• 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 (FM), 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. MastBCrazy

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    Glad you will be leading @Cort . Thank you!
  2. MastBCrazy

    Niacin Sauna Protocol

    I've been diagnosed with ME but have been seeing a functional medicine physician and clinic so am getting treatment. I have improved enough to get me to where I can try this, but even with my best attempts at careful heartrate monitoring, it is easy to trigger PEM/PENE. And don't forget - where...
  3. MastBCrazy

    Niacin Sauna Protocol

    @Dallase1 and @junkcrap50 It is ambitious, and far more tricky to do without over-doing, than is at first apparent. Moreso as I still use a wheelchair around my apartment, but am trying to work my way out of that. I'm attempting a modified version of this now. Basically, as I understand it...
  4. MastBCrazy

    Vaccine-triggered CFS linked to nasopharynx inflammation, and 81% cured or improved by treating this nasopharyngitis

    Sounds like a yeast or fungus as those microbes are well documented for making vinegar among other metabolites. I was treated with nasal antifungals and benefited from losing odours that others couldn't detect. I recommend someone familiar with the work of Dr Neil Nathan or Dr. Ritchie...
  5. MastBCrazy

    What big data analysis do we need for ME/CFS?

    I miss HealClick et al
  6. MastBCrazy

    Dealing with Cold Feet

    Yes, particularly if PEM is near. Hot water bottle in a towel works best for me. My hands also get cold, but I can bury those more easily.
  7. MastBCrazy

    Comment by 'MastBCrazy' in 'Vacation to Toronto'

    Glad you didn't get sick and enjoyed the Bloor West Village area of the city.
  8. MastBCrazy

    Does anyone understand the trigger of POTS/Dysautonomia re: bending from a standing position?

    Have you tried an anti-G counter maneuvers (tight cross legs, squeeze tight, wait for head to clear, then try squatting SLOWLY with legs, maintaining height /elevation of the BP sensors at heart and neck)? I find it can help temporarily, but for me, the resulting headache can well offset any...
  9. MastBCrazy

    Exact name of the cognitive disorder

    Olla I had a neurologist apply a similarly unhelpful 'diagnosis'. My full diagnosis to the CCC definition for CFS, with the specialist detailing specific aspects that make employment impossible was more helpful. I wish you well in your battle. I hope that you can get justice.
  10. MastBCrazy

    Flare in fungal symptoms

    New allergy or sensitivity?
  11. MastBCrazy

    Supplement made you MORE "sensitive to meds?"

    I had a bad cognitive reaction to citicoline, and was unable to tolerate it. So I can't say about any effect on medication sensitivity (which was already very high for me).
  12. MastBCrazy

    Another "Oh Well" thread.

    Say it ain't so
  13. MastBCrazy

    Comment by 'MastBCrazy' in 'Thankful on Columbus Day'

    Thank you. It is hard to hold a sentence, so structure and flow and form and have become this primitive goo. I'm afraid to post anything. When my very heart starts to turn... well, I have been so pent up, and needed to wrestle something to the page. But, Metta is a meditation of extending an...
  14. MastBCrazy

    MastBCrazy

    2 today, one tomorrow.
  15. MastBCrazy

    Thankful on Columbus Day

    I haven't been writing, and there are so few resources to work with these days. So forgive the crudeness..... Yep, I'm one of them. Canadian Thanksgiving is here. A shorter growing season yields an earlier harvest. :nerd: Rather than travelling to my sister's for a meet and meat feast, I'll...
  16. MastBCrazy

    Heart rates spikes while sleeping

    I found it quite odd, seeing the heartrate spikes in the middle of my sleep. My HR monitor has consistently tracked fairly closely with my bloodpressure monitor. It typically is worse for me in PEM. Mind you, I only have orthostatic intolerance, and don't usually get tachy, unless deep in PEM...
  17. MastBCrazy

    PEM and pacing

    If you don't want PEM, don't push through. Don't worry, there will be many occasions when you will decide to push through, fully acknowledging the perceived price. IMHO, (and personal, objective, documented daily experience), pushing through has only made things worse - banked stamina spent...
  18. MastBCrazy

    The treatment of fatigue by non-invasive brain stimulation

    I confirm that the treatment can indeed positively impact mental fatigue. I also found that there was a sweet-spot in the treatment. While the research study continued past this point, there was improvement overall. Following a course of intense rTMS treatments as part of a research study, I...
  19. MastBCrazy

    Probiotic advice please

    Thorne FloraMend Prime! Same strains in Kyodophilus. I find the Bifidos are helpful! I take daily and supplement with weekly probiotic enemas.
  20. MastBCrazy

    Customized Nutrtional IVs - Has Anyone Benefited?

    With a practitioner that understands, it can be a great tool. I was tested for nutritional levels (blood, hair, urine), heavy metals, organic acids, etc. and the physician was trained as an immunologist, and really understood and thought about what he was doing (very rare and special- knows...
  21. MastBCrazy

    Customized Nutrtional IVs - Has Anyone Benefited?

    Yes, when I was more toward mild with moderate crashes. I had an initial round of testing. I started with Meyers, but found not much benefit. Then switched to a 'mini drip with high dose vitamin C >20g, minerals, etc', and those were wonderful and could 'safely super charge' me for a couple of...
  22. MastBCrazy

    Can anyone recommend a good wrist heart rate monitor?

    Thanks for the update @Wonko and I feel for the cognitive issues - I made my living off my brain, now I can't successfully make a grocery list.:aghhh::bang-head: I've found similar with my Polar A360. It is WAY high on estimating my calories. I always attributed it to our whacked physiology...
  23. MastBCrazy

    glyphosate toxicity cure

    Which symptoms have been alleviated for you @may2 ?
  24. MastBCrazy

    Can anyone recommend a good wrist heart rate monitor?

    Thanks @Wonko ! The manual I downloaded was different - maybe I grabbed the wrong one from the web.
  25. MastBCrazy

    Can anyone recommend a good wrist heart rate monitor?

    Thanks @Invisible Woman. Sounds like it may turn off the transmitter radio. The doubt would make me want to check it with a meter. My Polar A360 sounds similar, but doesn't have alarms for heartrate, and catches most data in activity mode, but continuous HR can also be monitored. After...
  26. MastBCrazy

    Can anyone recommend a good wrist heart rate monitor?

    @Invisible Woman or @TiredSam , can the radio be turned off on the Garmin Vivosmart HR? I looked through the owners manual, but it didn't say. This would mean the GPS, ANT+, and Bluetooth would be always on (would not be an option for me - EHS). An "Airplane Mode" was the deciding factor...
  27. MastBCrazy

    Can anyone recommend a good wrist heart rate monitor?

    A360 -No :(. And the HR monitor, has two modes - one that records events (heart rate and movement) and one mode that shows HR. So takes discipline to use, but is very informative. Also, it is tracking movement, so on my 'crash recovery' times, I can check to make sure that my day's steps are...
  28. MastBCrazy

    Can anyone recommend a good wrist heart rate monitor?

    Polar A360. I have used it completely wired. It was the only device that I could find that did this - but I can't remember this thread. The A360 has an Airplane mode. It can be worn wet/dry. Data can be uploaded to the web site via a USB cord connection. The A370 (out soon?) has improved sleep...