• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. the_phscale

    What Comes Next?

    @5vforest Thank you for your detailed and helpful reply. I appreciate you taking the time. You have my timeline correct- I left my original LLMD because I was paying for it with my student insurance. I have since graduated, and so lost that insurance. I'm on my parent's plan which I am very...
  2. the_phscale

    What Comes Next?

    Thank you for sharing your experiences. What do you mean by "subgroup"? Are you talking like, auto-immune versus infectious versus biome imbalance kind of thing? Or do you have some hunch on what is affecting you but need specifics in what exactly it is? This is a fair assessment, but as...
  3. the_phscale

    What Comes Next?

    @wholepartthings Gosh, I’ve never even heard of NK cells. A quick google got me a lot of results about fertility treatments? What blood test would be used for NK cells? My wbc is on the low side of normal, but my lymphocytes keep coming back high, and my neutrophils low. @Belbyr so what did...
  4. the_phscale

    What Comes Next?

    Alright squad, reaching out once again to try and get some insight into the medical mystery that is my life. A recap: onset of symptoms in April 2016 after several viral illnesses in a row (flu, cold, bad cold, etc.) Spent about a year with intense fatigue, joint pain, day/night reversal...
  5. the_phscale

    Looking for Scientific Article r.e ELISA

    Thank you! This is a great start! Out of curiosity, what were your search terms? I did a google with just “Elisa blood test false negative”, “b burgderfori ab tot reliability rate”, other stuff like that, and I found it really hard to weed through the results.
  6. the_phscale

    Looking for Scientific Article r.e ELISA

    Its commonly accepted among those of us who have a Lyme diagnosis that the ELISA is an imprecise exam with a high rate of false negatives. I’m trying to find some scientific articles demonstrating this false negative rate to send to a new doc who...frankly, knows a lot less about Lyme than I do...
  7. the_phscale

    Severe progressing brain symptoms - Lyme Disease?

    @Nine lives I did the DNA Connexions test and it all came back negative, even though my doctor and I knew that I had an active borrelia infection. So keep in mind that it's not perfect, and it is possible to skew the results with user error :/ @SeanQHX1 Diet changes are worthwhile as a way to...
  8. the_phscale

    New Doctor in San Diego, CA

    I do still see this particular doctor, although my insurance is changing soon so I’m going to have to leave his office and find someone new. I’m still on his protocol though, and intend to keep going with it. I take two antibiotics once a day, every day, as well as charcoal to help my liver and...
  9. the_phscale

    New Doctor in San Diego, CA

    Hi @lindaso1. Yes, I do feel that Dr. Shikhman has helped me. When I first saw him I was at about 40% functionality- I had declined rapidly over the course of a year, and was getting sicker. Dr Shikhman ordered the IgeneX Western Blot and definitively diagnosed me with Lyme, Babesia, Bartonella...
  10. the_phscale

    Intense Flare

    @Sancar ~ Thanks for asking! The flare passed...it took about three and a half weeks for me to really bounce back and return to a stable energy level again. I spoke to my LLMD about it and she seemed to think it was a profound herx as a result of the cordyceps, which is apparently microbial and...
  11. the_phscale

    Intense Flare

    Folks, I am having a terrible flare-up. I met with my LLMD's PA in mid-January to discuss how to keep making progress, since I had hit a plateau and wasn't seeing much change anymore. She started me on a herbal supplement called Cordyceps, one capsule a day, and about three days after I...
  12. the_phscale

    Young Leader on the Road to Recovery and Helping Others

    I'm just a few months shy of my 21st birthday! Better get prayin'!! In seriousness though, I am personally religious (reform jewish, if anyone is curious) and I believe that God is much more likely to heal through science than through miracles. If God "wants" me to get better, then eventually...
  13. the_phscale

    Word of mouth about remarkable recovery

    @trishrhymes and @Hip, thank you for sharing the information that you found! It sounds to me as though this treatment does have scientific validity, as the increased body temperature improves antibiotic functioning and creates a more hostile environment to Lyme bacteria. I'm very happy for my...
  14. the_phscale

