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    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.

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  1. Andrew

    Article about long versions of illnesses

    The medical profession acknowledges that there is something called long COVID which is where you continue to be sick after you've been cured of COVID. As you may have noticed, the symptoms are surprisingly similar to chronic fatigue syndrome. The medical profession is also beginning to...
  2. Andrew

    At-home medical tests

    Well, yes. Sometimes I feel completely overwhelmed and I can't even think. I'm never sure what's going on. First, I have ME. I also have cancer. I'm fighting this with drugs and they have side effects. I also have lung disease and that adds another complication. And a weak immune system. Plus...
  3. Andrew

    At-home medical tests

    I have so many medical appointments I can't keep up with them. I don't have the energy to go out for a medical appointment more than once a week. And sometimes I can't go out at all. So I made a decision to do whatever I can at home. Even if it costs a lot. So for example, the last blood draw...
  4. Andrew

    Much worse following bone marrow biopsy

    This just goes up and down and up and down. Which is better than down and down. And I'm not even sure if this has to do with the biopsy. But the doctor is going to order and Xray of the location where the biopsy was done because it still hurts. I guess I'll just have to see where this goes. But...
  5. Andrew

    Much worse following bone marrow biopsy

    @Judee Thanks for the prayers. I take 2000 mg amoxicillin one hour before periodontist appts.
  6. Andrew

    Much worse following bone marrow biopsy

    Not well. Getting worse. I'm trying to do end-of-life planning just in case but it's confusing.
  7. Andrew

    Much worse following bone marrow biopsy

    Retire early, stay in bed as is practical, keep calm, hire a caregiver.
  8. Andrew

    Much worse following bone marrow biopsy

    I haven't given up, but don't a lot of people as they get older no longer have good energy, and they continuer to get weak. Because despite what my avatar looks like, I'm not a boy with a big head and a pet horse, I'm actually a 76 year old man.
  9. Andrew

    Much worse following bone marrow biopsy

    It's all very frustrating. The nausea went away and a few weeks ago I started feeling much better. Much stronger. I thought I was on a good path. And then in a single day, my body crashed. Actually in a single hour. It was the weirdest thing. I wasn't doing anything special. Just sitting on my...
  10. Andrew

    Making bed just got easier

    You can use a tucker paddle for this. Here's a link for a movie. Pay attention to the first several seconds where the woman uses a paddle to slip the sheet down and under. The movie is at the bottom of the page.
  11. Andrew

    Making bed just got easier

    I bought several tools to make it easier to tuck the bed. I got them for my part time helpers who make the bed. They like them. And I tested one myself last night.. it made tucking much easier. The tools look like paddles. I was shocked at how much easier this made.And use the front edge to...
  12. Andrew

    Comment by 'Andrew' in 'A post-covid test panel by labcorp'

    They also have a Chronic Fatigue Evaluation Profile AKA Post-COVID-19 Fatigue Evaluation. Note it says chronic fatigue, not chronic fatigue syndrome.
  13. Andrew

    Much worse following bone marrow biopsy

    I don't have an O2 problem like before. Before I was dropping down into the low eighties with my oximeter. Now I'm usually above 90. He wants to give me 02 anyway to give me an extra edge, but it's not going to fix the problem. Cutting prednisone might.
  14. Andrew

    Much worse following bone marrow biopsy

    It's all up and down. I've not posted here because it could be different in two days. For example, I got so weak I couldn't make it up all the way up the stairs to my apartment. I had to crawl the rest of the way up the stairs. But the next time I went up the stairs, I got all the way to the...
  15. Andrew

    Much worse following bone marrow biopsy

    FWIW, Ginger Snaps cookies help me, but if I keep them in the house I start snacking on them. I can't afford to gain more weight.
  16. Andrew

    Much worse following bone marrow biopsy

    @Judee Do those hurt (sting) your mouth at all?. Sometimes ginger affect me like spicy food.
  17. Andrew

    Much worse following bone marrow biopsy

    I'm just dropping a note here. Things have gone backward since i last posted. I get nauseous almost every time I eat. And sometimes when I don't eat. I don't vomit though. I'm also feeling weaker and more lightheaded than ever. This is complicated by the fact that I have other medical...
  18. Andrew

    Much worse following bone marrow biopsy

    I've had some real improvement. I think it's from the augmentin I recently finished. But I have to let more time pass to see if this is just a temporary upswing versus something real. I'm very grateful for all the help and attention you people have given me.
  19. Andrew

    Much worse following bone marrow biopsy

    Thank you for the reassurance. I tend to get down on myself at times. Your comment helped me refocus. Sounds like a great idea.
  20. Andrew

    Much worse following bone marrow biopsy

    I have an ekg done last week. It was normal. I got a blood test but I don't know the results yet. If I find out something significant I'll post it. But I'm having trouble staying on top of this. My plate if very full and troublesome. I just spent more than three weeks trying to get my cancer...
  21. Andrew

    Much worse following bone marrow biopsy

    It's in progress. Tests and medications. But I'm not doing well right now. I'll talk more later
  22. Andrew

    Much worse following bone marrow biopsy

    The medication I'm on for bronchitis is the same medication that's used for emphysema. Both fall under the category of COPD.
  23. Andrew

    Much worse following bone marrow biopsy

    I guess I'm just in for a rougher ride than before. I had major ME/.CFS crash 2 years ago from which I never recovered. I got the xray.. It says I have emphysema, I don't think I've been told this before, but it doesn't surprise me. My lungs are a mess. I also have asthma, chronic bronchitis...
  24. Andrew

    When I sit in darkness

    Thank You, dear Lord, for Your precious light. Keep my vision clear, that I may only travel on Your lighted pathway.
  25. Andrew

    When I sit in darkness

    When I sit in darkness, the Lord shall be a light unto me. Micah 7:8
  26. Andrew

    Much worse following bone marrow biopsy

    Unfortunately I don't have any recent tests.
  27. Andrew

    Much worse following bone marrow biopsy

    Good news.. The treatment seems to be helping. I don't know yet how much but at least I stopped declining. Also, I was wondering why a doctor would prescribe prednisone along with the antibiotic, considering that prednisone blunts the immune system. Here's what I found...
  28. Andrew

    Much worse following bone marrow biopsy

    @Zebra Thanks for post. I told him about the periodontist and that they polish teeth there. I explained that polishing creates an aerosol from the saliva of previous patients. So he knows. Also, I take 4 amoxicillin an hour before the cleaning to help prevent heart infection. This makes it...
  29. Andrew

    Much worse following bone marrow biopsy

    He gave me a prescription for chest xray.