Update on Treatment

Well, I have been on AP (doxyi) 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.

Comments

Don't attach too much

Don't attach too much importance to a negative for Cpni 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 IBSi, sinusitis, alopecia">i, asthmai, peripheral neuropathy, also spokesperson for Ella started Wheldon CAPi 16th March 2006 for RRMSi<

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

 Patsy,  you have begun

 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 PPMSi  EDSSi 6.7 at beginning - now 2.  Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyli  total 35 pulses NC USA

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 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,

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 CAPi myself! Of all the many things my doc tested for, cpni was not one of them, so I will be requesting that at my next visit.  Love to all, Pat