is a trial of the antibiotic therapy. The investigator was S Sriram at Vanderbilt. The trial was terminated. The results were "no significant difference in Gd+ lesion volume or number; significant decrease in brain parenchymal fraction in PBO group not evident in Rx group; no clinical changes in either group".

http://www.nationalmssociety.org/pdf/re ... trials.pdf


I have no axe to grind with the abx therapy and I have said before that if CPn was discovered to be the trigger / cause of this disease that I would be thrilled.

But I am also someone who believes in an evidence-based approach. And I need to know that reported drastic improvements have been validated by neurologists. I am no fan of neurologists, but I would also like to know why they appear to have ignored such unheard of improvements reported by some of their patients.

I would also like to hear from others on the abx regime who have experienced such dramatic improvements and those that have not.

I have tried to ask this in a polite a way as possible, so please don't shoot the messenger. Many of the posts on the abx forum say 'keep the faith' and 'believe'. But there must come a time when real evidence is needed so that individuals joining the site can make well informed decisions based on facts. And I don't think it is right to steer individuals to take up one therapy based on the reported dramatic improvements of a small number.

I would be grateful for answers to the two questions and about the abx trial. If the reported improvements are based on self-assessment rather than by a qualified neurologist then this should be made clear on this site and the cpn-help site.
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De Facto

Post by SarahLonglands »

Oh, Bromley, please give it a rest! I have been totally ignored by "my" neurologist because he is based at Addenbrokes and so is totally of the Campath school of thought. Therefore anyone diagnosed with progressive MS is classed as being beyond help. He wouldn't even look at my MRI scans done after starting antibiotics. He has never given me another appointment. As far as EDSS scales go, it doesn't take a neurologist to realise that someone who could barely stumble to the end of a short front path who can now walk several kilometres, with the aid of a stick for some of the way, who can now paint as well as she has ever be able to do when previously she couldn't even hold a paintbrush, is vastly better than she was two and a half years ago. This is not just by my reckoning, but assessed by my husband, who you have met in his professional capacity, by my GP and one of the most honest radiologists you could wish to meet. I am not claiming a miracle cure which you can about read in other places. It has been a hard slog and I am still working at it. So I am going to continue to try to help as many people as I can. You are lucky because your disease at the moment is very minor. I hope it will stay that way. I got mine when I was scarcely out of university but for many years it was so mild I could just by and large put it out of my mind. Suddenly it became aggressively progressive. Was I supposed to sit back and let this happen, as "my" neurologist wanted? I have never used the phrase "keep the faith" or the word "believe". These are not in my vocabulary. All I will say is "try this if you want to, but make sure you do it properly". That's all. The people who use this site are intelligent enough to see this. David has posted on CPn Help a list of people with MS he has treated and seen at least three times. You might be interested to see it.

The trial you Vanderbilt trial you mentioned did not use metronidizole (flagyl.) Any future trials they organise will, but at the time they weren't allowed to. I wouldn't have improved as much as I have without it. The trial was also not able to be held for long enough. It is very hard to raise the finances for a trial of out of patent abx because there is no money to be made by the drug companies.

I trust you will be enough of a gentleman not to harass me with this over the weekend because I won't be around to reply.
Sarah
Last edited by SarahLonglands on Sat Feb 25, 2006 4:59 am, edited 2 times in total.
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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merlin26
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Skepticism

Post by merlin26 »

Hey Bromley, as far as the ABX stuff goes why not just give it a try yourself? I mean you really have nothing to lose. Im sure you could take it with whatever A,B,C, or R drug youre currently on without having to worry about any serious side effects. The abx regiment seems simple enough and you're obviously looking for evidence to prove that it works. Why not again just try it out on yourself? You seem to put way too much emphasis on the double blinded placebo controlled studies. I gave up on those 2 years back. This was back when my neuro was telling me that some countries reported very little success i.e. (Italy) with Copaxone where as we have had a great deal. I myself am willing to explore all possibilities. The more possibilities you explore the better your chances are at finding something that actually works. Anyways thats just my two cents.
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Post by remnants »

As I am considering the abx regimen, I consider Bromley's comments and questions valid - deserving consideration. At the same time I appreciate Sarah's time and effort in sharing her abx experiences. Hopefully the continued dialogue will provide visitors with the information necessary to make treatment decisions. I think this necessarily includes the negative reactions and opinions as well as the positive. Yet, it often appears as if the person who raises doubts and concerns, gets a verbal bashing so to speak - one only needs to view reponses to HarryZ posts regarding theTysabri issue. How can we determine a treatment option valid if we prevent the negative postings/responses.
Every morning I awaken torn between the desire to save the world and the inclination to savor it.
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bromley
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Post by bromley »

Anecdote,

Sorry to persist, but I'm a sort of a detective Columbo of the MS world and I don't like inconsistencies.

