• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. Eucalypta

    Have here anyone seen KDM at WPI? Can you tell me about your experience?

    Valentijn. I appreciate your opinion and defending professor de Meirleir's way of working. This will be my last reply on this subject, I refuse to be pushed in the guilty by stupidity corner. You first point about them not having English as a native language is true, English isn't my native...
  2. Eucalypta

    Have here anyone seen KDM at WPI? Can you tell me about your experience?

    My phone appointment was 5am my time(PST). My brain does not function at 5am. I would not have remembered a thing he would have said nor would I have been able to ask any questions. I suggested 11:00pm, midnight or 1:00 am + 9 hours for them that would be 9 or 10 or 11 in the morning. Was not...
  3. Eucalypta

    Have here anyone seen KDM at WPI? Can you tell me about your experience?

    You probably will not believe this but more than 4 months after I have seen him I still don't know. I had a telephone follow up at 6 weeks after that they cancelled because the time difference was 'too complicated'. I'm 9 hours behind them and they set up an app. In the middle of the night...
  4. Eucalypta

    Reverse sleep cycle

    It was dr de Meirleir who told me this when I discussed it with him because I'm desperate to have a normal schedule again. He says it won't happen until we kill the pathogens. After that we can focus on restoring the melatonine that is now missing. He also mentions it in his videos although I'm...
  5. Eucalypta

    Reverse sleep cycle

    Is there anyone else who has or had a reversed sleep cycle like I do? It started with my adrenal insufficiency,, I still did produce some cortisol but at the wrong time. My cortisol levels looked like the Swiss Alps. They peeked at 12 midnight and at 12 noon. In between there was almost a flat...
  6. Eucalypta

    Have here anyone seen KDM at WPI? Can you tell me about your experience?

    Hi Alexk201, No I did not start my treatment with him yet. His protocol is that he will do an exam, look over your history, draw blood and than after 6 weeks when the results of the tests are in the will discuss them with you and suggest a treatment. A good thing to do would to request your...
  7. Eucalypta

    Have here anyone seen KDM at WPI? Can you tell me about your experience?

    Yes, we checked before we did the tests, these were not repeated. My doc is not a GP but he specializes in ME/CFS/FMS and Lyme as well and follows dr. Shoemaker's protocols closely, but we hit a wall with my treatment and he thinks highly of KDM and would love to work with him to 'solve' my...
  8. Eucalypta

    Have here anyone seen KDM at WPI? Can you tell me about your experience?

    I'm not exactly new to this. I don't agree with you. I have been diagnosed with ME since 1984. So I have seen my share of doctors and specialists in a variety of countries. Based on my recent extensive testing 32 vials, we tested almost anything available to us so that KDM would gave a good and...
  9. Eucalypta

    Have here anyone seen KDM at WPI? Can you tell me about your experience?

    Yes, that is about what I wrote. They must have decided to stick to testing of the blood in Belgium rather than use the WPI labs or make use of Quest for the common tests. I think this will be a huge issue for new patients. And it suddenly occurred to me that I have not discussed treatment cost...
  10. Eucalypta

    Have here anyone seen KDM at WPI? Can you tell me about your experience?

    Asking questions at WPI about the practice of KDM will results in no answers. They don't know. He will bring or train his own staff that is what I know because he told me so. I was hoping that he was going to use that beautiful infusion room etc for treatment but I'm not sure it that is the case...
  11. Eucalypta

    Have here anyone seen KDM at WPI? Can you tell me about your experience?

    I was the first patient that got an appointment with KDM in Reno, in the first week of November. It was strange, the WPI building was completely empty and it was just me, my husband and KDM, no nurses no one. He was there to set up his office etc but let me know he would loved to see me. I can...
  12. Eucalypta

    Dr. Derek Enlander: New trial using methylation supplements

    Dr.Enlander isn't a man of many words, if you want to know more contact him. He's always happy to answer my questions. I've been on this protocol since January. It is not a protocol that will give you results in a few weeks. I have been injecting every day and faithfully take the supplements...
  13. Eucalypta

    Info about dr Eric Gordon, Santa Rosa, CA?

    Hi, I'm looking for feedback from anyone who is seeing, ATM or in the past, dr Eric Gordon in Santa Rosa, CA. Feel free to PM me if you don't want to reply 'en public'. Thanks in advance!
  14. Eucalypta

    How Do You Handle the Summer?

    I HATE the summer with a passion. I used to be a beach girl when I was 17. Than I became ill and with that heat intolerance, photosensitivity which is different from photo phobia. In photosensitivity the immune system sees the rays as invaders and attacks them. Causing an autoimmune reaction...
  15. Eucalypta

    Seattle, WA: Harborview Chronic Fatigue Clinic

    OHSU Fibro clinic doesn't exist anymore since dr.Bennett went into retirement. It continued for a while but the spirit that carried it was gone and many things changed among them funding to keep going. Frida clinic also closed its doors.
  16. Eucalypta

    Is there an article explaining M.E. is not a Fatigue illness?

