• 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. maddietod

    Coffee, cocoa, tea, & mold

    I finally stopped drinking coffee, tea, and cocoa, and my brain fog is gone and my energy is close to normal I'm very sensitive to mold. I'm wondering if there's something in the drying/fermenting process that creates allergens that maybe we don't know about. Tea is by far the worst, and I...
  2. E

    Should I test/treat for mold, when exposure was decade+ ago?

    I'm pretty sure that mold was the origin story of my ME/CFS although I've only realised it in the last year! My question is if I should still be looking to test / treat this, even though it was so long ago? I lived in a London basement flat 2009 - 2011. We had a damp storage cupboard under the...
  3. W

    I have mold illness symptoms but test negative for mold...

    I started getting sick 8 years ago. At that time we got married, had fist kid, moved into new house and got a new used car. My symptoms were fatigue and sinus pressure. My wife never really got sick. I got a sleep study and it was negative. A few years later I developed a slight dizziness...
  4. frozenborderline

    Looking for podcast participants for my ME/CFS related podcast

    looking for podcast participants Potentially upsetting Looking for people to be interviewed on a podcast: The most interesting things I'd like to talk about ir type of guests : 1. People who have had some kind of experience with environmental factors in their illness People who have done some...
  5. frozenborderline

    Headless youth podcast Origin Story Part III--my experiences with CCI diagnosis, the history of Lake Tahoe and Environmental illness

    Listen to Origin Story Pt. 3 by Headless Youth Podcast on #SoundCloud https://soundcloud.app.goo.gl/pHvgT
  6. C

    Prevalence of Aspergillus-Derived Mycotoxins (Ochratoxin, Aflatoxin, and Gliotoxin) and Their Distribution in the Urinalysis of ME/...(Wu et al, 2022)

    Prevalence of Aspergillus-Derived Mycotoxins (Ochratoxin, Aflatoxin, and Gliotoxin) and Their Distribution in the Urinalysis of ME/CFS Patients (Wu et al, 2022) Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a known complex, multi-organ system disorder with a sudden or...
  7. frozenborderline

    Long covid, mold and mcas--Lake Tahoe 2.0?

    https://openletteropenmedicinefoundation.com/long-covid-and-environmental-toxins-lake-tahoe-2-0/ Heres a short post I made on my website about long covid and mold. Hopefully google indexes it soon. For now, hopefully I can get some eyes on it by posting it here.
  8. frozenborderline

    Open letter to the Open Medicine foundation

    Just the scant beginnings of a long-term advocacy project I'm working on Re environmental factors in this illness and having the omf address them. https://openletteropenmedicinefoundation.com
  9. frozenborderline

    "Go west young man", a podcast interview with a guest who did mold avoidance to put his illness in remission

    Here's a new one, particularly long, in which I interview a friend I knew from school who got sick with similar issues simultaneously to me and ended up pursuing mold avoidance in new Mexico. We talk about his whole journey but at the end we get into his visions for using permaculture to...
  10. frozenborderline

    Trying to help a fellow sick person in Los Angeles

    Please help me get this person some resources. Including caregiving and a (paid of course) ride to the desert.... I'm desperate here. Writing to try and find a caregiver for someone with mild illness who is willing to help someone I know who is stuck in Los Angeles with possible me/cfs, get...
  11. 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
  12. D

    How have you approached mold toxin detox?

    My fatigue doctor advised me to start taking Great Plains bentonite (a binder) for my mold toxin detox and we'll likely add more things to the treatment plan shortly after I move to my new apt at the end of Oct. I scored sky high on the Real Time Labs mycotoxin test. Great Plains Bentonite...
  13. frozenborderline

    Helpless (Essay i wrote from current place of pain and uncertainty)

  14. L

    Starting my mold avoidance adventure

    So tomorrow I'm leaving for my first month of mold avoidance. A test run that I hope will give me a lot of information on how to move forward. I'm severe, but I think I can avoid crashing, because I have what is hopefully enough help. I don't know what to expect. It could be heaven, hell, or...
  15. frozenborderline

    Locations rating map of the USA. How many people find this lines up w their experience?

    https://paradigmchange.me/rate-locations/ I find this map to be fairly accurate but not detailed enough, it leaves out lots of areas of the us
  16. frozenborderline

    Outdoor toxins of particular relevance to mold illness patients

    https://paradigmchange.me/wp/outdoor-toxins/ There is a lot of focus on building mold in me/cfs but often outdoor toxins are underlooked, because they are harder to study. But there is a large volume of anecdote suggesting they matter in me/cfs as much as building mold.
  17. frozenborderline

    Open letter to the OMF--help save us canaries

    Made this video which id like to get to people at the Open Medicine Foundation and maybe other researchers as well. As a side note, I find the thumbnail deeply unflattering and want tech support to know if I can edit the thumbnail from mobile Please watch and share as widely as possible if...
  18. I AM

    Would you buy a home that needs low level mold remediation? Asking people who are mold sensitive/toxic...

    WWYD -- What Would You Do? To those who are mold sensitive... I am in the process of buying a house and the mold and mycotoxins tests (Realtime Labs) are being conducted Friday morning. Is there any level of mold or mycotoxin that you would remediate or would you walk away from the deal? Do...
  19. necessary8

    The RBC-NOX hypothesis

    The RBC-NOX hypothesis Hello again, everyone. Welcome, to the RBC-NOX hypothesis, which I consider by far my best idea yet. It connects the IDO metabolic trap, red blood cell deformability, craniocervical instability (including recoveries after surgery), Alan Light’s research on fatigue...
  20. frozenborderline

    The role of mycotoxins and nanoparticles in CFS (why mold may have gotten worse)

    Continued here: https://cfsuntied.net/2014/12/04/and-now-for-something-completely-different/?fbclid=IwAR3ehxDjqnuh5ceOOZqwphK_sbu-2nVEg15rnvLBXXBKjt7MDbwQ-WlJdH4 @Hip @sb4 @Learner1
  21. Hip

    Just a few sprays of a home-made Dr Brewer antifungal nasal spray for nasal mold triggered significant PEM

    Has anyone found that Dr Joseph Brewer's antifungal nasal spray, which is designed to kill nasal mold, triggers substantial fatigue and PEM, even after light doses for a few days? I tried a home-made version of Brewer's nasal spray last week, and was hit with considerable tiredness and PEM...