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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. Timaca

    Full body burning - please help

    I am so sorry that you are suffering. I used to have pretty severe full body burning, sparking, crawling nerves all over my body. I would tie a bag of frozen peas to the top of my head to help with the burning pain there. While I still have burning, sparking nerves all over my body, it isn't...
  2. Timaca

    Diet change

    Rather than removing all grains, maybe just remove wheat (if you haven't done so already). In general grains are healthy for you. And you are eating whole plant foods which is also healthy for you. If you get too restrictive in your diet you won't get the nutrients that your body needs and...
  3. Timaca

    No PEM after weeks on Valacyclovir

    I live at 7000 feet also!!! :thumbsup: And I also rest when I need it (took a nap today). Take care!! And I hope you feel better soon!
  4. Timaca

    No PEM after weeks on Valacyclovir

    I'm sorry that you are having some PEM. What you said though was very interesting to me (actually a few things you said). First you talked about being stressed and then feeling your nervous system switching when you experienced anxiety. I think I have something like that going on also.... My...
  5. Timaca

    No PEM after weeks on Valacyclovir

    Have you tried Good Rx? I use that for valacyclovir and it saves me a lot of money as my insurance won't cover it either because the prescribing doctor is not with my insurance plan.
  6. Timaca

    Nuerology Visit

    I'm sorry you are having burning nerves. I still have burning, sparking crawling nerves all over my body, but the burning part is much less. It's more crawling, sparking nerves now...and if they burn it isn't really painful. I just live with it. I guess I'm used to it now. I hope you find...
  7. Timaca

    After Months Of A Racing Heart And Burning Feet, A COVID Long-Hauler Gets A Diagnosis (NPR, May 2021)

    Hi~ I contacted Morgan Stephens through her website. https://www.morganstephens.org/contact.html I wanted to let her know about this article: https://www.healthrising.org/blog/2021/07/21/patterson-cracked-long-covid/ Maybe you can also contact her and let her know about PR! :)
  8. Timaca

    what’s the rundown on high dose thiamine?

    Interesting. Thanks for sharing! How much thiamine do you take? 100 mg?
  9. Timaca

    what’s the rundown on high dose thiamine?

    I am trying some thiamin supplementation. I started several weeks ago with 25 mg and have increased 25 mg each week until this week where I am taking 125 mg. I see no difference so far in my symptoms, except I might be sleeping better. (I am sleeping better, but whether or not it is due to...
  10. Timaca

    From very severe to moderate in two months

    Martin, I'm sorry to hear of your crash. I'm saying prayers and holding good thoughts for a quick recovery.
  11. Timaca

    Formed pillows for neck issues

    I use a travel pillow that is memory foam. I put it in a pillow case. My neck is in the area where the pillow clasps together. My ear is in the hole. It works for me as my ears were getting sore from the pressure of sleeping on a regular pillow.
  12. Timaca

    From very severe to moderate in two months

    Thanks for sharing. Please continue to share your experience. I wish you continued and fast improvement to total wellness!
  13. Timaca

    Is there a safe exercise-free weight loss diet for people with ME?

    You can check out many of the above named speakers (plus more) at this event. It is free, or you can pay for additional options. https://virtual.holisticholidayatsea.com/
  14. Timaca

    B12: a simple 5-second poll for everyone

    I've taken a small amount of B12 (13 mcg) for years because I eat whole food plant based. My serum B12 levels have always been normal. I recently had the MTHFR test (or something like that....I probably got the letters out of order)....anyway, as a result of that my doctor wanted me to try...
  15. Timaca

    Is there a safe exercise-free weight loss diet for people with ME?

    Brenda Davis does an excellent job discussing Paleo and Keto diets on this video. People who live the longest, healthiest lives eat the majority of their calories from whole plant foods. (See Blue Zones). Unrefined carbohydrates are good for you (whole plant foods) refined carbohydrates...
  16. Timaca

    Is there a safe exercise-free weight loss diet for people with ME?

