Submitted by Jim K on Fri, 2006-11-10 07:13

Hi all Cpner's-I've taken the plunge and put my story and pic on www.remedyfind.com : in for a penny, in for a pound! The profile will be used for the Remedyfind's November email newsletter for Fibromyalgia, and then also the December newsletter for Chronic Fatigue. Brett, the site owner, asked me for this quite a while back and has been following cpnhelp with interest, so it's timely now that i have some real improvement to show.I could use your help to make a good showing for the cause. If you don't know it, take a look. www.remedyfind.com is a site consisting of patient ratings for all sorts of treatments in various diseases, encompassing common meds to alternative treatments. It started with CFS and FMS, and now includes MS and many other conditions. I found it a useful reference point over the many years when I was desperate to find something helpful, and it's a great, high integrity and cleverly organized resource. Brett's done a great job, and is a CFS sufferer himself.How you could help:

  1. Register at www.remedyfind.com
  2. For your disease area, rate the antibiotics you are using in the CAP. Brett will eventually get the CAP listed under antibiotics as it's own category, in the mean time rate each one individually with the caveat of "when used in a Combined Antibiotic Protocol." See my ratings and profile (which is what will be sent out in the newsletter) at http://remedyfind.com/profile.aspx?UserID=60185  No one has rated antibiotics for most of the diseases we are treating for here at cpnhelp.
  3. Consider adding your story to your profile on the site. If you are willing, contact Brett through the contact page and offer your profile for the disease newsletter appropriate. I think it would have a major impact for some the MS stories to get out in this form, as it hits a very selected audience. I subscribe to the CFS, FMS and MS newsletters, and let me tell you, they are mostly stories of people languishing with little to show for their treatments. We have something better to offer! The same goes for other represented disorders.
  4. Sign up for newsletters that look appropriate to you. You will see mine next week. Should bring a bunch to cpnhelp for a look! 

Jim,  I did it for SPMS on Steve's behalf last night..  I labeled the treatment as "Comprehensive," but the first item I listed in the description was the Wheldon CAP.  The limited nature of their "cookie cutter" one line treatment descriptions on their lists is a little problematic.  I wish the timing had been better...I would have done per your recommendations.Joyce~caregiver and advocate in Dallas for SteveJ (SPMS):  started CAP 8/21/06

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

I could do it for Alopecia, with a before and after picture if that is possible.   I'm not going to volunteer to do one for Ella until we have something to show.Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMS Sussex, UK

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

Jim, I was persuaded by Daunted to add my profile to Remedy Find ages and ages ago, but I never did any more than that because the method of rating antibiotics and various supplements was too bitty, so I didn't do anything more. It is probably way out of date now.   Several people have written to me through Remedy Find, though.  They have all been directed here and some have actually joined. A couple have recently arranged to see David as well.........Sarah An Itinerary in Light and ShadowStarted the Wheldon regime in August 2003, for very aggressive SPMS.  Moved to intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Several weeks ago I joined Remedyfind also.  It looks as though I need to have another try at posting. Rica    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 34 pulses MS

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