• 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. frozenborderline

    Indigenous people of siberia tolerate tick borne infections better, have more resilience

    https://drive.google.com/file/d/1BBLa4FTv3LgBoZJNOtU9RQeraZ__026G/view?usp=drivesdk Interesting. Could validate environmental/dual factor theory of @Hip or it could be their microbiome or some epigenetic factor.
  2. RyeRyeBread

    Labwork Ordered - What would these tests show, if it is ME?

    I saw a new PCP today, and he gave me a referral to a rheumatologist :thumbsup: In the meantime, he ordered these tests: [ANA w/reflex if positive, C-reactive protein quant, lyme antibody/line blot reflex, sedimentation rate-westergren] If what I'm dealing with is in fact ME, what results can...
  3. A

    Worsening cognitive impairment (and Rickettsial dx)

    Hello all, I have been diagnosed with ME 4 years ago. Since then, I have quit my job and became a stay at home mom. Recently, I'd say in the passed three weeks, my memory loss has become worrisome. I forget things I just did, things I have said, I cannot find my words, and I also replace words...
  4. Hip

    Hygromycin A specifically targets Borrelia bacteria, may prevent chronic Lyme disease

    Targeted treatment with Hygromycin A may prevent chronic Lyme disease.
  5. H

    Causes of MCAS?

    Hi all, I'm wondering if anyone has any info on what are the possible causes of MCAS? And if someone's looking to try to address the root cause of their MCAS what areas should they look into, and in what order of importance? I'm also interested in whether anyone here has managed to figure out...
  6. ChookityPop

    100 tick bites. Would you ignore it?

    I have seriously had over 100 tick bites since I was born at our summer place. And the percentage of ticks with borrelia is even higher there up to 7% if I remember correctly. 2% carries borrelia on average. If you had over 100 tick bites would you simply ignore it? What would you do or think...
  7. frozenborderline

    My story of getting ill told in podcast form

    Listen to Origin Story Pt. 1 by Headless Youth Podcast on #SoundCloud https://soundcloud.app.goo.gl/heCz
  8. ChookityPop

    Have anyone tried longterm antibiotics for lyme?

    What was your experience? Did it help etc? I have had over 100 tick bites in my life. I am 31 years old and every summer I have gotten multiple tick bites since I was a kid. I have negative igm but positive igg. They followed up with the blot test that was positive. positive Elispot Borrelia...
  9. Cipher

    Nanotrap® Urine Test for Lyme Borreliosis

    Galaxy Diagnostics offers this test for $295 at the time of writing.
  10. Dufresne

    Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease

    Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease Marianne J. Middelveen,1 Eva Sapi,2 Jennie Burke,3 Katherine R. Filush,2 Agustin Franco,4 Melissa C. Fesler,5 and Raphael B. Stricker5,* Abstract Introduction: Lyme disease is a tickborne illness that generates...
  11. Dufresne

    The Long-Term Persistence of Borrelia burgdorferi Antigens and DNA in the Tissues of a Patient with Lyme Disease

    The Long-Term Persistence of Borrelia burgdorferi Antigens and DNA in the Tissues of a Patient with Lyme Disease. Sapi E1, Kasliwala RS2, Ismail H3, Torres JP4, Oldakowski M5, Markland S6, Gaur G7, Melillo A8, Eisendle K9, Liegner KB10,11,12, Libien J13, Goldman JE14. Abstract Whether...
  12. G

    Abnormal hair fibers - Exploring possible link to tick borne illness

    I have been meaning to share this for a while – as a feel it could be of interest and perhaps helpful to a number of people here. First some background. My fiancé and I both became ill around 5 years ago with some mystery illness. Starting with fever, severe fatigue, headaches, swollen joints...
  13. C

    Tick-borne illnesses that look like ME

    There’s an article in the current Atlantic by Meghan O’Rourke, a writer I’ve been following for some time because for years she believed she had ME, and was writing a book about it. Here’s the link: https://www.theatlantic.com/magazine/archive/2019/09/life-with-lyme/594736/ It seems that she’s...
  14. Sarah94

    PQQ and bacteria

    I am trying PQQ supplements for mitochondrial support. Wikipedia says "PQQ stimulates growth in bacteria". (https://en.m.wikipedia.org/wiki/Pyrroloquinoline_quinone) Does this mean that when a person takes PQQ supplements, any bacteria inside them (E.g. Lyme, SIBO) will be encouraged to grow? Or...
  15. Mariposa

    Why am I getting worse...viruses? Mould? Your thoughts!

    Hello everyone, I'm new to the forum :) (though I've been reading quite a lot). I was wondering if anyone had any thoughts on what might be going on with me. I've been seeing a functional nutritionist for over a year now. For the first 6 months I was making slow but gradual progress, little by...
  16. Z

    Most accurate lyme test

    Could we have a discussion regarding which test is the most accurate test for lyme disease and coinfections? Please share opinions and experiences
  17. M

    Scientific American article on why Borrelia (Lyme disease) is so evasive

  18. D

    Lyme Cultured From Post-Treatment Sero-Neg Patients; Another Lyme Agent Potentially Identified

    Isolation of live Borrelia burgdorferi sensu lato spirochetes from patients with undefined disorders and symptoms not typical for Lyme borreliosis N. Rudenko, M. Golovchenko ,M. Vancova, K. Clark, L. Grubhoffer, J.H. Oliver Jr. Clinical Microbiology and Infection, online first, December 7, 2015...