EDSS IMPROVEMENT from any REGIMEN?? -- FROM, TOO

Tell us what you are using to treat your MS-- and how you are doing.

Postby gwa » Tue Sep 04, 2007 6:22 am

katman,

Are you saying that you had no improvement in symptoms for 9 months after starting the abx? Perhaps the improvements were so minor that you overlooked them.

I have been taking NAC for several weeks and am going to start doxy this weekend, so am interested in reading about other people's experiences. There is a lot of info on the CPn Help pages and I have read hours of descriptions there also.

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Postby Katman » Tue Sep 04, 2007 3:02 pm

Yes, that is what I am saying. However, I began with Rifampin and Doxy and was pursuing the original Charles Stratton regimen. The abx protocol has been "tweaked" for several years now and not only does it still work with the easier-to-tolerate drugs it doesn't knock you flat the way it did me. I was severely foggy and impaired for the first nine months. Then one really wonderful day in a matter of hours, my mind cleared, the sun came up (figuatively) and I realized I was indeed much better.
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 daisy » Thu Sep 06, 2007 12:41 pm

Rica - As many times as I have read your blogs, I don't know why, but it didn't register until this post that you saw no improvements until 9 months in. You've been my hero but WOW to stick with the therapy for that long until you had improvement - girl - you have GUTS! Very INSPIRATIONAL given what my husband and I are going through!

Just out of curiosity - what were the first couple of improvements that you noticed at 9 months?

Like Sarah's post over on CPN - would you mind to list out your overall improvements since CAPPING - in one post?
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Postby Katman » Thu Sep 06, 2007 7:28 pm

Will do, Daisy - after the show this weekend! I spent the last 2 days clipping. Richard had been on flagyl and I have no excuse - we had a "time-slippage", I think! Anyway, we both thought THIS show was next week.......hurry, hurry, run, run ....(I can do that now, you know!)

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 daisy » Tue Sep 11, 2007 7:16 am

Rica - I hope you don't mind but I have posted your I Never Promised You a Rose Garden... post to this thread. It's very inspirational!

From Rica on another website.

I Never Promised You a Rose Garden....

But a Daisy will do very, very well. This is at Daisy's request and has been on my mind since she asked. I realized it will be long and will need almost daily editing as I think of more improvements, so please forgive me if I bring it up too many times. Just tell me to stop and I will. Daisy asked me to enumerate in one post the improvements since I began this incredible journey. First was return of energy, not all at once but when you are starting from near zero, ANY feels really good. Now my bladder works on demand, though it took a long time. Following this, though not necessarily in order, came months and months of a fascinating "rooting out" from my joints ALL arthritis beginning at the top of my neck, and working down, stopping along the way for lots of work (read painful work) in any joint that has EVER been over-stressed (hah!), sprained (also hah), broken, used lots, etc., etc. I wish I had kept better track but I thought I was just getting really old really fast. Besides, I had NO idea where this was going. Imagine my dumbfounded surprise a couple of months ago when I realized NOTHING hurt any more! My arthritis was gone, gone. When I waken in the morning and still nothing hurts and I can go bare-footed on ceramic tile and stand on the same tile, motionless for 20 or 30 minutes waiting to get a picture of the hummingbird outside the window and then walk I am speechless with amazement. My great-grand-mother died in a fetal position from arthritis. Someone once told me "they" had to break bones to fit her in a casket. I have no idea if this is true but I would have no trouble believing that I was headed there. My walking still comes and goes - always set back by flagyli. My vertigo comes with flagyl and last time lasted for weeks. Gone now leaving my balance better than for at least 7 years. My gums are healthier than for years and years.

