• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Elisa

    Comment by 'Elisa' in 'So dizzy'

    You can also look for neck trigger points that may help around the sternocleidomastoid- check google images for this too. Do self message of neck - may help. And EFT - when I am in a bad bind - which is often :)!
    • Elisa
    • Blog entry comment
  2. Elisa

    Comment by 'Elisa' in 'So dizzy'

    Oh, I went to neurologist about my dizziness and she said two things - get pt to retrain inner ear (epley maneuver) and have them work on your neck. You can do a google image search for ways to do the Epley maneuver yourself or Here's a good video that you may want to try...
    • Elisa
    • Blog entry comment
  3. Elisa

    Comment by 'Elisa' in 'So dizzy'

    I have this too. Here is what I consider when I am dizzy - my blood pressure - is it too low. Do I need more salt or potassium. Am I drinking enough water etc. Have I tried electrolyte replacement? Next I think, ears and balance. Am I reacting to a food or environmental issue or allergy. I...
    • Elisa
    • Blog entry comment
  4. Elisa

    Huge energy today with Grapefruit and Ubiquinol (Coenzyme Q10). We'll see about tomorrow.

    Hi, Thank-you for sharing this valuable information! Can you share what's in MitoMix? Thanks!
  5. Elisa

    Research update from Prof. Ron Davis (video!)

    @RYO - "I often try to describe to my friends that living with this disease is like chronically fighting the flu while having a severe hangover." This is EXACTLY what I have said for many years!!!!
  6. Elisa

    Research update from Prof. Ron Davis (video!)

    SALT & BLOOD STICKINESS In Dr. Davis's video, I found two things interesting from my experience with ME/CFS. The first is SALT - he described that the substrate reacts with changes in impedance first low (allowing in) and then increased impedance (restricting). As most of us know, POTS is a...
  7. Elisa

    Headache & Dizziness/Vertigo for Months

    Maybe Some Day - thank-you...that is true and something I guess I hadnt really considered. It was such a shock to me. Thanks for helping me put it into perspective! Glad you're doing better...any tips on how you got there?
  8. Elisa

    Headache & Dizziness/Vertigo for Months

    Thank-you so much Leela! I recently read that melatonin is used in place of indomethacin for some types of headaches. I wonder my sleep isn't right - and thus, I'm not producing the required melatonin... Thanks again!
  9. Elisa

    Headache & Dizziness/Vertigo for Months

    Hi All, I'm pretty desperate now - starting last Oct '16 my ME/CFS got much much worse out of no where and I wasn't able to figure out why - normally I can reverse all things and get back to my baseline - but not this time and I now am as bad as I was 22+ yrs ago at the beginning... Over a...
  10. Elisa

    Hair Mineral Testing

    Hi all, I had a hair mineral test (Doctor's Data) recently and found that I have extremely elevated Silver - 113 x times the highest normal. My level is 16 and the normal is < 0.15. I do NOT take colloidal silver, swim in pools, use hot tubs, work in a photography studio or other silver related...
  11. Elisa

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    Interesting video/talk by Dr Naviaux on Autism / gives us glimpses to his thinking...
  12. Elisa

    MitoQ

    I'm interested too if anyone has tried this yet? Elisabeth
  13. Elisa

    Evidence of Nerve Damage in About Half of Fibromyalgia Patients

    Evidence of Nerve Damage in About Half of Fibromyalgia Patients http://www.sciencedaily.com/releases/2013/07/130730163138.htm July 30, 2013 — About half of a small group of patients with fibromyalgia -- a common syndrome that causes chronic pain and other symptoms -- was found to have damage...
    • Elisa
    • Thread
    • fibromyalgia small fiber neuropathy
    • Replies: 3
    • Forum: Fibromyalgia
  14. Elisa

    Two Q's - TSH & Alkaline phosphatase

    Thanks Sushi...that is excellent advice! Who do you think are the top CFS docs - I am in Ohio. I guess maybe NYC is closest... Do you or anyone have any suggestions? Thanks so much, Elisabeth
  15. Elisa

    Two Q's - TSH & Alkaline phosphatase

    Thanks for the imput - so grateful... I have read the AP is high in ME - interesting that it may be from the gut. Endos in my area just refer to shrinks - no matter how high or low my TSH is...what in the world can I do. It's insane. Wish I could get these drenching sweats under control -...
  16. Elisa

    Two Q's - TSH & Alkaline phosphatase

    I take lots of vitamins - not sure which ones would affect TSH? Nothing new recently. I have seen two endocrinologists - in the past - they generally refer me to a therapist/shrink - no matter how out of range my TSH is - I even have nodules and swallowing issues - they seem uninterested. That...
  17. Elisa