Your huband wrote an article in Hospital Doctor about your case which is on the cpn-help website. He said
"Before treatment she was slipping from grade 6 to grade 8 on the Kurtze disability scale. Now she has reurned to grade 2".
I'm sure you have said that you have continued to improve.

I looked up the Kurtze scale and grade 8 is
'not able to walk, restricted to wheel chair'.
In your post you say that you "can now walk several kilometres, with the aid of a stick for some of the way". However, on the Kurtze scale it is not until grade 6 that the patient "needs a cane, crutch or brace in order to walk".

Grade 2 has hardly any sign of neurological problems resulting from MS.

I too have been to Addenbrookes hospital and met the team of neurologists involved in the Campath trial. I met the head neurologist and saw a number of people in the waiting room who were in wheelchairs and scooters. It therefore surprises me that the neurologist you refer to does not want to see you again.

When I look at the facts, I am left somewhat confused. Grades from the Kurtze scale are used but they have not been verified by a neurologist. You use a stick sometimes but consider yourself very low on the scale. Your husand is a doctor but other doctors, namely neurologists, don't want to hear about your success.

I think it is only right that before others are encouraged to start this treatment regime that the the claimed results have been verified - by a neurologist. However, I suspect that if you sometimes use a stick, that a neurologist might assess you somewhat higher on the EDSS score than your self-assessment.

I have tried to be a polite in my posting as possible. However, it must be time to move to real facts, validated by neurologists, rather than relying on anecdotal evidence and improvements that are self-assessed.
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My thoughts

Post by wiggy »

I am very thank-ful for the abx protocol and have not tried it yet. There is no money to be made for these people that have provided so much information on their success with this protocol. We would never know about it if Sarah did not post her story.

If a few people get their life back from the protocol it is so worth it.

This is the only treatment available that people are not making money on that I have ran across in the last 10 years.

I bought my scooter 3 years ago from a man that died at age 50 from MS. He was still working and he also hunted. He died of a heart attack. I asked his wife what therapy he was on - she told me he had one infusion of Novantrone. I believe it was fairly new at the time. It is well known now that you can not try that drug if you have a bad heart. They did not know this at the time. The risk of trying new drugs that come on the market. For many of us - we can't wait for drug trial to complete much less for the new drug to be on the market for 6 years to work out all problems.

The abx regime is made up of FDA approved drugs that have been on the market for a long time. These meds do not carry the same risks as the others.

I am going to try it and Bromley, I appreciate your comments, I agree as it would be nice to have every question answered to eliminate any risk when it comes to drug therapies.

In my opinion, their is as much information available on abx as on any other MS treatment giving us detective Columbos of the MS world work to do.

All the questions are never answered, and as one of my MBA professors told me a weakness of mine was being too afraid to take risks.

I will post my progress once I start the abx so there will be one more story.
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Post by Brainteaser »

Hi Bromley,

I have no problem with your investigative work but possibly you should steer clear of any perception of a personal attack. :)

My view is that the abx group are genuine in their advice and assistance and most of us are astute enough to weigh things up for ourselves.

I would welcome you taking a comparable investigative approach with a treatment you have promoted viz. rituxan, as I have recently liaised with some of the key people behind rituxan and they have reservations with it in terms of its effectiveness and cost. So, I'd be interested in your feedback.

Cheers,
Phil. :)
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Post by Katman »

Hello Bromley

Yes, this is all miraculous. To reiterate my past statements that I am computer challenged, I feel somewhat disadvantaged that I cannot read your letter and answer it at the same time. I will tell you that BOTH my EDSS scores were given by my neurologist- one to whom I was referred by another neurologist, who has patients referred to her in turn by my husband, who in her own turn, she thinks a great deal of. So with everyone thinking a lot of good thoughts about everyone else, I will also tell you that this neurologist gave me the second score of 2.5 in Dec., 2005 only grudgingly after seeing me bounce a number of times, stand on the toes of my "bad leg" alone and with no support. He had already refused an MRI saying "I don't give MRIs because patients ask for them" and was not AT ALL interested why someone who has gone straight down for 10 1/2 years and reached, by his own words "At least 6.7", embellished by "I expected you to be much worse". Do you really think he would respond to an invitation to come on here and say how impressed he was by what I could do then? I can do much more now than even in Dec. and I have been off of Avonex for three months because it does NO good.

