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Multiple Chemical Sensitivity can trigger Porphyria
3 Replies
January - September 27

Thanks to Cher's postings, I became interested in reading up on porphyria which is considered a "rare" disease - perhaps because very few people know about it or understand its complicated chemistry. There are very few specialists in this disease, and even getting a proper lab test is difficult because the specimens have to be kept at the right temperature and processed correctly. The American Porphyria Foundation told me that many tests come back with false negatives.

Today I found a site you can access by putting in the w's, mcsrr.org - there is good information and many articles there that you might want to run off and take to your own doctor. At the bottom, a link is included to the American Porphyria Foundation. You can also google and read up on this disease. The Mayo Clinic now has information about it. Some of the symptoms overlap with fibromyalgia (widespread pain, nausea, IBS, exhaustion).

I wanted to post this here because I've read a lot of posts from people who have strange skin symptoms, rashes, blisters from sun exposure - that can be one form of porphyria that affects the skin. Another type, acute intermittent porphyria, can be triggered by a variety of drugs, including antibiotics and anesthetics. One symptom of that is a reddish tinge to the urine. PORPHYRIA CAN KILL YOU if not diagnosed and treated correctly. This disease is mentioned in Isabel Allende's book Paula, which is about her daughter who was misdiagnosed, went into a long coma, and died from porphyria.

Today, I read that exposure to chemical toxins can damage certain metabolic pathways in the body and bring on attacks of porphyria (there are 8 different types). There is a genetic predisposition to this disease, and you can get tested to see if you have the genes. I had never seen the connection with chemical toxins before. As our world grows more and more polluted, it stands to reason that this "rare" disease may not be so rare anymore.

 

Analucia - June 10

Hi- Thank you for your post. My understanding is that genetic porphyria can trigger MCS. I only know of one specialist on Porphyria and MCS, and through his website and books I learned that Porph. is more common than suggested. Also, it is not only linked to MCS but to CFS and Fibro. Professor Steven Rochlitz
PORPHYRIA:The Ultimate Cause of Common, Chronic, & Environmental Illnesses
His website is wellatlast

 

Analucia - June 10

wellatlast.com

 

January - July 15

Hi Analucia. I'm so glad this ancient post of mine reached someone else with an interest in porphyria. I got some helpful information several years ago from the people at the website I mentioned. It's good to hear there's more information out now, thank you for sharing it. I agree with you - I think Porphyria is vastly under-diagnosed, and may be the cause of fibro/CFS/ME symptoms in some people. The doctors I mentioned it to were clueless. Just like it took a grassroots movement to get doctors to recognize celiac and Lyme, maybe that's what is needed for porphyria.

It would be a smart move for anyone with a fibro diagnosis to read up on porphyria and see if the symptoms apply, especially if they are taking any of the drugs that can induce porphyria (and there's a lengthy list of them!) Your doctor works for you, and you can always request a test for porphyria. (Pronounced "por - fear - ya!" Ask!)

Thank you for resurrecting this information, and for adding to it. I hope this can help someone else out there! :)

 

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