This Is MS Multiple Sclerosis Community: Knowledge & Support

How about this from 2012?

http://www.abc.net.au/catalyst/stories/3572695.htm

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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, what are you saying with this?
Two different theories, none of them have been proved. There are some studies that show no connection between CCSVI and MS as as many healthy people have CCSVI as MS patients do. Most of the angioplasties did not result in any lasting improvements.

In the video, the guy said that he was convinced that Sarah's MS was caused by Chlamydia. And how was he convinced???? Any findings that MS patients have Chlamydia infections significantly more frequently than healthy individuals??? It is a very compelling story, but nothing substantiate it.

As you probably know HSCT based on autoimmunity cured MS patients and these cases are well documented. Ongoing clinical trials have verified it.

This is disingenuous. Look to Wheldon's website and the citations he provides. Print out the FULL articles and read them back to front, multiple times. Wheldon points to three pivotal studies: Sriram [1999], Buljevac [2003] & Munger [2003] that pin down an association between MS and C. pneumoniae; not mentioning the countless other studies that give merit to this idea, as well, which Wheldon plainly cites on his website.

I take it that you mean "HSCT" as non-myeloablative implantation of stem cells. Unfortunately, an "ongoing trial" can verify nothing. Only until the data is totally compiled and analyzed, from a completed trial, can you begin to draw inferences. And these inferences slowly lose credibility the shorter the observational period post-experimental treatment (Heaven have mercy on those trials without an observational period). Interferons and glatiramer acetate show some viability, but in the long term? Neutralizing antibodies to interferon; glatiramer acetate does not stop progression to progressive form.

Antibiotics have been prescribed for timelines, similar to what Wheldon proposes, for other disease indications, and is a much smaller ball of wax than HSCT, let alone much less costly. The fact that Sarah's disease progression was halted, for such a long period of time [going on towards a decade now], at a time when her disease state was diagnosed as progressive, should speak volumes in and of itself.

From one of the published articles by Stratton and Wheldon, it appeared as if Wheldon had plans of observing his cases (i.e., patients he has treated) in the long-term before attempting to publish any of his findings in an academic journal. I hope this is true, however, it does not mean that it will happen. Wheldon is retired and he is only getting older. Sarah is getting older, too. Nevertheless, even if Wheldon did so, I imagine it would be criticized for not being double-blinded or placebo-controlled, or TOO homogenous even!

Curious Robot,
if these studies are so compelling, why is it not an accepted therapy for MS? What do these studies show? So, all the scientists , neuros are stupid or they just did not have the time in the last twenty years to read these compeling studies. Then, tell me what test should I get to determine whether my MS is caused by Cpn!!! It is really sad that it has been more than 20 years that nothing has been proved. The fact that Vanderbilt guys are not confident about their CAP and that they could not complete any trials tells a lot.



HSCT is applied for many years off-label and you can find many people even here in tims who went through it and symptom free. Not only one Sarah, but many. At least there are ongoing trils for HSCT, but show me one for CAP!!!! Only anecdotes....HSCT is also accepted by neuros as it fits what we know about MS.



You said it, it is much less costly. So, what holds you back to have a clinical trial completed? There are diets, food supplements currently on trial. ...Again, only Sarah...That is only one case. Search the web and you will find many such cases for different "cures".



Curious Robot, believe me, I would be happy if such study would appear somewhere. We should clarify how to identify whose MS is caused by Cpn and which protocol is effective as a treatment. So far, there is nothing.

Due to the very nature of the bacterium and the disease state it is capable of producing, only after years of chronic infection, is quite impossible to study, in the way you are imagining, because of logistics. How on earth do YOU propose to study such an infection and correlate with a disease state? Do YOU propose we infect infants, or children for that matter, [because this is when infection typically occurs] and follow them for decades and monitor what disease states do occur? Do you REALIZE what kind of power is required for this absurd and unethical study to be considered statistically viable? I hope you understand that it is totally impossible, but with the collection of epidemiological studies that DO exist, their results point to some kind of causal association. Therefore, an empirically administered full-antichlamydial antibiotic trial in definite MS, is required.

The three questions that I have quoted and 'bolded', from your post, lead me to believe that you do not understand the logic behind this. Nevertheless, your misinterpretation is not fatal, all it requires is some re-reading and thinking.

