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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Do you remember about what the cost was and turn around time for results? Mayo won't tell me, they said they have to speak with the doctor to order it.
She was mildly positive for anti AT1R and anti ETAR. She's taking Fludrocortisone, Pyridostigmine, Propranolol, Midodrine and Potassium Chloride for her POTS. Last week, increased dosages finally got her heart rate increase down to 40 in a lean test.Thx for confirming. Did your daughter do any treatments for autoimmunity or was she positive for any autoantibodies outside of the Cell Trend Panel?
She was mildly positive for anti AT1R and anti ETAR.
She's taking Fludrocortisone, Pyridostigmine, Propranolol, Midodrine and Potassium Chloride for her POTS.
I had high a1 and m4 antibodies. I am trying Rituximab on the basis of those results. From what i understand, the trials that were done did not select ME/CFS patients so specifically for autltoimmunity. I've talked with 2 doctors who believe Rituximab dies work snd has helped certain patients who had autoimmunity. Rituximab doesn't necessarily help every patormts for the on label autoimmune problems its approved for. So, it's a matter of trying it on autoimmune patients and then a little bit of luck on top of that. I've taken other drugs that don't work on everyone either...I don't know why some autoimmune diseases fail in Rituximab trials, but it happens.
But even in these diseases, there was anecdotal reports of rituximab suc
Sorry for my ignorant response to your original question. Please tell me more about how you were treated for autoimmunity. I don't think she's been offered that option yet.it was not until I did treatments for autoimmunity that the POTS significantly improved.
isn't Dr Phair's trap theory that implies too much serotonin in the brain and not enough in the gut?I will add this to my original post but this paragraph is very interesting from Dr Grubb:
We have previously reported a comorbidity in POTS that could explain many of these clinical symptoms; platelet delta granule storage pool deficiency with diminished serotonin levels appears to be frequent in our experience.12 We have not proposed delta granule storage pool deficiency as an etiology of POTS; however, the deficiency might be acquired by autoantibodies, perhaps against enteric cells that produce serotonin in the gut that is stored in platelet granules.
Sorry for my ignorant response to your original question. Please tell me more about how you were treated for autoimmunity. I don't think she's been offered that option yet.
My personal uneducated opinion of the 'something in the blood' is an autoantibody or several stirring all this mess up. I know Dr. Davis is trying to look upstream of autoimmunity, but I think there is no doubt we have autoantibodies to all kinds of receptors, some maybe yet discovered. The evidence is too robust now approaching year 2020.
Thanks. Those are on the list. Her doc is currently building a case so the insurance will pay for the IVIGThe treatments in my case were high dose IVIG and then Rituximab (for the autoimmunity).
I found this, Patients that meet the criteria for 'JAGA' are being given IVIG at Johns Hopkins https://www.hopkinscim.org/breakthrough/holiday-2017/autoimmunity-and-the-gut/
Recently, Pasricha has described a new syndrome based on his team’s observations of a particular subgroup of patients. He’s dubbed this syndrome “JAG-A,” for the conditions it encompasses. The acronym stands for:
- Joint hypermobility or any type of connective tissue disease, such as Ehlers-Danlos syndrome
- Autonomic dysfunction such as postural orthostatic tachycardia syndrome, or POTS, which involves an abnormal heart rate increase upon standing
- Gastrointestinal dysmotility such as gastroparesis or slow-transit constipation
- Autoimmunity or predisposition to any underlying autoimmune disease
I could keep posting resources, but I'm really starting to think we all have something autoimmune going on. Maybe not every single case, but a majority.
Thanks. Those are on the list. Her doc is currently building a case so the insurance will pay for the IVIG
Thank you very much for the suggestion. She is currently seeing David Kaufman, and we feel pretty confident that he is on top of things.your doc could reach out
Thank you very much for the suggestion. She is currently seeing David Kaufman, and we feel pretty confident that he is on top of things.
I had a few 'at risks' on the test but nothing in the 'positive' range. Apparently other POTS patients are testing negative too. I wonder what's up?
I bet he is. He is my doc, too, and knows what he's doing in this area.Thank you very much for the suggestion. She is currently seeing David Kaufman, and we feel pretty confident that he is on top of things
"Researchers screened the patients' blood for autoantibodies against nine receptors. A handful of patients showed elevated levels against all nine. But it was the prevalence of adrenergic A1 subtype receptor autoantibodies that make their findings so intriguing.
"I think that we have identified a biomarker. We now might have the ability to diagnosis this, or at least have an inkling. Like other autoimmune disease, we can take a blood sample and detect if there are increased levels of autoantibodies present. According to our results, autoantibodies against this particular receptor should be present in about 90 percent of patients with POTS," said Dr. William Gunning, a professor of pathology in the UToledo College of Medicine and Life Sciences, and the paper's lead author."