• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. gracenote

    Live webcast IoM meeting Jan. 27th 1:pm starting

    The webcast will begin shortly. If you tune in now, you will hear music and see people setting up.
  2. gracenote

    Mind/Body

    Not the point, but funny? "I'm Triggered: Neuroscience"
  3. gracenote

    Books about living with or overcoming illness

    You might find this book interesting. It's on Kindle and you can even "look inside." http://www.amazon.com/In-Kingdom-Sick-History-ebook/dp/B009SJZIE2/ref=tmm_kin_title_0?ie=UTF8&qid=1372275576&sr=1-1
  4. gracenote

    Nagalase levels

    My Nagalase was 2.4. Three quarters of a year of GcMAF injections and it went down to 1.8. A little disappointed that it didn't go lower.
  5. gracenote

    URGENT: Dec 6 Deadline to email the FDA's Ampligen Advisory Committee

    My letter is much simpler than Cort's. Robert Miller's template at the beginning of this thread makes it easy to get started. It only took me a few minutes to write this, and I encourage others to give it a try.
  6. gracenote

    (Open Access)"50 Shades of Grey in Scientific Publication-How Digital Publishing Is Harming Science"

    Simon and Alex, What is this "recent special issue" you speak of? Excuse me if I'm missing something obvious. Thanks.
  7. gracenote

    Review: Unity of opposites? CFS and the challenge of divergent perspectives in guideline development

    http://www.meactionuk.org.uk/Ruffled-feathers.htm?forumid=331851
  8. gracenote

    Mikovits radio interview Oct 7: XMRV, WPI, accusation of theft etc

    Here are some really good notes, by Maxine Smith, that have been posted on facebook. Permission to share.
  9. gracenote

    Mikovits radio interview Oct 7: XMRV, WPI, accusation of theft etc

    http://www.blogtalkradio.com/in-short-order/2012/11/04/in-short-order--dr-judy-mikovits
  10. gracenote

    OUR FAVORITE DRUG (HOPE), AND TIME TO SAY “AUF WIEDERSEHEN”, October 8, 2012, by XMRV Global Action

    CFS Patient Advocate WEDNESDAY, OCTOBER 10, 2012 http://cfspatientadvocate.blogspot.com/2012/10/see-you-later.html
  11. gracenote

    Ketotifen for leaky gut

    My doctor prescribed Ketotifen for leaky gut. I've been taking it for about 4 months now. I don't know what it's doing for my gut, but it is helping with sleep. I need to take it about 3 hours before I want to sleep and I sleep better and in longer chuncks. I still take Ambien, but I was able to...
  12. gracenote

    Please EMAIL JARROW regarding their Methyl-b12 / tooth sensitivities...

    Slightly off topic, but I'm wondering if anyone knows about the drops staining teeth? I started getting dark stains, especially on my lower teeth. I'm wondering if it's from the Holistic Health MegaDrops Hydroxy B12. I was googling trying to find an answer and found this thread.
  13. gracenote

    Juice Fasting

    Ha ha ha ha. Most of what I make doesn't taste so good, either. For the smoothies I used kale, spinach, parsley, celery, cucumber, granny smith apple, lemon, chia seeds and some sprouted something-or-other protein powder. I added a little stevia. Right now for juicing I am using a...
  14. gracenote

    Juice Fasting

    I just started juicing again this week and doing one coffee enema a day. There are times when this is not possible, but I think doing the Simplified Methylation protocol for the past year, and also doing a liver/gallbladder cleanse, has helped. I also spent the last several months blending my...
  15. gracenote

    Lyme Disease as a model and or subset of CFS - Must reading on Lyme or CFS/ME

    Thanks for sharing your findings and questions, LHCTom. I, too, am asking whether I have CFS or chronic Lyme disease or both. I meet all the criteria for the ICC ME. I had a positive Western Blot but not by CDC standards. I had a positive response on the Advanced Laboratory Services Borrelia...
  16. gracenote

    Facebook Timeline Covers for ME/CFS Awareness?

    It's very nice, Nielk. I think you meant 17 million.
  17. gracenote

    Cumulative life stress in chronic fatigue syndrome - Nater et al ('11) (CDC research)

    Thank you, Dolphin. Is the full paper posted anywhere?
  18. gracenote

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    I'm completely confused by these different labels ng, ml, mcg and I no longer have my original vial. I had my first injection at my doctor's office. His initial instructions were to start with 20mcg. I told him I wanted to start with 10 and he was okay with that. The nurse gave me an...
  19. gracenote

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    I may have the labels wrong. I divided the vial into 10 parts. My doctor suggested I start at 20mcg and go up to 40mcg, but instead I did 10mcgs and went up to 15mcg.
  20. gracenote

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    I've been taking GcMAF for 6 weeks now. I started at .1 and have increased to .15 ml. I've had no negative symptoms, no inflammation. I'm a bit improved. I'd say I'm usually about 30 on the Bell scale, and now I would say I'm closer to 35. I started walking a few blocks most days just...
  21. gracenote

    MY BAD REACTION to KEFIR WATER--anyone else?

    my coconut water kefir experiments so far I noticed. I would suggest you try a different water kefir before giving up. My experiments from just this last week. I tried Kevita coconut flavor. I did not have a negative reaction to it, but I didn't really like it. I also tried two other...
  22. gracenote

    Next CFSAC meeting date has been announced for November 8, 2011

    Very well said, Andrew. Thank you so much for testifying again.
  23. gracenote

    New Lyme disease culture test now available!

    I was part of a small study that used this new Lyme test. Although my IGenex tests have never been positive (by CDC standards), I am positive with this new culture test. I am really interested in finding out the reliability of these results.
  24. gracenote

    Next CFSAC meeting date has been announced for November 8, 2011

    Thank you so much, Suzy, for following up on these questions. I'm disappointed that there will be no video. I loved being able to watch the CFSAC in real time while staying connected to other patients on forums and facebook. I'm not able to use audio, and once the CFSAC is over, interest in...
  25. gracenote

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    I appreciate everyone sharing their experiences. I'm waiting for my Nagalase test results and then will decide if I want to try GcMAF.
  26. gracenote

    Square One: WPI closed down; XRx blog, 10/2/11

    This is incredibly sad news. I'm grateful for Jamie's honesty. I hope we can all be kind to each other while we move ahead.