In my opinion, the global financial crisis (especially how it has affected the US), the lack of financial incentive (remember that these antibiotics are out of patent), and sheer complacence of other physicians/scholars have more than likely had some effect on the lack of an antibiotic trial in MS subjects, aimed at C. pneumoniae. Do not interpret the aforementioned reasons as all-encompassing, or exhaustive.

Gogo, I might have named myself Anecdote, but I am far from the only one as you seem to think. Leaving aside the US and other countries in Europe, ‘the guy’ in the Catalyst programme has treated many people over the last few years and most have halted progression at the very least. Admittedly not many of them post either here or on CPn Help, but why should they? They are better and want to get on with their life.
Going back to the fifties, MS was widely thought to have an infective cause, but the trouble was that nobody could pinpoint what the infection might be. In the next decade, autoimmunity came to the fore largely for this reason. Many thousands of pounds have been spent since then on developing disease modifying drugs, but still there is no cure for MS.

In the early eighties, C pn was found to be pathogenic ad by the next decade people at Vanderbilt were working on it as maybe being a cause of MS. Ten years ago my husband found out about this research when my MS became progressive. I scoffed at it, but took the abx to please him. Nobody was more surprised than me when it worked. So that is why I still post here to give people help and advice. I spend a lot of time doing this when I would much rather be using wielding my large collection of brushes and pens, being creative as well as useful.

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.

Hi! i'm wondering about MS too n what causing it?
Just a simple logic of my mind to answer your question.

What if your MS is not caused by CP infection, but another factor like CCSVI or something else? That's why immunosuppresant drugs effective for reducing MS severity, because there is an autoimmune mechanism involved.

And maybe there's another MS case that caused by CP infection, that's why antibiotics works for them, because the antibiotics could kill the CP bacteria.

Your question is "why do antibiotics and immonsupressing both work?"
Do you mean, why they work together in a same person who have MS? If that's your question than i don't know the answer.

And one more thing from my experience using immunosuppresant drugs (Rebif and steroid), i found my self became vulnerable to infections.

Just my thoughts. Thank you.

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Warm regards,
Linda

|For the joy of the Lord is your strength | A cheerful heart is good medicine, but a crushed spirit dries up the bones| God always leads us to where we need to be, not where we want to be|

mormiles wrote :


Yes, your statement is mine too mormiles. Controlling symptomps is not good enough for me. I want my disease to be healed not the symptomps only that's gone.

mormiles wrote :


Yes, it's true. It's better to know what really causing MS then we could fix the real problem to the bottom, than just having the popular medications or alternatives that only resolved the symptomps.

Thank you.

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Warm regards,
Linda

|For the joy of the Lord is your strength | A cheerful heart is good medicine, but a crushed spirit dries up the bones| God always leads us to where we need to be, not where we want to be|

There are so many other obvious experiments that one could propose that suggesting the use of human infants does not seem like a valid counter argument to studying CPN and a potential relationship to MS. What about using pigs? They are fairly long lived and don't have the ethical constraints that you imply.

NHE

My reason for choosing infants as experimental controls is more at dramatic effect rather than serious contemplation; it is a Modest Proposal, if you will. Conducting a research study, with C. pneumoniae, via Koch's postulates is impossible because of the time frame for disease states to surface. Marshall drank the "infectious broth" containing the bacteriurm Helicobacter pylori and caused gastric ulcers in himself which was subsequently cured by antibiotics, in the span of about two weeks. Koch's postulates dictate that an organism should be cultured from diseased subjects but not in healthy controls. Sriram showed this in 1999. The next steps dictate that introduction of the cultured pathogen into healthy subjects should induce the same disease state. Bearing in mind the fashion in which C. pneumoniae could potentially cause this is next to impossible to study.

In regards to animal studies, I do agree with you, they are very interesting and necessary components in determining safety and effects of toxicity in novel drug and therapeutics application. I faintly recall reading about some Chlamydiae as causative for ocular pathology in swine. There is, in fact, one case report of recurrent optic neuritis in an adolescent being resolved by antibiotic administration, where an observation period of 6-years (!) post-therapy determined that the boy remained without recurrence. The complexity of established multiple sclerosis; the anatomical differences between humans and pigs, (e.g.: pigs never stand upright); the administration of intermittent antibiotics in humans (potentially engendering aberrant Chlamydial states in vivo, which has been studied [both the existence of aberrant Chlamydial states & risk of MS being altered by antibiotic usage]); the potential for various serovars determining robustness of pathology; etc, could be cause for confounding. There are probably even more matters to take into consideration. But consider this: Barry Marshall drank H. pylori himself because his own animal studies were futile.

