Calling all Minocycline Users

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

Postby duncan1 » Sun May 18, 2008 12:28 pm

I may have been wrong about a German study in humans, but I could have sworn I read about a small scale, long term, trial of Minocyline at a USA university outpatient clinic, that produced excellent results.
I wasn't surprised at the Minocycline-ALS results as the small scale trials and individual case reports seemed to indicate that minocycline would have mixed results. There are also some concerns over dosage in the large scale ALS trial.

I have not heard about a single case report of Minocycline causing a more rapid onset of MS symptoms in humans, despite the thousands of MS patients who have been on tetracycline class antibiotics to treat acne/rosacea. MS and ALS have very different mechanisms of disease causation and the disease are not comparable, so linking ALS/minocycline failure with MS, was just scare mongering, IMHO. (Of course,I am referring to the Drs who made this statement, not anyone here...)

However, even in ALS, there are undoubtedly cases where the neurodegeneration is being caused by a underlying (probably) spirochetal infection, and the patient, if given antibiotic therapy, has a chance to recover. The problem, of course, is deciding which ALS patients should be treated with antibiotics, and which should not.
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Postby cheerleader » Mon May 19, 2008 7:24 am

Hey Duncan-

My husband and I became interested in the antibiotic therapy years ago, before his MS diagnosis. We are fans and appreciators of pianist/composer Keith Jarrett, and watched his recovery from chronic fatigue and cpn infection with the antibiotic protocol. We saw him play live in LA after years away from the concert stage. It was extraordinary! The next year my husband was dx with MS, and suffered crippling fatigue. The connection was made...and I found this board. I believe there are no "coincidences."

That said, I also believe in having a good relationship with a doc when following any medical protocol. There is still too much we "laymen" do not understand about the human immune system (which is far more complex than a mouse's) The failure of mino in ALS was huge and disappointing to many suffering with this horrific disease, and also gave docs pause. This is the reason I advocate medical supervision and a bit o' caution.
best,
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MacKintosh » Sat May 24, 2008 10:05 pm

Duncan, There is also the question of whether monotherapy with minocycline (or any abx, for that matter) is enough, or if an antibiotic cocktail is what will make all the difference in recovery versus decline.
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
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Updates?

Postby Cojack » Fri Nov 14, 2008 12:53 pm

Hello Cheerleader, Oedipuss et al.....

any updates on how minocycline is working for jeff? i'm considering taking it.

thanks,

jack
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Postby duncan1 » Fri Nov 14, 2008 3:09 pm

This is the abstract for a recent article regarding MS and Minocycline:

Can J Neurol Sci. 2008 May;35(2):185-91.

Pilot study of minocycline in relapsing-remitting multiple sclerosis.
Zhang Y, Metz LM, Yong VW, Bell RB, Yeung M, Patry DG, Mitchell JR.

Department of Clinical Neurosciences, University of Calgary, Calgary, AB, Canada.

BACKGROUND: Current multiple sclerosis (MS) treatment is only partially effective and not all patients respond well. The goal in this study was to evaluate minocycline for its safety, tolerability, and MRI impact as a potential therapy over 36 months after a three month run-in in ten relapsing-remitting (RR) MS patients. METHODS: Clinical assessments were at three month intervals until six months, then at six month intervals. Three Tesla MRI was performed monthly during the run-in and first six months of treatment, then at 12, 24, and 36 months. RESULTS: Treatment was safe and well tolerated. Annualized relapse rate was 1.2 during the run-in and 0.25 during treatment. The proportion of active scans was lower during the first six months of treatment (5.6%, p < 0.001) and during the extension (8.7%, p = 0.002) than during the run-in (47.5%). Consistent with these outcomes, mean T2 lesion volume remained stable over three years and percent brain volume change was reduced during year three (-0.37%) of minocycline treatment. CONCLUSIONS: This trial is limited by small sample and no control group but suggests that minocycline is safe and potentially beneficial in RRMS. This supports further investigation of its efficacy.
--------------------------

The U of Calgary is now conducting a large scale trial of about 400 people, IIRC.
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Postby Freddie46 » Wed Jan 14, 2009 4:28 am

I read a lot of information about Minocycline ( at Pills-meds.com ) and going to try it
Last edited by Freddie46 on Thu Nov 05, 2009 12:33 pm, edited 1 time in total.
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Postby Andy_G » Tue May 05, 2009 2:24 pm

Hi,

I'm a 33 year old MS patient from Belgium and I have using Minocycline since March 2004. I used Minocycline in combination with Avonex (till July 2004) and the combination of Minocyline and Betaferon since then. I'm using 200 mg a day (2 x 100 mg). The last 2 years I've been using Betaferon only once a week because of redness at the injection sites (normally I should use it every other day). Since February 2004 (the detection of MS) I have been totally relapse free. I have no side effects from Minocycline. I used to take it as a teenager against acne.


My MS history
-------------------
2000: "dropfoot" (no further tests were done at that time, so I didn't know I had MS). The symptom disappeared gradually after a few weeks on oral cortisone.

February 2004: severe optic neuritis attack & discovery of my MS by a neurologist :

My vision in my right eye (my left eye = normal vision) gradially went away until I had lost all vision in my right eye. Then MS was discovered. After a while my vision started improving. The damage was (partially) permanent. My eyesight in my right eye returned to approximately 20% of the normal vision and a part of my colour vision vanished in the center part of my vision spectrum. The vision at the edges of my vision spectrum came back to normal.
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Intereesting link

Postby pgy » Mon Oct 26, 2009 5:35 pm

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Postby SarahLonglands » Tue Oct 27, 2009 6:34 am

One of the things which made my husband very unpopular with the management of his hospital was his idea that doxycycline, very similar to minocycline, should be given to stroke patients very quickly after the event , but this was not even considered, just as vitamin D supplements were not considered neccesary for the elderly.

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 BooBear » Mon Apr 05, 2010 11:07 am

I have been on 100mg of minocycline for about the past month. The heartburn I can get is a bit troublesome, but nothing worth stopping the drug for at all.

I will admit that I do feel a bit better since taking the minocycline, but I am starting to question why I do. While my neuro prescribed it for the anti-inflammatory properties that the drug possesses, I can't help but wonder if the iron chelating properties aren't the real reason that I feel better.

My last MRI showed 2 new lesions in the past six months, even though I have not had another relapse. The minocycline is the last effort before the doctor wishes to move me from Avonex to BetaSeron...all while I am on a clinincal trial for oral cladribine. I am not going to go to BS willingly, so minocycline it is for me! (Until my Liberation Treatment! Woohoo!)
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Postby Leonard » Tue Aug 23, 2011 8:27 am

thank you all.
this issue and this whole thread are fascinating...

I have come to the antibiotics via my work on http://www.thisisms.com/ftopict-15188.html
particularly the last few pages are of interest.
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