Certainly if he were interested he would demand a world stage if he saw me "running". My walk/run, by the way, would be to normal people a joke. To my husband and my own PCP, it is incredible. And to me, it is the returning ability of a pleasure taken for granted by most people in the world every second of their lives. I have a proposal for you: try antibiotics and supplements for one year and do it as honestly as possible WITH FLAGYL, which was not yet used in the Vanderbilt study, and see how far down this very difficult road you get. It is a true test wherein you get back vastly more than you put in. If, after one year, you are not better, tell me and I will not post any more on this site.

Rica
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.
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bromley
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Post by bromley »

Katman,

Thanks for your post. I have said before that I would be thrilled if cpn were the culprit. My concern has always been that those coming to the site are encouraged to visit another site covering just one treatment approach. Abx may be the 'cure' that all of us are after. However, in may only be appropriate for a sub-set of MS which is caused by cpn. Yet those taking the regime may be under the impression that good results are guaranteed for all - given the impressive results reported by a few.

Your story gives me more assurance given that a neurologist has been involved. A few more stories like yours, validated by a neurologist, would provide those consideirng this regime with a better basis to judge whether to adopt it.

I am still, however, concerned by some of the posts which claim that there is nothing to lose by starting the abx regime. I still have concerns that taking heavy duty abx for very long periods is without dangers. Most trials of therapies track the triallists to assess the effects / safety issues. Again, this is another area of concern given that many are taking up this regime across the world without the monitoring / follow-up one would expect with other drugs / regimes.

Best of luck

Ian

PS Sarah - no need to respond I have made the points I wanted to.
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Post by Katman »

Hi again, Bromley,

There are almost no neurologists who are interested in doing what is necessary for their patients who want to pursue this path. There are several of us who have been told not to come back. I will not publish the name and location of my PCP, who is courageous in doing this for me, because I will protect him and his name from any who would do him harm for thinking ahead of the pack of the super-cautious who would remove all incentive of anyone, patient or doctor, who would dare to take on possible threats, not to others but only to themselves. My doctor has seen me for 15 years and knows that these are not dangerous antibiotics when used properly. I will be long dead before this is "tested" by our patriarchs who would do the testing "for our own good" but since I come from a very long line of healthy, adventurous, long-lived, and intelligent ancestors I am very happy to trade a few years of a regimented existence of pill-taking with hopefully a healthy outcome for the few miserable years of fog-brained vegetation to which I was well on the way. I am well aware that not everyone can do this but I want to give all the opportunity.

Rica
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.
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Month 2 and counting

Post by LifeOnTheFence »

I believe it may be true that there might be a subset of MS caused by CPn, I have to say I would not know about it if it were not for this site.

My GP is prescribing the Abx. My neuro is doing my care. He thinks I am on Abx for chronic sinusitus. I have a Pre MRI, neuro assessment, etc. and then will have a post and intermediate ones as my MS clinical condition warrants. My Neuro and his NP are straight out of the Univ. of PA.

I like to think of my Neuro as a blind rater of my symptoms and the effects of the Tx.

Here's what I think will happen. If this works out for me, someone will say it was the Rebif, or that maybe I didn't really have MS, though I meet all criteria, anything but give credit to a few pills and a treatment that costs very little.

Now I agree it is not a pure study because I am on Rebif, I am an N of 1 and there is no matched control for me but who cares? It is my life and if not for this site, I would not have known to try this. THANK YOU THIS IS MS.

Ian I appreciate your looking out for the scientific quality of the info, I will continue to look for your posts. I also believe people can decide very well for themselves.
Karen
Age 50


Sinus Symptoms dizziness/MRI shows multiple lesions 2002,
"Wait and See."
Dx 3/05
Rebif 4/05
David Wheldon Protocol 1/06
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bromley
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Post by bromley »

Karen,

Thanks for your post.

I don't want to be labelled as 'Mr anti-abx', and I admire the efforts of Sarah and her husband. There are no personal issues at all.

I just tried to raise some issues that those joining the site may want to consider before starting on abx.

I wish all those on the regime the best of luck. And I am mindful that those with PP and SP aren't given any option in terms of treatment. But I also think it was worth pointing out that it might not be the case that everyone who follows the abx regime will see the impressive results reported by some.

All the best whateve therapies individuals follow.

Ian
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Ex post facto........

