• 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. mrquasar

    New website on severe ME

    @Naomi10 Thank you for taking the time to create the site and spread greater awareness. :thumbsup:
  2. mrquasar

    Jennifer Brea: I have craniocervical and atlantoaxial instability

    @Neunistiva How are you doing these days? Do you remain bedridden?
  3. mrquasar

    Should I Start Full Lyme Treatment?

    Not to seem pedantic, but recent surveys of the gut microbiome have demonstrated that the strains in most commercially available probiotics, including S. boulardii, aren't even well represented in the healthy gut. Genera such as Bacteroides dominate the gut. So you're really not even replacing...
  4. mrquasar

    Should I Start Full Lyme Treatment?

    This is just anecdotal evidence, but I also have a friend who's convinced she has "late-stage Lyme." And yet after more than a year on antibiotics as well as other Lyme-directed treatments, she is no better. She also has frequent attacks of vomiting which may indeed be from all the antibiotic use.
  5. mrquasar

    In Memory of JBoneske

    Devastating news. I saw from another thread that he was recently diagnosed with hypothyroidism. I know how awful that alone can make you feel and how it can cause severe depression as that is exactly what I am going through right now. I too have had those dark thoughts but I have always reminded...
  6. mrquasar

    How to rule out an autoimmune process ?

    I've been following some of your recent threads. How are you doing lately?
  7. mrquasar

    Doctor in Houston

    The only one I know is Dr. Patricia Salvato. I saw her for one visit and she was very warm and compassionate. I went to her primarily to run several tests to rule out various chronic conditions and she was more than helpful in doing so. She is also apparently a Lyme specialist and although I...
  8. mrquasar

    Strange "anxiety" feelings

    It may be worth getting your thyroid checked if you haven't in a while. If it becomes overactive, you can start to feel shaky and anxious. Any changes in your weight or bowel movements? Are you sensitive to heat? Changes in appetite? Of course, all kinds of things can cause anxiety so just...
  9. mrquasar

    How to deal with cruel dr when I am desperate, exhausted all drs?? Getting sicker

    I am glad you are going back to get your thyroid levels re-tested. Since you're still on a blood-pressure medication, I honestly would not recommend the beta-blocker just for the insomnia. Not sleeping is horrible I know but I don't want you to have a low-blood pressure episode over it. Have...
  10. mrquasar

    How to deal with cruel dr when I am desperate, exhausted all drs?? Getting sicker

    I am glad you are going back to get your thyroid levels re-tested. Since you're still on a blood-pressure medication, I honestly would not recommend the beta-blocker just for the insomnia. Not sleeping is horrible I know but I don't want you to have a low-blood pressure episode over it. Have...
  11. mrquasar

    Fecal transplantation

    @AndrewR I have been looking into it too for potential bacterial overgrowth. But it doesn't seem to be available for anyone except C.diff patients. I'm hoping it will become available soon for more conditions.
  12. mrquasar

    How to deal with cruel dr when I am desperate, exhausted all drs?? Getting sicker

    There are only a few things that can cause hyperthyroidism, which you currently have. Grave's disease is an autoimmune form where your body produces an antibody that the thyroid mistakes for TSH, thus stimulating it to produce excessive thyroid hormones. This endocrinologist can test for this...
  13. mrquasar

    How to deal with cruel dr when I am desperate, exhausted all drs?? Getting sicker

    Okay so you are definitely hyperthyroid with the high FT3 and FT4. My impression from the article was that subacute thyroiditis cannot last for years either. It actually gave the impression that the inflammatory process damages the thyroid cells so if anything you should have gone into hypo long...
  14. mrquasar

    How to deal with cruel dr when I am desperate, exhausted all drs?? Getting sicker

    @starlily88 So sorry for all that you're struggling with. That's too much to handle! I can't help you with most of it except for the thyroid stuff as I have a thyroid condition. My understanding of thyroiditis is that it can cause a temporary phase of hyperthyroidism (which can cause the...
  15. mrquasar

    L-carnitine is working for me.

