This Is MS Multiple Sclerosis Community: Knowledge & Support

I am so pleased to hear the progress many of you have made on the abx and other regimes that I thought I'd let you all know how I am doing.

I have been on the abx since August 2005, and took my first pulse of flagyl just after Christmas. My second pulse finished just over a week ago as I delayed it.

In between the two pulses I started to get an intermittent numbness in my leg. It lasted for more than 2 weeks, so possibly a relapse? Well the flagyl certainly saw that off! It's only been back slightly....very slightly, so I am pretty pleased.

I'm keeping the faith and fingers crossed for some research progress this year!!

J.

Hi Jaded,
Glad to hear you're not too discouraged by symptoms acting up. Earlier in the treatment, when something unusual was happening in different areas of my body, I chose to believe that it was that area of my body that the antibiotics were working on. My legs were very stiff and sore in the mornings after my first few hits of flagyl. When that stopped happening, most of the numbness in my legs had disappeared. Good luck to you.

Colin

Thank you Colin. It's encouraging to hear that you are doing so well.

Good luck to you too.

J.

Hello Jaded,

This might have been a small relapse but might easily have well been one of these:

http://www.davidwheldon.co.uk/relapse_pseudo.html

Some people have just given up because they thought they were having a relapse in the early days, therefore it wasn't working. All credit to you for being built of stronger stuff. I'm glad you met Colin, made of similar material. We shall all look forward to subsequent up-dates.

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.

If I have read you right, your "relapse" was actually reversed by a flagyl pulse. Most people talk of symptoms being triggered by a flagyl pulse.

CureO,

It certainly did - i felt it fading, buth now I come to think of it, the symptoms did start after my first flagyl pulse (for a day!).

So Sarah, you could be right about this not being a relapse, although it did last longer than 2 weeks. If it was triggerred by the flagyl, I have no idea how come the flagyl managed to stop it.

Any plausible explanations gratefully received. I am at a loss!!

J .

OVer at CPn Help.org we talk about this a lot. The simplest explanation is that flagyl causes die-off and the supplements are helping to flush the dead beasties out of the affected areas. The mass deaths cause inflammation and irritation and, until the area is flushed of the junk, recovery can't occur. Now, once the junk is starting to leave some free space behind, recovery can begin and healthy cells can occupy the space. And then the recovery itself causes new tingling of those exhausted old pathways, or maybe even causes new pathways to be generated, which means re-learning, some stop-and-start of activity and weird, new feelings.

A lot of folks are seeing the path back to health as the reverse of the downward path to sickness. Many 'old' symptoms resurface for a while as the same areas of the body or brain are 'irritated' by the healing process. You're gonna be fine! Two steps forward and one back is STILL one step forward, total. It accumulates.

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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

Hi J

Just getting my bit in here, too, and saying hello. I always regress into physical deficits and mental fog and I am finishing my 20 th round of Flagyl. I hardly pay attention to it any more, jokingly saying things to my husband things like "thanks for escorting me to the barn again" because with our dogs' enthusiastic welcome I might well end up on the ground wrestling with 300 pounds of ambulatory snowdrilt! We have Great Pyrenees. With my own experiences under my belt, I am excited about anyone who "regresses" and then ends up better, if even marginally, after only 2 pulses. Happy you are giving all this a true chance.

Rica

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2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.

Hi there Mac and Rica

Thanks for your words of encouragement. I will certainly be taking the abx for the forseeable future. What have I got to lose?

And if I make half as much progress as some people here, then I'll be a happy woman!

Hope you are both well.

J.

Hello Jaded, I was wondering how you were! It can be rather a long slog, but as Mac said somewhere a day or so ago, even if you experience periods of two steps forward and one back it is still one step forward!

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.