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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. J

    How can houses of worship accommodate your needs?

    I haven't found the one I had, but when I googled "How to talk to a sick" I got a lot of hits. They may not all be good, but it would probably be possible to cobble together the best ideas into a useful handout for the ushers. :)
  2. J

    How can houses of worship accommodate your needs?

    I agree with this. Many seriously ill people cannot comfortably sit upright for long periods of time. Nevertheless, they would still like to be around people and/or attend services. A terminally ill cancer patient might love to attend services in their last few weeks, but not feel able to sit...
  3. J

    Thyroid hormons T4/T3, someone else taking it for CFS/ME?

    Both liothyronine (T3) and levothryroxine (T4).
  4. J

    Thyroid hormons T4/T3, someone else taking it for CFS/ME?

    Of course, silly me! What good are values without lab ranges? :rolleyes: TSH w/reflex to FT4: 3.15 range: 0.4 - 4.5 mIU/ml T3 free: 4.0 range: 2.3 - 4.2 pg/ml T3 total: 125 range: 76 - 181 ng/dL T3 reverse: 16...
  5. J

    Research on ME/CFS and Pregnancy?

    I suspect this would largely depend on the nature and/or symptoms of your particular flavor of ME. I have heard stories of PWME with autoimmunity feeling much better during pregnancy, although their usual ME symptoms returned shortly after the birth. I have heard of PWME with more dysautonomia...
  6. J

    High Altitude and ME

    I live at 8000+ feet and am better than I was when I lived at sea level. I wouldn't attribute that to altitude, however. What I can say is living at high altitude has not made me worse. I have traveled by car to much higher altitudes without any noticeable effects. People who live at high...
  7. J

    Worlds best or most expensive treatment for cfs?

    Here is her bio at the Institute of Neuroimmune Medicine at Nova Southeastern University. At the bottom of the page there's button to link to her publications, and another to link to her current research. There's a lot. :) She's a great clinician, too. :D
  8. J

    mild symptoms

    This is also very common in ME/CFS. It's often due to a hormone deficiency that results in your kidneys taking too much water out of your blood. Drinking more doesn't help much because your kidneys just take it all out again. Milder cases can be treated with significant, but not difficult...
  9. J

    mild symptoms

    Classic for ME/CFS, almost a defining characteristic. We hit our lactic acid threshold very quickly. If we stay at or near our lactic acid threshold very long we "crash". Look up the work by the Workwell Institute. Maybe somebody can come up with the names of some of researchers there for...
  10. J

    Holy crap, I'm so sick right now.

    He was. :D THE top guy in using AVs for ME. Had been at it for many years by the time we saw him. The first day we saw him (after all the testing was in) he said to my daughter, "You, I think we can get back to normal, or nearly so", then he turned to me and said, "You probably won't get...
  11. J

    Thyroid hormons T4/T3, someone else taking it for CFS/ME?

    Ah, my apologies for not fully understanding. I'll blame brain fog. :p Yes, the last several weeks ago. I've had them for many years. These results are after years of tweaking my thyroid meds, so these are results with meds. TSH w/reflex to FT4 -- 3.15 labeled normal T3 free --4.0 normal T3...
  12. J

    Holy crap, I'm so sick right now.

    Not sure I want to tell you this because your situation may be different from mine.... mine lasted 2-3 weeks. Horrible, I know. Feels like you'll never survive until the end, but the good news is - you do. It ends. Hopefully your AV protocol will help you avoid getting it ever again. Let...
  13. J

    Holy crap, I'm so sick right now.

    I have very low CD8+ cell number, low IgM, low NK cell function, and for the past 2-3 yrs, low IgG. Once that developed I finally got an official immune dysfunction my GP (and more importantly, my insurance company) takes seriously -- CVID.
  14. J

    Holy crap, I'm so sick right now.

    FWIW, here's a link to info on herpes esophagitis. It's more common in people who are immune compromised or who have autoimmune disease, than it is in the healthy population. There's also something called herpes labialis that refers to sores in the mouth, if you're interested in researching that.
  15. J

    Holy crap, I'm so sick right now.

    @bspg Yes, I had those symptoms many times, on and off over 8 years or so. You have my utmost sympathy! It is truly miserable. My GP dismissed my symptoms as imaginary once the strep test came back negative. All I could do was OTC analgesics, which as you probably already know, only do a...
  16. J

    Thyroid hormons T4/T3, someone else taking it for CFS/ME?

