• 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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  1. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    I have no idea what that link was. :lol: All fixed, now.
  2. O

    Prayer Tree for March and April 2015

    Thank you, @Gingergrrl . How thoughtful of you. Sending out good thoughts to everyone on the prayer tree, this month. @Gingergrrl @rosie26 @Asa @CantThink @Derek Conklin @oceiv @SpecialK82
  3. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    No worries about the quote. To break up the quote, what you need to do is type [ / Quote ] without the spaces, at the point you'd like to break. For example (I'm going to type it with spaces so that you see the code): [ QUOTE = "mermaid, post: 591639, member: 510" ] Point One [ / Quote ]...
  4. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    Sorry to hear about your tough last year. :( :hug: This illness does tend to have mysterious twists and turns. Here's hoping that you and your docs find an effective treatment for your recent health woes. Or that you find a good idea here on PR and bring it to them. If I were independently...
  5. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    It truly is and emphasizes an urgent need for change on these issues. But the heartbreaking stories are each educational and need to be told. Equally important, they need to be heard and addressed by those in a position to do something to help. You bring up a really interesting point...
  6. O

    POLL: Do You Get PEM From Physical Exercise? Are You Sensitive To Lactate Probiotics Or Prebiotics?

    This was exactly the debate I was having. Because system-specific symptoms can be so integral to the disease, as it is in mine. I understand what you mean. I ended up voting no, because some products seem great for me. It might be something other than lactate in the other bad for me...
  7. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    In the meantime, (before I get back to regular replies): @MeSci Very interesting indeed (and somewhat frightening). On a quick look, I couldn't tell what the publishing org is? Do they have an impartial purpose?
  8. O

    POLL: Do You Get PEM From Physical Exercise? Are You Sensitive To Lactate Probiotics Or Prebiotics?

    @Hip What if you are sensitive to some products but not others - which answer would you choose or maybe none apply? Are you defining sensitivity as an increase in fatigue/weakness/exhaustion? Or can it also be increased symptoms in one system, like GI?
  9. O

    Matchstick Campaign for ME Awareness - Using Art to Raise Awareness of ME

    These are absolutely beautiful. Thank you for posting. Very moving when you notice the faces.
  10. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    Between the doctor situation and a couple bad illness days, I got knocked out for a bit. Let me see if I can answer @barbc56 's poll questions. Regarding who is an expert, my opinion is that those docs who treat only ME/CFS (Some treat Fibro too), have extensive knowledge about the disease (of...
  11. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    Very useful contribution for how to travel with ME/CFS. :thumbsup: I used to do some of the same things, when I was better. Looking up where the Whole Foods (expensive, but has the right foods) and local health food stores were, prior to travel helped too. I don't know if rules have changed...
  12. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    Sorry to hear that you've lost the one good specialist to retirement. :( How did Immuonovir work for you? Have you then lost the Immunovir, without him? This is the trouble with having limited docs for ME/CFS. If they move or retire, there is no one to replace them. I had a great...
  13. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    @barbc56 Quick answer. Your answer would depend on if the two doctors are giving you appropriate treatment for your ME/CFS symptoms as well as your Fibro. Are your docs managing your fatigue or other ME/CFS-specific symptoms? Are they giving you B-12 spray or shots or some other ME/CFS...
  14. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    Hi @GracieJ :) Wonderful that you were able to find and continue to have such dramatic relief and improvement. If you feel comfortable sharing which modalities helped you, it might be of help to others. I hope your health successes continue.
  15. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    Your experience with the ACE inhibitor sounds seriously frightening. Were these mistakes and dismissal of your input wrt your ME/CFS and/or other conditions? Current doctor education and training discourage knowledgeable patients participating in their treatment course. Too often, doctors...
  16. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    It's great that you have some in-person treatment and phone sessions with Dr. Lapp. Has he been able to help your illness? Understand the future financial uncertainty well. These kind of factors weigh on a patient, who should be focused only on healing. Your summary of experiences with...
  17. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    This is the thing: not getting care, treatment, diagnosis, it can make patients lose hope. I'm supportive of the fact that you are fighting this legally. I really don't think I'd be able to pull off a court battle right now. It shouldn't have to take individual legal fights to each get...
  18. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    Thank you @Gingergrrl , @WillowJ and others. I really appreciate the hugs and good wishes. I just didn't imagine the extent and continuing aspects of the situation. This situation is what initially motivated me to start this conversation and to try to do some advocating on this topic...
  19. O

