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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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(hyper)eosinophilia and Mast cell activation

Thinktank

Senior Member
Messages
1,640
Location
Europe
physicsstudent13, i have Inflammatory Bowel Disease. I appreciate your comments but i need to address the inflammation. Prednisolone is a necessary evil.
The supplements mentioned might help my liver but since i have IBD they might aggravate the inflammation.
Milk thistle gives me diahhrea, Sam-E maybe when i'm in remission, NAC maybe but it's better to support methylation to increase glutathione.

camas, thanks for your positive thoughts... i hope they will manifest. Pred is now at 15mg / day.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
Scheduled a trip back to the Netherlands next month to see dr. Meirleir in Belgium. Finally a real CFIDS specialist i can see :) Really looking forward to see him and have all the advanced testing done to rule out certain diseases.

I found a hematology division in an academic hospital in my homecountry which is specialised in mastocytosis and MCAS. I'm going to contact them to see if they have the tests available which i wanna do, if they have it all then that would be great as it will be covered by my health insurance. All other things i have done have been paid out of my own pocket, just thinking what i could have done with all of that money if i weren't so sick....
Otherwise i gotta go to see Dr. Escribano or one of his colleagues in Spain, i believe they have all the tests available there. If not it's off to the USA and do all the testing there, maybe also do a full checkup at mayo clinic or ceders-sinai.

I'm also pushing my GP to refer me to the best immunologist, gastroenterologist, hepatologist, neurologist and endocrinologist in the country. I have collected enough proof to show lots is going wrong in my body so they must take me serious this time and do some more testing. It's not just possibly MCAS, it's a whole damn warzone in my body which is now especially affecting my cognitive function. I want my damn life back!