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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. Angel

    The Basic Sleep Poll

    Hi Mya: Although I have muscle spasms and twitches daily along with some nerve zingers, I believe it is not as bad as it was years ago. It used to be a major problem. When my nerves started crawling and being irritated causing loss of hours of sleep and making me feel constantly antsy, my Doc...
  2. Angel

    Kefir For ME/CFS?- Study suggests promising results

    Kefir Results I got my live Kefir from someone on this thread in July and have been drinking it almost every day since. My Mom just visited for two weeks and said I am better than she has seen me in the last 20 years, which is when I got Fibro and CFS. I have only been drinking about 2 oz a...
  3. Angel

    Possible money-makers for chronics

    work etc I moved to Florida from SD because of the pain caused by FMS. I would say that I got rid of half of my normal daily pain just from moving to a warmer climate. SD was actually a warmer climate from Minnesota where I had lived for a few decades. When your body isn't dealing with...
  4. Angel

    Possible money-makers for chronics

    ok or not hI JOdy: I've been helping a friend with his work. Due to CFS I can't start until after 1 in the afternoon, so it ends up being sometime in the evening when I'm done. I can't tell you how much it has magnified the pain. Ouch... and the sleep has really declined. I tend to wake...
  5. Angel

    Possible money-makers for chronics

    earning and selling you could try craigs list. It's free
  6. Angel

    Kefir For ME/CFS?- Study suggests promising results

    kefir grains good idea. I'll try a paper towel around the bottome half and let the sun warm up the glass.
  7. Angel

    Kefir For ME/CFS?- Study suggests promising results

    Kefir grain growth I think you just answered my question quite well. I had about 7 grains. The largest one stopped growing, but suddenly I had 14 grains. Seven of them were really small, but they double in size each day so their growth is rapid. The room temp is usually 76 degrees but...
  8. Angel

    Kefir For ME/CFS?- Study suggests promising results

    Live Kefir Grains I got my live Kefir grains from one of our members, and I have been drinking the kefir every morning since. I do think my grains grow slowly though, and I'm not sure why. I am using organic milk. Recently I needed to have 4 rounds of antibiotics over one month. Obviously...
  9. Angel

    The Basic Sleep Poll

    Hi Klutzo: Yes, I have started to read that book which was given to me by Dr Karim in Florida. Now I just need to finish reading it and follow the information. Thanks!
  10. Angel

    Possible money-makers for chronics

    Voc Rehab Hi Marian: Yes, I am very interested to hear if he has knowledge of that software. In the past I enjoyed being a Mortgage Broker because closing a loan helped my friends, but also allowed me to purchase those supplements and therapies that have been responsible for bringing me...
  11. Angel

    Possible money-makers for chronics

    Dragon Speak software If it works, let me know because I need to supplement the income too. My wrists are so sore right now from too much driving, more computer typing is not a good idea. Typing on a computer is an instant pain in the neck, shoulders, arms, etc. even to the point of...
  12. Angel

    Low dose Naltrexone

    immune response I don't know what was meant by that comment, however, my Doctor takes LDN because it keeps him from getting sick. He is exposed to many illnesses as he sees patients. The LDN increases his immune systems response, so he doesn't get everything that his patients have.
  13. Angel

    Possible money-makers for chronics

    voc rehab hi Marian: I wonder if your Voc Rehab counselor could find a software program that would allow you to talk your words and it would type on the screen, something like dragon speak. That way you wouldn't have to type it all;.
  14. Angel

    Low dose Naltrexone

    time to take LDN Hi being: My Doctor instructed me to take low dose Naltrexone one hour before bedtime. I have read on the Internet to take it at 9 P.M. The reason is that it blocks your opiods for 3 - 4 hours and during this time there is an increase in the production of endorphins in...
  15. Angel

    Low dose Naltrexone

    flare Hi GG: Well, I'm a patient for sure and not a Doctor, but I don't know why he would have had you stop the LDN because of a flare up. It was because of a major flare up that my Doctor had me go off of all pain medication for two weeks, and then go on LDN. LDN has an extremely long...
  16. Angel

