I’m sure this has already been discussed before but I am in the middle of a relapse right now and I really don’t feel that good!
Minocycline is in trial as potetially antiinflamatory / neuroprotective agent for long term use in MS.
The currently published results of a small study reported no more relapse after 6 Month into treatment (2x100mg Minocycline daily).
When you want to give it a try to improve symptoms that occured during a relapse you might find this thread helpful:
I hope you get better soon .
I felt an improvement in a week, maybe less after starting minocycline. The way I feel now convinces me now more than ever to give antibiotics a try. I felt that the risk, especially for minocycline, was low and the potential was worth the try. I am only taking minocycline 100 mg right now as well as 400 mg NAC. I am going to Vanderbilt in December to get started on the entire protocol at that time.
Have you started minocycline now? If so, give it a week and also write down your symptoms on a daily basis so you can see your improvent. Sometimes you don't realize something is better until you look back at how you had been.
If you don't see any improvement don't get discouraged. Many people don't see imrovement right away. In fact, you can feel worse before you feel better. Take that as a sign that the minocycline is working.
My appointment is with Dr. Sriram. I am so looking forward to going there. Are you being treated at the MS clinic there? Give me your impressions, etc, if you would.
I plan to post on the protocol once I get started. At this point I am doing 100 mg minocycline, 400 mg NAC and various vitamins (like B12 injections weekly). I also am on LDN 4.5 mg. I am feeling very good right now so I don't know what's working-but it doesn't matter as long as something does!
I'll post once I get back from Vanderbilt!
i do attend that ms clinic. if you need help finding it let me know i will let you know how to get there. my dr is dr moses. dr sriram is never there when i am. im usually in and out pretty quick. the staff there is really friendly. you should like it..have you gotten a bunch of questions to ask sriram or have you already spoken to them? i think thats pretty cool your doing this. i should have a bunch of questions for ya..maybe i should of just pm'd you...lol. have you ever been to nashville??
I am working on a list of questions but if you have any you think I should ask let me know. I always go into my appointments with a list of things I want to cover!
One thing I am going to find out ahead of time is if I am going to be tested for c pneumoniae. I don't care one way or the other as long as we are going to talk about antibiotics. But it would be nice to know, I guess.
Vanderbilt has sent information including directions so I think I'm okay there. But I'll let you know if I need anything. My husband is going to be with me. It helps so much to have a second set of ears!
I'm sorry if I should already know this, but are you on an antibiotic protocol since you go to Vanderbilt? Let me know how you are doing.
One major point was the fact that a year's supply of minocycline cost only $800 versus the standard treatments that range from $ 18,000 up to $ 40,000 a year.
PS: Since I've been taking doxycycline for almost a year now, I sure hope something is happening to those damaged nerves!
I saw this pop up and thought it might be relevant to this thread. I didn't look to see if it has already been posted.
FOR IMMEDIATE RELEASE
Acne medication may delay progress of multiple sclerosis
Canadian researchers investigate common medication
as alternative MS treatment
Calgary, October 25, 2007 – A common acne medication that has been
available for over 30 years has the potential to delay the progress
of multiple sclerosis and if proven effective, will offer an
inexpensive option for the treatment of early MS, says the MS Society
Clinical researchers in Calgary and 13 other Canadian centres will be
taking an in-depth look at an oral therapy known as minocycline after
initial studies have shown promising results. A new $4 million multi-
centre clinical trial involving 200 participants from across Canada
is being funded through the MS Society's related MS Scientific
"The benefits of minocycline are straight forward: it's relatively
cheap, has few side effects and can be taken in pill format," says
Dr. Luanne Metz, principal investigator for the study and a professor
of clinical neurosciences at the University of Calgary Faculty of
Medicine. "The aim of our research is to see if this common drug can
reduce the occurrence of further disease activity in people who have
experienced an initial attack of MS symptoms and who are at high risk
of progressing to definite MS. Without treatment, two thirds of
people facing this circumstance are expected to be diagnosed with MS
within 6 months. We believe minocycline can reduce this number."
In MS, myelin, which is the protective coating of the nerve fibres of
the brain and spinal cord, becomes inflamed. This inflammation can be
seen as characteristic lesions by magnetic resonance imaging (MRI).
Previous clinical tests of minocycline have shown an 84 per cent
reduction of MS lesion activity on MRI.
"There is obvious benefit in delaying the rate of disease progression
in MS, from improved quality of life to reduced healthcare expenses,"
says Dr. William McIlroy, national medical advisor for the MS Society
of Canada. "The breadth of the study, the reputation of the
researchers involved and the early clinical data supports the view
that there is considerable promise for minocycline. We would not be
involved if this were not the case."
Minocycline works by inhibiting the activities of an enzyme and
immune cells that are keys to initiating MS attacks. It has been used
in acne treatment for its anti-bacterial effects but studies have
shown its anti-inflammatory properties could be important factors in
slowing down MS. These insights were discovered through pioneering
research funded by the MS Society of Canada and led by Dr. V. Wee
Yong at the University of Calgary (U of C). Drs. Metz and Yong lead
the MS program at the Hotchkiss Brain Institute at U of C where many
of the early studies on minocycline took place.
In comparing minocycline to current therapies, the cost savings would
be substantial. In generic form, minocycline is available for as low
as $800 per year. Current MS therapies can cost between $18,000 and
$40,000 per year. Researchers note that minocycline would not
necessarily replace current therapies, but might delay the timeframe
in which they would be required.
The study will be randomized and double-blind by design.
Investigators will compare 100 mg of oral minocycline twice daily to
placebo over a period of two years.
Enrolment will begin in early 2008 and 14 MS clinics are involved
including institutions in Calgary, Vancouver, Burnaby, Edmonton, Red
Deer, Saskatoon, London, Toronto, Kingston, Ottawa, Montreal, Quebec
City, Sherbrooke and Halifax.
In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
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