• 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. oipemowell

    WPI took my blood!

    Text deleted by myself, confidential info
  2. oipemowell

    Taking Adderal, Ritalin or Concerta for Cognitive problems?

    I dont know if anyone will respond to my post here, but Dan I think I agree with you. I have a good friend who has had CFS for 4 years now. The only way he gets out of bed is with Adderall. He keeps telling me get it, cuz it would give me more energy. My brain function is fine (due to staying on...
  3. oipemowell

    anticipating headaches on methylation protocol - suggestions please

    I am new in starting up the methylation vitamins. I am starting with Methylmate 1 drop under my tongue every 5th day. The first and second day I get sharp headaches and more tired. I am hoping my body will adjust and I can go to one drop every 4th day, etc. Then I want to add in the Hydroxy...
  4. oipemowell

    Welcome!

    Well Im all for networking and support, so thanks for the invite! Im in Portland and would love to make friends in this town...this illness keeps you pretty isolated.
  5. oipemowell

    Article: From the PCR Side: the Cooperative Diagnostics XMRV Interview with Dr. Brent Satterfield

    Ah, and furthermore, Ive thrown so much money at this illness, who cares about the $400??? It's a drop in the bucket of 23 years of thowing away money on stupider things Ive done to get well...like seeing psychics for their diagnosis!!! Donna
  6. oipemowell

    Article: From the PCR Side: the Cooperative Diagnostics XMRV Interview with Dr. Brent Satterfield

    Wow! Because no one has been unable to replicate WPI's finding, and because even WPI cant find XMRV via PCR anymore, it really does make you wonder. What got me the most was that Satterfield, as many others in the field, have friends/relatives with this illness. They have direct contact with the...
  7. oipemowell

    Just started the simplified Yasko protocol, Wow.

    HI Ukme, I was wondering why you said the phosphatidyl is hard on the adrenals? This is the second supplement that Rich says to add in after the multi. I am on lo-dose hydrocortisone, so just wondering. Thanks, Donna
  8. oipemowell

    question for richvank - methylation + adrenal support

    Hi Rich, Ive written to you personally but not here on the forum. Im studying, waiting for some test results. Have a question: based on my detoxification test from Genova Diagnostics, one of my polymorphisms is GSTM1 is absent..no gene there at all. The suggestion from Genova, and my ND has...
  9. oipemowell

    Latest update from Judy and Annette

    This probably was already posted, but I cant see where. It's the latest interview and it is going to help me sleep tonite! http://www.youtube.com/watch?v=D3pie1kpIVQ&feature=player_embedded Maybe we shall all rise from our sick beds eventually! Gotta hang in there longer. (Im saying this...
  10. oipemowell

    Stanford Chronic Infectious Illness Initiative (Including ME/CFS)

    Come a long way finally I just wanted to add that twenty years ago, when I first got a computer and got online to see what people knew about CFS, NOBODY had any clue and everyone was despondent and in deep darkness. (Ive been sick since 88). I compare that to today, when we have so much...
  11. oipemowell

    Stanford Chronic Infectious Illness Initiative (Including ME/CFS)

    Thanks Cort for this new info. I really needed something tonite, as I have been severely depressed that past couple days and am feeling weak in the spirit of being sick everyday and alone. I left a message for June Lang....worth a try...to be part of some research, maybe. I also have been...
  12. oipemowell

    Article: Blood Products Advisory Committee Meeting Announcement (BPAC) December 14-15, 2010

    I registered too.
  13. oipemowell

    Article: My ME/CFS Story: from the Amygdala Retraining On by Cort Johnson

    If a person had the flu, would they be expected to exercise??? NO!! And yet trying to exercise within your "energy envelope" is a challenge always. What seems easy to do for normal people looks herculean to me, and I wonder how do they do that? I do remember in college, before illness, that I...
  14. oipemowell

    Low-dose naltrexone (LDN) - how's it working for you?

    It worked for a week and a half, or helped with energy and less pain, and was able to get off Vicodin. Then when I tried to raise it to 4 mgs, dizziness, splitting headache, etc. hit, so I lowered it...had to go as low as 1 mg for side effects to go away. Tried to get back up to 3 where I had...
  15. oipemowell

    Modes of transmission of XMRV - MRVs

    Omerbasket...I know what you mean about dating. This is a HUGE issue for me. What SA2 had to say, which started this thread, made me feel better, however, cuz truly, there isnt a very clear sexual transmission link like with HIV. I feel that Dr. Judy jumped the gun in making us all scared about...
  16. oipemowell

    Comment by 'oipemowell' in 'Online Disabled Dating Sux'

    I have found many men in there that arent disabled and I wonder what the heck they want a disabled woman for? And when you email them, you dont hear back. Also, 3 guys have emailed me from weird places that Guana.....maybe they think a woman will be interested and they can marry and come to the...
  17. oipemowell

    Heart Hurt

    Camas, where are you? Id be goin to Cannon Beach. I drove down there once, and had to lay in the back of my car for an hour, couldnt fall asleep. so I could drive back. Other times, I get down to the beach and just lay there like a dead person. It's so pathetic. I think, this is ridiculous. How...
  18. oipemowell

    Heart Hurt

    Yes, rain is good Camas. But short summers make me stressed out. I feel like I got to hurry and enjoy the sun, once it's here cuz it wont be around very long. Then if Im having a bad day, and have to rest, while the sun is out, I feel Im wasting a very precious sun day. I should be down at the...
  19. oipemowell

    Heart Hurt

    Ha Ha, Victoria!! Falling off your chair. That's not funny, but it is. I also would eat my lunch in my car, take 15 minutes to do that, cuz I would bring a salad to try to cure myself with diet, then the other 15, lean back in carseat. Then on my 15 minute breaks ...2 per day..Id go into the...
  20. oipemowell

    Heart Hurt

    Hi Victoria, yes I know the feeling of being with people, but not "with" them...even with family. When I worked, I felt like I was dying...I think everyone thot I was stuck up. I was just trying not to fall off my chair. I would stare at the computer and have my headset on and pretend I was on...
  21. oipemowell

    Heart Hurt

    I know Camas....Im ready to put my summer clothes on...I like to wear lots of color in the summer...and wear less clothes too! This bundling up 9 months out of the year is getting to me. Im a California girl, and I feel like I need to move again...somewhere else...Im SO feeling stuck in my life...
  22. oipemowell

    Heart Hurt

    Thanks Jackie. No, I guess our spirits dont wear out, they will live on...once out of these bodies. I just dont know how to go about getting my needs to love and be loved met. Intimately. I have my kids. But Im home alone alot during the day, (night too!). It especially hits at night. It's an...
  23. oipemowell

    Heart Hurt

    One is the lonliness number....been listening to 3 Dog Night...guess that dates me. Oh well. Live alone, too much time alone. No love. No one to hold me when I feel overwhelmed. No one to walk this road with, which is one of heavy emotional burdens and challenges. My spirit is wearing out. I...
  24. oipemowell

    Learning CFS: the Lerner Antiviral Treatment Trial Succeeds

    He reported that Vistide (brand name)/Cidofiovir (generic) - was effective against HCMV but that he uses it only for the patients who have not responded to the standard protocol after at least 1 year because it can affect the kidneys. Is standard protocol using the Valtrex? Is this...