    Two Q's - TSH & Alkaline phosphatase

    Thank you Sushi - you're always such a life-saver - so grateful for your reply. I have had dysatonomia, forever - have been able to manage fainting with high salt diet and lots of fluids (water) and special stockings. Things go awry when I get an infection of something else comes up -...
  18. Elisa

    Two Q's - TSH & Alkaline phosphatase

    Hi all, I have been in and out of the ER three times in the last three weeks for fainting - severe spells. fainting occurs when I am asleep (about three hours after I fall asleep) or just about to wake up. I also have rotating shaking chills that paralyze me and drenching sweats all day and...
  19. Elisa

    In Memory of Rich Van Konynenburg.

    I am so sorry. I am saddened to tears. Rich was so generous with his help - and had helped me so very much! Our community had the greatest respect for his tireless efforts to find a cause and stop the suffering. He helped so many of us and he educated so many doctors providing them with...
  20. Elisa

    Doctor Needed in Ohio (OH) - Northeastern or Cleveland area

    Hi! Thanks for your reply! The conventional GPs in this area are generally w/ the Cleveland Clinic (CC) system and I need someone open to treatments not just antidepressants. I went to one doctor at the CC for YEARS hoping for help and all I did is fill out a survey on how I felt (every time...
  21. Elisa

    Doctor Needed in Ohio (OH) - Northeastern or Cleveland area

    Hi All, Periodically, I post this in hopes that someone has found a cfs doctor in my area - northeastern Ohio - specifically westside suburbs of Cleveland, Ohio (OH). So if anyone has a doctor...please, please post here. I have already reviewed all of the lists and actually have a database of...
  22. Elisa

    Lipkin Leak?

    12:01 AM from what I know...
  23. Elisa

    Lipkin Leak?

    Hi all, FYI I am not certain the above is legit or an early press leak - but I decided to post it anyway. I hope for our sake - that's NOT it! God Bless, Elisabeth
  24. Elisa

    Lipkin Leak?

    http://www.scotsman.com/news/health/viral-infection-ruled-out-as-cause-of-me-1-2531721 Viral infection ruled out as cause of ME Published on Tuesday 18 September 2012 00:00 VIRUSES have nothing to do with chronic fatigue syndrome (CFS), despite earlier evidence of a link, a study has shown...
  25. Elisa

    Lipkin XMRV study to be released June 30th

    ****Found this - is it a leak???? Legit? Spoiler Alert!**** http://www.scotsman.com/news/health/viral-infection-ruled-out-as-cause-of-me-1-2531721 Viral infection ruled out as cause of ME Published on Tuesday 18 September 2012 00:00 VIRUSES have nothing to do with chronic fatigue...
  26. Elisa

    Lipkin Study Press Conference 18th Sept

    I am a serious skeptic and I really hope I'm wrong. But I fully believe that Lipkin was brought in to put the retrovirus fire out and explain that retroviruses are endogenous (aka harmless remnants) etc. I studied lots of his videos and this is how he framed it. I think if there was a big...
  27. Elisa

    MAF 878 Available - Anyone already using it?

    Hi All, I split my original starter in 1/4ths. I was really sick/weak and got severely depressed the first round by the time I titrated up to two tsps. So I stopped and waited a month. I made another batch a few weeks ago and again started with a toothpick amount working up to two tsps and...
  28. Elisa

    Is Fibromyalgia Caused by ‘Cold Sore’ Virus? Researchers Bet It Is

    Regarding herpes family eradication/suppression in this study: I have been trying to take the MAF 878 (not injection, yogurt like liquid) and noticed that when I up the dose I get really weak in the legs - I think people call it molasses fatigue. Anyway, I wonder if the weakness that Ukxmrv...
  29. Elisa

    Is 23andMe worth it?

    Hi All, Like many of us, I have limited resources. But I am very motivated to find tests that allow me a greater understanding of my illness. I have been sick a very long time and have been of late VERY discouraged. I have been taking Dr Enlander's MAF 878 and it has nearly toppled me, twice -...
  30. Elisa

    Is Fibromyalgia Caused by ‘Cold Sore’ Virus? Researchers Bet It Is

    I am wondering what natural supplements other than lysine would be helpful? The link posted above by GhostGum (thanks GhostGum) is really helpful in thinking of ways to inhibit this family of viruses - in the gut. Vit D, Resveratrol, Iodine are valuable. Any ideas on this - because the...