My lazy update for anyone whos interested

A forum for the discussion of antibiotics as a potential therapy for MS

Postby MacKintosh » Thu Dec 01, 2005 12:59 pm

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.
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
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Postby CureOrBust » Fri Dec 16, 2005 12:20 am

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. :)
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Postby MacKintosh » Fri Dec 16, 2005 1:06 am

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!
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
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Postby sojourner » Sat Dec 17, 2005 5:26 pm

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
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Postby CureOrBust » Sun Dec 18, 2005 1:18 am

MacKintosh wrote:Oh. don't leave us in suspense! Did the one-day pulse net you anything (good OR bad)?

hmmm... no noticable bad.
I have by chance felt that my feet (tingling) have maybe started to get noticably better again. The healing sorta stalled after my flu and hit of flagyl. I just looked at this 1 day pulse as a few deap CPn for free...
I must say, that I have been slowly improving week to week. And each flagyl pulse has not generated any huge noticeable healing surge. However, my reduced reaction to my last flu was a definite positive.
It would be my luck to be knocked on my behind over Christmas, so I am stoically fighting the urge ... I'll be good, but I'll live through your experiences vicariously!

HA! thats why i didnt do a full pulse even though I was due for my 6th pulse around now. I guess we are both living vicariously through my treatment...
Generally speaking, I felt very fatigued yesterday afternoon. I have also been trying "Histadine" in the last couple of days. Its suppose to be the pre-cursor to hystamine, which is the way prokarin is suppose to work. I didnt notice any change, but I did a double hit of it yesterday, and today is better. Another double hit today, and well see.
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Postby CureOrBust » Mon Jan 02, 2006 3:36 am

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.
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Postby MacKintosh » Mon Jan 02, 2006 10:08 am

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!
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
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Postby Katman » Tue Jan 03, 2006 8:38 am

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
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.
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Postby CureOrBust » Fri Jan 06, 2006 3:40 pm

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.
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Postby SarahLonglands » Fri Jan 06, 2006 4:25 pm

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:
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.
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