overtheedge
Senior Member
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Welcome to Phoenix Rising!
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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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@Gingergrrl which autoantibodies have you been tested for? Also, I'm not familiar with mast cell testing, what's it like? In what sort of way did these tests help you?
in terms of antibodies, not sure how many are autoantibodies, I've had quite a number tested, I'll list em all hoping that the info will help some of you folks
@lafarfelue which tests do you recommend for dysautonomia? I've read about lyme testing but could never get a clear picture as to which test specifically was right for it
@taniaaust1 Yeah, I'm glad I did MTHFR testing, had homozygous C677T so when I tested homocysteine it was high and was able to correct that with methylation supplements, could have been bad longterm
Hair testing always comes up with extremely elevated copper, I've tried a lot of things for it, interesting note on this, when I added high levels of molybdenum to lower copper, while it didn’t lower the copper the molybdenum did significantly increase on the next test I ran so I’ve also see that hair tests are accurate, although, some of the minerals may not indicate body stores but rather some function of the body.
Back when my adrenals were real messed up, mind you this is based on symptoms and response to adrenal supplements, i didn't have any saliva cortisol tests done back then, my calcium and magnesium would always come up high while potassium and sodium came up low which indicates adrenal problems if I remember correctly, at least some part of it does, those four elements can mean a lot of things based on their status on the hair test. I've currently moved to a different house in hopes of lowering my copper levels which have been elevated for more than seven years now, elevated copper and/or elevated mercury can cause CFS symptoms from what I've read and my bathroom had bluegreen stains all over it which could indicate copper levels were high in the water, I did a number of at home water tests, some came up high, others low so I don't know for sure what the deal is there. I also had some cladosporium mold in the house I moved from, confirmed by testing, that was springing up all over my room.
I went to an allergist who did a bunch of histamine based skin prick tests, all came up negative, surprisingly the bill for that testing is pretty heavy, near a grand, would have been bad without insurance. No indication though that that kind of cladosporium wasn't giving off VOC or something else toxic.
Why is POTS test important? There are no treatments for it besides high salt diet or betablockers if I understand it correctly?
I was tested by Cell Trend (Germany) for the beta-adrenergic, anti-muscarinic/ anti-cholinergic abs (was positive for seven of the nine), and tested for different panels from Mayo Clinic (PAVAL- paraneoplastic panel, MuSK panel, GAD65, etc). Mast cell testing usually involves blood and urine testing of histamine, prostaglandins, tryptase, etc.
It used to be that you couldn't be diagnosed with ME/CFS unless everything else was excluded. That is not true now."These illnesses must be ruled out before treating CFS/ ME
what are the beta-adrenergic, anti-muscarinic/ anti-cholinergic abs for?
So the PAVAL panel is for likelihood of cancer or to detect active cancer, MuSK is for Myasthenia Gravis, and GAD65 is to detect diabetes, is that correct?
I have heard of myasthenia gravis being a cause of CFS