My lazy update for anyone whos interested

MacKintosh · Posted: Thu Dec 01, 2005 1:59 pm Post subject:

Ah, Marie, I can see how someone could mis-read that, so I'm glad you clarified it! I was quoting it because it's so obvious we are ALL being helped, even though every one of us has had our 'down' moments or our own setbacks.
You are right; I am at zero on the disability scale and will never be able to quantify my progress the way most of you here can. I will rely on a clean MRI in a year and I'll do a spinal tap again and have the fluid tested properly. My progress is NO progression, which seemed to be constant in August, with a myriad of new manifestations almost daily: numb fingers/toes, tingling sensation running up and down the right leg, spongey walking on and off, huge brain fog on and off, a 'lockjaw' kind of feeling where I couldn't chew normally, feverish flushing in my face but abnormally low body temp. Much of that has gone, but my neuro would say it's a normal remission. I would disagree. It went within the first two weeks of abx, although it hadn't subsided even with intravenous steroids.
We will ALL be better for this; it just takes perseverence.
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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

CureOrBust · Posted: Fri Dec 16, 2005 1:20 am Post subject:

Over my previous 4 pulses of flagyl (total of 21 days, 63 tablets), there were 3 days where i missed a single dose of flagyl, which has left me with 3 lonely flagyl tablets (ie 1 days worth). So, I couldn't resist, but do a single day pulse. Smile

MacKintosh · Posted: Fri Dec 16, 2005 2:06 am Post subject:

Oh. don't leave us in suspense! Did the one-day pulse net you anything (good OR bad)? I'm smiling at you right now because I am not due for my second pulse until next week, but I really want to do it now. (Who knows why?) Of course, having had zero response to the first pulse, I think I am supergirl and will again have no troubles. It would be my luck to be knocked on my behind over Christmas, so I am stoically fighting the urge. I keep telling myself, David Wheldon knows better than I how to attack this, so I should follow his directions and not go getting 'creative' on my own. I'll be good, but I'll live through your experiences vicariously!
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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

sojourner · Family Member Joined: Dec 13, 2005 Posts: 65

Everyone,
Thank you for sharing all of your knowledge and experiences about antibiotics and MS---You are trailblazers, brave and just awesome.

I am new and am checking into this therapy for my husband.

MacKintosh,

I see that you are from Chicago. It so happens that we are relocating to Geneva in March. Do you have any recommendations for Neuros? Also, do you have a Dr. willing to treat you with abx?

My husband is in a very similar MS place as you. No disabilty, yet. But he (we) are strongly considering abx.

Thanks, Lexy

CureOrBust · Posted: Sun Dec 18, 2005 2:18 am Post subject:

CureOrBust · Posted: Mon Jan 02, 2006 4:36 am Post subject:

New year, and new pulse of flagyl started today.

I did a re-count, and this will be my 5th not 6th full pulse (ie not counting the one day pulse i did a few weeks ago)

I also have an appointment with my DR tomorrow to hopefully get a script for prokarin to see if it alleviates any symptoms.

MacKintosh · Posted: Mon Jan 02, 2006 11:08 am Post subject:

You're doing great! I just finished my second flagyl pulse and noticed nothing beyond 'stuffy' ears and, on the fourth/fifth days, less strength than usual. Pretty tame for me, so I'm grateful. Good luck with the doctor. Funny how we are all posting less now because we feel better and spend our time doing other things we've missed out on for awhile! Happy New Year!
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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

Katman · Posted: Tue Jan 03, 2006 9:38 am Post subject:

Hi CureOrBust

I see I am in very good company. This is my second day of my 17th pulse (if I count the 3 day pulse of two weeks ago) and the fog is descending though nothing like the first 10 or 12 which would flatten me. I am still functional enough to write this (at least I think that is me or I if you want to be stuffy about it)
Enjoy your ride, though really the best part is after and you realize the progress you have just made.

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

CureOrBust · Posted: Fri Jan 06, 2006 4:40 pm Post subject:

I finished my 5th day of flagyl yesterday.

I didnt notice any negative reactions. I have been improving each day, and that continued while on the flagyl.

I will also be starting prokarin today.

Anecdote · Posted: Fri Jan 06, 2006 5:25 pm Post subject:

Hello Cureo,

You beat me to it: I am two days short of my latest flagyl, now tinidazole pulse. Very tired but nothing else. Let us know how you get on with the relief of symptoms with the prokarin, though. It now being bedtime, I am endeavouring to post this only once! Happy New Year.

Sarah Wink

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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.