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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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The bit I'm worried about with the MAF 314 is the level of inflammation I have, some of what I read links high levels with poor responses, sorry to sound thick but is nagalase related to inflammation? I can get the tests over in B with KdM but the thought of travel at present is daunting, ditto to Vienna so hence the question.
is there any decent info regarding what side effects can happen and when?
Any recommended NHS blood tests that can be done to monitor the usual i.e liver, kidney electrolytes etc.
Also any info on timescales that you may start to improve (what you might see ) or when it might be likely that there will not be any improvements?
Thanks Sushi sounds like a nagalase test would be a good one to have before I think about the GcMaf or Maf 314.
Strange that KdM didn't do it in the initial range of tests?
my doctor and many others do not use these tests before they precribe gcmaf. my doctor believes the nagalase tests is not yet reliable.
We have to remember that the legalities / culture of practising medicine mean that a doctor will usually order tests and then do things based on those test results. Whether or not the test results are meaningful is irrelevant, since it gives the doctor an easy algorithm to follow, it gives them and the patient confidence that what they are doing is "scientific", and also it gives the doctor legal cover. I..e there are many reasons for doctors following a test-then-treat approach, even if the tests themselves are no good.