Sarah
Someone treating MS as an infection.
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SarahLonglands
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Someone treating MS as an infection.
For anyone in the US who is of a mind to try treating their MS an an infection, a Stanford trained rheumatologist called Dr. M. Powell, known by Stratton and Sriram from Vanderbilt and using their regime, but based in Sacramento, is willing to treat you, if you can make the trip to Sacramento and are willing to sign an informed consent form. He needs to see you at first, for obvious reasons, but thereafter can continue consultations by phone. Email me if you would like me to put you in touch with him.
Sarah
Sarah
Last edited by SarahLonglands on Tue Jan 25, 2005 9:43 am, edited 3 times in total.
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SarahLonglands
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Strange how little interest this has generated:
I know the US is a big place, compared to our little island, but I also know that flying from state to state is comparatively inexpensive. To my knowledge only one person from the information I supplied has actually seen Dr. Powell and one more is about to. Maybe it is because he is a rheumatologist rather than a neurologist? My husband, as a microbiologist, knows everything there is to know about antibiotics and rheumatologists know far more about them than neurologists. My successful treatment has shown that MS is not the sole preserve of the neurologist. From the number of requests I got to find someone willing to prescribe the treatment, I thought a bit more interest might have been shown
Sarah
Strange how little interest this has generated:
I know the US is a big place, compared to our little island, but I also know that flying from state to state is comparatively inexpensive. To my knowledge only one person from the information I supplied has actually seen Dr. Powell and one more is about to. Maybe it is because he is a rheumatologist rather than a neurologist? My husband, as a microbiologist, knows everything there is to know about antibiotics and rheumatologists know far more about them than neurologists. My successful treatment has shown that MS is not the sole preserve of the neurologist. From the number of requests I got to find someone willing to prescribe the treatment, I thought a bit more interest might have been shownSarah
referral
Sarah,
I posted an invitation to contact me at Braintalk and did not receive a single request.
I am surprised that there seems to be a lack of interest- or perhaps it is simply a lack of resources to travel to CA? My plane fare to travel there (from an "undisclosed location") was $350 or so.
Dr. Powell is an excellent doctor, is highly intelligent, has a great manner, and is very up-to-date on the research concerning CPn, antibiotics, and various syndromes. He far surpasses any other medical doctor I've seen (and I've seen nine in the last year).
In contrast, my experiences with neurologists have been generally frustrating...and they have not been open to any ideas outside of the "mainstream". Also, their strategy for someone in limbo is to wait until they develop lesions, then treat them.
I posted an invitation to contact me at Braintalk and did not receive a single request.
I am surprised that there seems to be a lack of interest- or perhaps it is simply a lack of resources to travel to CA? My plane fare to travel there (from an "undisclosed location") was $350 or so.
Dr. Powell is an excellent doctor, is highly intelligent, has a great manner, and is very up-to-date on the research concerning CPn, antibiotics, and various syndromes. He far surpasses any other medical doctor I've seen (and I've seen nine in the last year).
In contrast, my experiences with neurologists have been generally frustrating...and they have not been open to any ideas outside of the "mainstream". Also, their strategy for someone in limbo is to wait until they develop lesions, then treat them.
I think the "community" dynamics is the reason you are not receiving many inquiries. There are those that are already on one of the CRAB drugs and probably do not wish to risk changing their regime; there are those that have chosen to stay away from drug therapy; there are those that have followed-up on their own and have researched other doctors; then there are those who are "looking around" and may need time to get more information -- that's my circumstance. I will be meeting with a different neuro in March. I plan on taking all the information from Sarah's husband's website and from Vanderbilt. Now, if this new neuro is not supportive of the antibiotics, then I will seriously consider contacting the doctor in California or maybe going to Vanderbilt.
I would imagine that many MS'ers (me included) are hesitant to stray too far from the neurologist (even though we may question their viewpoint).
I would imagine that many MS'ers (me included) are hesitant to stray too far from the neurologist (even though we may question their viewpoint).
