Update on Treatment

Submitted by Patsy Rose on Wed, 2006-12-06 15:28
Well, I have been on AP (doxy) for almost a month. Have definitely been herxing, mostly in my hands, which makes sense, since that is where my disease has been the longest (Raynaud's for 25 yrs). Strange, because my hands have never been really painful, just extremely sensitive to the cold. Now I feel like I have RA in them, they start hurting during the night, waking me up, and are so bad in the mornings that I can't lift, twist or turn anything. But I think they have been better the last 3 days, so maybe I am over the hump.

 Patsy,  you have begun and have some reaction!.  To me, that is great, but what do I know?  Remamber all this.  It is good that you are doing a blog.  May you get much, much better - probably after you get worse, but .....

Rica PPMS  EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 35 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

I am ready to move forward, even if it is two steps forward, one back. I am in it for the long haul, I know.  But then I have had my disease for at least 10yrs, probably 25, so it will take time. I appreciate the support of this site, and hope someday to move up to CAP myself! Of all the many things my doc tested for, cpn was not one of them, so I will be requesting that at my next visit.  Love to all, Pat

Don't attach too much importance to a negative for Cpn test, should you get one.   It is very good at hiding where it can't be found.   The important thing is that you have a reaction to Doxi.

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBS, sinusitis, alopecia, asthma, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.