This Is MS Multiple Sclerosis Community: Knowledge & Support

Remind me again the rationale behind these pulses which cause me to become really WEAK ..... For those who do not know, my history is PPMS, 5th year since the onset of symptoms, slow progressive increase in spasticity, bladder issues and ability to walk. One year on CAP(doxycycline, azithromycin and my least favorite flagyl pulse every 4th week).

Back to the reason of my post.....The flagyl pulse was originally prescribed as 500mg, one tablet 3x a day for 7 consecutive days every 4 weeks starting on fourth week. I've never been able to tolerate that much and still function either at work or home. I have been able to tough it out over Friday, Sat and Sunday. After the third or fourth pill, I become so weak I loose my ability to use my MS affected right arm or right leg. After I discontinue the flagyl, function returns after about half a day which for me means I can be back at work Monday Morning. I'm wondering if you folks are convinced the flagyl pulses are worth it. I know medical research says the metronidazole is necessary but how much, how often and how long????

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Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />

Hi Smilingface, many people find this difficulty. I didn't but I'm sorry that you do. The rationale behind it is that it is the bactericidal antibiotic which kills the pathogen rendered non-replicative and therefore useless by the bacteristatics. David is much more relaxed about how much to take and how often than the amount you have been prescribed every four weeks because he knows that people need to remain functional and not be pushed into stopping treatment. For this reason he will say take as much as you can stand and no more. You also don't need to take it on the dot, every four weeks, or three weeks in his regime. For instance, if you are going on vacation, have a break from it but just continue the bacteristatics.

Now, it isn't strictly necessary to take metronidazole because eventually the non replicative pathogens will be dumped along with the natural cell death and replacement of your own body. You will need to carry on with the non-replicatives for much longer, though. To avoid this you could just carry on taking it whenever is convenient but just for as long as you can stand.

The original Vanderbilt protocol didn't use flagyl at all and people still recovered, Astrodiana from CPn Help.org being one of those. On the other hand, someone from Florida who was found to be free of CPn by a lumbar puncture, at first seemed clear of the disease but it later returned. One would assume that the CSF was clear that day, but it was still lurking in the brain tissue. This can happen because the CSF is replaced so often: more like a fast flowing stream than a stagnant pond.

Sarah

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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.

And my two cents' worth: I didn't catch who prescribed that way for you, so can't logic it out, but the protocol most of us are on is a FIVE day pulse of flagyl, not seven.

Of course, two people recently seen at Vanderbilt are on longer pulses, by prescription, and I would trust the folks who originally devised the protocol. Even so, the flagyl is done as tolerated and if it's untenable, you have to know when to say when and take it for a shorter period of time.

I had almost no negative response to flagyl, beyond being more tired at first (that only lasted a few pulses) and being more cranky or testy (which I noticed in year two, but it's almost gone now, as well). I still wasn't willing to push the envelope and take it more than five days back then, as I knew I had to be at work no matter how I felt. The protocol was designed to make it as do-able as possible for the greatest number of people, allowing them to function. If your lack of function has too heavy a cost, you can to ratchet back just a bit. And, if you recover that quickly from a pulse, you might think about doing a three or four-day pulse every third week, instead of every fourth. Shorter, but more frequent.

Now, do I think flagyl pulses are worth it? Uh, yeah. Since it's what actually kills the cpn, yes, I think it's worth it. And, since you notice a great effect when taking it, it's obvious it's working.

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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