This Is MS Multiple Sclerosis Community: Knowledge & Support

No (my fault), that's not what I meant by "duplicating the results". What started the whole thing was that a man who was given antibiotic treatment went fairly suddenly from being in a wheelchair to walking!

THAT'S the "duplication" they haven't been able to produce again. NOT whether they are detecting CpN or not. Almost 70% of the population tests positive for Cpn.

Sorry, my fault. I wasn't being clear. I just "assumed" that everybody knew what had "initiated" him looking into CpN in the first place.

The below is what "initiated" Dr. Sriram's research into CpN and MS in the first place. THAT'S what I was referring to. They have not been able to duplicate the same type of rapid "recovery" again.

And yes, there is evidence that minocycline (and/or other antibiotics) helps. I'm not debunking that at all.

Deb

Deb,

But this just doesn't make sense. They doctors at Vanderbilt aren't prescribing antibiotics but they haven't been able to duplicate their first case?

We need hundreds of patients to have a really valid scientific study, here. I have no idea why this has not happened- others, including you, would know more about this. But if they have a kit that can test for CPn and preliminary evidence that it might be helpful, it's hard for me to fathom why a large mutli-center trial isn't being staged. Let's get 200 patients in each group and see what happens!

In the links I posted elsewhere (one of which you quoted) some of the patients are described and many of them had impressive improvements. If they were expecting everyone to get out of their wheelchairs, I think that would be unrealistic- if there is long-term damage, it is unlikely to be so. Certainly the Vanderbilt docs realize that. (And the case in question was on antibiotics for 18 months...)

As far as the testing controvesy, I'm not referring to the fact that most people have antibodies against CPn (meaning in most cases that they have had the respiratory infection once in their lifetime), but the fact that other labs haven't duplicated the rate at which Vanderbilt found CPn in the CSF of those with MS (100% in one study).

Remember, that first man had not been officially diagnosed as HAVING MS. Just that he came down with "symptoms of MS". There's the difference. When Dr. Sriram tested him to try to find out what WAS wrong with him, he found the chlamydia infection and THAT is what he was treating. As a separate thing.

THEN the possible "connection" was made that perhaps CpN might indeed having something to do with MS, also. (So many neurological diseases have overlapping pathogenesis in common anyway.)

That's where the confusion is. So...........now..........until Dr. Sriram can find the PRECISE connection that TRULY justifies completely prescribing antibiotics SPECIFICALLY for MS treatment or therapy, he is holding off on making that claim until it is proven (and from prescribing antibiotics to MS patients outside of a clinical trial result). There are a lot of "liability" issues when you are on "staff" (an employee) of a medical university institution.

From my understanding, Dr. Sriram did (not long ago) attempt to recruit a large clinical trial, but it fell through. I don't recall the details right off the top of my head at the moment.

In the meantime, he is still pursuing "bench studies".

What I was told by Vanderbilt (just last week) was that clinical trials are so expensive (costing millions) that they shy away (as an Institution) from conducting them until such time as there is a certain percentage of "overwhelming", shall we say, evidence that spending that kind of money is justified. That's the hang-up they are in right now. Catch-22.

In order for Vanderbilt to get the funding from another source (such as NIH or a pharmaceutical company), Vanderbilt University itself won't foot the bill for it (I'm sure they can't afford it), Dr. Sriram needs to find some scientific conclusions that will convince them. (And believe me when I tell you, convincing any of the "thems" that fork over money is extremely difficult.) It's the funding that is the hang-up right now for them.

Hence why when I was talking to them about my research, I reassured them that I was only talking about bench studies.

Deb

EDIT: Sorry, I started typing so fast, that I didn't finish a couple of my sentences correctly and had to keep popping back in here to edit!

Sorry........STILL editing! That's what I get for being in a hurry.

Perhaps this is a minor point but I think it is the same thing. At any other hospital in the nation he would have been diagnosed with MS. No one else tested for CPn.

I know. I totally understand.

Trust me, as you can see from my other posts over the last few days, all this "Catch 22" crap with research and funding, etc., will make you nuts!

People may think I "nit pick" about words, etc., but I'm telling you. I'm NOTHING compared to the medical research field itself! I'm "detailed", but they take the cake!

Deb

P.S. Hey, if you think I haven't given them a piece of my mind about using "common sense" or should I say about them NOT using common sense, well............need I say more?

Oh.........I forgot to explain their "conversion" type of techniques they use, also.

