My adventures in MS

Katman · Posted: Mon Jul 18, 2005 9:10 am Post subject: My adventures in MS

Hot! I think it is not just the weather though the heat index is over 100 degrees F. I was born in Indiana and grew up in west Texas but day 2 of Flagyl and I am not perspiring, I am sweating! I too have a low body temperature and have been cold all my life. Even in NC where people wear SHORTS in Oct I have on a T- shirt. a turtleneck and a sweater or swearshirt- on cold days, not today! If I am going to be in the barn- we have many animals- I also wear a down jacket and sometimes under it insulated overalls.

Heat has never bothered me until now. I have been perusing this site and it appears that heat bothers many of us.

If this (MS) is caused in my case by C.Pn. I have had it sleeping in my body for over 50 years. I have always eaten well but the episode 10 years ago (my first adventure entry) triggered this and let loose this torrent of mischief which was unchecked until my dear sister found this site. I will amend that. I have had 50 weeks of Avonex which has helped but only slowed the downward direction of progress.

I am braced for a strong reaction to Flagyl (my sixth). I now realize that the symptoms I attributed to MS - vertigo, really bad days, etc. - were probably during earlier pulses.

I also have a question. Should I add Amoxicillin to my regimen of Rifampin, Doxycycline, and Flagyl? I know this will not be medical advice, just want to compare.
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EDSS at beginning of 43 months of antibiotics 6.7 now 2 - on good days almost normal

Daunted · Posted: Mon Jul 18, 2005 10:21 am Post subject: Re: My adventures in MS

The "elementary bodies" (spores) of CPn can be disrupted by Amoxicillin. There is no clear-cut answer to your question. Early treatment protocols from Charles Stratton listed it as an important component of treatment, the latest word is that Amoxicllin "can be added".

I have found it to be easy to take. And cheap too.
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On Vanderbilt Antibiotic Protocol since January

Anecdote · Posted: Mon Jul 18, 2005 11:16 am Post subject:

Nothing really to add to Daunted's post about the amoxicillin except to say that I have never taken it and you seem to be doing so well without it that it seems a bit superfluous.

(Edit on 06-09-06: Never taken it? What a fib! I did actually take it once for two weeks, after moving onto intermittent schedule, just to see what would happen - nothing.)

What I do want to comment on, though, is your reaction to the current hot weather: I was never particularly troubled by hot weather either, although our 'hot weather' is by and large nothing like yours, mainly in the 80's, rarely over 90 degrees for more than a few days at a time. When I discovered that I should be feeling drained all summer I was quite surprised.

However, since starting the antibiotics it is a different matter, but the reason seems to be that although MS causes a lot of mitochondrial damage, as soon as you start on the antibiotics, especially whilst taking flagyl, you undergo a kind of mitochondrial spring clean as all the waste products are cleared away.

When you take your supplements you might find it beneficial to increase the amount of the following: acetyl-l carnitine, alpha lipoic acid and coenzyme Q10 during the hot weather. Do a pub-med search on all of them.

Also you really should keep out of really strong sunlight whilst taking doxycycline. Cool

The good news is that it won't be forever!

Sarah Smile

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An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.

Katman · Posted: Mon Jul 18, 2005 2:08 pm Post subject: Hot weather

Thank you both very much. The heat has been brutal to me only. My wonderful husband said of course you are hot; it's hot. This is different- definitly! Glad to know that others, or other, as the case may be, have experienced it. I will continue doing what I am doing but may add charcoal which I have not been doing. I have always taken ALA- 400 mg a day.

A matter of clarification: my sister did not discover THIS site but David Wheldon's. He will be forever on my Hero List. My father always said when he did something for someone that they must not be concerned about repaying the favor, just pass it on. I always try to do that, but this is a hard one!
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EDSS at beginning of 43 months of antibiotics 6.7 now 2 - on good days almost normal

Katman · Posted: Tue Sep 05, 2006 8:00 pm Post subject: My Adventures in MS

A long time has passed - my improvement has continued for another year. In two weeks my second anniversary on David Wheldon's magic protocol will arrive, bringing me that much closer to normalcy or my as yet unknown version of it. All of my supports are given away or looking for a good home, stopped Avonex 9 months ago, got fired by not 1 but 2 neurologists because they can't believe MS can be an infectious disease. I can easily walk/run at will for more than a mile in the middle of the day, climb up on the roof - with a ladder to be sure - repair the fence, and work all day and sleep all night. And I have earned every bit of it. We who are on abx longterm get better eventually. We may not be 100% of ourselves but that's ok because we have been to a place we would do what we needed to get out of. We are proving that this can be done if we work at it. Nobody will say it is easy, but it isn't that hard either especially compared to ......

Rica
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EDSS at beginning of 43 months of antibiotics 6.7 now 2 - on good days almost normal

Anecdote · Posted: Wed Sep 06, 2006 2:28 am Post subject:

Climb up on the roof with a ladder? Bet you wouldn't try our roof: 30ft to the guttering at the front, more at the back as the ground sinks away. Scaffolding is safer, but I have done it, although ten years ago. I do climb ladders in my studio, to hang paintings.

You are right, the regime isn't easy, but neither is it that hard, especially when you think of the possible alternatives for some, the definite alternatives for others, like both of us.

Sarah
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An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.