Hi Everyone,
I'm a new member and am seeking a doctor literate in CPNi or porphyriai (or ideally both) in the Portland, OR area (NW US).
I was diagnosed with Lyme disease with a CDC-criteria positive Western Blot in February of 2006 and have been doing various CAPs for the last two years and have had definite though limited improvement.
I've just recently discovered the CPN link through researching a mysterious attack of partial paralysis induced by Diflucan 7 months ago that I now know was porphyria. Some fellow Lymies clued me in to the connection between secondary porphyriai and CPN treatment and one friend found the final clinching info through this very website. Thank you, thank you! It's so good to have answers finally.
My Lyme-literate MD has no experience with CPN or porphyria, and I would be grateful for any recommendations of doctors in the Northwest US or thereabouts.
I also wondered if there are any CPN/porphyria support groups in local areas around the US. My local Lyme support group has been invaluable in getting through this chronic illness experience.
Gratefully,
Marysia
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Marysia - Hi and Welcome!
Marysia -
Hi and Welcome! Hopefully someone will send you a private message soon with a physician name in your area.
As a suggestion, since you already have a relationship with your lyme doc, you may be able to keep him as your physician and help him learn about CPNi and secondary porphyriai as a co-infection with lyme. One place to start might be by arranging for him to consult with Dr. Charles Strattoni at Vanderbilt who is one of the foremost experts in the US on CPN and secondary induced porphyria. Others here have done that with good success.
The support on this website is pretty phenomenal and the wealth of info on CPN and secondary porphyria is phenomenal.
Best of luck in your treatment!
Daisy-Caregiver- Balo's Concentric Sclerosis. CAPi 5/07. Minoi, Roxy, Diflucan 1-31, Rifampin, Bactrim DS,
Novantrone,Doxyi,Azith___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Welcome, Marysia, and add
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Hi Everyone, I am a newbie
Hi Everyone,
I am a newbie and have MSi for 10 years. I am looking for a doctor in the New York City area that can explore the ideas here with me.
Thanks
I'll send you a private
I'll send you a private message about doctors, but we don't have the names of any doctors known to us in your area. Now if you lived in California it would be another matter. I have a couple of names that belong to a list of holistic doctors that was given to me a while back that I am sending you. Now promises that they will help but some doctors off that list have helped other people in different places.
Click on the inbox heading in the blue edged box on the left...
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006
Welcome Marysia. Looking
Welcome Marysia. Looking forward to your future posts.
Louise
CFSi/ME.CPnPositive.BbPositive.
Wheldon CAPbegan6/24/07 Now on NACi,Doxyi, Roxi, TiniPulse#4 ended 2/3/08.
Cholestyramine at Bedtime, for porphoria and liposacride endotoxini die-off symptoms.
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Louise CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM