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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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also, if any of those tests are positive what treatment would you recommend ?These symptoms are consistent with some form of mast cell activation disorder. In my opinion, it would be appropriate to have the following tests done:
More info at ME/CFS is a mast cell disorder (hypothesis).
- 24-hour urinary 5-HIAA (to rule out carcinoid syndrome)
- 24-hour urinary N-methylhistamine (to look for mast cell issues)
- Tryptase (to potentially differentiate between mastocytosis and mast cell activation syndrome)
Good luck!
Also Nano, can a mainstream doc order them and be open to those tests?
where did you hear about those tests?
also, if any of those tests are positive what treatment would you recommend ?
what type of Doctor would be willing to test these?
Also Nano, can a mainstream doc order them and be open to those tests?
biophile: "Showering at night or before bed may also help to make it easier to ride out the effects." Why?. Its weird, i use to fell better when showers are at night, exactly when i feel with less energy.
Although it may have something to do with circadian rhythms, I was thinking more along the lines that if showering wasted us at night, it is easier to ride out the effects because bed time is soon and we will not have to suffer the effects for the rest of the day (which seems to happen to me if I shower properly in the morning).