    If you want to know the exact answer why M.E is not a fatigue illness than I can point you to this paper in which is explained that ME is an illness historically listed by the WHO, the World Health Organization as a legitimate neurological illness. Quote; "M.E. is classified in the current WHO...
  17. Eucalypta

    Lymphoma as ME result.

    I don't mind sharing at all. I think he is the best and deserves a lot of credit. His name is Werner Vosloo is original from South Africa. Recently, because the clinic is doing so well, he hired another Naturopathic physician dr. Glen Jaroz. Glen has a lot of experience in sports medicine which...
  18. Eucalypta

    Lymphoma as ME result.

    Oh what a terrible scare to go through! One pf my nightmares while having a CT scan they 'discover' a whole bunch of other things wrong with me and I end up having 6 dr's. none of them familiar with ME. I'm so glad it turned out okay for you. I hope to be as lucky as well!
  19. Eucalypta

    Lymphoma as ME result.

    I was on Valtrex but had to stop due to cardiac side effects, I had a fungal pneumonia and we're waiting till I'll be back at baseline before starting new anti-virals. I inject Growth Hormone every other day to stimulate NK
  20. Eucalypta

    Maija Haavisto's new book is out!

    Maija Haavisto's new book is out! Unfortunately only in Finnish with the title; 'Hankala potilas vai hankala sairaus: tietoa huonosti tunnetuista pitkaikaissairauksista'. Anyone who has read her previous work 'Reviving The Broken Marionette' knows how important it is to have this work...
  21. Eucalypta

    Lymphoma as ME result.

    Replying to my own thread in the hope that someone picks it up. Is there really no one of the long term ME patients who had a cancer scare. Am I really the only one? I remember Dan Peterson saying that a large percentage of his patients got Lymphoma as result of high EBV figures. Cancer is...
  22. Eucalypta

    Whittemore Institute suing Mikovits for alleged theft of lab notebooks and data

    Does no one find it's interesting and very coincidental that dr. Mikovits is held without bail, can not return to her home until Nov. 22nd while she was scheduled to speak at dr. Enlander's meeting Nov.20th this Sunday. Because she can not return home she can also not participate via video or...
  23. Eucalypta

    Whittemore Institute suing Mikovits for alleged theft of lab notebooks and data

    What bothers me in this whole story is this. Which scientist, and I include here and learn from my husband, uses nowadays notebook to write down their data? A laptop yes, a paper notebook no. I just can't imagine years of work in a notebook. As the notebook was described as being placed in a...
  24. Eucalypta

    What kind of bed do you have?

    I have a hospital bed but got a different mattress. Because I spend so much time in bed, a hospital bed is ideal. It goes up and down, legs goes up and the upper torso part goes up and down. I have a bed rail on one side, which is really handy because you can pull yourself up. I have 2 beds. One...
  25. Eucalypta

    Lymphoma as ME result.

    Is there anyone who had to deal or is dealing with a Lymphoma or Leukemia cancer after having ME for years? My ME started in 1970 with a nasty case of Epstein Barr. I was pretty ill with very high fevers that just wouldn't go and was hospitalized for 4 months. At that time I lived in the...
  26. Eucalypta

    How to join and start a Rituximab trial

    That we are at high risk for cancer, especially those of us who test high for EBV and CMV who have a 1000 fold higher chance of Lymphoma and/or Leukemia, is unfortunately a fact I personally have to deal with now. A swelling appeared on side of my hipbone, thigh height. Low back, spinal cord...
  27. Eucalypta

    vaporized Cannabis

    It also depends on the kind/type of plant. There are many different kinds of Marijuana for different pains, nausea, relaxation or sleep. That's one thing they learn you when you join a local organization that will represent you and will take care of your paperwork. In Oregon we have a couple of...
  28. Eucalypta

    Scientific Antifungal Treatment: Looking for information

    Systemic Fungal infection naturo and homeo treatment This is going to be a long post, there is little information about fungal infections and ME and because I'm going through a really horrible Systemic Infection at the moment I hope that someone else can be helped with this as well. The...
  29. Eucalypta

    Please help with survey in analysis of PACE trial - urgent

    Eucalypta - Severe This week: 3, 3, 2, 3, 3, 3, 3, 2, 3, 3, 3 Bad patch: 3, 1, 1, 3, 3, 3, 3, 3, 3, 3, 3 Good patch: 2, 1, 1, 3, 3, 3, 3, 1, 3, 3, 2
  30. Eucalypta

    Are there any live-in treatment clinics for the mobile housebound?

    I don't know anything about this clinic than what I have read on the web and a friend's mother who is there at the moment and I'm waiting for her report to learn more about it. They speak about Fibromyalgia but maybe it's suitable for CFS patients as well. The clinic is in Utah, have a look...