Cpnhelp.org

Margaret, you may be the queen of the sufferers since you have so many symptoms, but many of us have some of the symptoms you describe.   I have IBS and peripheral neuropathy, skin that is going though a lets break out in boils period at the moment, alopecia which is getting better since I started the treatment, plus numverous other symptoms that don't compare in severity to yours or others'.  

You have found a place in which you will no longer feel alone, this community has put up with many of the things you desceribe, the physical symptoms, the emotional pain, the losses and abandonments, the ignorance and downright offensive comments of doctors.   Together and with the help of generous and intelligent medical practitioners we can get better.   It is not easy but it will happen... 

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

 Margaret (my mother's name and my middle name)

We are so happy to have you and Michael here.  You probably already have a soulmate in that Michael obviously cares for you, but will find many others here.  This is an exceptional community of amazing people and you two will very likely fit right in.  

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

Well, Margaret, please read my Patient Story. I was not quite as bad off as you, but was headed there shortly. My daughter, unfortunately, fits your symptom description all too well. The hypersensitivity of skin is caused often both by porphyria (which hypersensitizes the nervous system) and the inflammatory nature of Cpn infection. You have come to the right place. 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot! about 60% recovery. Ohio,

Margaret,  Welcome home.  Many here can identify with you, and even the ones who can't identify with you absolutely know your symptoms are real and that you are suffering.  Michael, from one caregiver to another, I empathize with your hand-wringing, gut-wrenching, and general stress.  There is plenty of support here for you as well as for Margaret.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS) / Cpn indicated by reactions; Mpn, EBV, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDN.

Thank you all for your support and encouragement.

Michael: Proxy for wife Margaret. Her health started to deteriorate 40 yrs ago, FM diagnosed 20 yrs ago, Borrelliosis 3 yrs ago. Main Symptoms - extreme pain everywhere, weakness, stiffness, can't feed/dress herself. Cannot tolerate drugs esp. abx,

Welcome Margaret!

I too have had the skin sensitivity.  It manifests itself in strange ways.  Ever since I was a teenager I cannot swing on a swing because when I go forward I can't tolerate the air hitting my stomach and chest.  My children will come up and kiss me (repeatedly) and I feel so bad because it annoys me so much.  My husband will try to wake me up in the morning by rubbing my back (and how sweet is that!) and his touch irks me and drives me insane.  Sometimes when I wake up I'm so upset and off and I can't figure out why, then I'll remember the back rub.

This protocol is outstanding and you go at your own pace.  If you can't tolerate antibiotics you can go VERY slowly.  Sometimes I take 1/3 and 1/2 of a pill.  Good luck to you!

Kristin

David and Kristin, Married Forever, on CAP for FM and CFS with Dr. P. Sacramento, CA Zith, Flagyl, Valtrex, & Supps.