    Word of mouth about remarkable recovery

    Hi all I have an acquaintance with diagnosed Lyme who may have stumbled on something that really did the trick for her. After being sick for I think about three years, she was clued into a treatment called "hyperthermia" where her internal body temperature was raised to over 100 F three or four...
  15. the_phscale

    Lyme questions

    @Alexandra90 I understand your concerns about getting a reliable test, and skepticism regarding how some tests give you positive results for a whole host of issues. At the same time I was tested for Lyme, the lab tested for co-infections and all kinds of other things....I ended up with a...
  16. the_phscale

    Lyme results confusion

    Hi Paul, I know that you posted about your IgG versus IgM results some time ago, but if you're still interested I can shed some light on that. I had similar results, and my physician explained that one of them (although I'm afraid I can't remember which one is which!) is an indicator of an...
  17. the_phscale

    Tingling inside head

    Hi, hopping on this thread two years after the last post! I have this exact same symptom! Like a buzzing or tingling sensation in my head and face, sometimes moving like a wave. My fingers will buzz, kind of like pins and needles, but only for a few seconds at a time (although it does happen...
  18. the_phscale

    Really Struggling

    Hi fam, an update on me! Caution: this post is mainly for venting purposes, so if you're already stressed, perhaps give this one a miss. Good self-care, y'all. I ended up going home for a week, and it helped a lot! I slept for probably 50% of each day and by the end, I felt like I could go back...
  19. the_phscale

    Really Struggling

    Thank you all so much for your kind words. Its incredible how much it helps just to know that other people are going through the same struggles that I am- not to mention validating! I've decided to take y'all's advice and listen to what my body is saying (which is "please, woman, rest already!")...
  20. the_phscale

    Really Struggling

    Hi all, The past two weeks have been exceptionally difficult. I've been sick for about a year now, diagnosed as Lyme-positive just about a month ago, with at least two co-infections (bartonella and babesia, still waiting on the Galaxy lab results for some others). I'm also a university student...
  21. the_phscale

    How to deal with being ill mentally.

    I definitely echo what the others have said. Be patient, be kind to yourself, hang out with pets. There's a book that I found pretty helpful called "How to be Sick" by Toni Bernhard- it's a guide on mindfulness and treating yourself well when experiencing chronic illness. I strongly recommend...
  22. the_phscale

    New Doctor in San Diego, CA

    Hello, San Diego friends! I had my first appointment with a new doctor, Dr. Shikhman at the Institute of Specialized Medicine in Sorrento Valley. He takes Anthem Blue Cross insurance and has quite a long waiting list- it can take a few months to get in to see him, so be prepared for that. Part...
  23. the_phscale

    What weird, medically vague symptoms other than your fatigue do you have (pressure, vibrating, etc)

    Hi @worldbackwards , you may have sorted this out by now, but that sounds to me an awful lot like intrusive thoughts characteristic of OCD. I've had OCD since I was a child, far longer than I've had CFS/ME, and I find that I get particular thoughts stuck in my head and then they play over and...
  24. the_phscale

    What weird, medically vague symptoms other than your fatigue do you have (pressure, vibrating, etc)

    Hi there, sorry to resuscitate this thread so long after the last post. I have symptoms similar to that mentioned by the original poster- specifically the vibration feeling in the head and face. I had some other MS-indicative symptoms, such as frequent urination, difficulty recalling words and...
  25. the_phscale

    Pins and Needles...in my face?

    Hey all, I'm still very new at this (both having a chronic illness and the rabbit hole of symptoms and diagnoses), so any thoughts or advice are taken gratefully. I'm really just looking for some insight or context in which to describe this symptom. It's very odd- I'll describe it here to the...
  26. the_phscale

    Staying in School

    Hey y'all, For those of you who have had to make the decision, how did you decide to take time off from school, become a part-time student, or remain enrolled despite your limits? I'm currently a full-time college student and I'm starting to really struggle, but it's hard to know whether taking...