• 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. RUkiddingME

    Starting Mestinon treatment first week in January - any advice?

    Thank you so much for that info! I hope you have a huge improvement on it!
  2. RUkiddingME

    Am I the only one?

    That is wonderful! So happy for you and thanks for the info! Now to convince a doctor to prescribe it to me lol
  3. RUkiddingME

    Am I the only one?

    T
  4. RUkiddingME

    Starting Mestinon treatment first week in January - any advice?

    How do you convince your doctor to prescribe Mestinon for ME/CFS? I can’t imagine my doctor would be on board;(
  5. RUkiddingME

    Am I the only one?

    That’s wonderful! May I ask what dosage of Mestinon you started on?
  6. RUkiddingME

    Is twisting the wrists while sleeping some kind of symptom?

    I find that the wrist locking for me is much worse during crashes. Even my arms turn inwards at the elbow towards my chest. Time to get wrist braces for sleep as I wake up in agony.
  7. RUkiddingME

    Turmeric/Curcumin for ME/CFS?

    I have been taking curcumin for years but powder form. The past five months i switched to a gel form of curcumin and after the first three months, the lower back pain I had for years with any movement was gone! Countless chiropractic adjustments and acupuncture never touched the pain. I use...
  8. RUkiddingME

    20mg prednisolone as a rescue remedy?

    Wow this article is GOLD! thank you!
  9. RUkiddingME

    20mg prednisolone as a rescue remedy?

    I would love to find that thread you are referring to. Was it on here somewhere ? :)
  10. RUkiddingME

    Poll. What is your NK Function LU result if you tested.

    Last time I tested I was a 4 LU
  11. RUkiddingME

    My Experience With Dr. Kaufman at the Open Medicine Institute

    Thanks for the info!! If I were to see him again does he work out of both clinics?
  12. RUkiddingME

    Valcyte - what to expect ?

    Hi there I was on Valcyte for three years. I documented my journey in this blog- I hope all the entries are there. I tolerated the drug extremely well. Good luck http://forums.phoenixrising.me/index.php?entries/valcyte-2013-intro.1346/
  13. RUkiddingME

    Has Immunovir helped you?

    The last time I had my NK cells tested I was at a 6! I would love to know where I am at now I inserted a screen shot of info I found about pulsing
  14. RUkiddingME

    Has Immunovir helped you?

    Hi there I started pulsing Imunovir last April. It's really hard to tell if I am doing better on it but it definitely didn't make me worse. I started at a lower dose then built up to the 6 tabs a day week one and three and 2 tabs a day week 2 and four. Weekends off and every third month off...
  15. RUkiddingME

    My Experience With Dr. Kaufman at the Open Medicine Institute

    Oh Gingergirl that is music to my ears! I am thrilled that you are improving on the IVIG ! You deserve a break!! Got your message last night. Will reply soon xo
  16. RUkiddingME

    Something different: Apparent real recoveries from Toby Morrison's CFS Health Centre in Australia

    I was just going to say the same thing! I have been a member of this forum for years, have seen the top doctors and taken the toxic anti-viral so. Toby's program is the best thing that has happened to me since getting sick seven years ago. I only wish I had found him sooner!!! His Less is...
  17. RUkiddingME

    My Experience With Dr. Kaufman at the Open Medicine Institute

    Hi there, I have been sick for over seven years. I was in a wheelchair within 10 months of onset. Like most of us the illness started after a flue like illness. I now function at about 35% of normal. I have HHV6, EBV and SIBO and positive for MTHFR gene c677. I was on Valcyte for three...
  18. RUkiddingME

    My Experience With Dr. Kaufman at the Open Medicine Institute

    Hi Erica, sorry it took me so long to reply. I had not seen your message for a while and after I saw it I could not find my invoices from my clinic visits. The first visit in 2012, my lab tests cost me 1,565 after a discount because we paid with credit card and another set of tests done in...
  19. RUkiddingME

    Comment by 'RUkiddingME' in 'PEM Busters - BACC and Creatine - Start 3 days ago'

    Not sure if you can view this article (came out yesterday)but it sure supports the amino acid theory. I hope you do well on this new protocol. I had a huge amino acid test done through Genova DIagnostics and my results were the same as in this study. It also recommended I take créatine but I...
  20. RUkiddingME

    Comment by 'RUkiddingME' in 'Imunovir Users PLEASE READ - UPDATE ON PROTOCOL --- LDN Info also'

    Thanks! I don't get reactions to medication or food much. Taking Valcyte was like candy for me. The only thing that has really affected me so far is bone broth. I will never try that again!! I hope the Imunovir switches my immune system back to the way it was for six years(never cought a...
  21. RUkiddingME

    Comment by 'RUkiddingME' in 'Imunovir Users PLEASE READ - UPDATE ON PROTOCOL --- LDN Info also'

    Thanks for the prompt reply! I'm so sorry you get so acidic on the Imunovir. Sounds aweful! I'm really nervous about starting it. I'm so scared I will make myself worse instead of better. I almost wonder if I should just take Inosine for now . Seeing Dr. Monday to discuss
  22. RUkiddingME

    Comment by 'RUkiddingME' in 'Imunovir Users PLEASE READ - UPDATE ON PROTOCOL --- LDN Info also'

    Hi there I know this is an old thread but I was wondering what are your thoughts on Imunovir. Do you recommend it? I am about to start it on Monday. I did three years of Valcyte and I had two years that was functioning at a higher level but went back to my 30%. I have been on LDN for 4...
  23. RUkiddingME

    Pulsing valcyte??

    Has anyone ever pulse Valcyte one month on one off? I have been off Valcyte since February and I'm getting all my old symptoms back. I had been on it for three years with a 4 month break. When I first start it I have increased energy at the beginning then I get much much worse for about 8...
  24. RUkiddingME

    Adding Bartonella Henselae to the mix?

    I haven't been to OMI since last June but it seems like this is a new avenue they are looking into? Bartonella and MCAS. Maybe the focus is not on anti-viral treatment as much. I was on Valcyte for three years but now am on nothing and not doing too well. I'm hoping some new treatment emerges...
  25. RUkiddingME

    Pix/reports from the #Missing Millions protests today

    My hubby and daughter had the brilliant idea to make a video of me walking in empty shoes for the #MissingMillions protest. In the last six years I have been able to walk to our mailbox maybe four times. I bought those shoes three years ago and have not been able to go for a walk in them yet...
  26. RUkiddingME

    My hands curl up and won't open during over exertion - anyone else?

    Every time I crash my hands turn inwards at the wrists like a severe handicap. It's the weirdest thing. I know on the days when I automatically do this that I won't be leaving my bed.
  27. RUkiddingME

    Phoenix Rising supports the Millions Missing global day of protest

    Everyone please place this overlay over your Facebook profile picture today http://twibbon.com/support/millionsmissing
  28. RUkiddingME

    Genova ION test - Amino Acids Issue

    I also just received my Ion profile from Genova. So much information. The most shocking to me was that my copper level is though the roof! In the interpretive guide they only talk about low Copper levels, not high so I guess it's not seen often. It's bizarre that your amino acids are mostly...
  29. RUkiddingME

    Anyone experience anxiety on LDN and just push through it??

    I haven't experienced anxiety on it. I have been taking LDN for over three years at 3 mg daily. if you are on Facebook look up the LDN Research Trust page. They are a wealth of information and you can ask anything with so many members responding. Good luck :)
  30. RUkiddingME

    Can you quit Valcyte cold turkey or should I taper off?

    Hi Fellow Canadian, I have been on Valcyte a long time with no weight gain. I would be curious to know if you had any improvements on the drug? It was life changing for me