They can take an anecdotal "result" in an actual person and transfer (convert) that scientifically to a "model". That model can then be tested in vitro via bench studies (not involving humans).

And remember, I said Dr. Sriram was not prescribing it to his "patients" yet. There is another difference.

There are "study subjects" and "patients". Now..........that's not to say that Dr. Sriram hasn't done some here and there testing of some antibiotics on some "study subjects" outside of the clinical trial atmosphere and outside of his personal medical practice, for his own information (which wouldn't necessarily be publishable, though). "Study subjects" are different than "patients".

Don't you LOVE it!????

Welcome to the world of medicine!

Deb

EDIT: And I can't even BEGIN to explain Vanderbilt's internal "policies and protocols", etc., that apply to every little move you make when you are employed by them. That's why I shied away from contacting them in the first place. I use the term "Big Daddy control" of research when I refer to Vandy, even though they aren't providing ALL the funding for research. They do still provide the "labs", etc., and they have rules for their staff. Nothing is ever easy.

Oh, and I forgot to mention all the different types of "review boards" that are involved not only within Vandy itself that you need approval from, but the "governmental" IRBs that you also have to go through even if you are a pharma doing a research trial. It's never-ending!

Hey, though! The GOOD news is that the NMSS is at least funding Dr. Sriram's initial bench studies in order to come up with the amount of "proof", shall we say, that will help him to then convince another funding institution or pharma corporation (good luck on engaging the pharmas, though, because there wouldn't be enough profit for them if an antibiotic proved to help) to grant Dr. Sriram the funds to do a fairly large clinical trial.



Once Dr. Sriram can produce what is needed to convince "them" (probably the NIH) of the scientific association between Cpn and MS to the extent that is going to be required, and be granted funding for a clinical trial from the NIH, then he'll be able to move on more freely into the clinical trials that everyone would like to see happen.

He's working on it.

In the meantime, the U.S. government is threatening to decrease the funding of the NIH, which the legislative advocacy group of the NMSS is trying to lobby to stop. If the Bush Administration succeeds in decreasing the funding of the NIH, that will probably hit MS research pretty hard. We don't get but a few cents on the dollar per patient for research funding as it is in MS. http://www.nationalmssociety.org/2005_outlook.asp

Deb

Thanks for the responses.

What worries me is the focus on testing. What if routine and highly accurate testing for CPn is beyond the scope of modern science, but the application of antibiotics is not?

Then those of us doing empirical treatment look pretty smart!

But seriously I guess they'll want proof of the pathogen before trying to eradicate it- I just wonder how this confounds progress.

You got that right!

Maybe that's why most of us (as you will hear often) are so exasperated over the appearance of the "lack of progress" over the past 50 years in MS research. Too many bureaucratic obstacles that slow everything down to an almost standstill sometimes!

Trying to get through, over, under, and past all the processes and protocols (not to mention "politics") is like trying to walk through a literal mine field!

Actually, I think (from the way I'm feeling at the moment) that I'd rather try the mine field!

Deb

EDIT: And yes, the "testing" methodologies are not necessarily keeping the same pace as the possible treatments of MS are keeping. And I get frustrated at the lack of rapid implementation of the newest methodologies that can help with the diagnosis and assess the progress of MS, also. There is another problem. Most of these newer methodologies are not even being used in clinical trials yet, and should be! If you'll notice, the NMSS (yes, I know.....I always refer to the NMSS, but they are spread in the broadest areas) has also gathered together (or are participating in) a forum or panel or something that will help to change the stuck-in-the-mud practices of clinical trials, and they are funding research into finding (and/or proving) better and more effective diagnostic and prognostic methodologies, modalities and/or technologies.

All of that will compound the complexity of MS research, also.

http://www.nationalmssociety.org/Research-2005Feb1.asp

You know, here is another late thought that I want to explain.

Vanderbilt's reputation (the doctors there) is that they do not diagnose people with MS very often. They tend to shy away from any quick diagnosis of MS. (Ask CCMom, she will also tell you that.)

Another neuro even remarked to me personally how if the doctors at Vanderbilt diagnosed you with MS, then you must REALLY have MS! (That's because it's hard to even get a diagnosis of MS from them in the first place. They tend to drag out any diagnosis of MS, and usually want to follow a person for at least one full year FIRST before finalizing a diagnosis of MS for you or from even prescribing injectable treatments for you.)

