THANK YOU so much for sharing with me. I do not get recurring pneumonia, but I do have all the sensitivities and I have not been able to tolerate so many things. I couldn't tolerate cholestyramine for mold treatment. I took minocycline for only 7 days and continued declining for 2 months after stopping it. I'm now on Buhner's herbal protocol and have to start at tiny doses and slowly work up.
After I got Buhner's book and read that foreword by Neil Nathan, lights went on and I thought that CPN might be my hiccup. I went to CPNHELP.org site, but it was kind of confusing to me. Anyway, I did find the info about the "poor man's" porphyria test, so I did that. My urine did not change color, so I kind of put it in the back of my mind after that. I do remember reading that the medical test for it is 2 parts - urine and stool. I believe the urine was for the water soluble porphyria and the stool for the fat soluble. I suppose I could still have fat soluble porphyria.
I hope to see an LLND soon. I've been in contact with her office and she agreed to help me. That's one of the first things I need to ask about.
I was working on Buhner's bartonella protocol and was having some improvements until I added Cordyceps. I don't know if I did too much too fast, or if it just triggered something, but I last took it one capsule on Thursday, and I'm still having toxin pain and heightened sensitivities.
I did have some kind of mild walking pneumonia around 1999. When I first got sick in 2009, the doctor who was trying to help me tested me for mycoplasma and I had antibodies for that back then. I assumed that was when I got mycoplasma. In 2015, I got the 2nd wave of illness after getting a contagious form of bronchitis. That illness triggered something like an autoimmune response and sent me on a nosedive into constant chronic Lyme symptoms. Between 2009 and 2015, the symptoms were just random and came and went and new ones appeared over the years. Since 2015, it's been non-stop.
Sorry for all the rambling.
All I know about treating CPN/porphyria is that strange diet. How have you treated yours? Did treatment help you any?