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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: Dysautonomia and normal results….now what?!

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Dysautonomia and normal results….now what?! › Reply To: Dysautonomia and normal results….now what?!

June 6, 2015 at 11:03 am #5508
Dr. Diana
Keymaster

Hi lolo, I don’t think you are alone, actually. Rather than jump to mito disorders, I think someone needs to back up on your case and investigate further (I also think that the vast majority of us do not have mito disorders — biopsies are negative and no genetic inclinations show up. We also do not present like “real” mito disorders, and our symptoms can recede. This doesn’t happen to this degree in “real” mito disorders.) So, backing up, I wonder if your TTT was done correctly and if so, if the criteria for POTS may be too strict for someone who has had ablations. Of course I wonder about symptoms of high (or low) intracranial pressure, disorders of blood coagulation, and autoimmune disorders as possible problems for you. For Z/Z, I’d like to be sure that you took a double dose for at least 2 weeks? Most of us with histamine problems improve about 2 weeks into double dose treatment, BUT WE ARE NOT WELL. Histamine is likely only part of our problem. It’s great that you don’t have mastocytosis. Although some people are getting a diagnosis of MCAS – mediator negative (tests are normal), I guess you may have read how I believe this brushes off the other histamine producing cells and puts blame on mast cells — which may not be correct. I think we need to dig deeper, does that make sense? Gentle hugs…

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