Post by SarahLonglands »

After a busy weekend:

The Kurtze scale, developed by an intelligent man to be used by any medical practitioner, not merely neurologists. It is not infallible, however. For instance it doesn't give an weight to intellect or cognition. It is all to do wit motor skills. Now, David said in the Hospital Doctor article that I was grade 6 slipping to grade 8. That doesn't mean I was grade 8, but that I was slipping so fast that I would have been with a couple of months. When I was grade six I could not walk even up to the corner shop, about 70 meters away, without using either a leg brace or stick. I melted the leg brace and put it in the waste bin after six months. It was excruciatingly uncomfortable. I hardly ever wore it.

Now I can walk a fair way, some days more than others. If I am stressed or anxious about something or someone, my walking deteriorates. I walk better by myself. I never use a walking stick, but a trekking pole, such as is used by hillwalkers. This makes walking more fluid. I only use it rarely, for instance if I am walking into own, where there are lots of people milling around. If a neurologist were to assess me, as you would seem to like, I could appear totally normal, unless that person had the time to come on a three mile walk, when I would start to tire.

I have never been to Addenbrookes hospital, but saw an Addenbrookes based man who does outpatient clinics in Bedford several times a week. He told me on diagnosis that I could come to Addenbrookes for an infusion of steroids should I ever need one, but other than that I should make an appointment to see the MS nurse, who could tell me about whatever, then once I had done that he would make an appointment to see me again. I didn't want to see he nurse, so he never made the appointment. Also he found out that I was being treated by David.

You say "I too have been to Addenbrookes hospital and met the team of neurologists involved in the Campath trial. I met the head neurologist and saw a number of people in the waiting room who were in wheelchairs and scooters. It therefore surprises me that the neurologist you refer to does not want to see you again." It surprises me as well, especially since I am not in a wheelchair or scooter, although by right I should be. I could probably make an appointment to see him privately, but there are more useful things I could do with my money.

I think the improvements in my MRI scans have far more relevance than the Kurtze scale. Radiologists are the best people to read these scans. There is no rating which takes into account how long I can now spend doing easel painting.

I don't encourage anyone to start any treatment regime, but just give the facts. One fact is that these are fairly low dose antibiotics, used for a long time, yes, but far safer than many things put forward by neurologists, such as novantrone, the only thing remotely possible for me. So much information by professionals has been compiled at CPn Help that it is often easier to point people in that direction.
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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Post by mrhodes40 »

In previous posts I have asked about trials of the abx regime. Attached in a list of trials and on page 8 there is a trial of the antibiotic therapy. The investigator was S Sriram at Vanderbilt. The trial was terminated. The results were "no significant difference in Gd+ lesion volume or number; significant decrease in brain parenchymal fraction in PBO group not evident in Rx group; no clinical changes in either group
I will help you here. I know you like to think you are very scientific but you are missing some important facts.

One is that abstracts are not the whole story of any work, just a mere taste and often disappointingly different. In this case the real citation is incredibly better than the abstract. I have a link to this here CPn Help/?q=node/56 I have read the whole citation in total. The trial you posted above had 4 people in the abx arm and 4 in the control group It was a pilot study. The main outcome was supposed to be a reduction in lesion load. The people got watched for a couple months then abx for ONLY 6 months and their brains were assessed by a very high level machine at 1 year, which was 4 months aftter abx ended. Hey wait a minute read that again: 6 months of abx and at the one year mark, 4 months after abx they got an MRI. What a tiny small length of time to assess something. Would you reject copaxone based on a tiny 6 month trial of the medicine if they only got the medicine for 6 months then assessment at one year if some parameters were positive? 6 months of avonex then a MRI at one year?

the pilot study sounds like a failure since the main measure, lesion load, was not impacted and indeed it is posted as such but guess what??? a more important fact is in there.

The abx people lost only .2 in parenchymal fraction and the controls lost 1.4. We re talking about atrophy here. This is a big deal because atrophy is a better predictor of disability that lesion load is. see this <shortened url>

so the treated people with a very small amount of time on abx lost a mere 1/7 th of the amount of brain tissue vs the controls??? This was preliminary because it was so small so you can't draw a certain conclusion one way or the other on it, but in fact it is very positive. The conclusion was that a large study ought to be done to look more at the important parameter of atrophy, not that it should be shelved as a failure.

the more important question for you since you are a informed member of this site and not a dupe of the nmss is how did you miss the wider important implications of that study? I am personally interested in a approach that might reduce atrophy. How about you?

Given the drastic improvements reported (which to my knowledge have never been seen before), why have their neurologists not noted these fantastic results and highlighted them in medical journals etc
No this is rejecting work that is done. Sriram is publishing stuff about this and the data in the early patent materials of VU-not placed for money but a requirement of the university- provides you with exactly what you are asking for. THAT material has been posted many times on thisis ms. It includes many patient stories and results tallied by a neurologist. You seem to not count that. why?

