← Return to Eosinophilic Fasciitis: Looking to connect with others

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@colleenyoung

Hi @stephg, I'm sorry to hear that. Have you heard of the Mayo Clinic Care Network? The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. The Mayo Clinic Care Network helps keep care local by providing guidance and answers to many questions that might otherwise require a referral to a specialist. See more here: https://www.mayoclinic.org/about-mayo-clinic/care-network/about

@verilee1776, were supplements the only treatment your husband had?

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Replies to "Hi @stephg, I'm sorry to hear that. Have you heard of the Mayo Clinic Care Network?..."

Supplements were not a treatment; L-tryptophan was the cause. It was poisoned due to a change in how the manufacturer made it. He had taken it to help with sleep. It was removed for a time by FDA from being sold but came back to shelves in another form.
He had a rash, extreme swelling of hands and lower legs (his hands looked like balloons), and unbearable pain throughout. He could barely walk. There was scleroderma, erythema multiforme 3 different times, and extreme bone loss. Essentially there was no real treatment for all the resulting consequences. He was given prednisone which caused its own serious consequences, including two surgeries. We were blessed that he survived with disability. We had been married less than five years at the time.
Needless to say, I do not trust any “food supplements” unless they are USP certified, nor most medications.