    midodrine not available

    I don't know if this is the same drug, but it has midodrine HCL. It's available in a lot of countries: http://www.drugs.com/international/gutron.html You may also do a search for the brand names: Amatine, ProAmatine Also, Eon and Global are the drug companies who make the generic...
  20. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    Thank you all for your continued votes and comments. I've been having another stressful two days in my doctor access saga. It's pretty unbelievable what this previous doc did. This is why I went a little quiet. But please keep contributing.
  21. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    I've been answering posts in order, slowly, as I'm able. But need to respond to this last post. @taniaaust1 , I need to send you a lot of these: :hug: They're virtual and won't cause any pain, like real-life hugs sometimes do. While it's great that you have a doctor to send letters on your...
  22. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    It's amazing to me that any doctor will let you wait at home! When I was getting care, I sometimes had to wait over two hours. But goodness forbid that a patient is running late. Collapsing in the waiting room is frightening. :( What other strategies do patients here use to get themselves...
  23. O

    Letters to Congress: Doctor Access. Need Feedback & Help.

    Thanks, @aimossy . We're also looking into any other tools to automate congressional/governmental contact and allow for users to customize their letters. If anyone out there knows more about these automated tools, please post here or send me a PM. Once we send out the letter, people like...
  24. O

    Are you getting appropriate care from a doctor? (ME/CFS patients)

    That makes sense. The U.S. medical system is also better with acute and emergency care. Western medicine, in general, needs some major updates for this century to better deal with chronic conditions. The people I know are in a different region of Canada. The region may have more doctors...
  25. O

    Letters to Congress: Doctor Access. Need Feedback & Help.

    Good suggestion, @Oredogg . Your first point is in the research letter. We have to find out if, with the automation tool, we can customize letters and if the letters need to be sent separately or if they can be sent together if people so wish. I like your phrasing on saving medical costs...
  26. O

    Letters to Congress: Doctor Access. Need Feedback & Help.

    Thank you, @taniaaust1 . :) Of course, you may use this letter. In fact, it would make me quite happy. You could replace the ADA with an equivalent law in your country. Hopefully, once we get the automation issues answered, a whole bunch of us can send letters at once.
  27. O

    Letters to Congress: Doctor Access. Need Feedback & Help.

    Here is my rough draft of the letter to congress (with cc to health agencies). Your input, feedback and suggestions would be very helpful. Edit: I'm correcting minor errors as I catch them.
  28. O

    Letters to Congress: Doctor Access. Need Feedback & Help.

    Background: A group of us discussed what the patient community could to do advocate for governmental change for ME/CFS in the post-IOM era. We decided to create a project, which could appeal to people with a wide-range of opinions on the IOM report. We asked the question: Despite our...
  29. O

    Questions re: mold testing, labs, treatment

    Thank you for the old price on the mold testing and for distinguishing between mold allergies and mold toxicity. :) I'll look at http://www.mould-works.com/ too. I had no idea building mould was spelled with a "u." Spellcheck doesn't know either.
  30. O

    What common goals can everyone work towards, regardless of their view of the IOM report?'

    Ditto to @Nielk and thanks to you as well @Denise . I'm going to post a separate thread for our doctor access goal, as soon as I am up to it. In the meantime, see the poll and discussion on the same topic. Very insightful conversation and sadly informative poll results. I messaged @JenB, as...