• Welcome to Phoenix Rising!

    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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Search results

  1. L

    Poll: Mestinon Trial

    Hi all, since the article on healthrising and the video of Dr. Systrome I consider taking Mestinon. By accident I came across some information about Mestinon that worries me. Mestinon is mentioned in connection with gulf war illness and there is a hypothesis that Mestinon (Pyridostigmine) might...
  2. L

    Bedridden Recovery

    I have an appointment 21/22 of September. But I don't know - I am only an ordinary person who thinks what ME could be - but I doubt that pathogens are responsible that this illness perpetuate. It might be a trigger as there are many many other triggers like permanent stress, operation...
  3. L

    Bedridden Recovery

    I will ask my insurance company. I don't think they cover. But they cover senseless tests in hospital for thousands of euros. I think I have to go to hospital because my sick insurance will not accept that I just lay down month by month without tests in hospital. So I fear I have to do all the...
  4. L

    Bedridden Recovery

    Waiting for the big breakthrough http://www.ncf-net.org/forum/CallForResignation.htm This sounds pretty much negative especially last note "yet he [De Meileir], feels a compulsion to lighten the wallets of patients with fairly useless drugs" I don't know the backgrounds, just quick googled...
  5. L

    Bedridden Recovery

    So sad that life's are taken by this illness. All dreams are dead. Hope you are mobile and you can be active.
  6. L

    Bedridden Recovery

    Is he ahead of his colleagues in the USA? Thought that dr Montoya, dr Peterson and so on are the ones who know best. I can already get an appointment in September... I thought I had months on end to wait...how is that ??
  7. L

    Bedridden Recovery

    Publishing seems more trustworthy. Not doing it seems suspicious.
  8. L

    Bedridden Recovery

    I often read that dr de Meileir is not publishing...why? If this is true and he is ahead of everyone else why is he not publishing? Science could build on his founding s and he still would get credit for it. I don't now why he is not doing it....
  9. L

    Bedridden Recovery

    I thought DKM thinks that the illness comes from alteration in the gut. Change of bacteria
  10. L

    Bedridden Recovery

    ...or something has to be hidden from the public. Man made illness??? I often think this is a very very very rare disease. I cannot explain this ignoration for decades otherwise!
  11. L

    Bedridden Recovery

    @Daffodil: did He find lyme in your case? You See sick since 1993. That is such a long time. Hope you are better now?! To be honest I came down with this illness 2013 and since then I do not understand why this illness is unnoticed or even neglected wordwide! There are so many rare deases eg...
  12. L

    Bedridden Recovery

    Lyme? I was beaten by a tick recently. The only time I now if was when I was 6 years old. I could still have Lyme after all these years? I did a LTT test for pneumonia two months ago. It came back negative.
  13. L

    Bedridden Recovery

    Can you tell me more about KDM. I live in Germany and Brüssel is 2 hours drive away. I thought going there with a camper. Lying down. I already contacted the clinic and they send me the paper. Because of doing the breathing tests for 4 hours sitting in the waiting room it's not doable for me...
  14. L

    Bedridden Recovery

    My father is doing everything for me. I cannot even prepare the breakfast. Washing my hair is getting really difficult. My muscles in the arms ache for days. So I only shower every 2 weeks. So is just lay in my bed and on daytime I switch to couch just to be in a different room. I only get up...
  15. L

    Bedridden Recovery

    Thank you worldbackwards. So good to read that you improved and manage a life out of bed! I think bed is for a ME Patient something that one do not like at all. The only thing I know is that this disease is unpredictable. I never thought that I could be so disabled so quickly.
  16. L

    Bedridden Recovery

    I have pretty much the same symptoms but now in a severe form. My family and GP are forcing me to go to a hospital because they think it could be something different from ME/CFS. I don't want to go because I am sure they will not find anything. 2013 with my moderate ME I was in hospital and...
  17. L

    Bedridden Recovery

    No just the typical Thinges: Poor unrefreshing sleep, Night sweats, PEM, muscles aching, brain fog, poor concentration, exhausting through speeking. Really bad orthostatic intolerance. I am so hopeless that this will improve significantly. I hate this illness. Only a psychopath could have...
  18. L

    Bedridden Recovery

    Please what do you mean by saying that...
  19. L

    Bedridden Recovery

    Since Beginning of June I am totally bedridden. 23,5/24 hours. Instead of getting better things go downhill and I don't understand why. I am so desperate and often think about all the people who are severe and can be found in the Internet. One guy sticks into my mind. Ben Di Pasquale...
  20. L

    Severe CFS Relapse After Campylobacter Infection

    @Hip: i now ordered probiotic and will try. I tried kefir but got really bad stomach ache Sadly but I got a response from De Meileir. He cannot treat a person he had never seen before. Understandable but sad.
  21. L

    Severe CFS Relapse After Campylobacter Infection

    @Pam: That Sounds good i will Google That
  22. L

    Severe CFS Relapse After Campylobacter Infection

    Thank you all for answering me. Last week I was to much in the Internet desperate to find a solution because I am doing no progress and this bedridden status prevents me from getting any treatment. Since Friday I could only stay in bed and doing nothing at all. I have to be very careful. In...
  23. L

    Severe CFS Relapse After Campylobacter Infection

    My stool sample campe back negative but the Infectionologist Said That does Not mean that there is no Campylobacter. They told me i could try Azithromycin. (Makroloid) Does anyone know if that is safer than ciprofloxacin.
  24. L

    Severe CFS Relapse After Campylobacter Infection

    @msf Intracellular does not sound good but bacteria are much bigger than viruses so even then they can go into a human cell? Well I don't know if there are other tests for campylobacter. It is possible to check if you ad antigen in your blood but mostly these are memory antigen. I did an LTT...
  25. L

    Severe CFS Relapse After Campylobacter Infection

    @Groggy Doggy @TigerLilea @msf I have read that cipro is a strong AB That goes Deep into the tissue and can affect the central nerve system. So the thing is all my stool samples except the first one come out negative. But my be they are still there and something seems to trigger every 3 weeks...
  26. L

    Severe CFS Relapse After Campylobacter Infection

    @NL93: The thing is I try to break the vicious circle and try to rest as much as possible. I go only to the toilet and back to bed or couch. But after 5 weeks everything starts to pain, my back, my shoulders, legs because I am lying down so much. So I move a little bit of get out of bed to get...
  27. L

    Severe CFS Relapse After Campylobacter Infection

    Hello, I am new here and before talking about my current situation I just want to introduce myself shortly. I am 37 years old and came down with CFS/ME in January 2013 with an acute onset of a respiratory infection. I was not completely bed bound but severely affected. Could go to doctors but...