• 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. I

    ME/CFS Warrior: The Stanford Study - 19 March 2014

    I closed down the blog last year and will open it again once I've moved this month but here's the original post in case anyone finds it helpful. I'm in the process of moving so I may not be back on for a couple days in case there are questions. I was grateful to be in the study. 3/19/2014...
  2. I

    raw cannibis as anti-oxidant, anti-inflamatory, anti-cancer

    Info on cbd effects: http://dixieelixirs.com/resources/cannabidiol-cbd-fact-sheet/ Where to buy: http://dixieelixirs.com/products/dixie-x/
  3. I

    In Memory of Rich Van Konynenburg.

    I have no words. I am stunned. As many others have mentioned Rich gave so much to our community. I could always count on his wise words as well as his calming influence during rough times. He helped me personally and it seemed his ministry was to us. Rich had a presence even if he wasn't...
  4. I

    Neck pain, back pain and what to do?

    I haven't read all the posts on this thread but I wanted to throw my support in the mix. Dealing with back/neck pain is difficult to tolerate. I've been doing everything I can to avoid a lumbar fusion. My sister had similar symptoms that you describe. She had 3 vertebrae fused in her neck. She...
  5. I

    In Memory of Patrick Kelly/hubcap_halo

    Thank you Cort for writing this. This is such a loss for our community. I remember him well. When I was first diagnosed and started posting on prohealth he impressed me with how positive he was in the face of this illness. I don't really have words. May he be at peace...
  6. I

    shortness of breath seasonal in warmer weather? asthma like sort of....

    My ME doctor had me go through Quest labs. A previous doctor sent me to LabCorp. Whichever lab you use make sure to test for IGA as well as IgG antibodies. My IgG antibodies through LabCorp were as high as the test measures. My IGA was positive through Quest which indicates a chronic active...
  7. I

    The Open Medicine Institute, ME/CFS Research?

    Thanks for sharing your experience chloe. I too had a lousy experience with kogelnik as well as many other people i've been in contact with. I have heard only 2 people who have been happy-one is cybercat and the other is someone I'm sure works for him.
  8. I

    Lamotrigine

    There is some research out there that suggests lamictal (lamotrigine) has an effect on HHV-6. I've been on Lamictal for over a year and have found it helpful I'm on 150mg. I agree with leaves that you are titrating up too fast. Doctor's tend to not understand that we are at higher risk...
  9. I

    Rhodiola rosea

    It worked great for me when my ME symptoms were mild but when the ME progressed to the moderate/severe level I didn't have as much success with it.
  10. I

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

    Maybe its just me but it seems that when someone is writing you asking questions for their father who has stage 4 lung cancer, calls for a little compassion rather than a typical bureaucratic reply that isn't helpful.
  11. I

    Has Anyone Seen Dr. Kogelnik?

    It's great you've had a different experience than I and many others have had. There are reports on various message boards describing the same experience I've had so it isn't just a friend of mine and myself. It's quite a few people unfortunately. I think Dr. Kogelnik has promising potential but...
  12. I

    New post from Dr. Deckoff Jones, talks about Knox/Peterson

    They both had a great response to Valcyte, then relapsed but were subsequently treated again with Valcyte and immune modulators. Both are back working or at least they were a couple years ago.
  13. I

    Has Anyone Seen Dr. Kogelnik?

    Thanks Claggy. I should have searched the forum before making the appt with him. I completely agree with the above quotes. I question how much of an understanding he has of this disease. I read an account of a talk he gave which made me think he had lots to offer but really I think he's...
  14. I

    Help/Resources needed: Small Intestine Bacterial Overgrowth(SIBO) + Lupus + Sjogrens

    I had SIBO and took Xifaxan for it. It's an antibiotic that is only utilized by the gut rather than the whole body. I had no side effects from it. Sometimes insurance won't pay for it but its worth a shot and should provide her with some relief. I wish I knew of a doctor in IA but I don't. I...
  15. I

    Has Anyone Seen Dr. Kogelnik?

