• 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.

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  1. hope love light

    KDM in September

    Hi All, I am going to see KDM in September and I would like to chat with other patients. Please send me a private message so we can talk. I am also looking to find out if anyone knows another person or patient who will be going to EuroVolley as I would like to share a room and split the...
  2. hope love light

    Comment by 'hope love light' in 'And This Explains Why I'm Sick'

    Thanks Carrigon for posting this was an interesting video :) Hope
  3. hope love light

    Comment by 'hope love light' in 'Valcyte - Day 13'

    Thank you for sharing your journey and I hope you start to feel better :) Hope Love Light
  4. hope love light

    Comment by 'hope love light' in 'The Unseen'

    Carrigon, I was just crying at home yesterday for most of the same reasons that you mentioned. I am a ghost whom my neighbors never see. Too tired to socialize or have anyone over cause I'm dizzy and anxious most the time. I don't have alot of friends and get lonely at times too, I miss being...
  5. hope love light

    Sleep Hormone - Restores Vigor

    Hi All, Here is a link to an article about what some researchers are finding with sleep hormones and chronic illness... Sleep hormone restores vigor and reverses apathy in sickness, Oregon scientists report Getting sick can make anyone fell listless and blah, and some chronic conditions leave...
  6. hope love light

    Suffering and spirituality

    Do you feel that suffering has made you a more spiritual person? Yes, after I got sick 21 years ago I had to re-define who I was as a person. We all get so wrapped up in what we do for a living (or what we did I should say), and it was very hard for me to let that all go. I got sick at the...
  7. hope love light

    CFS vs Idiopathic Chronic Fatigue

    Hi Svet, Thank you for sharing your story and explaining more about your illness. We all care about you and are sorry you are in the boat (of sorts) with us. Hugs, Hope Love Light
  8. hope love light

    DR SARAH MYHIILL WINS!!

    Woo Hoo! Hope Love Light
  9. hope love light

    Comment by 'hope love light' in 'Permanent Forum Member Slot on the PR Board of Directors - Nominations Requested'

    still accepting nominations? then alex3619 would be my vote! Hope
  10. hope love light

    pres threatening to withhold aug ssdi pymtns

    Agreed... they don't want to roll back the Bush tax cuts so they are spinning to make it look like Obama is attacking Seniors and the Disabled.
  11. hope love light

    Comment by 'hope love light' in 'L-Carnitine and Dr. Myhill'

    Hi Nico, I'm sorry to hear that hun! Hang in there. Hope
  12. hope love light

    Comment by 'hope love light' in 'L-Carnitine and Dr. Myhill'

    Hi Purple, Please let me know the brand of COQ10 powder that you take in case I can't tolerate the pills again. Oh I will have to look on Myhills website for that recipe for the Magnesium since I want to avoid too much in the gut and problems there. Thanks, Hope Love Light
  13. hope love light

    Comment by 'hope love light' in 'L-Carnitine and Dr. Myhill'

    Hi Justy, Yes I want to get the level of COQ-10 up but last time I tried it it didn't agree with me, I have no idea why that would be? I took the D because my blood test showed I was deficient and now I'm back in the "normal" range. At this point I'm going to work on the things that are...
  14. hope love light

    Comment by 'hope love light' in 'L-Carnitine and Dr. Myhill'

    Hi Alex, Yeah I saw that comment and thought it was interesting as well. I am not a vegetarian myself as I always felt I needed more animal protein. I have her Meth test on my list to get done one of these days... Here is my list of some of the tests I'm interesting in getting done...
  15. hope love light

    Comment by 'hope love light' in 'Good moments'

    Thats beautiful Dainty and I'm glad you got to enjoy it for a few moments. Hope Love Light
  16. hope love light

    L-Carnitine and Dr. Myhill

    Hi All, I was reading this post on Dr. Myhill site about L-Carnitine and CFS thought I should share it. http://drmyhill.co.uk/wiki/L_-_Carnitine Right now I am in the process of build back up my supplements. Here is the list I currently take: Multi Vitamin (Women's Daily Nuitriton) by...
  17. hope love light

    Comment by 'hope love light' in 'Leibi Kletsky'

    Thanks for the reminder Neilk... Bless that family! Hope Love Light
  18. hope love light

    Does anyone else feel revolting after a shower?

    Hi Tulip, Two things are going on your autonomic nervous system is being affected by the temperature change even if it isnt that hot. Second thing is your veins dilate which can make you feel sick. My suggestions when I use to take a shower was sit on the floor of the shower not directly...
  19. hope love light

    Sick After Blood Draw?? Need Advice

    Hi All, Went to the GP today and feel sick as a dog after the blood draw. She only took 2 vials of blood? Does anyone else have this awful reaction? I know I have not been out and sitting around talking waiting for the blood made me all sweaty.... my back was all sweaty just sitting...
  20. hope love light

    17 years of a ME/CFS dx, and it is Lyme, Bartonella and Babesia not ME/CFS

    Hi Katie, I'm gearing up for some viral testing hopefully on the 19th. I have heard that getting LYME tested at a Lab called Igenix is good, but costs around $500. What lab do you recommend? Also can I get the Bartonella and Babesia done at Quest Labs since insurance will at least cover...
  21. hope love light

    Allergy Testing & Gut Testing... need advice!

    Hi All, I'm getting geared up for more testing and I want advice and input from those who have done it... I want to get Food Allergy Testing done and I want to know what Labs and tests people recommend? I have heard that some allergy tesing like the scratch test is very unreliable; and...
  22. hope love light

    Submit Disability Q's for White House Virtual Town Hall Meeting on July 14, 2011

    This must be some kind of a damn joke... They should come to my house and watch me try to walk the 10 steps to the bathroom. See that I don't have the energy to take a bath except every other day. See my poor husband bringing all my meals to me in bed. Your right where do they get these perky...
  23. hope love light

    What's causing post-meal crashing?

    Low Blood Volume is my guess.... once you eat all the blood is going to your gut for digestion. It happens to me too the brain fog and having to lay down for quite awhile until I can digest. Not to mention that digestion takes alot of energy. Hugs, Hope
  24. hope love light

    Nexavir and sore throat

    Hi All, I use to take Kutapressin (which was very similar) if not the same as Nexavir is now. I am saddened to hear that it is so expensive as it was cheap 20 years ago :( That being said I did an injection every day for 1-2 years I can't remeber now since we are going back 20 years...
  25. hope love light

    How to calm down a very overstimulated and tired body..

    Hi Soxfan, All of this is just an idea to get you from the wired state... Try Rescue Remedy it takes the edge off if your not too wired. Try meditation at nap time maybe listing to something soothing so you can get to sleep. Melatonin is a hormone that regulates the wake/sleep cycle...
  26. hope love light

    for the ladies; symptoms vary with cycle?

    Hi Rich, This is interesting and thanks for coming into the Ladies Room. I was reading Dr. Jamie Deckloff-Jones blog and one of the things that she said helped her the most was" bioidentical hormone replacement in physiologic doses". That is before the anti-virals anyway...
  27. hope love light

    Comment by 'hope love light' in '21 Day Meditation Challenge - Deepah Chopra'

    Hi Cansado, Yeah sorry about the frist challenge.. it pooped out on my also as it was already over when we got started with it. I hope the new Meditation Challenge is going well for you, I had good intnetions and then got sick and did not start the challenge on time. I have however been...