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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Moxie

    Constant Adrenaline While Trying to Sleep?

    Every night? Oh man, how are you still sane? I'm so sorry. Does it feel like you're going to float right off the bed when you get zapped?
  2. Moxie

    Do you work / have career?

    RedLineBoy - you said you live in PA...have you been tested for Lyme? If not, please find a LLMD to consult with. PA is smack in the middle of the growing northeast US Lyme hotbed and all of your symptoms could be attributable to it, including the poor NK function and elevated viral titres. Just...
  3. Moxie

    New doctor, finally on meds

    He sounds thorough and it seems like it was an over-all positive experience for you. I hope the treatments help! Would you mind sharing the name of your doctor? I'm on the east coast, too. And much as I'd like to see Dr. Klimas or Dr. Rey, they are still not accepting new patients. Good luck...
  4. Moxie

    Does brain fog ever go away with treatment?

    My brain fog has (most days) improved dramatically, though I find it starts creeping in again when I push too hard, am overly stressed, or don't get enough sleep. A number of things have helped me, including supplementing the B-vits I was deficient in (B12 and B1) and reducing the inflammation...
  5. Moxie

    Stupid/Cranky and arbitrary doctors: rant warning!

    Thanks, Bluebell. I enjoy it. I wish I could practice full-time, but feel lucky - in the scheme of things - to be able to still practice even on a very limited basis and to have found an understanding clinic to employ me.
  6. Moxie

    Stupid/Cranky and arbitrary doctors: rant warning!

    I agree completely. I feel like one of the primary things GP's are trained to do is to choose the right specialist to which to turf us! ;P I think I terrify my GP in some ways. She takes me seriously, but I can practically see the wheels turning as she wonders whether or not she should take me...
  7. Moxie

    Stupid/Cranky and arbitrary doctors: rant warning!

    I don't really fancy myself an "animal communicator." I'm definitely more analytical and clinical when it comes to diagnostics and a very thorough physical exam. I do watch closely for body language, behavior, and their physical responses to stimuli, but I don't pretend I can converse with them...
  8. Moxie

    Stupid/Cranky and arbitrary doctors: rant warning!

    I think that's the part of your post that ticked me off the most on your behalf. It's asinine to suggest that you are responsible in any way for the manifestation of those symptoms. I'm glad they're at least being proactive with testing, and the culture is a good thing. Something that seems to...
  9. Moxie

    Stupid/Cranky and arbitrary doctors: rant warning!

    First, on topic, to Valentijn - I'm so sorry you're dealing with all of this. How are you feeling now? Has the spray at least helped the nasal inflammation at all? What's next for you? Human medicine drives absolutely nuts. Before my CFS dx, I dealt with the system extensively after a tbi...
  10. Moxie

    Constant Adrenaline While Trying to Sleep?

    Thank you for that PhoenixBurger. Something to run by my doc when I see her next, for sure.
  11. Moxie

    Constant Adrenaline While Trying to Sleep?

    I had an awful experience last week, and I'm wondering if anyone here can shed some light. I'm not sure whether or not it's related to my screwed up physiology. I was out picking wineberries in the front yard Wednesday when I was stung by yellow jackets 5 or 6 times (awful!!). I'm not sure the...
    • Moxie
    • Thread
    • Replies: 8
    • Forum: Sleep
  12. Moxie

    doxycycline versus minocycline

    As with anything, it depends on the bug. Different bacteria will have different susceptibilities to different antimicrobials. There are predictable trends and known spectra, but there also will be variations in "local" colonies.That's why good clinicians will perform cultures and sensitivities...
  13. Moxie

    Significant Improvement Story -- Focus on Thiamine Deficiency

    Interesting. I was found B1 deficient (serum test, not functional) last summer and have been supplementing since. Now that I think about it, I don't think I've ever been re-tested to see if my serum level is up.. And I'm only taking 100mg/day. I'll experiment with higher doses. Unlikely to...
  14. Moxie

    The Blue Ribbon: Ryan Prior on His ME/CFS Documentary Movie

    Donating now. I think this is phenomenal. It also looks like one of your dots is in my neck of the woods (Virginia). I would like to help if I can. I imagine I can come up with some lodging at the very least. :) Thank you both for doing this!
  15. Moxie

    I got my Igenex results

    Ah, thank you, Ema. I was stuck on Lyme specific stuff - the IgG quantitative assay makes a lot of sense. I have heard of Dr. Jemsek. I'll look into him further. Thank you again. I always find your posts very helpful. Do you mind if I ask..are you formally medically trained? You're very...
  16. Moxie