I have met several people who have gone to Vanderbilt and they all experienced the same thing. They then went somewhere else in order to get their diagnosis, so they could start treatment.

Vanderbilt will diagnose you with something "less" than MS first. ADEM (transverse myelitis) or fibro,..........things like that. That is common knowledge around here in Nashville.

And the pattern is that if you go to them for a second opinion AFTER having obtained a diagnosis of MS from another neuro, etc., Vanderbilt will un-diagnose you. That also happens time and time again.

Their opinion (which was also expressed to me by them) is that MS is diagnosed too "easily" and "quickly" by most neuros.

(That may also throw another "wrench" into the "whys" and "what fors" regarding Dr. Sriram and his research, etc.)

Deb

Thanks, Daunted,

I will get the person concerned to read both this and your other list. He is an intelligent person and will be able to take everything into account.

They are trying their utmost to get another, larger, trial rolling soon, but they do have to take into account the various pro/prescriptions asked for by the FDA or NIH or whoever - remember that I am English!, and also the general difficulty of getting people in to the trial in the first place.

I think I would be put off by the number of lumbar punctures required, probably by the FDA or NIH . MRIs are nothing in comparison.

I can't help but compare my experience with this: I started with rapidly progressive MS, I was written off by the neurologist, but as soon as I started the equivalent antibiotic treatment, it stopped dead in its tracks. No new or enhancing lesions since, vast improvement in my EDSS ratings, but I am not in a trial, so don't count. Ah, well!

Enjoy your drink of red wine tonight.

Sarah

Edit on Feb 23rd, highlighted in blue

Interesting, interesting. I was referred to either Mayo or Vanderbilt for a 3rd opinion and I went to Vanderbilt. Dr. Moses told me he had a "high threshold" for diagnosing me and told me I didn't qualify. He called it a "clinically isolated event with some self-reported circumstantial history of previous neurological events". (This is a nice way of saying that he believes the stuff since the virus, since they were documented by my neurologist, but that he isn't going to enter the years of minor neurological symptoms into evidence, so to speak).

But my 2nd opinion had told me I would eventually be diagnosed with MS. The note Dr. Moses wrote pretty much scoffs at the idea.

Yet my current neurologist, a MS specialist, is watching me closely, and understands why I am concerned about MS. He is tending more towards a "benign MS" designation.

I wish I would have known all of this before I went up there- or maybe it all worked out for the best, since I don't know that I would have taken an interferon or Copaxone even if offered.

I was so impressed with them at Vanderbilt, but it should be publicized that they are conservative in their approach. I didn't know that going in. My regular neuro was already being conservative- I was looking for the devil's advocate approach.

Yep...........Dr. Moses! (Ok, now I'm cracking up!)

Ditto, Daunted! (But I did know all that going in, so I expected it. I just shook my head yes, and agreed with whatever he said.) Aren't I bad?

Well, devil's advocate wouldn't have been Vandy! (I'm sorry..........nothing about MS is funny, but for some reason this whole situation strikes me as funny now.)

Yes, the Vandy MS Clinic is "conservative", allright. And that's putting it lightly.

Hey, have a good one Daunted!!! Hang in there and keep on keeping on, as they say!

Deb

P.S. And yes, I liked them, too (personally - you know)...........until last week, that is (as you can probably tell from my recent posts under the "General Discussions" forum.) I've calmed down a little bit now, though.

If they could just get like 40 people in each group they could do a decent statistical comparison and then practicing doctors would be more willing to try it, I think.

Next time they do a trial, I hope they use the protocol I'm using right now... including the Flagyl.

I do hope your husband gets that article published somewhere, eventually....perhaps he could combine with some other doctors to increase the number of cases?

Daunted,



Well, such a long time has passed that he has enough new cases himself, but if you keep rewriting everything you never get anywhere. It is the co-authors turn to decide where to send it to now. After that, it will be the samizdat press and you will get to see it anyway.



I think this would take too long to show a result for the 'powers that be'. I have a hunch that it might be offered to everyone after the initial trial is finished.

I think for the short term, though, we, Deb, you and I just have to stick with our empirical treatments. If these same 'powers that be' don't like to much anecdotal evidence because it colours the result of something, well, this portion of anecdotal evidence would sooner that than be stuck in a wheelchair, I'm afraid. (I think that bit about anecdotal evidence was pinched from the British MS society: I'm not sure because I don't go there!)

Sarah