<> An interesting thing that has developed in the last few days is the return of L'Hermitte's. In 1980 or so my son had just gotten his driver's license and one morning his/the car wouldn't start so I pushed it - and fell down because I was suddernly numb. Of course, it went away instantly when I changed position. In the next week this happened twice more and whatever is was in the car was repaired. I remembered this incident now with the return of L'Hermitte. Why did it take all these years to remember it? I know from my MRIs that I have a lesion right where I can feel this and I am wondering......what? I have most of the use of my right arm back after losing almost all use of it. My fine motor control and strength of my right arm and indeed of my whole body is more noticable every day. My right side is almost normal in feeling after being nearly totally numb for 9 or 10 years. My knee bends when I walk and I can come down the four steps to our garden room with a bowl of hot soup in each hand - without help.

Additions lately remembered will be listed here: I can swallow - Richard did the Heimlich on me twice the first winter. I can get up off the floor easily after not being able to without being bodily lifted. I can whirl around and bend over to pick up something from the floor and not fall over. My mind is emerging from the jumble and blur.

Richard says he is not as skeptical as he used to be - that these things are not taught is medical school. He also says that these things are not supposed to happen. I know there are many more but it is feeding time!
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Postby Katman » Tue Sep 11, 2007 7:27 am

No, Daisy, I don't mind at all, especially if it gets through the fog to the core of someone's survival instinct. The title is very real - this seems interminable, even suicidal, but as the man said when peddling Tysabri - When you get this bad, what is the death of one in a thousand?

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 Anecdote » Tue Sep 11, 2007 10:34 am

Rica, I think I am going to have to work out how best to change my signature again, having noticed yours. Some days I don't have an edss of two, so what words do I leave out?

Sarah :?
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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Postby Katman » Tue Sep 11, 2007 3:18 pm

Good question, Sarah. My score goes very close to normal on good days, but I still "walk funny" most of the time, which bothers other people a lot more than it does me. What concept do you wish to impart?

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 daisy » Wed Sep 12, 2007 1:12 pm

Sarah and Rica - What a lovely problem you have to consider!

How about:

An Itinerary in Light and Shadow

June 2007 -Valdictorian & graduate of Stratton/Wheldon 4 year protocol for aggressive SPMS. No exacerabtions since start of protcol. Major improvements & more slowly on way. EDSS was 7, now 2 or often less.

Sarah - you are made of good stuff to so reliably come here to share your story and information with others and to support so many as they try to find their way back to health down your path. I realize that CAP may not work for everyone - nothing does - but I do believe it can help a significant number. Maybe my husband will be lucky and be one of them!
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Postby Anecdote » Wed Sep 12, 2007 2:51 pm

Good one Daisy! Perhaps I'll combine yours and what I came up with over lunch, because I wanted to mention antibiotics somewhere, for people new to the board.

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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Postby Katman » Wed Sep 12, 2007 3:28 pm

Good signature, Sarah - I like what it says!

Today I noticed that my stride is lengthening when I walk and my walking is faster and more normal than I would ever have believed it would be again. And yesterday at my 3 month appointment, I bent double with my feet together and put my hands flat (but above the floor instead of on it), then whipped up straight and flailed my arms and bent again and then repeated the whole thing. My balance is pretty good for someone who couldn't even stand without an aid 3 years ago.

Rica
Last edited by Katman on Thu Sep 13, 2007 12:07 pm, edited 1 time in total.
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 daisy » Thu Sep 13, 2007 12:05 pm

Rica - I believe I could be enticed to attend one of your infamous goat shows just to see this "bent double with my feet together and put my hands flat (but above the floor instead of on it), then whipped up straight and flailed my arms and bent again and then repeated the whole thing".

I know you have champion goats but YOU RICA are a true champion!
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Postby Anecdote » Thu Sep 13, 2007 2:35 pm

Good grief - I've only just seen this: the mind boggles! Rica is undoubtably THE champion.

Sarah :wink:
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Postby Katman » Thu Sep 13, 2007 3:00 pm

Sarah,

You are probably too tall to reach the floor, or you could do this, too.

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 Anecdote » Fri Sep 14, 2007 2:22 am

Actually, I can put my hands flat on the ground if I keep my legs about twelve inches apart: I just tried it!

Sarah :D
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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