    I suggest a whole food, plant based diet. It will help you lose weight, and help you get rid of your diabetes (if you have type 2 diabetes). Check this out for more info: https://www.forksoverknives.com/ Here are some success stories...
  17. Timaca

    POTS

    There is a Supraventricular Tachycardia FaceBook group that you might find helpful. The Dysautonmia group mentioned above also has a FaceBook group (Dysautonomia International) that is by state (if you live in the USA), so that is a nice way to learn about doctors and other support people...
  18. Timaca

    Looking for information on MTHFR variants and supplementation with B12 and folate

    Hi~ It has been suggested that I take methyl Vit B12 and methyl folate due to my MTHRF lab results. Can someone point me to some articles about this? My serum B12 and folate are fine, my homocysteine levels are normal and I was able to get rid of my elevated mercury levels just fine when I...
  19. Timaca

    Is neural/limbic retraining (DNRS) a treatment for ME/CFS or not?

    That is quite an extensive list! Thanks for sharing! A pharmacist recommended this book. Amazon also suggested this book. They both seem to talk about brain retraining. Are you familiar with either book?
  20. Timaca

    Brain symptoms still getting worse - Losing hope

    Have you seen this? https://www.mechanicalbasis.org/ Please read his story. He and others describe the head feeling too big or heavy for the neck..... Here's a quote, from about halfway down the home page: The sensation that my head was too heavy and sinking downward? It was explicable...
  21. Timaca

    Small Intestinal Bacteria Overgrowth (SIBO)

    I don't have SIBO but I recently watched this YouTube video and found it informative:
  22. Timaca

    Compression pants alleviating POTS

    This explains compression levels: https://www.brightlifedirect.com/pages/compression-level-guide?gclid=Cj0KCQiAqY3zBRDQARIsAJeCVxNwPJoeWqvO9fQyvcEtoizJCpMzJ_JQk8ndQKilejkhsRX-Nfj_YLoaArvyEALw_wcB
  23. Timaca

    Sea salt and Iodine deficiency

    Hi Lenora~ My eyebrows grew back after I added iodine in to my diet. I'm 61 now so I'm not so sure that I'm younger than you! ;) Here's what I found online about the amount of iodine in iodized salt: Iodized salt in the U.S. contains 45 micrograms of iodine per gram of salt. The recommended...
  24. Timaca

    Compression Stocking or Compression Exercise Pants?

    I have an order placed with the company you recommended. They should arrive tomorrow. Thanks for the recommendation!
  25. Timaca

    Sea salt and Iodine deficiency

    The iodine I use is the store brand from Sprouts. 1 drop provides 150 mcg of iodine...the daily recommended amount. Thanks for your thoughts on iodine testing...I've recently had a more thorough work up on my thyroid via lab tests and everything is fine. I think my thyroid has been fine all...
  26. Timaca

    Sea salt and Iodine deficiency

    I think that can be a cause. My thyroid has always tested fine, with the yearly test. I don't know what the blood tests would have revealed during the shortened eyebrows....that happened in between my annual tests. I am grateful for full eyebrows and a healthy thyroid. It really was a wake up...
  27. Timaca

    Sea salt and Iodine deficiency

    That was the amount in the iodine drops I was taking and it allowed my eyebrows to grow back so it was enough for me.....
  28. Timaca

    Sea salt and Iodine deficiency

    I cook most of my meals from scratch and use very little salt. I was using sea salt, until I noticed my eyebrows shortening....a lot. I realized that was a sign of iodine deficiency so I bought some liquid iodine drops and started taking one drop a day (the recommended daily amount). My...
  29. Timaca

    What has helped you with sleep/insomnia - post links

    I quit looking at any screen (computer, phone, kindle) at least 1 hour before bedtime. If I find I'm having a hard time falling asleep, I will talk out loud to myself (softly) and tell my self that it is okay to relax and fall asleep. Amazingly, it works!