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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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Before starting treatment 3 years ago I didn't have gut issues at all (at least not noticeable physically). I had my appointment yesterday but he didn't say much, he will look at my whole file again and send a treatment plan. In some it fails in other it seems to work... this kind of approach.
Are you KDMs patient?My markers have been pretty consistent up until now lower when I feel better, higher when I got worse again.
I am very concerned for patients when I hear about KDM treatments, he continues to piss me off ... even as layperson It always sounded off to me, intuitively. And more I know, more off it sounds.
Everything in the field of ME treatment is so far experimenting but again there are some treatments based on at least weak evidence, and others too far from it..only based on hypotheses. like KDM's.
Also 'first, do no harm' part is missing
Only time I got throughout labs and testings was in the very beginning. The last two years nothing special except every time that ridiculous expensive MSA gut test (every 3-6 months) and every time it got more bad so this approach defiantly doesn't work for me personal. I was stupid to believe it would work and stupid to think KDM would adjust my treatment. Now he said he is going to look at my "whole file" again... But I am sure if I receive my treatment plan nothing new will be on it. I am very disappointed and feel like I was just a stupid number. Last consult when I had some questions he didnt even wanted to answer and I had to show my MSA results on my smartphone cause he didnt receive them from his administration... It is 10 past 12 for me and it looked like he didn't care at all ... 6 months of SIBO herbals did many people very bad I heard from others BTW. So it was again an incalculated risk for many patients. And if I didn't do an extra MSA test myself 7 weeks ago I would prob get another 3 months of SIBO herbals which would further destroy my tiny good gut flora.
Did he prescribed it to you?Anyone got enteric-coated Clindamycin? I have mainly Bacteroidetes overgrowth in gut ( > 50% and should be lower than 10%).
Anyone got enteric-coated Clindamycin? I have mainly Bacteroidetes overgrowth in gut ( > 50% and should be lower than 10%).