Calling all Minocycline Users

duncan1 · Posted: Sun May 18, 2008 1:28 pm Post subject:

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.

cheerleader · Posted: Mon May 19, 2008 8:24 am Post subject:

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
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MacKintosh · Posted: Sat May 24, 2008 11:05 pm Post subject:

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.
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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