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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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Search results

  1. S

    Anyone who had side effects from MRI with contrast/dye?

    I'm scheduled for an MRI with contrast/dye (Gadolinium based) and am wondering if any of you had any side effects? There is a debilitating disease called Nephrogenic Systemic Fibrosis (NSF) that happens after somebody with kidney disease has contrast. That's why I'm skeptical cuz I know CFS/ME...
  2. S

    In Belgium to see KDM

    When you'll go over to Brussels are you going to try to get reimbursed? I'm wondering to whom exactly should I go in my own country to get reimbursed? I presume I should handle these things before going to Brussels.
  3. S

    Extremely low IgA anyone?

    Thanks for the links! What is that forum that you mentioned about IgA deficiency? Yeah I think low secretory IgA could mean low blood IgA but not necessarily. If you have extremely low IgA like I do (way below the lowest normal point) then having also low blood IgA is likely at least in my...
  4. S

    In Belgium to see KDM

    Well there was lots of media attention to these new EU regulations but I don't know anyone who actually went to another country to get treatment. I don't really know how to proceed should one be referred to the doctor aborad (for example KDM) in order to be covered or how? What about the tests...
  5. S

    Extremely low IgA anyone?

    No, I only have IgA deficiency which is in my case called Selective IgA deficiency. All my other Immunoglobulins are normal including IgG subclasses. Yes, it's coming into gut from blood. Both of my gut and blood levels of IgA are zero or below detectable levels. Do you also suffer...
  6. S

    In Belgium to see KDM

    I'm wondering if anyone is getting reimbursed (paid) for the visits, tests or treatments which KDM prescribes by your own insurance now as you can visit doctor in another EU country because of new reform?
  7. S

    Extremely low IgA anyone?

    That is really interesting about the study regarding IgA and CFS/ME. Do you know more about it or do you have any links? No I wasn't tested for autoantibodies to IgA but I was told that it is highly likely that I would have adverse reaction if I would be given non-washed blood if this is what...
  8. S

    Extremely low IgA anyone?

    I was recently diagnosed with selective IgA deficiency, my IgA is zero in blood and also in my gut. This could explain why I have had tons of sore throats, diarrheas and other lining infections through my life. I suspect that this could be the cause why my gut health is so poor and maybe this...
  9. S

    In Belgium to see KDM

    Thanks guys! Is it possible to talk to him long enough to ask all the questions you want or does he really rush you out of the office and isn't talkative?
  10. S

    In Belgium to see KDM

    Is it possible to have follow up appointments via the phone or is it necessary to go there in person every time?
  11. S

    In Belgium to see KDM

    I believe that many people who are treated for Lyme disease with combos of long term antibiotics don't have active Lyme disease and this is why they don't notice any improvement. I know many people who were treated for years of abx and didn't get any better or got even worse. That's because you...
  12. S

    In Belgium to see KDM

    Did anybody get any kind of treatment for gut such as probiotics, glutamin, butyrate or something that would help with severe GI issues? It seems to me that in the past he focused a lot on the gut but now he only focuses on infections especially Lyme and Co's.
  13. S

    In Belgium to see KDM

    Yes, I have already had LTT test done by Infectolab and it was negative. I pretty much had every possible Lyme test done and everything was negative except Dark Field Microscopy revealed that there were borrelias in the blood swimming around. I would be impossible that I wasn't infected by...
  14. S

    For those who visited KDM what kind of treatment did you receive

    I have been sick for a while and have tried with numerous different treatments for ME but until now I wasn't successful yet. I'm considering visiting KDM and I'd really appreciate if you could tell me what treatments you were given by Kenny De Meirleir and how successful they were. I've been...
  15. S

    In Belgium to see KDM

    I also booked an appointment with KDM and am going to visit him. I have been severely sick for a few years and have tried so many different therapies to no avail. One of my main symptoms are gut issues. I read a lot that KDM tests for various gut imbalances and I would be eager to hear if he...
  16. S

    How much bioactive B's is it safe to take?

    Thanks for your answer! I'll try slowly adding some more methylfolate and methylcobalamin to see what happens. I know some say that you can get so called excitatory response if you've taken too much. That way you can know I guess.
  17. S

    How much bioactive B's is it safe to take?

    I'm new to this forum and I'm sure this has been talked about but it's extremely hard for me to read for long periods of time. I have been doing Dr Yasko's protocol and I'm taking bioactive B6, B9 and B12 (P5P, 5-MTHF and Methylcobalamin). I'm currently taking 60mg P5P and 1mg of 5-MTHF and...
  18. S

    23andme- shipping to Europe?

    Are you going to order it through DHL?
  19. S

    23andme- shipping to Europe?

    I know shipping was quite expensive, almost as much as the test costs but it includes shipping to you and also back to the lab. I would email them and see what they have to say.