This Is MS Multiple Sclerosis Community: Knowledge & Support

My daughter's neuro has mentioned starting her on minocycline. She is currently taking Rebif 44mcg. I see this is fairly experimental. Does any one have any experiences with this treatment course?

Your daughter's neuro sounds like he has a brain in his head, which is refreshing, considering so many of our experiences with neuros.

I'll send you a private message, but in the meantime, please read the old posts here under antibiotics. I found this part of the site three years ago, when I was newly diagnosed with rapidly deteriorating MS. I'm at about 98% of who I was pre-MS and happy as I could possibly be with combined antibiotics and the Wheldon protocol.

You might also want to read this: http://www.davidwheldon.co.uk/ms-treatment.html which is Dr. David Wheldon's explanation of the cause and treatment for MS

_________________
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi,

has anybody read any blogs or leaks as to how the Canadian Mino trial is performing?

thanks,

Jack

Unfortunately, despite the 2007 - 2008 multi million dollar commitment from the MS Society of Canada, the researchers have not posted any updates on the MS Society of Canada website. I would have expected they would have at least started recruiting by the beginning of 2008, but that does not seem to be the case. Other than the MS Society of Canada website, you can also look for updates at http://clinicaltrials.gov. As of November 2008, it appears that they have not yet started recruiting. It would seem that it should not take long to get 200 recruits in Canada.

Hello David,

i'm from Viking land/live in Vancouver...i think the trials have started/i spoke recently with the social worker at the MS society there/and one of the neuro's i just saw is heading the BC trial...i asked him and her just smiled....vikes stink

jack

http://www.thisisms.com/ftopic-1208-30.html

please see my last post in the thread above.

They do have several trials going on with Minocycline. The one that Duncan references has been ongoing for several years and involved 10 patients. Since then, they have also done a small study comparing Minocycline + Copaxone to Placebo + Copaxone. More recently they started another small study comparing Minocycline + Beta Interferon to Placebo + Beta Interferon. However, the study am am referring to and am most interested in is the study of 200 patients with a first demylinating event where they compare 100 patients on minocycline with 100 patients on placebo. That is the study that got the multi-million dollar commitment from the Canadian MS Society in 2007 and for which there has been no update on the Canadian MS Society Website and for which the government clinical trials site says "not yet recruiting."

hi,

yes...it's the one i'm referring to also...i believe it's underway now...i'll try to find out this week...i have a presciption for it/and am contemplating trying it

j

I've been on and off minocycline for nearly a year and a half, and I took it continuously for 6 months at a time, including 3 months at 400mg/daily. I take it because it suppresses my joint (mainly left knee) pain and decreases my brain fog to tolerable levels and cuts my tendency towards depression and fatigue. At 400 mg/daily I could literally feel my IQ expanding every week, and my short and long term memory improved as well, and at that level it was equivalent to 2000mg of IV cephtriaxone/daily in its perceived effect, but I usually take it at 200mg/daily or 300mg/5 days week. Although I was infected with Lyme Disease, I have/had many MS like symptoms and the intense joint pain did not begin until 14 years after the initial infection.


If you take it, make sure you also take an effective form of acidophilus, eat lots of plain yogurt, and lots of green leafy vegetables and salads - cut out the sweets or GI tract problems can occur when on a steady regimen of minocycline. Despite what the Dr might say, it is OK to take with milk, and in fact I cannot tolerate it without food, so I take it mid meal. Try and be active for a hour or so after taking it, and avoid lying down during that hour. The only real side effect I've noticed is that it tends to give me a very dark tan, and causes some minor pigmentation spots on my arms. you should avoid prolonged sun exposure.

Cojack,

I have been taking it for 15 months. I take 100 mg 2 times per day, which is the same as what they were giving in the first Canadian study. My neurologist said he was skeptical it would help, but felt that it wouldn't hurt. I take it an hour before breakfast and an hour before dinner. I haven't had any side effects from it so far. I do eat yogurt at least every other day now. I also take 1000 IUs Vit D with lunch.

thanks duncan/david...david...i'm new here...do u have ms? if so what type...has mino stopped your progression etc? there's a plethora of LDN blogs...i can't find alot of Mino off label or testosterone off label blogs? as i'm trying to decide whats best....also, re: mino...i'm now taking about 10g daily of refined omeg 3 fish oil (ala barry sears anti inflamation zone book for neuropathy pain...i don't see any adverse affects combining mino with that....david/where in Minnie do you hale from?

Remember to take your probiotic and yoghurt far apart from your antibiotics, or you negate the effect of the probiotic.

_________________
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I usually eat yogurt for breakfast, about an hour or an hour and a half after taking the mino. I hope that is far enough apart. The drug labeling seems to indicate its OK.

As far as whether it has helped me or stopped my progression, it is impossible to know with just one person or a few people telling you their stories. Even if one person takes it and then doesn't progress, there is no way to know if they wouldn't have progressed anyway. The only way to know if a treatment works is to look at the results of a large comparison study. The reason I take mino is because its cheap, safe, and I was impressed with the results and thoroughness of the initial Canadian study. I am also hoping that its effectiveness will be proved one way or the other within the next couple of years, so that if it is not effective I will not have done too much harm by having taken an antibiotic long term or delaying more proven ms treatment.

A also hope that Minocycline (I just ordered it online at Discountpharmacy24.biz ) will help me

The clinicaltrials.gov website was just updated to show that the Calgary researchers are now recruiting for their CIS trial.