• 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. K

    A Very Exciting Expert ME/CFS Summit

    Thank you, @Rinareens! Seeing all these great minds in one place gives me hope. And seeing my own doctor there has me grinning ear-to-ear! :)
  2. K

    $1,000,000 donation to OMF!!!!!

    This is just how I feel @Sushi. I've been struggling lately to maintain hope based on my own health issues, but this donation combined with the success of the Unrest film has been such a boost in morale! I'm so greatful to everyone who has helped in these efforts. I know most of you are worn...
  3. K

    Hour to Hour and Day to Day Symptom Unpredictability

    @fireflymd Like you, I am perplexed by the unpredictability of this illness. My doctor asked me to get labs done over a month ago, and I've been too ill to leave the house since. This was preceded by five weeks of feeling better than I have since I became ill over three years ago. I've kept...
  4. K

    Rituximab Phase III - Negative result

    So does a negative result mean none of the patients improved? I'm so confused!
  5. K

    OMF progress

    @Gingergrrl I'm not sure! I've been to the new office a few times but I don't recognize the background. I have an appointment with Dr. K on Monday (and will be there all day for my third Rituxan infusion) so I'll be sure to ask him about this photo and report back! :)
  6. K

    OMF progress

    For those of you not on Instagram, OMF posted this picture of Linda with Dr. Kaufman today: https://instagram.com/p/BbcwlaFH2nI/
  7. K

    Mountain View Accommodations

    I think they are such a new practice that things are in flux, so if you want to know for sure it might be best to check with them. My last appointment was a Rituxan infusion in late August, and I asked if they were doing any blood draws at all now, and I was told only for patients who are...
  8. K

    Mountain View Accommodations

    If you're worried, I think you should just let them know and they'll make sure you're in and out in time. I've been to the new clinic three times now, and although they share space with a lab they are not affiliated with it. I used to get a little weary at OMI because of the long wait times...
  9. K

    Are you keeping a daily journal (sleep/pain/fatigue/etc)? If so how?

    I used to use a journal app, but the company that made it went out of business, so I copied everything into a Microsoft Word document. I started the diary in 2014, two months after I got sick. I find it invaluable for a lot of things, including tracking medications I've tried, and putting things...
  10. K

    Cholesterol levels poll: pls answer even if they're normal!

    My cholesterol has always been normal. I've been sick for three years and labs done in February of this year showed my cholesterol is now clinically high.
  11. K

    Correspondence with the Mayo Clinic re ME/CFS! (amazing response) - UPDATE

    Thank you, @Mary. I think only those of us who are ill with this disease truly understand what it took for you to put together this beautifully worded and well-researched letter. When you got a weak, seemingly thoughtless response, you soldiered on bravely. I honestly can't thank you enough...
  12. K

    Julie Rehmeyer's 'Through the Shadowlands'

    I'm about 3/4 way through it and can't put it down! It's very well-written and just riveting!
  13. K

    David Tuller needs our help

    Done!
  14. K

    Questions for anyone who has tried Rituximab/Mabthera

    I'm so sorry @Gingergrrl I've been following your progress and really hoped you'd get approved for rituxan swiftly. I have my fingers crossed you'll prevail in your appeal. I just got word last week that my insurance approved IVIG, and I've been so encouraged by your progress with it. Here's...
  15. K

    Products that make your life easier?

    I wrote earlier in this thread about getting a rolling stool to help me do tasks in the kitchen. One challenge was that counters were too high while sitting on my stool to comfortably mix the contents of a bowl, etc. I bought this adjustable height table recently and it works well in the...
  16. K

    Caffeine: helps, hurts or makes no difference?

