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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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Best Doctors to see?

Messages
39
Hi,

I have had CFS and PEM (mostly the latter) for the last 5-6 years. It has gotten worse and worse and nowadays I cannot even do pushups without getting sick. Back in the days I used to play hockey, basketball etc. with no problems.

Anyway, I have tested a lot of stuff already. I have tested for food intolerances and vitamin/mineral deficiencies and fixed those (more than a year ago). About 6 weeks ago I started on Freddd's B12 protocol which I had tremendous hope for...and while it has cured my brain fog (which is amazing), it hasn't done anything for my PEM yet.

I also have thyroid problems and high Prolactin, which Doctors have no idea the reason for. But anyway...I am just wondering this: Who is/are the best Doctor(s) in the world to see about this?

I would like to test for heavy metals and for mold. The school I went to from 6-16 years old just recently had to be teared down because the mold infection in its walls was beyond repair.

Any suggestions? Money isn't an object and I could travel to anywhere in the world. If there is a place I could stay for a week or two and just do every test in the book by a Doctor specialized in CFS, that would be ideal. I know Dr. Daniel Peterson was supposed to be good, but is he retired? Says on Google his clinic is permanently closed.
 
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Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
At the moment the only well documentet treatment, I would say is Rituximab. You can get this either at OMI, or Kolibri Medical in Norway from Dr. Ogreid. Don`t waste money on alternative stuff, at least i would not.
 
Messages
39
Thanks. What if it's caused by something like a Herpes virus? I think it started 5-6 years ago when I had unprotected sex with Asian prostitutes. My throat swolled up for 6 months and a Chinese doctor cut out a 1x1 inch big tonsilitis from my throat with a knife.

Or of course it could be heavy metals etc.? Does Rituximab cleanse my heavy metals?
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
Well this escalated quickly :)

I don`t know man, it`s possible it could trigger ME/CFS, yes.
Rituximab kills B-cells, check out Fluge & Mellas paper by searching "b-lymphocyte depletion" in google.
 
Messages
39
Thanks. I'll read up about it.

If I see Dr. Ogreid in Norway, would he do a thorough investigation, or would he simply start with Rituximab right away? It feels a bit too early for me perhaps to go on Rituximab, as I hear it can be quite dangerous?
 
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