Minocycline

[MacKintosh]

What's CIS?

[LifeontheIce]

Clinically isolated syndrome.

[tory2457]

Mino seems to be a very helpful abx for me.. and I'm in treatment for a few years now.

I do however take Vitamin C with Mino so not to get skin or teeth discoloration, and I do take Minocycline each day along with other meds for co-infections. I also pulse my meds, but I'm on them for periods of 3- 4 weeks continuously.

Hats off to any neuro who is willing to give out a Mino script or even a Tetracycline script or well, you get my point.

Don't be afraid to give abx a try.

the best,
tory

[DavidR]

The Canadian MS site just posted an update regarding their minocycline trial. Here is the link: www.msanswers.ca/QuestionView.aspx?L=2&QID=2686. The conclusion of their statement was: "Because this is a long trial, it is anticipated that results will not be forthcoming for dissemination for about 4 years." I hope they are exaggerating the time frame.

[DavidR]

Here is another interesting possible explanation why Minocycline may be helpful: http://www.msrc.co.uk/index.cfm/fuseact ... ageid/3021

[DavidR]

I have been on Minocycline for about 4 1/2 years now. I started taking it about 5 months after my first and only MS attack. My MRI from 5 years ago clearly show demylination, but there do not seem to be any changes in subsequent MRIs, including one just a few months ago. I have not had another incident and I have no disability, although I have a few residual symptoms from that first episode.

However, I have developed ringing in my ears (tinnitus), which is a potential side effect of the Minocycline. I also am not excited about long term use of an antibiotic.

Therefore, I am considering discontinuing the Minocycline. I am wondering if there are opinions out there as to the wisdom of this?

Thanks!

[MacKintosh]

I've been on three abx for over six years and really don't care if I have to take them forever, so long as the MS is beaten back. To me, it's just the price I pay for my recovered health. What are your concerns about long-term abx, David?

I was thinking, if you just want to stop the mino because of the tinnitus, maybe you could switch off, to doxycycline? That way, you would still get the benefit of an antibiotic, but without the (possible) side-effect you're experiencing.

[DavidR]

I have a concern with taking any medication long term if I don't have to, because all medications come with side effects. With antibiotics in particular, one concern is developing antibiotic resistance. Another concern is the Tinnitus, and there there are other potential side effects with Minocycline as well as the other cyclines.

[SarahLonglands]

David, the medications normally prescribed for MS come with worse side effects. I took three abx for four years with no ill-effects. I took probiotics every day, two hours apart from abx which is essential.

Sarah

[Jamess]

DavidR: If I were you, I would never stop working treatment. Not everyone has this luck.

[MacKintosh]

The whole purpose of taking the two antibiotics at once is to AVOID developing resistance. As I told a friend today, who asked 'but, what if I really need anitibiotics for some infection later on'... this IS the infection you've been waiting to use abx on! Really, if we had MRSA, would we be saying, no, don't give me abx; I'm saving them for something important? Heck, no.

THIS is the important infection of your life.

[DavidR]

I discontinued Minocycline about a year ago after having been on it for almost five years. I was concerned about long term use of an antibiotic and the fact that my teeth and eyes were turning grey, and I developed tinnitus (all potential side effects of Minocycline.) Nothing has changed in my condition during the last year, but it is possible I never had MS to begin with since there was only one set of MRIs showing demylination and only one attack. I have been using whitener to try to get the color of my teeth back and I have seen some improvement. My eyes still have a visible grey streak and I still have ringing in my ears. Knowing what I know right now, I would still do the same thing and start using Minocycline at the first indication of MS. The currently available evidence supports it, it is the most economical treatment, and it has the most benign side effects and ease of use. I don't know whether Dr. Metz will ever complete her study in Calgary, but I hope that she does (she was given a $4 million budget by the Canadian MS Society, so she should.) If the study is completed, the results should be available within the next 2 - 3 years. Even if it turns out that people have taken minocycline unnecessarily, the downside is pretty low. I am not advocating that people necessarily reject the desease modifying drugs recommended by doctors, but you may want to think twice before rushing into them. I also took an average of 1300 IUs of vitamin D every day, and I am continuing with that. Who knows, maybe vitamin D is the silver bullet. I certainly don't see how it can hurt at this point.

I am hoping nothing changes for me, but I will post again if it does.

[SarahLonglands]

David has it ever occured to you that taking minocycline for that time might have stopped the disease in its tracks? You did only have one small lesion, after all. I was taking doxycycline et al for four years and have not had an attack since, although I was far. far worse than you ever were.

I hope I am right.

Sarah

[DavidR]

Nothing has changed in my condition, but I thought I should share a message I got from Dr. Metz (the Canada neurologist who is conducting the Minocycline trial). Dr. Metz said that one of her patients had previously tried taking 2000 IUs of Vit C daily to combat the grayness that was appearing in her skin, eyes and teeth because of the Minocycline, and that the discoloration was improved. They can't say for sure that this is cause and effect because it is just one patient, but Dr. Metz suggested it might be worth a try at 1000 IUs. However, she also cautioned to check with my doctor first and referred me to this website for more information on vit C http://ods.od.nih.gov/factsheets/Vitami ... fessional/.

If I were starting over today with Minocycline, I would also start taking the Vit C right away, as well as regularly eating yogurt to replace the bacteria.

I am also looking forward to Dr. Metz's study results which, hopefully, will be out next summer.

[grandsons4]

Kefir may be a better source for good bacteria, having a greater variety of bacteria, some of which are able to colonize the gut.