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Brainteaser
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Antibiotics
Sarah,
What would be the merit in seeing Dr. Powell? Is this likely to be a different regime from your's? I have found the information you have posted and that of David to be very helpful.
Regards,
Phil.
What would be the merit in seeing Dr. Powell? Is this likely to be a different regime from your's? I have found the information you have posted and that of David to be very helpful.
Regards,
Phil.
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HappyDaddy
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Hi Sarah,
I have just a comment about the setup of the query. As it is set up now, you are mixing two questions.
First: Do you want to treat MS as an infection (with antibiotics and antivirals)?
Second: If yes, do you have a preference about doctor speciality?
Maybe link another question to the query; Do you want the NMSS to sponsor a trial in antibiotics and antivirals?
In this way, the results of the poll will be more clear and actionable.
Best wishes,
I have just a comment about the setup of the query. As it is set up now, you are mixing two questions.
First: Do you want to treat MS as an infection (with antibiotics and antivirals)?
Second: If yes, do you have a preference about doctor speciality?
Maybe link another question to the query; Do you want the NMSS to sponsor a trial in antibiotics and antivirals?
In this way, the results of the poll will be more clear and actionable.
Best wishes,
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SarahLonglands
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Sharon, yes, I understand that many people don't want to change what seems at present to be working for them, and also that some people don't want to take any drugs at all, not even something that you take for maybe a couple of years and then don't need any more. Also I know there are quite a few people who have managed to find a PCP to prescribe either David's regime or Vanderbilt's, depending on where they live, and then there and then there are people like you. No, what I found disappointing was the fact that I got so many requests, either by email or private message, about people who would be willing to treat in the US, then when I find someone, nothing, apart from two people who I know have or will be seeing him. You know, its always worth trying your neuro because a few are willing to try it. Most aren't but you never know until you try. Good luck!
Phil, I recognize your name from somewhere! The benefit of seeing Dr. Powell is merely for people in the US who are understandably reluctant to reluctant to go it alone or who can't persuade there PCP to treat them. The regime is basically the same and has the same end result, but uses slightly different antibiotics because, say, roxithromycin is completely unobtainable there unless ordered offshore. Stratton, for instance would love to be able to use it, but he just isn't allowed to. I am very lucky being married to the person who is treating me and I am very glad that you find the information helpful. Several people are seeing him from this country who post on thisisms, as you can see, and one person even wanted to come over from the US, but we came across Dr. Powell, who would be able to prescribe what would be acceptable there, as well as monitor the patient. That is all.
HappyDaddy, yes I am mixing two questions, but they are both relevant and I think not confusing. The main reason I didn't mention NMSS trials is because I am based in England and besides, there is a big thread going on in the General Discussion section about the NMSS and trials. Trials take years to complete, David and Dr. Powell are treating people now. C Pn is difficult to find even using the best available current methods, which is why they both often treat empirically. Many people don't want to wait for trials to be completed, especially when they often, like me, won't show diagnostic titres. They would rather just get on with the treatment and stop the disease in its tracks, rather than wait for more damage to be done, whilst awaiting the results of any trials.
Sarah
Sharon, yes, I understand that many people don't want to change what seems at present to be working for them, and also that some people don't want to take any drugs at all, not even something that you take for maybe a couple of years and then don't need any more. Also I know there are quite a few people who have managed to find a PCP to prescribe either David's regime or Vanderbilt's, depending on where they live, and then there and then there are people like you. No, what I found disappointing was the fact that I got so many requests, either by email or private message, about people who would be willing to treat in the US, then when I find someone, nothing, apart from two people who I know have or will be seeing him. You know, its always worth trying your neuro because a few are willing to try it. Most aren't but you never know until you try. Good luck!
Phil, I recognize your name from somewhere!