It is clear that you started abx as you started a regimens post on it. You must yourself have failed and not posted a final on it or am I missing it?
You keep posting these calls for info without also saying at the same time, hey I did this and at "x" months I stopped because I felt worse. And do you have any assessment that lets us know that the worsening you felt that made you quit was a real worsening of MS and not a herxheimer type reaction that is so well known described by those taking it? My point is you are doing this to protect others apparently less knowedgable than you but I contend you actually have a bias against it based on your personal feelings about your apparent reaction to treatment. In your experience it does not seem to work. Ok that's you. But you did get to try it.

Why don't you go ahead and post your treatment experience every time you see Rica's or Sarah's so people can get that other point of view instead of implying that-- what ought to happen? -- That people ought to be disallowed from saying see CPn Help? this site is about open sharing and the way it si supposed to work is people get to say what they think. So do that please. I am interested in your treatment story right down to the details. Maybe I missed the post? You can certainly leave a blog on CPn Help too. No one would reject it we are into the real picture of how this impact people

After 6 months I do not need spasm med any more. After years of baclofen, requip flexoril, I take nothing (except one single dose at the last flagyl pulse) I have had none for 8 weeks or so.

I walk a little better, my massage therapist can find no spasm in me, I feel normal to her and I used to be an obvious MS patient by her "feel". I am getting better a tiny bit at a time. I still feel doubt, especially at flagyl time, but I am honest about that on CPn Help. anyone can read my blogs about how I am doing including all the concerns along the way. Every new person to CPn Help gets this also, not a cheerleading section as you imply.

People who are saying keep the faith to one another over there are talking to people who have committed to the treatment and are experiencing the herxheimer type reactions that make symptoms increase. It is appropriate to do this for one another. It is not said to persons just coming over as investogators. They are told to read the research and learn.

People on cpn help decide for themselves. We have abstracts of pertinent research and many actual citations. We have people join, ask questions and leave when they do not think it is right for them. They are capable of making decisions newly diagnosed or not.
It seems to me that it is you who thinks they do not have ability to make personal decisions alone over there on CPn Help.

This site is about information. Sometimes the info is that there is a site devoted to one treatment where in depth info is available. I have personally donated hundreds of hours of my personal time to annotate and archive and post legitimate research over there as has Jim In all honesty it sounds as if you are reading the support group postings over there which often are encouraging as people cope with treatment reactions, but simply not reading the research articles. If you want to understand it, then go over there and click the physicians links and read them all. Then read the research articles and read them all. Then you can decide if it is a good model and possibility. Since the research is not done this is the best you can do. I personally think people ought to still have access to this even though it is experimental. As pointed out, these are approved medications available through your doctor now if you are willing to do something experimental with the help of your doctor. You would not object to someone doing campath in a trial and would be interested in thier improvement being posted here right? geez these drugs have more of a known history than that....though the final result is no more known. Goodness, some drugs that have been in trials and looking a little promising available off label have been tried in the same spirit by people who could get their doc to prescribe it off label ahead of trial based on the model that it might work. In the end every drug has to be tried on you personally to know if it works in your case.

Frankly since the other approaches are all based on the autoimmune model which is also not proven, and there's some very good indications it is not autoimmune, on that level everyoone is doing an "unproven" approach. The minimal improvements recieved for proven therapies that should stop "autoimmune" disease are a good case in point.
marie
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Post by bromley »

Marie,

Thanks for your post - it sort of confirms the reason I posted on this issue.

I still think that those considering the abx are entitled to know:

(i) how many are on the regime and how many have done well / how many have not done well.

(ii) whether CPN is the cause of all MS cases, some MS cases (or no cases).

(iii) why neurologists who are the doctors responsible for patients with this disease do not appear to have any time for the cpn / abx approach.

(iv) whether all starting the abx regime will see the same dramatic improvements reported by some (as many will join on this basis).

(v) why there is a photograph of cpn infecting cells on the cpn-help website but why it is not possible to test whether someone has a cpn infection.

I've never claimed to have any scientific knowledge, but my training as an accountant / auditor has given some ability to ask questions. The sorts of questions which I think anyone starting any treatment regime might want to have answers to.

It's a pity that some like yourself, takes offence when reasonable questions are asked. This site has always been a site where discussions take place and questions asked / information sort.

I will raise no further questions on the abx regime.

I thank Katman for her polite response.
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