    B-12 - The Hidden Story

    thinning hair Is the male pattern baldness related to a hormonal imbalance of too much testosterone, and not enough Triest and Progesterone> For thinning hair I have been told that you need to take Protease enzymes and HCL to increase your stomach acid as it is caused by protein not being...
  17. Angel

    B-12 - The Hidden Story

    inflammation For inflammation I get good results taking Serrapeptase. I prefer a Serrapeptase IV as after 4 of them I looked as if I had lost 10 pounds. All of the puffiness of my face and body just disappeared, and the blue ankles went away also. I add a daily Omega 3 to that to keep...
  18. Angel

    The Basic Sleep Poll

    Methyl B12 Thanks for the info Freddd. Personally I wouldn't be a beginner with the B's as in the last two years I've had quite a bit of it. Sometimes an oral liquid containing Methyl B12, sometimes a sublingual Methyl B12 tablet, a few cyanacobalamine injections and a few Vit B IV's that...
  19. Angel

    Kefir For ME/CFS?- Study suggests promising results

    probiotics Thank you Kolowesi for thinking of me. My refrigerator died this past weekend, and I could use a bottle of Pom Kefir. Dannybex: Does the Align have a large amount of different probiotics, or what is the special interest in that product? I seem to have missed something here.
  20. Angel

    B-12 - The Hidden Story

    nausea when I supplement with cyanacobalamine I get nauseated. I can handle it in injections. Usually I can take methyl B12 and don't get nauseated, but not always.
  21. Angel

    The Basic Sleep Poll

    when to take the B's Freddd: If you have a Vit B 12 shot in the evening, will it keep you awake, or help you sleep? Is there a methyl B12 inj? I've only been given the cyanocobalum.
  22. Angel

    The Basic Sleep Poll

    Neuropathy & methylB12 deficiency Well Freddd, you've kept me busy with research on the B deficiencies and I'm not done yet. It's all quite interesting. I was reading on www.Mcvitamins.com/neuropathy and found vital info. Just a bit of what was written. What to take to reverse nerve...
  23. Angel

    The Basic Sleep Poll

    methylb12, methylfolate, sleep, burning eyes Hi Freddd: Is that just vit B12? Right now the computer that I am on has no information on the methylb12, etc. I'll have to research it later tonight. I have had the burning eyes a lot. Not at the moment, but for months I was very aware that...
  24. Angel

    Kefir For ME/CFS?- Study suggests promising results

    Kefir story Thank you Stuart for a good read. I am looking forward to trying both dairy and water Kefir. Presently I love the Pomegranite flavored Kefir.
  25. Angel

    Kefir For ME/CFS?- Study suggests promising results

    sending a message Hi Sue B: I may have figured it out. You go up to the tool bar and click on "quick links". Then click on private messages. That should take you to a message from me. Or, look up to the right hand corner of this thread where it says Wecome Advocate and click on Private...
  26. Angel

    Kefir For ME/CFS?- Study suggests promising results

    Kefir grains Hi Sue B: I would love to have some live kefir grains. As to how to exchange the information privately, that may be a bit more difficult than actually mailing them. Some how we become friends, or send each other a private message. I know Jodi and Sushi and Cort know how...
  27. Angel

    HEADACHES - What's your treatment?

    Prolotherapy SaraM: Where do you get your platelet rich prolotherapy. Have you had both kinds of prolotherapy? How exactly does the platelet rich work?
  28. Angel

    Weird symptoms by Sandy Johnson

    sleep and drugs Victoria: As you share my grand daughters name I am fond of you already! Isn't getting sleep a trial sometimes? I agree with you that my body doesn't like synthetic drugs. My Doctor in Florida recognizes that and has put me on several compounded prescriptions that are...
  29. Angel

    Weird symptoms by Sandy Johnson

    Bounce and ithes Bounce sheets and fabric softner sheets can cause itching because they are made of sharp shreads of stuff pressed together. I actually cannot remember what the substance is that fabric sheets are made of, but it itches and can actually cause cuts in your skin on your cheeks...
  30. Angel

    Weird symptoms by Sandy Johnson

    itching Lisa: On occasion I go through the sleep time itching. That's when I go to the grocery store and buy laundry detergent and softner with no scents or fragrances or for sensitive skin. My father had this sensitivity also. Then for a couple of months I concentrate on having my...