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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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Hi all,
Its my first post, Just had my first appointment with DR. KDM in Brussels and he told me that he has found the cause of the illness and the information will be disclosed around July this year. Don't really know what to make of it, Just thought I would share.
Interesting you posted that diagram Alex.
Looking at it in relation to myself: I tested PGE2 and it was high and also I tested my Arachidonic Acid (AA) and it was very high. I saw the word Mast Cells there. I also have MCAS and have become allergic to nearly all foods so have lost 5 stone (31.75Kg) in weight.
If this is related to ME or Lyme disease or both, I have no idea.
PGE2 is a big problem for me. When I had it tested several times it was very high and when I subsequently got ulcerative colitis and started taking mesalazine my ME improved a bit with the inflammation feeling going down, but sky rockets if I forget a dose. I believe mesalazine is working to keep a lid on PGE2.
So I do believe there is something going on with PGE2 in ME that is key, at least for some people.
Indeed sCD14, shows not much for me (symptom wise)
Like I said before, there are ultimate and proximate causes, so I think patients´ reports of what KDM has said need to be taken with a pinch of salt, especially as I have noticed that he tends (as all doctors do) to simplify things for patients. I would say that he found a cause of most of the symptoms of ME back around 2011 when he reported extremely high levels of LPS in severe patients, but then, what causes the high levels of LPS? And how exactly do the high levels of LPS cause this set of symptoms? If he has made some progress in one of these areas then it will be a great advance in our understanding of ME.
I saw him in 2011....he was talking about a big revelation/announcement back then. Never came ...
A poster on here called Athene said he told her he had discovered some Scandinavian Snp that would explain why Scandinavians were so badly affected.
I remember her saying nothing came of that.
So it seems like he has a habit of touting big announcements that never materialize
According to KDM, the core of the problem in the vast majority of his patients lies in the intestines. ME/CFS is a gut disease which is initiated by a severe infection (often Lyme, but not always. Yersinia is another common one) that causes a sequential chain of events to happen in the intestines that results in a self perpetuating illness.
Hi Twazzle - I think KDM has it exactly right! Here is a link to a functional medicine doctor that outlines the same domino effect as KDM.
Although this article talks about fibromyalgia mainly, he also says cfs/me has the same microbial origins in the gut.
Edit- The link works, it's just slow.
Jim
Hi, do you have any idea how these come back in your explanation of KDM's theory?gammanorm, mesalazine, plus zeolite, lactoferrin