    KDM abx protocol for borrelia

    Oh, and yes - I'd love to know your protocol, too. I'm starting down the same path. Waiting for the slowly grinding wheels of the medical community to turn...
  17. Moxie

    KDM abx protocol for borrelia

    Hi Suzanne, There are many protocols, and they are most often tailored to the individual patient. At least that's the hope. Dr. Burrascano's Advanced Topics in Lyme Disease pdf has a lot of good information about the different antibiotics, pros and cons, when they should be used, etc. It's...
  18. Moxie

    I got my Igenex results

    Thank you snowathlete. For the clarification and the congrats. It's so funny that this is cause for celebration, but I agree that it is! Any time something actually pops on a lab test it's not only validation but a target. I also recently learned I have low NK function and high HHV6 and EBV...
  19. Moxie

    I got my Igenex results

    Thank you very much for that, Ema. Yes - sorry - I am in Northern VA. DC isn't all that close (45 minutes) but for a good doctor, I would travel there. The VA western suburbs are easier - Reston, Sterling, Ashburn, Lansdowne. Given that two of my doctors are out of state already, DC really isn't...
  20. Moxie

    I got my Igenex results

    Hello all. Do you ever feel like your clinical picture just gets muddier and muddier? (I've left out the negatives for simplicity) IgM 23-25 ++ 31 +++ 39 IND 58 ++ 83-93 + IgG 31 + 34 IND 39 IND 41 ++ 58 + I feel like I have a halfway decent grasp on how they're interpreted. Both Igenexx...
  21. Moxie

    What do want/appreciate from your GP / PCP?

    Oh, and please, please..follow up.
  22. Moxie

    What do want/appreciate from your GP / PCP?

    What do I want? I want her to fix me. :) But barring that, I want her to believe me when I present my symptoms to her, and do her best to understand what's happening. Learn from me so she might better help the next person she sees. Be willing to explore and be thorough. Be dogged. If I haven't...
  23. Moxie

    Muscle Weakness

    I do something similar to this freezing you describe, but only in my hands, so far. It's like they lock up, usually when I am holding something heavy(ish) in the same position too long, like a bowl of cereal. I'll take take the object away with my other hand, and it takes a few moments before my...
  24. Moxie

    Meal suggestions? Cutting right back on dairy, gluten, eggs, citrus, corn, spelt

    PennyIA, I'd love to have recipes! Great thread idea, snowathlete!
  25. Moxie

    Meal suggestions? Cutting right back on dairy, gluten, eggs, citrus, corn, spelt

    I also eat lots of sauteed (just olive oil and sea salt +/- black pepper over medium heat until tender, flipping occasionally) squash, zucchini, and asparagus. One of my favorite meals is roasted veggies. I use any combination of asparagus, fingerling or other small potatoes (not paleo)...
  26. Moxie

    Meal suggestions? Cutting right back on dairy, gluten, eggs, citrus, corn, spelt

    I've been collecting simple, easy to make paleo(ish) recipes. None of us have so much energy for cooking, so the simpler the better! The chicken I usually make does involve lemon, but I don't know how much it contributes, honestly, since I don't marinate it - just drizzle. So you could certainly...
  27. Moxie

    Dr. Mark Hyman - Anybody have a good response?

    Utterly ridiculous. Most of us eat more cleanly than the vast majority of the population because we're doing everything we can to take impeccable care of our fragile bodies in hopes of achieving health. And if I had a dollar for every person here who has written about how active and fit and...
  28. Moxie

    Muscle Weakness

    It's definitely both for me. My stamina is pitiful, but my baseline strength is terrible, too. On the one hand this is all somehow reassuring to read. On the other hand, it's pretty disheartening. I know many of you have been ill much longer than I have. I won't lie..I miss being able to use...
  29. Moxie

    Muscle Weakness

    I do experience this, too. Holding up my kindle to read for any length of time is difficult, even if it's resting on something. My wrist will get sore quickly and I have to keep adjusting my position to use different muscles or prop it on something where it's entirely supported. Yes, holding the...
  30. Moxie

    Muscle Weakness

    Yes, my EMG and NCV were both normal, too. It's so frustrating! The fallacies of medicine. It's sometimes at least as much art as science. What you describe is very similar to what I experience. It is variable, but does (usually) seem to be cumulative. The more I do, the longer I can usually...