The benefit of seeing Dr. Powell is merely for people in the US who are understandably reluctant to reluctant to go it alone or who can't persuade there PCP to treat them. The regime is basically the same and has the same end result, but uses slightly different antibiotics because, say, roxithromycin is completely unobtainable there unless ordered offshore. Stratton, for instance would love to be able to use it, but he just isn't allowed to. I am very lucky being married to the person who is treating me and I am very glad that you find the information helpful. Several people are seeing him from this country who post on thisisms, as you can see, and one person even wanted to come over from the US, but we came across Dr. Powell, who would be able to prescribe what would be acceptable there, as well as monitor the patient. That is all.HappyDaddy, yes I am mixing two questions, but they are both relevant and I think not confusing. The main reason I didn't mention NMSS trials is because I am based in England and besides, there is a big thread going on in the General Discussion section about the NMSS and trials. Trials take years to complete, David and Dr. Powell are treating people now. C Pn is difficult to find even using the best available current methods, which is why they both often treat empirically. Many people don't want to wait for trials to be completed, especially when they often, like me, won't show diagnostic titres. They would rather just get on with the treatment and stop the disease in its tracks, rather than wait for more damage to be done, whilst awaiting the results of any trials.
Sarah
Better late than not at all
Browsing the forums I just found this post. I think the U.S. is kinda' divided by an imaginary line somewhere down the middle, there seems to be an eastern U.S. and a western U.S., I'm in the eastern half. Sacramento, CA just sounds SOOOOO... far away!
Where are all the Pro-active adventurous Dr. on THIS side of the country. I'm giving some serious thought about contacting the Drs. at Vanderbilt U. in Tennessee. I'm just apprehensive because 1) haven't heard anything about their trials lately and 2) I'd probably only be the 6,756,398th person that has done so.
Treez
Where are all the Pro-active adventurous Dr. on THIS side of the country. I'm giving some serious thought about contacting the Drs. at Vanderbilt U. in Tennessee. I'm just apprehensive because 1) haven't heard anything about their trials lately and 2) I'd probably only be the 6,756,398th person that has done so.
Treez
treez,
Regarding Vanderbilt. You might want to read a recent discussion we all had regarding them on another thread before contacting them. Let me find it for you.
I'll be right back.
Deb
EDIT: Here it is: http://www.thisisms.com/modules.php?nam ... c&start=90 Read the conversation between Daunted and I.
Bottom line? Even Vanderbilt doesn't prescribe antibiotics to their MS patients. Assuming you are ever even able to get a diagnosis of MS from them in the first place.
Regarding Vanderbilt. You might want to read a recent discussion we all had regarding them on another thread before contacting them. Let me find it for you.
I'll be right back.
Deb
EDIT: Here it is: http://www.thisisms.com/modules.php?nam ... c&start=90 Read the conversation between Daunted and I.
Bottom line? Even Vanderbilt doesn't prescribe antibiotics to their MS patients. Assuming you are ever even able to get a diagnosis of MS from them in the first place.
Re: Better late than not at all
Treez,
It's sad to say but going to Vanderbilt will be of little help. I know, I went there. I don't have a firm MS diagnosis and that complicated the situation, but I've spoken to at least one MS patient that communicated with them also, to no avail.
If you want antibiotic treatment PM myself or Sarah and we can give you the contact information for a doctor in the U.S. who is willing to assess people for this treatment. But Vanderbilt is not prescribing it.
In fact, if the information available on the web is correct, at Vanderbilt, Dr. Sriram has only treated 25-30 patients with MS with antibiotics. They've been working on this since the late 90s. It's very slow.
So, if you are interesting in trialing the antibiotic treatment anytime soon, I would recommend you stay away from Vanderbilt.
See the email from Dr. Sriram to myself, below.
From: Sriram, Subramaniam
Sent: Tuesday, July 13, 2004 9:20 AM
To: xxxxxxxxxxxxxxxxxxxx
Subject: RE: C. pneumoniae
Dear Mr. xxxxxxxxxxx,
The research that we are doing with MS has not evolved to a state where I am comfortable with diagnosing and treating patients with MS with antibiotics. That having been said I will not have any problems in including you in a trial that we are planning to implement when we receive funding from the NIH. That may be at least a year away. Until that time I will advise you to take counset from your physicians.
