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Systemic Mastocytosis
mictrev Views: 10,309
Published: 11 years ago

Systemic Mastocytosis

Hi James,

My sister, age 55, has just been diagnosed with systemic mastocytosis, which is considered a very rare orphan disease. She has 10 crushed or disintegrated vertebra, the urticaria pigmentosa rash covering her body, stomach pains, and many other symptoms of this disease. She has had two kyphoplasty surgeries in the last 2 months to try to put her spine back together. Her bone marrow biopsy showed mast cells in the marrow. She aches in every bone in her body and can not lay down very long or stand up or sit any length of time. She is in severe pain most of the time.

She takes percocet for the pain. My first question is, "Can she start the DL-Phenylalanine while still taking the percocet?" I thought maybe the DLPA could help her reduce the percocet she has to take to be able to do the simplest daily living activities.

My second question is, "What herbs would you suggest to help her with this disease and the pain it brings?" She has been going to doctors for the past five years and gradually her back has been disintegrating until just recently being diagnosed with the systemic mastocytosis. I have read for weeks on the internet and do not see anything the medical world has to offer to help her. They don't have any cause or cure. They only offer treatment for the symptoms.

The Mastocytosis Society recommends quercetin and leuteolin to help stop the mast cell proliferation. I can only find the leuteolin in a formula with other herbs that costs around $40 per month. Do you know a source for leuteolin that I could get for her.

Are there herbs she should definitely stay away from that would stimulate more mast cells?

My sister is very willing to take natural supplements. All she currently takes is percocet, which I don't believe she could live without, unless we find her natural pain relief. She has been telling doctors for five years that her bones hurt on the inside but all the doctors just looked at her and shrugged. And they still do that now that she is diagnosed.

James, as always, I appreciate your help so much. You have been so kind to help so many people.

Thank you,


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