• 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. sparklehoof

    Seeking Tips for Visiting Dr. Klimas’s Office Affordably

    Haha, thanks
  2. sparklehoof

    Seeking Tips for Visiting Dr. Klimas’s Office Affordably

    What is PH1413?
  3. sparklehoof

    Seeking Tips for Visiting Dr. Klimas’s Office Affordably

    Thank you, that’s great information to know. I bookmarked Dr. Black’s profile. I can’t afford to go to Hunter Hopkins, but you never know😊
  4. sparklehoof

    Seeking Tips for Visiting Dr. Klimas’s Office Affordably

    I’m not sure if this post was directed toward me, but I’ve never seen Dr. Kaufman. Hopefully someone else has visited both doctors and can tell you more.
  5. sparklehoof

    Seeking Tips for Visiting Dr. Klimas’s Office Affordably

    Thank you, I’m sorry to hear that you are so sick, but I’m thankful that you have the means to travel via a private plane and stay in a hotel. I hope that your visit was helpful and that you have access to their treatment recommendations. Thanks again.
  6. sparklehoof

    How Much Longer? ME Advances: Projected Timeline for Tx or Cure

    Hey Friends, I’m not sure if I’m posting my question in the right forum. I’ve been having more cognitive symptoms and have gotten way behind in ME news updates. I’m getting lost in the sea of acronyms for all the committees and subcommittees etc. and am looking for a very simple big picture...
  7. sparklehoof

    Too ill to have children

    I can completely relate.
  8. sparklehoof

    housing options

    I hope so too. I’ve been thinking about this for years.
  9. sparklehoof

    Seeking Tips for Visiting Dr. Klimas’s Office Affordably

    Could anyone recommend tips for visiting Dr. Klimas’s Office from out of state? Ex. Favorite: -sites to book flights, do you like one airline more than another? Do you prefer Ft. Lauderdale airport to MIA? -transport between airport, lodging and Nova SE- Uber vs car rental? -places to stay...
  10. sparklehoof

    Any Ampligen updates?

    “I just looked into this info better and finally figured out why certain doctor visits ended up as they did.“ what do you mean? I’m not sure if I understand.
  11. sparklehoof

    Any Ampligen updates?

    Thanks so much. The history is interesting (but definitely familiar:). Maybe we’ll become the next generation of Breaking Bad entrepreneurs when we use an old ice cream truck in the desert as a lab to modify/convert generic minocin into sustained release. Patients could line up in their...
  12. sparklehoof

    Any Ampligen updates?

    @prioris Thank you for your posts. I’m sorry that you have been sick for nearly your entire life. I can only imagine how much you have researched and how many treatments you have tried. I’d like to hear more about your experiences with Ampligen and Hemespherx if you don’t mind sharing. Thanks
  13. sparklehoof

    Nova Southeastern Klimas Update Letter

    Thank you for sharing your perspective. I appreciate your interpretation of my questions and if you are male, I’m thankful that you are no longer feeling overlooked. I hope that this research helps you to regain your health.
  14. sparklehoof

    Is there anyone in the PR Community Who is a Financial Advisor?

    Is there anyone in the US PR Community Who is a professional Financial Advisor who may be able to offer some of if their time to helping me with risk assessment? I have a financial advisor, but I would like to talk with someone who understands the severity and risks of moderate to severe M.E...
  15. sparklehoof

    Nova Southeastern Klimas Update Letter

    Just found it.
  16. sparklehoof

    Nova Southeastern Klimas Update Letter

    Do you know how to edit the title? I can edit the body, but I don’t see an option to edit the title.
  17. sparklehoof

    Nova Southeastern Klimas Update Letter

    INIM Highlights and Funding Opportunities 2018 has proven to be an exciting year for the INIM with real progress in our efforts to find a cure for ME/CFS and GWI. The INIM has been successful in receiving grant funding for our GWI efforts though ME/CFS support continues to be sparse. As you read...
  18. sparklehoof

    Nova Southeastern Klimas Update Letter

    .
  19. sparklehoof

    List of ME/CFS Dr’s that take Medicare

    Thanks so much. I used to see Dr. Levine too and liked her, but she said I had already done all of the treatments that she knew of and that there wasn’t anything else to try until there are more advances in research and treatment. Thanks again.
  20. sparklehoof

    List of ME/CFS Dr’s that take Medicare

    Thank you so much. I just edited my post, because I’m willing to go out of state to see a specialist. I realized that I didn’t phrase my question well. I’ll look through the link that you gave and make sure that I didn’t miss anything. Thanks again, I really appreciate your quick reply.
  21. sparklehoof

    List of ME/CFS Dr’s that take Medicare

    Hi, Does anyone know if there is an up to date list of ME/CFS doctors and ideally, details like what insurance do they accept if any and are they accepting new patients? I have Medicare. Thank you
  22. sparklehoof

    Long Term Plans- Hope for the Best, Plan for the Worst

    Thank you so much for your reply. I’m sorry it’s taken me a while to thank you. I can definitely relate to what you wrote about “those would be great problems to have.” Whenever I’m at the doctor and they ask about my asthma and why I’m not treating it, I always think, because I’m too sick to...
  23. sparklehoof

    Long Term Plans- Hope for the Best, Plan for the Worst

    Thanks for your post. I’m sorry that you can relate. I’ve tried countless treatments, too many to list. I’ve seen many doctors, including Dr. Enlander, Dr. Levine. They both said they don’t know of any treatment options. I began seeing one of Nancy Klimas’s colleagues at Nova Southeastern 10...
  24. sparklehoof

    Long Term Plans- Hope for the Best, Plan for the Worst

    “2. I really like this one myself, but it's not for everyone: If something is going to be too difficult to attain, stop needing/wanting it.” This is interesting. Are you saying that you stopped needing/wanting your yurt? It’s interesting to think about not needing/wanting relief from sickness...
  25. sparklehoof

    Karma and ME/CFS?

    Thank you. It’s amazing that you were able to find someone who could know your past and predict the future of your health to the day. I’ve never heard of ME as being is karma for a negative past life experience. I, like many of us, must have been a such a deplorable person, that we haven’t yet...
  26. sparklehoof

    Karma and ME/CFS?

    The following posts were split from the thread Long Term Plans - Hope for the Best, Plan for the Worst Thank you for sharing. I appreciate your perspective. I’m not well read in the relationship between past and present lives. Have you read that ME is a punishment given to people for...
  27. sparklehoof

    Long Term Plans- Hope for the Best, Plan for the Worst

    I agree. Unfortunately, I’ve been struggling to make a “Plan B”. It seems like some people have families or spouses with money, or had a career/connections/training/experience/resources/years paid into SS or retirement pensions to fall back on. For others, it seems like their parents are...
  28. sparklehoof

    Long Term Plans- Hope for the Best, Plan for the Worst

    I don’t think there are any treatments left for me to try. Have you found a treatment and way to support yourself?
  29. sparklehoof

    Long Term Plans- Hope for the Best, Plan for the Worst

    Hi Friends, How do you make plans to and set goals for your long term future with regard to promise that there will be a cure or treatment that isn’t currently available? My situation is that I became sick as an adolescent and my symptoms have been at a 70%-80% on the MEA Scale since they...
  30. sparklehoof

    What Psychological Topics Need to Be Researched?

    For the past week every time I walk out to my dirty car, I think of all of you. When about to start my car, I say to myself, “I’ll stop at the car wash on my way back from the pharmacy- today will be the day!” ....~30 minutes later...⏱ After picking up my rx. I’m usually hugging my...