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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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Search results

  1. lllamamom

    Restrictive diet/arguing with test results

    Lieselotte, since going off the ClearVite disaster, no bloating, no gas, and the increased pain level I had with it has gone back to near it’s previous levels. I’ve fired the doctor, as he continued to insist that I must not be paying attention to changes, that I wasn’t exercising enough, and I...
  2. lllamamom

    Dealing with disbelieving doctor

    At this moment, I wish I could find where these doctors eat dinner, because I would do this in a heartbeat. Just fired another doctor, who, even after I told him that gluten didn’t make a * worth of difference, and that some of his exercises were causing significant rebound pain, told me I "just...
  3. lllamamom

    Restrictive diet/arguing with test results

    That was my point, that eliminating the gluten, then adding it back, showed no difference. As to cost, though, we found that the bread, noodles, soups, etc that were truly gluten free were at least double the cost of "normal", which on our limited budget, was quite a hit. As for the accuracy of...
  4. lllamamom

    Restrictive diet/arguing with test results

    Glad to hear it helped you! We naturally eat a lot of salad, or lightly processed food. I will confess to being worn out by the current apparent popularity of restrictive diets here in the US, to the point it seems if you eat a sensible but inclusive diet, you’re considered ill before true...
  5. lllamamom

    Restrictive diet/arguing with test results

    Wheat Zoomer is the name of the particular test by Vibrant Health, here in the US. My problem with it is that, according to the literature, I should have been experiencing some gastrointestinal symptoms before. Nope. And after the months off gluten, I would have expected some noticeable...
  6. lllamamom

    Restrictive diet/arguing with test results

    Several years ago, when ME first hit, I had a "Wheat Zoomer" panel done. It showed problems with gluten, including, purportedly, antibodies. Well, I was good, eliminated wheat and gluten from everything for nearly a year. Then couldn't handle the expense or lack of taste any longer, and despite...
  7. lllamamom

    BCAAs reducing PEM

    Hi, Mary, How are you doing on the DMG? We swear by the stuff...our acupuncturist suggested it to help with oxygenation several years ago, when we were moving from sea level to 7K feet. It’s wonderful! Now, when the adult kids come to visit they start taking it about 2 weeks ahead, as they’re...
  8. lllamamom

    Dealing with disbelieving doctor

    Well, went to my GP yesterday for my annual. After I had a rather major crash in January, she asked for information and I was hopeful. Okay, so maybe I gave her to much solid information--the 2018 research from MeAssociation, plus two articles mentioned here. I thought, since she had said she...
  9. lllamamom

    ME and the MTHFR gene mutation?

    Meandering around the #MEAction Facebook page, and it seems that quite a few folks are finding that they have either a single or double mutation of the MTHFR gene. Given how many said they do, just in a brief read, has this been researched at all, as a possible diagnostic tool? I can't seem to...
  10. lllamamom

    Need travel tips for urgent trip

    We've had a death in the family, and it's going to require a 5 hour flight cross country, with one plane change each way. When I flew in January, I came home and had the worst PEM crash I'd had in years--it truly frightened my husband. This time, there will be little rest, unless I can manage...
  11. lllamamom

    NIH still needs patients

    Wish I lived closer. Don't think they'd spring for travel from Colorado, would they? Would love to participate. I fit the criteria. Heartbroken. I'm outside the upper age limit. Really wanted to participate. I hate when such studies use an arbitrary number. Until ME hit, I outworked colleagues...
  12. lllamamom

    UC Berkeley: Free screening/ discussion of Unrest February 20

    How would I go about setting up a showing of UnRest in my area? Seems like it would be of huge help. I sadly suspect I would have to do it myself, as even the doctors that admit that there is such a thing as M.E., don't really want to learn more
  13. lllamamom

    Backlash from UnRest

    I would love to start a "pen pal" club, if anyone's interested, so we have more communication, although Phoenix is wonderful! I wonder, you folks out there, how many are bedridden? Severely restricted? Can you drive occasionally? How far from town do you live? So many questions.... For me, it...
  14. lllamamom

    Supplements and Drugs That Reduce or Prevent PEM (Post-Exertional Malaise)

    When I was on 60 mg prednisone, I had significant problems with GI and "rebound"--if I took the prednisone in the morning, by evening I was collapsed in bed, with painkillers and a heating pad. I know that hydrocortisone isn't the same, however, I'm curious about how high is your "high dose". My...
  15. lllamamom

    Does Valtrex work this fast?