    I've seen other hyperthyroid patients taking l-carnitine to help reduce their thyroid levels so I would definitely take this word of caution seriously if your thyroid is at healthy levels.
  16. mrquasar

    When they can’t find something.

    This has been huge for me. Even now that I'm largely housebound with a particular health issue, just watching youtube clips of people with other illnesses or making a phone call to a family member helps to get me out of my own head for a little while, to get some perspective on things and be...
  17. mrquasar

    Fibromyalgia Syndrome: A Case Report on Controlled Remission of Symptoms by a Dietary Strategy.

    I'm starting to come around to the dietary route for treating or reversing many chronic illnesses (maybe not ME but who knows). I will begin a low-sugar, low-carb diet in the coming weeks for suspected D-lactic acidosis / bacterial overgrowth. From talks and documentaries I've watched, it's...
  18. mrquasar

    Weird symptoms

    Might be a long shot, but it could be a form of bacterial overgrowth or d-lactic acidosis. The treatment is a round of antibiotics and a low-carb diet. It would at least be worth trying to stay on a low-carb diet for a week or two and see if you notice any improvement in your symptoms. If you...
  19. mrquasar

    ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

    @Avenger I strongly suspect that I have d-lactic acidosis or a related bacterial overgrowth. I won't list my symptoms here but I've mentioned them in some of my older posts. I'm planning on taking a course of metronidazole sometime soon, it's on hold for the moment as I'm treating another health...
  20. mrquasar

    Does anyone else get these scary neurological attacks?

    @Neunistiva You should get your thyroid levels tested. All of the symptoms you mentioned can manifest in hyperthyroidism. The thyroid controls your entire metabolism, so when it gets overactive, everything speeds up. Your thoughts race, you overheat, you get tremors and panic attacks, muscle...
  21. mrquasar

    Now very severe HELP

    I would definitely seek immediate medical attention for him if he's continuing to deteriorate.
  22. mrquasar

    Now very severe HELP

    One solution is a bedpan, which would require someone to roll you on your side to put it in place for you to use. https://www.wikihow.com/Position-a-Bedpan. The other solution I read from another very severe patient was using a large heavy duty trash bag while lying/sitting on the edge of the bed.
  23. mrquasar

    Hospital

    I'm also scared to go to another doctor and be dismissed, or be misdiagnosed and given a treatment that makes things even worse. I've lost confidence that doctors have any clue what I'm dealing with, but I don't really either. How do I get out of this cycle?
  24. mrquasar

    Pineapple fund--donation to OMF increased to $5 million!

    OMG! Phenomenal news! It feels like the tide is finally beginning to turn now!!!
  25. mrquasar

    $1,000,000 donation to OMF!!!!!

    Holy guacamole! I checked their website and it's true! :angel::thumbsup::D:jaw-drop:
  26. mrquasar

    IVIG Treatment

    That makes it sound so easy. But if you're already moderate/severe and have had bad reactions to medicines in the past, it is a HUGE gamble to put a new compound in your system with no idea what will happen. I've taken that gamble several times, and every time had a bad reaction. A couple of...
  27. mrquasar

    IVIG Treatment

    I thought I remember @Jonathan Edwards saying there is no evidence that ME/CFS is caused by autoimmunity. :confused:
  28. mrquasar

    Unexplained Hypersensitivity to Life

    @Gingergrrl This sounds like MCAS, right? When I read this post, I immediately thought of you. Hopefully you can give our new member some good advice on this.
  29. mrquasar

    Vogue: We are now glamorous in 'CFS: The Invisible illness affecting millions of women.

    I'm not the perpetually offended type, but just imagine if they had said model posing as a cancer or AIDS 'model'. It is obscenely trivializing, but also so ridiculously inane that I will simply laugh it off. :lol:
  30. mrquasar

    Can an infected tooth cause fever,chills, felling extremelly ill?

    You really should go to a dentist to get the cavity filled or tooth pulled if it's that bad.