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Minocycline has great promise as a therapeutic for MS (just search for it on our forums and you will unearth a mass of information explaining why). As it is a very straightforward therapy IF it works, there is a great deal of interest to see how those experimental souls willing to try it are faring.

Could all the people using minocycline please post their experiences in this thread? In the loose form of:

How long have you been taking minocycline?
What dosage?
What side effects have you noticed?
Are you better, same, or worse than when you started?

As always, remember that you should consult with your doctor prior to beginning a new treatment regimen-- medical advice is not given on this board.

Dear Arron,

I used minocycline 100mg x 2 a day as my first antibiotic treatment in june 2004, on the 10th day i woke up with the swelling on my eyes just like boxers have after their fight in the ring.The next day swelling was gone but a terrible pain started in my spleen which made me sure about a chronic infection, so i searched more information over the internet and found doctor sriram's patented invention http://www.pharmcast.com/Patents/Yr2003 ... 061703.htm
Then i used minocycline 100mg x2 in combination with rifadin 300mg x 2 which took the pain away from my spleen the next day.I used this combination without any side effects for four months then i swicthed to another antibiotic combination.Because of huge bacterial load i have after 13 years of progressive ms, i didn't have any improvements except mental fog was gone during that four months.


Take care,

Guner

Arron,

It may interest you to know that the latest CPn protocol from Charles Stratton at Vanderbilt is reportedly Minocycline, Azithromycin, Metronidazole.

Lots of combos work, of course, but he's reportedly pretty impressed with minocycline's action on CPn.

I know it is also reported to have other neuroprotective effects aside from anti-bacterial activity.

Hi all,

I have been taking 200mg of minocycline daily since the beginning of november 2004.
In december 2004 my walking had become so bad that I had a steroid infusion.
In mid-February 2005 I started taking roxithromycin and later pulses of metronizadole.
I think I stopped deteriorating in January/February 2005.
I am now no better or worse that I was in December 2004.

I tried Minocycline but wasn't able to tolerate it. It induced dizziness. I may try again, or not (I'm back to Doxycycline now) but thought this abstract would be of interest to anyone experiencing minocycline-induced dizziness or vertigo (quite common I am told):

The take-home message is to take 200mg of Vitamin B6 per day.

Antivertiginous action of vitamin B 6 on experimental minocycline-induced vertigo in man]

[Article in German]

Claussen CF, Claussen E.

Neurootologie, Universitats-HNO-Klinik Wurzburg.

By means of a former investigation it has been proved equilibriometrically that the application of 7 X 100 mg minocycline may induce a central equilibrium dysregulation of the brainstem type. It was the purpose of this study to further assure that the minocycline induced brainstem vertigo is due to a destabilization of a supervisory gamma-aminobutyric acid (GABA)ergic loop from the archeocerebellum upon the pontomedullary vestibular regulating pathways. As it is pharmacologically known that pyridoxine is essential for the synthesis of GABA, an inhibitory CNS neurotransmitter, 2 separate double blind trials on 20 healthy young persons each were carried out after the intake of 7 X 100 mg minocycline during 3 days with and without 7 X 40 mg pyridoxine simultaneously.

These trials were checked against an additional placebo or initial non drug investigation. In all the 40 test persons it could be proved that the amount of vertigo and nausea symptoms was increased significantly due to the application of minocycline only. However, when combining minocycline with vitamin B 6, the vertigo and nausea symptoms as well as the nystagmus signs from the monaural and the binaural vestibular ocular tests as well as the vestibular spinal signs from the craniocorpography recordings of the stepping and the standing procedures were remarkably reduced.

There were no statistical differences between the initial or placebo trials versus the trials with a combination of minocycline with vitamin B 6. The same holds for the vestibular vegetative reactions, measured by the simultaneous electrocardiography during the vestibular tests. All the equilibriometric tests applied showed a significant destabilization under the influence of a pure minocycline loading.(ABSTRACT TRUNCATED AT 250 WORDS)

Thanks for the post, Daunted. I experienced several episodes of vertigo, often resulting in a fall, during the five months I used minocycline alone. This continued during the first six months, or so, since I started the Canadian Wheldon antibiotic regime (doxy, rifampin, metro/flagyl). I collected many bruises and sprains, resulting from falls, in that time. Fortunately, now, after eight months, things are settling down and I haven't fallen (knock wood) for a couple of months.