    After blood work showed scary high EBV titers, I went on 1,000 mg valacyclovir once a day. Within 3 days, I was much more energetic--aka one 20 minute nap a day, not 6 half hour naps, I had enough energy to actually do a load of laundry a day--load, dry, fold, haul upstairs, or walk the dog a...
  16. lllamamom

    Dealing with disbelieving doctor

    Want to cry. Gave some of the current information to my functional medicine doctor, who previously seemed receptive, as I needed to go back on valacyclovir. I don't know what happened, but got essentially a backlash from her, saying no insurance would approve the suggested year of it, it was...
  17. lllamamom

    Cfs not viral based treatment

    Wow--thank you. I'm on 1000 mg once a day. Thankfully, it seems to be helping. Question: you say, Hip, that it takes 2 years of treatment? Does that mean staying on valacyclovir the entire time? Where can I find these protocols, to present to my starting-to-accept-the-idea doctor? I take...
  18. lllamamom

    Dealing with disbelieving doctor

    Thank you, Ruthie24, I couldn't for the life of me remember the name of the gizmo. As for "that's the way we've always done it"....oh, yes. Have to report a tiny, tiny win: walked past the arthritis doctor's office (where one supercilious jerk told me "at your age you should expect a little...
  19. lllamamom

    The ME/CFS Diary, New Smart Phone App

    Oh, goodie! I just discovered this app the other day! Would love to ask the following: 1) will it work with a laptop? Indeed, a MacBook? An iPad? What version iOS is needed? 2) how detailed in entering my symptoms do I need to be? There are days when I can't think my way out of a paper bag with...
  20. lllamamom

    Dealing with disbelieving doctor

    Hang in there, folks, there's a bit of hope. I mentioned that my GP asked for information? And that I basically flooded her. Her nurse called back today, and said "Dr. said to tell you thank you. The information entirely makes sense, especially in your case" .Hello? A tiny bit of acceptance...
  21. lllamamom

    Dealing with disbelieving doctor

    That is a great article! My GP last week asked for information. I'm giving her this article, the physician's research from me association.org.uk, and one other long article. At least she asked! Fingers crossed
  22. lllamamom

    Tool for managing M.E.?

    Thanks, GG---I have that, however thought that an app might be more convenient for folks. I like how you can modify the Baseline on the app, so you can reflect gradual change.
  23. lllamamom

    Supplements and Drugs That Reduce or Prevent PEM (Post-Exertional Malaise)

    Gettinbetter, sadly, I was in too much pain for the D-ribose to apparently help. I resorted to my beloved CBD oil, and actually got 5 hours uninterrupted sleep!
  24. lllamamom

    Tool for managing M.E.?

    I've been browsing, trying to find anything easier than just my day planner for recording changes, energy expenditure, etc. Stumbled across this: http://www.mecfsdiary.com It's apparently for your phone! A friend in the UK is using it for her ME, and suggested it. I have no financial or other...
  25. lllamamom

    Dealing with disbelieving doctor

    There is--however, the meters seem only to be in hand specialist's offices, or such. Everyone else relies on the ridiculous "squeeze my finger". I agree with you, Whoops, I'm not your size, but often think about the amount of hurt I could put on a doctor if I took them literally. Indeed, one...
  26. lllamamom

    Information for doctor

    Thank you all! For another source, there's meassociation.org.uk, which is where I first found some answers. They have an ME Support side, similar to here. For a tongue in cheek bit, there's ScrewME on FB, which has frequent current articles, and responds to questions too. I find it fascinating...
  27. lllamamom

    Information for doctor

    Had to see my primary doctor today, for something unrelated to ME. Told her briefly about how I had put together all the divergent symptoms, a friend in Scotland pointed me to MEassociation.uk for information, and the light bulb came on. Amazingly, she has asked for more information! So, if...
  28. lllamamom

    Supplements and Drugs That Reduce or Prevent PEM (Post-Exertional Malaise)

    Yes it did! Thank you! Going to try it again tonight--had to go to town (50 miles each way), and several stops. The signs are that I'll need help with sleep tonight, darn it
  29. lllamamom

    BCAAs reducing PEM

    That's interesting, TreePerson! What are others experience? After a week of BCAA 3 x d, and D ribose, I couldn't tell much difference. I had read in another thread that a small dose of D ribose before bed might help with sleep--so tried that the last 3 nights. It did seem to help the first two...