1st April 2009
I am 2.5 years into Cpni treatment.The date I started on CAP's was 25/09/2006.
I have no major M.S. symptoms apart from being unable, as yet, to walk.
Since June 2007 I no longer suffer with my body temperature and am sensibly able to sunbathe, weather permitting!
I do not suffer from fatigue unless pushed really hard when I attend physio and all the other symptoms I should have with SPMSi are a mystery.
On reading 'Cpnhelp.org' I noticed that I could increase the number of days I take Metronidazolei.
I did take 3 x a day for 5 days Mon to Fri every other week. I now include Saturday & Sunday making it seven days on & seven days off.
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If I have the belief that I can do it, I shall surely acquire the capacity to do it, even if I may not have had it in the beginning.
Mahatma Gandhi
Jen, Nobody knows how much
Jen,
Nobody knows how much we will get til.....However, it sounds like you have had some real improvements. Do you have any control over your legs - even a small amount? Do you work on whatever movement you have? It is a long struggle to get some strength back, but every tiny bit is a piece of the big job. Pilates helped me immeasurably. I began with the easiest tape and worked for several months before I could do it. The smallest effort left me panting whan it was muscles that had not functioned for a very long time - but eventually the most relunctant began to respond.
My latest blog tells the most recent, very surprising chapter in my story. My response to your question about the flagyli is based only on my own experience: I believe in flagyl and am still wondering whether those who do only tinii will have as much recovery as I. I am back on flagyl 500mg two times EVERY DAY. I took a nine day sabbatical so we could do goat shows. Considering that I thought I was done, my reaction is surprising. So, yes, extend it if you can, but learn your capacity for suffering. You can't do it all at once.
Rica
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3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1
Rica,Thank you for your
Rica,
Thank you for your comment's - lovely to read your blog. You have spurred me on...
The Neurologist's & Physio's here only react to what's written in the text book!
They all need to meet Dr. David Wheldoni, Sarah & yourself.
Jen
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If I have the belief that I can do it, I shall surely acquire the capacity to do it, even if I may not have had it in the beginning.
Mahatma Gandhi
I get so happy when I read
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Fibro, CFSi, Myco, CPNi, Stratton protocol, Zithro 500mg M/W/F/S, Doxyi 100mg 2x day, NACi 1200mg 2x day, Flagyli and INHi 2 week pulses 400 mg 3x day, Rifampin, 300mg 2x day, Still cant shake it but improving.
It seems that you
It seems that you controlled the infection and partially regressed it, Now it's time to shut it down.
YILMAZ
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KEREM'S TAKECARER;
Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.
Lee & Yimaz,I am convinced
Lee & Yimaz,
I am convinced that we will all win the war - with the Wheldon protocol & a postive mental attitude.
Jen
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If I have the belief that I can do it, I shall surely acquire the capacity to do it, even if I may not have had it in the beginning.
Mahatma Gandhi