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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. klutzo

    Pancreas, Gallbladder and CFS

    I have been too sick to come here anymore for years now and got sent something else and saw this. I cannot eat without enzymes, so it is not a choice for me. I make zero lipase. I have never had pancreatitis. I lost my pancreatic function due to Lyme and bile reflux, which started after the GB...
  2. klutzo

    BRAIN FOG: What has helped?

    Hi heapsreal, I tried two different low carb diets for two whole months. I just can't do it. I also must fight my gag reflex to eat animal flesh, and I've been that way all of my life. My parents didn't know what to do with me, since they were definitely carnivores. However, I eat...
  3. klutzo

    BRAIN FOG: What has helped?

    Hi Heapsreal, I don't know what you'll make of this, or if it helps with your question, but despite my high carb diet, I have to take 1.5 grams of L-tryptophan at bedtime and another 1.5 grams at about 3 am to prevent panic attacks in my sleep that turn into a heart rhythm problem called...
  4. klutzo

    BRAIN FOG: What has helped?

    Lotus97, I never go over the recommended dose of 4.5 grams of L-glutamine. The brand I use comes with a 4.5 mg.scoop. It may well be that you are getting more of it naturally from your high protein diet. I eat a high carb, low protein, very low fat diet, due to other physical problems I've...
  5. klutzo

    BREAKTHROUGH: New Spinal Fluid Analysis Distinguishes Lyme from CFS

    To SickofCFS, A recent study I saw somewhere I can't remember concluded that it now takes an average of 17 years for new research to sift down to the level of the practicing physician in the USA. This is one more reason to become an expert in our illnesses and to find a doctor who will...
  6. klutzo

    Rashes

    Hi sickness, The rash at the back of your head sounds like it might be psoriasis. I'd get that checked out, since there are treatments for that, and you don't want it to spread. I also have rosacea, and when it was esp. bad, my Rheumatologist thought I had lupus and ran the test...
  7. klutzo

    ME/CFS: Sleepers vs. Insomniacs, Why the differences?

    I think I am exactly the type of sleeper you are looking for. Before I was diagnosed, I once went 4 days with zero sleep. I was unable to walk unassisted, suffering from awful vertigo, consciousness and people's voices were fading in and out as if in an echo tunnel, I had horrible nausea, and...
  8. klutzo

    Muscle pains?

    I agree that stretching is a must! What helped me the most was increasing my dose of generic T3 thyroid medication (liothyronine) until my TSH was well into hyperthyroid territory, but with no symptoms of being hyper. That reduced the muscle pain by 85% at least. Creatine powder, 5 grams in...
  9. klutzo

    frequent urination leading to OI/POTS/NMH?

    Desmopressin CBS, Thanks a lot for the excellent information on DI, which I did not know before. I certainly don't have an enlarged bladder. My friends have been calling me "Peanut bladder" for decades, because I can't make it through a movie. klutzo
  10. klutzo

    frequent urination leading to OI/POTS/NMH?

    My first dx was Fibro, and I was also told I had Neurogenic bladder, ie. overly sensitive. A CAM practitioner I went to had my hair analyzed for minerals, metals, etc.. The report said I had a severe calcium/magnesium imbalance that should result in bladder constriction and reduced capacity...
  11. klutzo

    My new compression stockings-question for ya

    Compression hose I had laser surgery(EVLT) and Microphlebectomy on varicose veins on both of my legs in December, thinking it would fix my problem of feeling faint when I stand for a long time, and sore heavy legs and feet, since ultrasound showed my superficial veins were not returning any...
  12. klutzo

    Natural Ways to Boost Energy -- and Feel 10 Years Younger by Woodson C. Merrell, MD

    I would like to add that if you are overweight, you will need significantly higher doses of vitamin D than he mentions to get anywhere near optimum levels. Normal range and optimal range are two different things. The cancer preventive level is much higher than the normal range. I don't let my...
  13. klutzo

    List your 3 favorite supplements

    It is impossible to pick only 3, but I will list the 3 without which I would be dead, unable to eat, or blind by now from Lyme uveitis. 1. Doctor's Best L-tryptophan- 3,000 mgs. 2. NSI L-glutamine - 5 grams in H20 3. NSI Benfotiamine - 150 mgs. I also really need: 4. Nutricology Magnesium...
  14. klutzo

    Article: Christmas XMRV Video - Giving Hope and Thanks This XMAS

    I agree with august 59. The people in the video who are working for us, often against incredible pressure, ridicule and risk to their careers, all need to see this and know how much they are appreciated by us. How can we make this happen? klutzo
  15. klutzo

    Elisabeth Tova Bailey, author of The Sound of a Wild Snail Eating

    Thank you all so much for placing all of these quotes from the book in your posts. Please continue to do so! Since I can't get this book by inter-Library loan, I am really enjoying the quotes you post. Her writing is voluptuous, like a richly woven tapestry that you never want to stop running...
  16. klutzo