Sincerely,
Dr. S. Sriram
It's sad to say but going to Vanderbilt will be of little help. I know, I went there. I don't have a firm MS diagnosis and that complicated the situation, but I've spoken to at least one MS patient that communicated with them also, to no avail.
If you want antibiotic treatment PM myself or Sarah and we can give you the contact information for a doctor in the U.S. who is willing to assess people for this treatment. But Vanderbilt is not prescribing it.
In fact, if the information available on the web is correct, at Vanderbilt, Dr. Sriram has only treated 25-30 patients with MS with antibiotics. They've been working on this since the late 90s. It's very slow.
So, if you are interesting in trialing the antibiotic treatment anytime soon, I would recommend you stay away from Vanderbilt.
See the email from Dr. Sriram to myself, below.
From: Sriram, Subramaniam
Sent: Tuesday, July 13, 2004 9:20 AM
To: xxxxxxxxxxxxxxxxxxxx
Subject: RE: C. pneumoniae
Dear Mr. xxxxxxxxxxx,
The research that we are doing with MS has not evolved to a state where I am comfortable with diagnosing and treating patients with MS with antibiotics. That having been said I will not have any problems in including you in a trial that we are planning to implement when we receive funding from the NIH. That may be at least a year away. Until that time I will advise you to take counset from your physicians.
Sincerely,
Dr. S. Sriram
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SarahLonglands
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Re: Someone treating MS as an infection.
Hi Sarah,Anecdote wrote:For anyone in the US who is of a mind to try treating their MS an an infection, a Stanford trained rheumatologist called Dr. M. Powell, known by Stratton and Sriram from Vanderbilt and using their regime, but based in Sacramento, is willing to treat you...
Sarah
I'm definitely interested, but here's what I want to know more about--and I need a doctor willing to go the extra mile with me to find out. Excluding other possibilities for the sake of this conversation, how would I best proceed in determining whether "my MS" is bacterially vs. virally induced?
Obviously, your experience with anitbiotics and MS would say bacteria is the issue. Has anyone on this site had success by fighting it virologically?
For example, there's some belief in human herpes virus 6 (HHV-6) being the culprit and I've read elsewhere that some people have tried using valacyclovir, with some success. Even Zovirax, which I take for HHV-1, aka cold sores, has been used with some success.
In my own case, just knowing my body's susceptibility to both bacterial and viral infections, I could easily see a case for either.
So, given that, yes, I would like Dr. Powell's information, but I don't want to jump into assumptions that my case is bacterial vs. viral without appropriate tests, if they can shed any light on the topic. Is he able/willing to dig into this kind of stuff?
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SarahLonglands
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Hi Karen(?),
Over the years many people have tried to find a viral cause for MS but have signally failed. HHV-6 is often found as a co-passenger to CPn, so was thought even before CPn was discovered to maybe be a cause. There was recently a trial in Canada, I think, with valacyclovir which was not successful. You should be able to find more about this on this site. Dr. Powell has seen one person at least who posts on this site, 'Daunted', and he did do blood work to test for CPn. The best thing is to email him with your questions, so I will send you his address by PM. I think you have much less distance to travel than Daunted, at least.
Sarah
Over the years many people have tried to find a viral cause for MS but have signally failed. HHV-6 is often found as a co-passenger to CPn, so was thought even before CPn was discovered to maybe be a cause. There was recently a trial in Canada, I think, with valacyclovir which was not successful. You should be able to find more about this on this site. Dr. Powell has seen one person at least who posts on this site, 'Daunted', and he did do blood work to test for CPn. The best thing is to email him with your questions, so I will send you his address by PM. I think you have much less distance to travel than Daunted, at least.
Sarah
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SarahLonglands
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