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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: CBS gene mutations being investigated in Ehlers-Danlos.

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › CBS gene mutations being investigated in Ehlers-Danlos. › Reply To: CBS gene mutations being investigated in Ehlers-Danlos.

December 17, 2012 at 4:42 pm #3223
Dr. Diana
Keymaster

jiiiMEnz, I’m hoping Dr. Diana will have a chance to chime in here! She has said that some with sulfa allergies tolerate it but you must discuss this with your physician and let them decide if you could do a doctor-supervised trial.

A PubMed search:

Evidently, “It’s a not so simple story”

http://www.ncbi.nlm.nih.gov/pubmed/21190500
High Alt Med Biol. 2010 Winter;11(4):319-23. doi: 10.1089/ham.2010.1051.
“Acetazolamide and sulfonamide allergy: a not so simple story.”
“We also examine the different clinical presentations of allergy and adverse reactions, from simple cutaneous reactions with no sequelae through Stevens-Johnson syndrome and anaphylaxis, with risk for significant morbidity and mortality. We offer a systematic approach to determine whether acetazolamide is a safe option for those with a history of allergy to sulfonamides.”

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1783707/
Can Fam Physician. 2006 November 10; 52(11): 1434–1438.
PMCID: PMC1783707
“Approach to managing patients with sulfa allergy.”

Great find, Sweetfeather!!! On Prettyill’s Facebook, we had a pretty LONG discussion about MTHFR. You may have seen my video — my family is not affected with any MTHFR mutations. I believe it is but one cause of blood stagnation and toxin build-up which can cause the start of some of our issues. Please remember that many people do NOT have issues with this defect, yet still suffer with POTS/hypermobility. So I think we need to cast our net a bit wider. If you are negative for MTHFR defects, PLEASE check for other causes of “blood thickening”, OK? Thanks for the great info! 😉 Diana

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