• 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.

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Search results

  1. X

    Spiritual quotes/poems/etc for the fatigued.

    Psalm 146:5 Happy is he that hath the God of Jacob for his help, whose hope is in the Lord his God. I just found this tonight. tc ... x
  2. X

    Spiritual quotes/poems/etc for the fatigued.

    Thanks. Worth repeating. Tc ... x
  3. X

    Emotional releases while in crash?

    Becoming a Christian has really helped me with this. Now when I'm feeling poorly, I turn to God for comfort and healing. I know that as long as I'm sincere, He listens to me. I know He won't always answer my prayers but I feel better talking to Him. I don't ask for much because I'm new to...
  4. X

    God Whispers ...

    Thanks for posting this. ☺ Tc ... x
  5. X

    how much potassium and salt to take with florinef

    Hi @ahimsa Thanks for replying. No need to worry about me taking something the wrong way. I try not to infer anything other than info from posts on a health forum. Good to hear you're seeing progress with these meds. There's always so much trial and error involved. I may try Midrodine later...
  6. X

    Big Florinef Doses Needed Anyone?

    All good google searches lead back to PR. Lol. I'm noticing an increase in energy from Florinef. It looks like some others here are too. I'm at .025 mg now. I just started taking this on Dec 1st. Tx ... x
  7. X

    Trying Florinef

    I'm still playing with this. My bp has been low throughout most of this illness. So since 1990 ... At times medical professionals couldn't find it and had to keep trying. Yesterday morning upon waking my bp hr monitor showed my bp 168 / 100 so I skipped taking this completely. I ate breakfast...
  8. X

    Chronic fatigue syndrome and co-morbid and consequent conditions...

    Most of the time my hypoglycemia, oi, pem and cognitive problems were chalked up to anxiety or depression. Even my ataxia, falling into walls, etc was blamed on me by several people in the health field no less. Doh ! I was told to watch where I was walking. I was embarrassed by my behavior...
  9. X

    how much potassium and salt to take with florinef

    Thanks for replying @ahimsa and @Ema . I actually meant to say that I appear to be the last pwc to start taking florinef. Doh ! This high bp is making me feel weird. I only remember seeing mine in the 140 range when I was taking guafenasin daily 10 ish years ago. I'm exhausted now from...
  10. X

    Structural abnormalities in the brains of POTS patients-left insula

    I only feel anxious when I'm upright. Esp after standing for 10 plus minutes. By then I'm having a petite mal, sob, overall weakness and tachycardia. At that point I start frantically looking for a way to lean or sit down. I'm sure people who are unfamiliar with oi don't understand why I...
  11. X

    Do antibiotics affect blood tests?

    Lol. It was the first link on the google search I did. It was 4 am here so that was as far as I got but there were plenty of good links on google search for your question. Maybe this will work ... www.kantrowitz.com/cancerpoints/tumormarkerfalsepositives.html Granted this article focused on...
  12. X

    Structural abnormalities in the brains of POTS patients-left insula

    Great point. How often do doctors look for OI ? How often are mild allergic reactions overlooked even ?
  13. X

    All symptoms related somehow

    Hugs. I completely understand your frustration. I hope you're not coming down with something. I have similar symptoms today from cleaning my bathroom yesterday. I do this every time. I can't handle cleaning chemicals even with gloves. A mask might've helped tho. Fwiw, if you just want to treat...
  14. X

    Experience with coffee enema's?? What to watch out for??

    I tried these multiple times but never felt any better. In retrospect tho, the symptoms I was trying to resolve are from oi / oh / pots. I didn't know it back then.
  15. X

    All symptoms related somehow

    Have you tried the elimination diet ? If not, I'd suggest trying a paleo type diet. It's just organic meats, fruits and veggies. Raw or cooked. Dr Terry Wahls has some excellent info on how diet helped her ms. Tc .. x
  16. X

    Do antibiotics affect blood tests?

    Great question. I don't know the answer but google had multiple credible links. I posted it just like you did. They appear to effect several labs. I'm still reading the kantrowitz article. Fascinating.
  17. X

    how much potassium and salt to take with florinef

    Hmmmmmm. I appear to be the last pwc taking florinef. Great info. I'll look for slow release potassium. Eating citrus and bananas is causing too many blood glucose reactions. Tx ... x Correction. I appear to be the last pwc to start taking florinef.
  18. X

    Chronic fatigue syndrome and co-morbid and consequent conditions...

    It may also reflect on these patients knowing that their doctors / the people asking completely understand me/cfs so they felt comfortable saying how they really feel. So often we have to hide our true feelings about having this illness. Or at least I have.
  19. X

    Chronic fatigue syndrome and co-morbid and consequent conditions...

    me too. The last time I took flouroquinolones this was an obvious side effect along with frozen shoulders and popping knee caps. My me/cfs became full blown after 3 successive rounds of antibiotics in 1990. These were taken for non stop green mucous in my lungs. Tmi. Lol. Based on my last...
  20. X

    Empty gelatin capsules.

    Good to know. I'd forgotten how the size info worked. I was still thinking it might be cheaper just to buy something and throw away the contents instead of paying for shipping.
  21. X

    Chronic fatigue syndrome and co-morbid and consequent conditions...

    "Nearly 60% of the sample reported a mental illness." Seriously ? When are they going to figure out that we'd feel much better mentally, physically and emotionally if they'd make some real progress in the me/cfs arena. Those of us who became ill before the internet were completely lost.
  22. X

    Empty gelatin capsules.

    Hi @maryb I've done this before too. Those big ones were too big to swallow. Luckily my local health food store carried these in different sizes. Once when they were out of stock I just dumped out the contents of an old supplement I wasn't taking anymore. Is that an option ? Or maybe just...
  23. X

    Australia: Stella Young, disability activist, dead at 32

    We wouldn't need these masks if we were diagnosed with a socially acceptable disease.
  24. X

    Australia: Stella Young, disability activist, dead at 32

    What an interesting speaker. I enjoyed her Ted talk on being an inspiration. Tx .. x
  25. X

    Gut Healing Webinar Available 'til Dec 10

    This looks promising except for bypassing labs. I learned several things from labs that I couldn't have learned otherwise. Like I'm allergic to egg whites but if I have any reaction to these I've never seen it. I stopped eating these because of the test tho. I've found that some, most?, doctors...
  26. X

    Trying Florinef

    My bp is 145/85 now before taking florinef. Yikes. It's normally 90-100/70 if I continuously salt load. Lower if I don't salt load. Hr still in 70s so that's good. I'm not going to take florinef today until it gets back into at least the 120 range. But hopefully I can take it again by this...
  27. X

    Can you run ? Move quickly ?

    I finally got a peek at this study. Thanks. This study just documented the problem and recommended more research. I started having more problems with this about 2 weeks ago. I've been walking about 20-30 minutes every day or at least every 3 days, pem permitting, for about 10 months now and...
  28. X

    FMT promise for Autoimmune and Neurologic Disorders

    Tx. The link didn't work but I googled it. I'm not sure how our bodies work but I think I'd need my donor poop to be free of gluten, casein, soy, dyes, etc. I saw someone, Carlos ?, mention finding casein free poop. It just hit me. Is Metametrix or any other cdsa company involved in testing...