Interesting discussion here on minocycline. I actually started taking minocycline early July (50 mg daily). My neurologist prescribed it to me for back acne. I then saw a dermatologist who told me to increase it to 100 mg before I go to bed.

Just two days ago, I saw my dermatologist again but he told me to switch to doxycin because it is safe and its anti-inflammatory effects are better than minocycline. My dosage is up to 100 mg twice a day (when I wake up and before I go to bed).

Let me know if any of you have heard that doxycin is better than minocycline.

thanks,

beyondms

although I noticed this is an old thread, I'm new to thisisms so I thought I'd post a short story of myself.

I turned 30 in 1990 and of course turning 30 is a large milestone. I was this very moment having a bout of nystagmus. Didn't know it at the time, but was yucky and crawling around the floor for weeks! so much for turning 30. Eventually, I saw a neurologist and was given steroids. Yup! steroids straightened me right up! Everything resolved, until 3 yrs later. Entire numb left side, no coordination in my left hand, painful lightening strikes in my head - trigeminal neuralgia - and was then sent for MRI's, lesions were found and diagnosed with MS.

I led a relatively normal life, had other bouts and always thankfully was able to resolve all except a foot that is still numb, L'Hermittes, other optic neurtitis, eye floaters, stiff neck and knees, occasional costochondritis, occasional very painful shoulder, cloudy head, hard to concentrate, foggy head, etc. I can say I share most symptoms of RRMS'ers.

I began to read and educate myself on "what if" the underlying cause could be infectious.

I choose to get tested for both Lyme Disease and Cpn.

I have both!

I have been treating since Nov '06 and have been on Minocycline, Diflucan, Mepron, Azithromyican, Tindamax, Rifamphin in some sort or combination...no, not all at once. supergirl is only a fantasy gal

but my pulses are 10-14 days every 6-8 wks. I feel good, I feel I'm getting better, I'm beginning to have a less than numb foot, haven't had a flare...stopped taking daily injections of Copaxone, and am working with a great doctor that doesn't have a problem if I did continue Copaxone, even suggests I go back to my neurologist...another words is Open to helping me feel better....and is willing to work with other doctors. He just orderd new MRI's with and without contrast.....I can't wait for the results.

I now see light at the end of my tunnel, and this came after my neuro mentioned:
although you've been relatively lucky with your MS, I don't want you to grow old and need a wheelchair, Copaxone is something that would benefit you.

I don't hold that against my neuro- it's all they really can offer- nice words, pat on the shoulder, and "modifying drugs".

I decided to give Minocycline a chance, and smile every day thankful for the internet and all of those who helped me discover the cause of my MS.

I can only encourage anyone with a MS diagnosis to also become educated and be your own advocate. I think we can all do better than what conventional doctoring has offered us MS'er for all these years.

the very best health to all,
tory

oh yes,
200mgs of Minocycline (great BBB penetration)
1500 mgs of Tindamax
600 mgs of Rifamphin
daily

Hello Tory, are you Sojourner's sister by any chance? Welcome, either if or if not! That's quite some mixture you are taking: I just stuck with doxycycline, roxithromycin and metronidazole/tinidazole. And all the supplements of course. I guess you list is more lyme based.

I am so glad you are getting better, though. I had RRMS since I was 24, it was very mild and didn't affect me very much for very long periods. I guess I believed it might always be this way, then suddenly in 2001, things went seriously worse and for a while I couldn't walk out of the house unaided. I got marginally better, then just began to go downhill again. So much for the theory promulgated on the UK MS society website about people living near normal life spans: I was barely in my forties and I come from a healthy, long-lived family.

I shall now go and read all your other posts while having my morning coffee!

Sarah

Hi Sarah, and thanks for the warm welcome!

Yes, I'm Sojourner's sister and have her to thank for "delicately" offeing me information on the possiblility of infection being the cause of MS.

You on the other hand will always be my real inspiration and your recovery was my continuing determination to stay the course..... of learning.

I can't say this enough: It was very very difficult for me to believe that my Neurologist could be wrong! He is a very highly regarded, very visible Dr in his specialized field of MS,,,,a researcher and speaker throughout the US.

