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    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. J

    Cort: Happy Birthday To You!!

    Happy Birthday Cort!
  2. J

    Article: CAA Talks With the Experts on XMRV

    I agree that the MLV variation question has been overplayed and even distorted by the press. You have the same thing (variations) with HIV and hepatitis. While the general public may not be able to grasp this, the scientists are well aware, including the denialists. As for XMRV not being...
  3. J

    Klonopin

    I take both Immunovir and LDN also. I started LDN about 6 weeks ago and Immunovir about 4 weeks ago. I am much worse! I guess I should have spaced them out more, so I know what is doing what, but I have been pretty much bedridden for the last 5 weeks and my pain is more severe and relentless...
  4. J

    Dreambirdie's video is on ireport.cnn.com!

    Go Dreambirdie!!!!! Outstanding job on the video and all of your advocacy efforts!! I left a comment, too!!! Keep em' coming guys!!!!
  5. J

    You aren't going to believe this...Mycoplasma/Lo/XMRV

    I am XMRV positive. I have tried many, many medications and I must say that there are 2 that made me MUCH worse. Doxycycline and Valcyte. Both of these made me feel as if I could drop dead at any moment. Both aggravated all of my symptoms and added more to the mix. Both made me go from...
  6. J

    Easy Solution to Treat CFS - Dr. Oz

    Bravo Tympwarp#9!!!!! Excellent, excellent letter!
  7. J

    XMRV, do you have both CFS and another autoimmune disease?

    Wciarci-interesting that you mentioned scleroderma. My aunt has both scleroderma and rheumatoid arthritis (diagnosed in her twenties) and has early onset heart failure (late 40's). My mother (her sister) has fibromyalgia and I believe CFS (though not diagnosed). Their other sister has...
  8. J

    Spinal headache and spinal tap?

    Abporter, please keep us posted on how you are doing. Sorry to hear of your headaches! I've had a spinal headache twice. Terrible! Both times were after I received a nerve block in my back. I was down for 3 days each time. They were the worst headaches imaginable and I had to lie...
  9. J

    Another CDC/CFS website change

    I do not understand how they can get away with naming infectious agents, NMH, etc. as possible causes and then turn around and tell doctors NOT to test for them. Looks like it's time for me to pick up the phone and make a nuisance of myself.
  10. J

    Another CDC/CFS website change

    Has anyone noticed that the CDC has changed alot of their CFS info again? More CYA. For example, I no longer see the part where they tell doctors to not do specific tests for us (tilt-table, co-infections, etc.). They now say, "As of today, one thing is certain: there are no immune...
  11. J

    How long does it take to get the results from the culture test?

    Redo-I had my done in April and it only took two and a half weeks. They fax the ordering doctor a report as soon as they bill you. Mine was positive by the way. I'm modrate to severe with gradual onset.
  12. J

    Hair color loss?

    My hair has gotten much, much thinner. In fact, if I had not started out with very thick hair, I would be bald by now. Whatever hair I lose, does not come back in, therefore, I will be bald before long. Strange thing is, the hair that I do have seems to grow normally. I am female, btw, which...
  13. J

    Braces

    Does anyone have any advice on dental braces? I am supposed to begin IV chelation soon, but I am also supposed to be getting braces. My orthodontist says that they are made of iron, with a small amount of nickel and titanium, but not to worry since they don't leech. I have high amounts of...
  14. J

    Dr. Montoya's Valcyte study

    I took Valcyte for two months and experienced horrendous side effects. All of my symptoms became much worse and I lost over half of my hair. I had planned to keep taking it, however, hoping to tough it out in hopes of eventually seeing improvement. However, after 2 months, my insurance...
  15. J

    Moving to Private Group

    I am shocked that people in our own community are capable of such a heinous act of betrayal. I would think that if you are so strongly are against any treatment or doctors, then you should just GET OUT AND MIND YOUR OWN BUSINESS!! No one is forcing you to participate. Most of us are here...
  16. J

    Need doc who does neural therapy in Pittsburgh and/or Columbus area

    Does anyone know of any doctors who do neural therapy and are accepting new patients in the Pittsburgh, PA and/or Columbus, Ohio area? Thanks!
  17. J

    Seizures

    Thanks Shane and Lisa! Shane-I do think that I'll ask for a Holtor monitor. I'm glad you mentioned that. At least that will prove the weird heart stuff (racing heart and flutters, shortness of breath) that I frequently get. Dear goodness, you've been through the ringer! Breaks my heart to...
  18. J

    Heart Attack from CFS Treatment

    Kathi-I am so glad that you've shared your story! I would like to know more about Dr. Cheney's opinion on T3. The Pittsburgh FFC also has me on 100mcg T3, so I am finding this quite alarming.
  19. J

    Seizures

    Athene-thanks alot for the info. I will check into getting the tests, though I doubt my doctor will order any. Coincidentally, my heart rate was sky high the day of the seizure. This happens to me from time to time, not sure why. I do feel like it's connected some way. I'll continue to...
  20. J

    Heart Attack from CFS Treatment

    kathi! I am so very sorry for what's happened to you!!! Thank you for sharing. I have been going to the Pittsburgh FFC for about a year-though there is, of course a different doctor there now. I have cancelled my last couple of appts. though because I've continued to get worse. They act as...
  21. J

    Seizures

    Loldershaw-thanks for the replies. I do not live alone, but with my husband (who does not "get it") and ignores everything going on around him. No, I do not have anyone to help-only my parents and brother are the only ones who take this seriously and they are too busy to fool with it. On a...
  22. J

    Seizures

    Thanks Fresheyes! Loldershaw, what I meant is that halfway through the test, I got really sick:hot and sweaty, then cold and shaky, nauseous, dizzy, felt like passing out, severe throbbing headache, and very weak. Finally, a tech came to check on me because as she put it "my results were so...
  23. J

    Seizures

    Thanks Loldershaw! No, my doctor did not refer me to anyone, nor did he order any tests. Yes, it was a grand-mal seizure-violent convulsions, spit pouring out of my mouth. My doc said that since I neither lost consciousness, nor bit my tongue, that it was not an epileptic seizure, just a...
  24. J

    Seizures

    Thank you for your reply Weldman! The only prescriptions I am currently taking are low dose hydrocortisone and T3 for thyroid. I've been on the same dosages for almost a year and have not had any problems with them. I just had my thyroid levels checked and they were within normal range. I...
  25. J

    Seizures

    Hi-I'm sorry if this has already been covered, I am new to the forum, so still learning the in's and out's. I was wondering if anyone else has experienced a new onset of seizures since getting CFS. I had a seizure a couple of weeks ago, and have never had one before (I am 37) and have no...
  26. J

    My father on same page as Dr Oz & co

    I am so sorry that you're having to deal with that from family Gracie. I can relate, I guess most of us can. My parents and brother are the only ones who take this seriously. Over the past few years, I've lost all but a couple of friends, and even my husband and the rest of my family refuse...
  27. J

    XMRV Testing-FYI

    Levi-I called VIP a few days ago to order the XAND2 kit. They put me on a waiting list (6 weeks). I asked them how long it would take to receive results once they receive the blood and they told me 2 weeks.