    May I ask... what symptoms are people looking at when they feel their thyroid medication protocol is not working? Or is it simply that you don't notice any change in any of your symptoms? Just curious because I go by labs, which may not work for everyone. None of the changes have led to...
  17. J

    Pesticide activated de-iodinase type 3 enzymes (DIO3) and produce reverse Triiodothyronine (rT3)

    Since when is science, or even medicine, a matter of belief? A medical condition isn't any less real because you don't "believe in it". Maybe if we don't believe in that GP he will disappear... poof... just like your mother's condition. One can hope.
  18. J

    Cost of IVIG

    I don't think I have significant autoimmunity. I used to get a lot of very detailed immune testing and no one ever suggested autoimmunity. So that could be a factor. Are you taking the CVID dose or the autoimmunity dose? As you say, maybe I'm just lucky. :D
  19. J

    Cost of IVIG

    I'm puzzled by, or perhaps a better phrase is 'curious about' the difference between my experience with IVIG and that most commonly described here. First, I only get one pre-med, Benadryl. Second, I don't get anything like the bad side effects I'm hearing about here. Most days I come home...
  20. J

    Dr Martin Lerner's abortive infection theory of ME/CFS

    Take this with a grain of salt as it was a long time ago, so I might have got it mixed up with something else in the ensuing years, or I might have not understood correctly. IIRC, Dr Lerner got miffed when people called the early rough rxns to Valcyte herxing. It is definitely not herxing...
  21. J

    Buying/organising home cooked food

    That inflexiblity is one of the very hard things about socializing with ME. I manage my daily life very carefully to do as much as I can, but not too much. I don't have the room to add in something unexpected because all my energy for the day has been budgeted to something else. OTOH, if I...
  22. J

    Buying/organising home cooked food

    Comes of being a prof. If you're any good, you learn that skill. :) I suspect that the food-bringers who don't know you well won't want to hang around long. They don't need to feel like they have to be your social circle in addition to providing food, but they might feel obliged to socialize...
  23. J

    Low dose Naltrexone

    Anything is possible, but the experience of a number of ME specialists is that it is definitely the other way around for most PWME. I, too, have wondered why generally healthy people can take much larger doses of naltrexone for substance abuse, yet PWME have to start with minute doses and work...
  24. J

    Buying/organising home cooked food

    I've been thinking about this since you posted and I remember something that worked for me for a while when I had a friend willing to trade cooking for tutoring. I had my list of very few, easy, mostly slow-cooker recipes. Just a few and ones that worked with my tastes and dietary needs. I'd...
  25. J

    Buying/organising home cooked food

    I have several one-pot meals that are easy and I can make in large batches when I'm well enough. I freeze enough for 6 or more meals in square containers that pack well in the freezer or in plastic bags that I freeze flat and stack in the freezer. Since it's the same 3-4 recipes, I know...
  26. J

    Anyone else have trouble getting blood drawn (won't flow)?

    Same for me. If I need a blood draw (and they're usually many vials) or an infusion, I super-hydrate for 24hrs. I drink a LOT of water, plus I take a 20+ minute soak in the bath as close to stick time as I can. It's made a big difference in the difficulty of the draw. They no longer have...
  27. J

    GET experiences??

    My specialist suggested very, very, very mild strength and stretching exercise when I improved to moderate. That's like 1-5 minutes of light weights a couple times a day, and stretching as I tolerate it. Gradually increasing exercise has only ever made me worse, which is consist with what we...
  28. J

    Correct way to take Florinef/fludrocortisone for POTS

    There are a number of electrolyte powders and drinks out there. This is what was recommended to me as a proper balance ElectroMix. I see now that it has no sodium and remember that I was told that large amounts of sodium are not necessary when taking fludro, but that being generous in everyday...
  29. J

    Correct way to take Florinef/fludrocortisone for POTS

    I've been on fludro for POTS for many years. It has been very effective for me. The POTS protocol I was given (and usually follow ;)) is this: Keep a bottle of electrolyte water by the bedside. As soon as you wake up, take the fludro and start drinking as much water at you can. Try to stay...
  30. J

    Poll: What can you do on a regular basis?

    I voted somewhat optimistically. I can walk up a single flight of stairs most of the time if I take it slow and only do it once a day or so. I can lift weights -- light ones for a few minutes at a time. I can work part-time, self-employed on my own schedule <10 hrs a week. Still, better than...