    From my experience with him I wouldn't waste the time, energy, or money to see kogelnik. There are a lot of doc's in the bay area and north and south who will prescribe anti virals. kogelnik is a bit of a one trick pony but with poor follow up-doesn't return phone calls, respond to emails. I saw...
  16. I

    Traveling with ME-Plane or Car Ride?

    Hi Nielk- Did you crash after flying for 3 hours? I'm not sure if I'm traveling by myself or not. I might have someone who can travel with me. I can't drive over 3 miles or drive on the freeway so I have to have someone else drive if I go that route (no pun intended). With flying at least...
  17. I

    Traveling with ME-Plane or Car Ride?

    I have fairly severe ME. I need to travel about 500 miles away. I'm trying to figure out which form of travel is the easiest on our disease whether it be planes, trains, or automobiles. It would mean a 10 hour car ride or a 3 hour plane trip. I have not flown or traveled since I got sick...
  18. I

    how to pull out of bad crash (due to arv's)

    I wonder about adrenal fatigue, thyroid functioning. ARV's can be tough on both. Maybe anything you can do to help support mitochondria. Do you have NMH or POTS? Could that have worsened on ARV's? I don't have any real advice, just support. It's brutal being in a crash like this.
  19. I

    Adrenal Issues and treatment problems

    That would be irritating. I appreciate you sharing it with us. Sing- I share your frustration with the medical profession not wanting to treat hypoadrenia. My 24 hour cortisol is at the last stage with low levels throughout. I have to supplement with cortisone or I have bad adrenal symptoms.
  20. I

    Adrenal Issues and treatment problems

    Great article. Thanks for posting this.
  21. I

    Adrenal Issues and treatment problems

    I took a strong medication for a week that stressed my adrenals out. My OI has been worse ever since. I've been wondering why but this explains it.
  22. I

    I Just Had Blood Drawn For the Montoya Study

    FYI-the study is still open. They are still in need of healthy control subjects. I'm trying to recruit healthy controls. The sooner we get the study filled the sooner we'll get the results.
  23. I

    Gordon Medical Associates (Collaborator with WPI) - Mikovts lecture and XMRV Findings

    Lanya- I got mine too with a negative result. It seems that everyone who was in this cluster of patient samples that got 'misplaced' are all turning up negative. I think our blood samples got compromised after they finally found them in the refrigerator. By the time they found them they'd been...
  24. I

    A review of EVB and CFS by Dr. A Martin Lerner

    I'm having a positive experience with Valtrex so far. I've been on it 2 weeks with no side effects and about 20% improvement (knock on wood). Thanks for posting this Ann. I've been waiting to read about Dr. Lerner's research regarding EBV.
  25. I

    Sensory Storms

    How funny. I just saw this exact thing on a blog I read over the weekend. It definitely describes things I've been through. Can't remember the name of the blog but aren't we supposed to quote sources of where things come from? I seem to remember going through this last year about copyright...
  26. I

    Has Anyone Seen Dr. Kogelnik?

    I'm wondering what your experiences are and/or any contact information for him. He used to work with Dr. Montoya at Stanford. Thanks for any info!
  27. I

    Already in a study, but no results. Shall I get VIPdx test if I can?

    It is the same doctor's office. I agree that something isn't right. I also agree 100% that they've prescribed off-label medications with scantier evidence than this so it makes no sense that they won't try prescribing ARV's especially since there are large numbers of people wanting to take...
  28. I

    Already in a study, but no results. Shall I get VIPdx test if I can?

    Hi Susan- I'm in the same boat as you. I could have written this post myself! We must have gotten into the same study at the same doctor's office. I can't believe its been almost 10 months since we were tested and they told us it would only be a couple months at the most to get the results.. I...
  29. I

    Looking at three Docs in Northern California

    I've heard good things about Dr. Nathan-you can look at his profile on the Gordon Medical Associates website. I haven't heard anything about Dr. Shaw and I've heard mixed reviews about Dr. Powell. My vote, since you are considering lyme, hormones, etc... is Dr. Nathan.