    I make two cups in the morning out of habit and because I love the smell and taste of it, and the ritual of having hot coffee first thing. I usually end up drinking just 1-1/2 cups though. I think I've become immune to the effects of caffeine. My fatigue has intensified so much over the last...
  17. K

    Can't find comfortable mattress, in agony when I lie down

    I bought one of these about a year and a half ago on Amazon and have been very pleased. https://www.tuftandneedle.com/
  18. K

    What would you be doing if you weren't riddled with ME/CFS

    I would be traveling, attending live performances, leaving my house and walking then hopping on a bus to go into the office each day instead of working from home. Lately it's the little things I miss the most, like briskly walking a couple of blocks mid-morning to get coffee with a coworker...
  19. K

    If there were no barriers, financial or otherwise, what treatments would you try

    I have tried lots of things and Rituxan is one more thing I would like to try, but I don't count on getting the opportunity anytime soon. In my preferred scenario, I would try that, and if it didn't work I would take the approach @Dainty describes and live in a tropical paradise without a...
  20. K

    The Lost Years

    I haven't been sick nearly as long as you have, but what you say resonates with me so much. What I wake up to every day is an utter crapshoot. I've stopped wishing I'd wake up feeling better because I've been sick about three years and it just isn't happening. I get worse, not better. But I...
  21. K

    Ben and Claire's adventure to Davis-Dafoe land!

    I agree! I don't know @Rose49 or @Ben Howell or @JaimeS but they all seem like the rockstars of MECFS to me. Among other vocal advocates for us, of course. I am loving this thread so much! I want to add a reminder that if you purchase things on Amazon you can donate to Ron Davis' research by...
  22. K

    My Experience With Dr. Kaufman at the Open Medicine Institute

    I don't have the energy to type all I feel about this, so I'll just say I agree with @Gingergrrl We see the same doctor at OMI, and I don't think anyone affected by this disease could meet him and think he's motivated by profit. I do respectfully acknowledge that skepticism is a useful tool...
  23. K

    Feeling very heavy - symptom that rarely gets mentioned

    This was one of my earliest symptoms. Before I was housebound, I was still able to travel and was visiting Florida. I remember saying, "I know this sounds dumb, but is gravity stronger in some parts of the world?" (I'm not exactly what you'd call a scientific genius.) It has not gone away, and...
  24. K

    New Open Medicine Foundation Video: Ron Davis Reports on "Fast-Tracking" ME/CFS Research

    I am so deeply grateful that this brilliant man is working so hard to help us.
  25. K

    Recording Your Appointments

    In a recent popular thread, the notion of making audio recordings of medical appointments came up. I just want to say I'm a cheerleader for this approach -- I get so much more out of my appointments this way. My doc is a MECFS specialist. (I don't know if he'd describe himself this way but he...
  26. K

    The Lost Years

    Thank you so much, Jan. The second tests were better but still abnormal and I'm awaiting the results of repeat tests I had late last week. I see my doctor next week and I'm hoping he'll be able to figure this out.
  27. K

    Did anyone use CellTrend to make a treatmet decision on Rituxan & did insurance pay?

    I'm in the same boat as @Hopeful_In_San_Francisco *Waves to Hopeful!* :thumbsup: I'm also a patient of Dr. K's, sent my samples off to Berlin recently and tested positive for one. We're looking at IVIG as a next step if everything goes well (I've had some unrelated abnormal blood work lately...
  28. K

    The Lost Years

    Two years and six and a half months. The last year I've been mostly housebound. I've been getting a lot sicker in the last two months. My heart bleeds for all of us, but especially those who get this at a young age. I didn't, and I'm sincerely grateful for all the decades of healthy life...
  29. K

    How do i learn my limits

    I think I will go to my grave saying the hardest thing about this disease is explaining it to people. I'm just tapped out in this regard. I've whined recently and frequently about having to leave the house for unpleasant dental procedures, so there's that. A very dear friend came to town...
  30. K

    What do You think is your most disabling symptom?

    It depends on what day you ask me this question. I wake up every day not knowing what to expect, although I know I'll be sick. Joint and muscle pain is a given, but it's not as bad some days as others. I wake up every day feeling like I'm hungover, have the flu and worked out too hard. And I...