• 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 (FM), 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. B

    Trying to get in to see Dr. Klimas (INIM) - need help from her patients

    thanks SOC, i've made contact.
  2. B

    Family and Chronic Fatigue Doctors in Toronto, ON?

    no, it was not muscle testing -- check out the link to the video i provided. he did do a form of muscle testing at another point during the visit. again, it is my opinion that he is selling services that will not help PWME. i'm all for alternative treatments, but I'm writing this in order to...
  3. B

    Family and Chronic Fatigue Doctors in Toronto, ON?

    It has been several years, so details are sketchy. My recollection is that I got a bad vibe -- you know how if you've been at this a few years you can pick up that the doctor/naturopath is very sales driven? And that they will never say 'I can't help you', but instead have a multitude of...
  4. B

    Trying to get in to see Dr. Klimas (INIM) - need help from her patients

    That's pretty crazy. In any other situation I'd be looking elsewhere, but since there is no elsewhere... How were you first able to get in, did they have a wait list you put your name?
  5. B

    Trying to get in to see Dr. Klimas (INIM) - need help from her patients

    Thanks SOC. That would be great if you could talk to Dr. Rey. I will try your suggestions.
  6. B

    Trying to get in to see Dr. Klimas (INIM) - need help from her patients

    I have been calling the Institute for Neuro Immune Medicine (INIM) once a week for 7 months now. The front desk staff at the University are instructed not to put calls (from those who are not existing patients) through to anyone at the INIM. So I have been unable to speak with anyone who might...
  7. B

    Family and Chronic Fatigue Doctors in Toronto, ON?

    in my opinion Dr. Karim Dhanani is really just a charlatan for the most part. sorry to be so blunt but that is my opinion after having seen him and having heard from others who have seen him. Just my 2 cents :)
  8. B

    Ampligen In Canada?

    I was wondering if anyone has heard of any ME/CFS patients who have gotten access to Ampligen in Canada? I live in Canada, and it seems my only option is to travel to the U.S. to get it. Trying to figure out what even my first steps might be to move forward with getting access to this drug on...
  9. B

    Best Doc to see?

    Hi Justy, you mentioned that in a very high percentage he finds an alternative diagnosis - do you have a citation on this, or can you tell me how you know this. I am just in the process of trying to see him, so that is why I ask. Does anyone know if he 'treats' any person he finds to have...
  10. B

    My visits with Dr. Byron Hyde

    Hi Gamboa, I PM'd you, but I'll post here just in case: I read with great interest that you are seeing Dr. Hyde. I'm just in the process on trying to get in to see him, they have emailed me and advised of the fees etc. I was wondering how things are going with your visits? I take it that his...
  11. B

    I need your advice :)

    triffid113 - thanks for your perspective. I continue to be pretty amazed by how generous everyone here is with their time/energy/knowledge.
  12. B

    I need your advice :)

    Hi Wally, that's a good idea. I'll start another thread on CFS/ME & thyroid cancer. Can you or anyone else suggest which forum category this sort of question belongs in? Do you know what ME/CFS sub-set you fit into? I'm pretty convinced that it might help me figure out my sub-set of CFS/ME...
  13. B

    I need your advice :)

    Thanks, taniaaust1. Interesting. I am unclear on what sub-set those with ME/CFS AND thyroid cancer might fall into, but will keep looking. Are there any others on this board who have had thyroid cancer as well as ME/CFS? Or know anything about the ME/CFS sub-set that I likely fall into? Trying...
  14. B

    I need your advice :)

    taniaaust1, thanks for the info. you have really peaked my interest here, I have had thyroid cancer (total thyroidectomy done a few months after I got ME/CFS), and I have multiple chemical sensitivity. I am mainly curious about the thyroid cancer aspect of what you wrote. Any idea where you read...
  15. B

    I need your advice :)

    Thanks for the info Madietodd - I've asked others, but what is Dr. Klimas best at vs. Dr.Enlander or KDM? You mention she is not a "big gun", but I'm not too sure what you mean.
  16. B

    I need your advice :)

    Thanks Xandoff, I'll let you know about needing a bud for Belgium! I will read up on it for sure. You mentioned that Dr Dereck Enlander or KDM in Belgium would be good if one is a good candidate for GcMaf. Is there a particular type of patient that would be suited for Whittemore Peterson...
  17. B

    I need your advice :)

    Hi Sushi, thanks so much for taking the time to reply. Can you suggest how I can determine my subset - i.e is there a thread which lays out the subsets and the symptoms that define them? I've been ill for nearly 5 years. In my case I had sudden onset (flu-like symptoms), and I get very ill...
  18. B

    I need your advice :)

    taniaaust1, thanks for the info! I am going to try to get the help from others on this forum who can help with the science, I've always been a believer in deferring to subject matter experts anyway, and this site is probably one of the best resources in the world really :) do you know where I...
  19. B

    I need your advice :)

    Ocean, thanks for your reply. I'm glad to know I'm not alone with that feeling. I am lucky to have the opportunity to try something, CFS is likely one of the few illnesses where one asks themselves if there is really anything worth trying --given the risks ;worsening illness), and the crap-shoot...
  20. B

    I need your advice :)

    Thank you SickOfSickeness - i feel the same as your name suggests :) You mentioned ARV's/HIV drugs --would you include trying Ampligen?
  21. B

    I need your advice :)

    edit: doh! it's advice not advise --can't edit the title :) Hi all, this is my first time posting here. I've had CFS/ME for almost 5 years. This forum has been a great source of information, so I want to thank Cort for what he is doing. And I want to thank all the participants here --I've been...