CuriousRobot,
I was just reading the thoughts of Gogo and you and I was just thinking as I raised some of the questions Gogo raised.
As for me, I did almost 7 months of the Wheldon protocol and I am very grateful for the help Sarah provided. Now I had to do a pause as I am getting ready for steroids. My neuro wanted it. Then, I want to continue it.
Of course if there were more evidence on the effectiveness of abx in my case, I would have not stopped it for a minute for steroids.

My problem is that when I hear a positive case it is always there in my mind that what if it is a coincidence, if it is a special case. As you know MS is unpredictable. Once, I saw a lady who did meditations regularly and she started walking again. Once I read about a guy who went regularly for reflexology and the same thing happened to him. Also improvements in RRMS patients cannot be valued in separate cases as the conditions of RRMS patients fluctuate.
I read the CPN pamphlet and this is why I started the Wheldon protocol. However, even when I got into contact with Sriram from Vanderbilt, he could not predict if abx helps me or not. Forums are a good place but it does not provide a proper statistics about success rates. The same thing happened to me when I got angioplasty. You could read so many success stories on the net, so you thought you must do it. Two years after my procedure I talked to the specialist what he thinks and he told me that CCSVI is not the cause of MS it is just responsible for some of the symptoms we attributed to MS before, such as fatigue. However, it is not likely to help progressive patients with motor function problems.

As the long term abx could have side effects and we still do not know what it does to our guts, we should be more careful. Any information or statistics would help us or our doctors to decide whether abx is good for us or not. I do not understand why at least we patients cannot see some statistics on those patients whom were treated by Dr Wheldon or Sriram. Also, some kind of testing would be needed to decide whose MS is most likely caused by CPN. Couldn’t it be the CPN is similar to lyme and only just a small portion of patients got it.

I agree with you that forums are typically not a good place for garnering reliable statistical evidence. I agree with you that alteration of the gut microbiome is something worth investigating in MS (TJ Borody, of Australia, observed remission and lack of progression in 3 MS subjects after fecal microbiota transplantation. One patient was observed for 15 years; the other two for less time). What's important is that Borody observed his patients for a very long time and noted that their neurological symptoms did not re-surface nor progress. Once this observation period passed did he decide to publish his results (only an abstract so far). Also, you should not be concerned over Sriram's neutrality. I spoke with him, as well, and he is not particularly fond of acting on a consultant basis with patients. Do not make the mistake and interpret this neutrality as negativity. He is still, however, enthusastic over C. pneumoniae's input into MS.

There might be the same reason why FMT and abx are working, but more studies like the one prepared by Borody would be needed. However, some bowel disease is caused by the heavy use of abx. So, it would be helpful to know which MS patients might benefit from the use of abx before starting the protocol. It would also give some credibility to the protocol if the experiences of the doctors would be summarized. When I talked to a lyme specialist he was open to the idea of a connection between MS an bacteria or virus; however, he thought that a year use of the three abx is brutal.

As for Sriram, he told me that in his cohort of patients the response to antibiotics has not been universally positive.

As I had to do a pause for a couple months after taking abx fo almost 7 months, it would really interest me what are my chances to succeed if I continue. I am just afraid that taking abx for a long time cause only damage. I just do not understand why it is such a secret what are the results if even Borody could publish his experience with FMT for MS patients.

The most likely case of "bowel disease" from antibiotic usage is Clostridium difficile infection, which can cause diarrhea, and later, if untreated, pseudomembranous colitis, which is very dangerous. The standard treatment for C. difficile infection is metronidazole. Bartlett at Johns Hopkins has studied this for many years. Probiotic supplementation (from the Lactobacillus & Bifidobacterium ssp.) will offset the risk of C. difficle infection whereas metronidazole combats clinically established C. difficile infection. The varied response in Sriram's cohort highlights an important issue with establishing this kind of clinical trial. Both Wheldon and Stratton tell the patients to customize their treatment schedule, but in clinical research, all aspects must be standardized. This may account for the lack of "universally positive" results in Sriram's trial.