CCVI / CPn

A forum for the discussion of antibiotics as a potential therapy for MS

Postby Notdoneyet » Tue Jun 08, 2010 8:00 pm

Hi, Deb,

I read your story a couple of times. It sounds like the neuro that you saw was probably Dr Luanne Metz, or one of her colleagues who is with the Uof C MS clinic, I think. I am not a medical professional by any means, but I posted my ideas here because these are the people who I learned about antibiotics from. Anecdote (Sarah), and the others helped to understand how to take the antibiotics and what to do if anything went wrong. They are the smartest peope that I know on the subject of CPn infection and the use of antibiotics in MS. I owe them all, especially Sarah, a great debt.

The studies that Ms Metz has done are superficial examinations of the use of one antibiotic, minocycline, in fighting MS. It has had good enough results. Good enought that Teva Neurosciences, the makers of Copaxone, got her off the track by paying her to study it's use with Copaxone. This study also showed good results and the MS Society made a little splash about it's effectiveness, at least here in BC. I've heard it has been listed as a recommended a treatment at the MS clinic in Kelowna. I believe that it's not a well known thing because it doesn't make anyone much money.

What is actually required is a much more rigorous, bacterial approach. Dr's Sriram, Stratton, et al, at Vanderbilt University in Nashville, Tennessee as well as David Wheldon, Sarah's husband, who is a pathologist in England have done the best work concerning antibiotics and MS. You can read a little here, but a lot of the "answer stuff" can be found over at https://www.CPn Help.org/ or at David Wheldon'site. http://www.davidwheldon.co.uk/ms-treatment1.html I started with David Wheldon's site. It's a great read,

Sarah, my doctors offered a 20% chance of restenosis, but now that I have "seen the promised land," I would happily get a balloon angioplasty every six months or on a yearly basis if I had to. Hopefully, the Canadian government will soon pick up the tab.

Getting a balloon angioplasty and then practicing bad vein health is kind of like getting liposuction so so you can eat more. I plan on keeping up the Wheldon antibiotic regime for a year, take 4,000 IU, Vit D / day, daily low dose ASA and try to live a lifestyle that promotes vein health. Now that I have healthy blood flow, maybe I'll have better luck beating the Cpn infection.

Colin.
Last edited by Notdoneyet on Tue Jun 08, 2010 8:13 pm, edited 3 times in total.
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Postby dlb » Thu Jun 10, 2010 5:08 pm

Colin,
Thanks so much for your reply. I definitely have some homework to do but honestly, when I read about the description of "walking pneumonia" symptoms, it describes how I felt last summer. I have never had asthma but I was starting to believe that I had asthma because I was wheezing, couldn't get a full breath & my chest felt soooo heavy & congested. The cold or whatever I had in 2004/2005 is not as fresh in my memory as far as the exact sx, but I remember it being a horrible time for me as well.

My neuro is actually still the one I was seeing in Edmonton although I have moved & now live close to Calgary. Luanne Metz's name comes up frequently in this area. Sometimes I think that may have been good fortune that I wound up taking the minocycline, but as you say, probably not enough. We are so fortunate that there is so much new & mostly that we all have this community for help & understanding. Thanks again & best wishes for your liberation success as well!
Deb
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Postby SarahLonglands » Fri Jun 11, 2010 5:29 am

Hi Deb,
I developed MS when I was 24, recently out of university, but it was very mild for at least 15 years. One thing that I always had in this time, though, was a lurking winter chest infection along with a dreadful cough. I developed full blown asthma when my disease turned progressive, but its gone now!

David thinks alot of Dr. Metz, but its a pity she got sidetracked with copaxone.

Colin,
I didn't know that one of the results of "liberation" was to grow taller: Just as well that I didn't need it! You sound so happy, I'm glad for you.

Sarah
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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Postby Notdoneyet » Mon Jun 14, 2010 10:49 am

Hi Sarah,

I'm not really taller, as the centipede crawls, but I am not so bent over, anymore. I stand much more erect, now. My exuberance is waning a little, but I am still very happy to have received angioplasties. It has moved the clock back several yeas on my MS, even before I started taking antibiotics. My walking seems to be slowly improving, now, as well.

Colin
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