    Lost in the World? The Romberg Test Poll

    Confused about how test was administered..... This test was confusing for me, because when my Physical Therapist and later my Neurologist tested me for this, they did the test differently. They both had me close my eyes, put my arms out to the sides to help me, and then raise one foot, and...
  17. klutzo

    Lost in the World? The Romberg Test Poll

    Hi Francelle, You may have a nystagmus. The test for that is called Electronasography, or ENG, and is done by an Ear, Nose and Throat specialist. I would not recommend doing it though, since it is VERY uncomfortable. It turned out I had a "great, left, beating nystagmus", which means...
  18. klutzo

    Discussion of patient 002

    Welcome Floyd! I would like to ask you a question that we asked ourselves earlier in this discussion, ie. if you were in Tracy's situation in real life, would you have been willing to do what she did to get the drug? Or, if you were one of the other characters, would you have risked it all...
  19. klutzo

    Elisabeth Tova Bailey, author of The Sound of a Wild Snail Eating

    Hi BEG, Thanks for reminding me about "cheeseburger, cheeseburger, Pepsi, Pepsi!" I also read Gilda's book, but only once. On the subject of comedic actresses, you probably know that Madeline Kahn also died of ovarian cancer. I guessed right about your wiener dog. I have loved all my...
  20. klutzo

    Need for Quietness and Solitude - are these typical CFS/ME symptoms?

    Sunday, I am sorry you are feeling so poorly right now. (((HUGS))). I have FMS, CFS and Lyme, so I am very interested in what you posted about what Dr. Cheney said. I am also cautious, since he has seemed to change his mind a lot over the years. If you go to the new thread on the...
  21. klutzo

    Elisabeth Tova Bailey, author of The Sound of a Wild Snail Eating

    BEG, Yes, Roseanne Roseannadana was played by Gilda Radner, God rest her soul. My age is showing, but to me, the original Saturday Night Live cast was the best. Just thinking about John Belushi singing the blues dressed up as a giant bee can still make me laugh, not to mention "Samurai...
  22. klutzo

    Elisabeth Tova Bailey, author of The Sound of a Wild Snail Eating

    BEG, I am very confused....How can a snail survive indoors on a nightstand?!!! How did it get there? If she is observing mating, how did more than one snail get indoors? What could it be eating indoors? Or, is this book a fantasy book, where we must suspend disbelief for the sake of the...
  23. klutzo

    Need for Quietness and Solitude - are these typical CFS/ME symptoms?

    Hi all, Just found this thread and can really relate. I have lost friends because of the problem of being drained by talking on the phone or being in crowds, had horrible panic attacks due to loud, crowded places or heavy traffic, and so on. I spend almost all my time alone now and talk...
  24. klutzo

    Sensory Storms

    Wayne, I had these "storms" at least once every night for 6 mos. of the year, getting progressively worse with more and more symptoms, awakening me from sleep, for 12 years, starting after I developed heart valve prolapses. Besides having all of the symptoms you described, I also lost...
  25. klutzo

    Discussion of patient 002

    Thank you Ahimsa for the phrase "expressive aphasia". I can use that in the future to explain what I do in a way that will impress people, lol. Now, I usually just say I've had another "brain fart". I can't tell you how many times I've told my husband that I need to "mow the living room...
  26. klutzo

    Discussion of patient 002

    I just read today that The Immortal Life of Henrietta Lacks is an Oprah's book club pick, and that Oprah is also making it into an HBO movie. That would explain the popularity. I noticed our next book club pick by our own Athene is also on back order at Amazon. klutzo
  27. klutzo

    Discussion of patient 002

    Hi BEG, I understand. Losing my career was devastating too, but at least running the support group allowed me to use my skills as a Psychiatric Social Worker in facilitating the group meeting once a month, and helping over the phone until I was too sick to drive to my own meetings and had...
  28. klutzo

    Discussion of patient 002

    Ahimsa and BEG, This is OFF TOPIC. You are right, of course, that if my husband were the sick one I would do the same for him, or a close friend, for that matter. I just don't feel worthy of having others sacrifice for me, and have to fight those feelings all the time...
  29. klutzo

    Discussion of patient 002

    Ahimsa, Sorry to post here, but I have tried twice, once at my page and once on yours, to answer your PM, but my sent folder keeps showing zero messages sent. Just want you to know I sent you a long reply. I hope you got it, but if not, there is a thread on that issue somewhere......I think...
  30. klutzo

    Discussion of patient 002

    Ahimsa, Thank you for the info about Ampligen. No wonder so many people were excited about it. Now that we know about XMRV, I am surprised that MMS is not being brought up again as a possible treatment, since it is supposed to kill all viruses, and claimed great success with HIV, or do most...