How then, could he be wrong! ? I have nothing but kind words to say about him, I know he cares deeply about his patients, as I'm sure most Neurologists do.

No blame game from me, These neurologists aren't yet educated on the chance of MS and infection being related. For this reason,,,,I don't "blame" him and hold no grudge or any bad feelings toward him.

Actually, I intend to make an appointment with him; MRI's in hand along with educational material and hope to eductate him on this connection. Educating our doctors (our neuros) is IMO most important.
He then has a choice to look down this road, or not.

Reading about halting your progression Sarah became vital to me in my quest for answers. I couldn't escape your good, hmm, very good results!
This because my neuro did say (2003) there was the chance of me needing a wheelchair later in life! Simply stated: that Rocked My World!
How is it possible to "suddenly" find myself in that position? In 1990 he said with the research they have, MS sets a pace. In my case, it was 3 years between episodes and he said I would more than likely have a slight - minimum effect of MS in my lifetime. Years later it was obvious the research showed a different outcome.

As my husband and I drove home with my first prescription of Copaxone in hand I realized my disease was and still is a mystery to the medical profession,,,,and when they state there is NO CURE for MS, my chances of also going downhill in later years was starring me in the face!

This was my reason, along with Sojourner giving me small bits of information she learned to take my disease in my hand and find answers.

As for the very powerful punch of antibiotics I'm one: yes, I agree, it's aggressive.
This from my VERY conservative doctor! He does however believe in ridding this bacteria from me as quickly as I can tolerate it. I run my ship, if I find it's too much to tolerate, he follows my tolerance.

I'm pushing through treatment, not over doing, but "hanging in there. The herxes are uncomfortable,,,but the feeling GOOD days are soooo worth it. And each day that I feel GOOD, I continue to feel good.

Long gone are the days of feeling good, than sliding backwards....I feel good and go forward....feeling BETTER!

amazing!

Where would I be without the internet and these forums,,your forum? Staying the course....and waiting for a more than likely bleak outcome.

Thank you SARAH, Thank you DAVID!
tory

I feel a bit awkward about posting this here, since I have never taken minocycline in my life, but never mind!

The trouble is with neurologists is that they have been now educated into thinking that MS is an auto-immune disease. This wasn't always the case. Going back to the nineteenth century, Charcot thought MS might have an infective cause, he just didn't know what. Until the 1960s MS was generally known as "disseminated sclerosis" which as far as an infection causing it, seems more accurate, but nobody could ever find what it was, the name was changed and belief in auto-immunity set in.

The trouble with my neurologist is that he won't even look at my new scans, because he didn't order them. He works just across the courtyard from David, but has never referred anybody to him. People with SPMS or PPMS, who won't be helped by the commonly available MS drugs, are just told that there is nothing to be done, they should just make an appointment with an MS nurse and find out what lies ahead.

He threw a tantrum in during the appointment of another SPMS patient who is also seeing David, threw a British National Formulary down on the table and told her to take her pick from there, because since the antibiotics she was taking would do her no good at all she might as well pick something else. Never mind that she is now walking better than she has done for years, thinking better, and full of energy.

So I'm glad your sister "delicately" offered you the information. And I hope you have better success with educating your neuro.

Sarah

Anecdote wrote:The trouble with my neurologist is that he won't even look at my new scans, because he didn't order them. He works just across the courtyard from David, but has never referred anybody to him.

I have read you mention this more than once. Is there any reason you wont go and see him, get him to request an MRI, so then he WILL look at it?

Ah, because in the UK you are only advised to get an MRI by a neurologist if you have a sudden turn to the worse and once you are diagnosed as having SPMS you are generally put out to grass and left to it, with an MS nurse to offer help and advice. I could go to see him privately and pay to have an MRI, but I don't feel inclined. I never even got the follow up appointment that was offered after this diagnosis, either because I was told to make an appointment to see an MS nurse but I refused, or because he got to know that David was treating me.

So, basically, I am not going to pay a couple of thousand pounds just to get him to look at a new MRI when I already have some to show him.

Sarah

a couple thousand pounds!? in Aus it costs a couble hundred dollars. And if you were insured, that would probably cover the bulk of it.