• 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. CedarHome

    It's (almost) my (illness) birthday!

    So, five years ago in February, I got sick and never really got better. Ever since I have dreaded February. I wanted SO BADLY to just stumble onto the THING that would flip the switch BACK and make all this go away. Yep, there is not that thing, not that I haven't tried a zillion of them...
  2. CedarHome

    Comment by 'CedarHome' in 'Dietary morass'

    :lol::lol::lol:
  3. CedarHome

    Comment by 'CedarHome' in 'Dietary morass'

    Interesting re: B2 I will have to look into that. Have an appointment coming up with nutritionist so I can ask. Sleep is very disrupted here also. Such a drag. Yes the whole point of the sheep cheese is that it is FRESH not aged... they only make it part of the year. At some point I might...
  4. CedarHome

    Comment by 'CedarHome' in 'Dietary morass'

    I get it about the cutting more food out. I went into a multi-month mini tantrum about it. The low oxalate diet is about the most depressing of the various "healing" eating protocols I've seen. Meat and radishes! Meat and turnips! For a treat, how about some peeled, boiled carrots?! :sluggish...
  5. CedarHome

    Dietary morass

    So last year I had enough energy to try this whole AUTOIMMUNE PROTOCOL (AIP) eating plan. Spring comes, I talk to a nutritionist and it appears I might have an oxalate issue. Spend some time reading up on that and it is not pretty. But, I DO have mystery kidney stones and I do have the genetic...
  6. CedarHome

    Comment by 'CedarHome' in 'Breakfast'

    So glad you got a special breakfast delivered!! what a treat. And thanks for posting about your regular breakfast. I'm impressed that you've found a way to get a decent breakfast given energy constraints.
  7. CedarHome

    Anyone treating oxalates /on a low oxalate diet?

    I just want to say how much I love Phoenix Rising. The peer support group for low oxalates is on fb.... the moderators tell you don't ask questions, there's only 4 of us and 33,000 of you, and anyway somebody probably already asked your question. I so appreciate the folks who set this site up...
  8. CedarHome

    Comment by 'CedarHome' in '1 Week on Oura'

    Wait a little bit, I bet there will be more used ones. My athlete neighbor for example bought one thinking it was more of a heart rate monitor.
  9. CedarHome

    Anyone treating oxalates /on a low oxalate diet?

    Also my NP just said WAIT don't go low ox yet we want to get the baseline testing done at Regular Ox levels! I am ordered to eat more chocolate. :D;)
  10. CedarHome

    Anyone treating oxalates /on a low oxalate diet?

    :rofl::rofl::rofl: Yes that is my preferred version of the low ox route also
  11. CedarHome

    Buying antibiotics for Lyme online

    :bang-head: I didn't know that. Yay antibiotics!
  12. CedarHome

    Anyone treating oxalates /on a low oxalate diet?

    Yes I have just joined your club (or actually maybe I did years ago but only found out about it now.) I'm trying the fb group also. I've very much in the gathering info phase. The big aha for me so far is that maybe this (genetic variants mean I have difficulty making the enzyme that breaks...
  13. CedarHome

    What is an undermethylated depressive supposed to eat?

    This post is a little old so hopefully you have gotten some help but if not... Here's the guidance I just got from a dietician on electrolytes for oxalate dumping: "When oxalate detoxifying/dumping: Take the following 2-3x/day: Take 15 minutes away from meals. 1/4 cup lemon or lime...
  14. CedarHome

    Comment by 'CedarHome' in '1 Week on Oura'

    I'm not using android so can't speak to that. and my fingers are plenty fat enough :rofl:..... good luck!
  15. CedarHome

    Comment by 'CedarHome' in 'Surprise! MCAS'

    Hi there, when I was first diagnosed, Dr said to take 3 over the counter: Ranitidine (also an acid blocker and since taken off the market); Loratadine; and cetirizine. Also to take a thing called "Neuroprotek" sold here https://algonot.com/product/neuroprotek/ (very expensive as I've mentioned...
  16. CedarHome

    Methylation roadblock - shallow breathing - please help

    This is extremely helpful, thank you!!
  17. CedarHome

    1 Week on Oura

    Back in March I was determined to finally track activity and attempt to stay within energy envelope for a change. WHAT A NOVEL IDEA.:bang-head: I ordered a) simplest possible Fitbit b) Corsense HRV monitor (fingertip) The fitbit was fun in a gamey kind of way- - it was constantly reminding...
  18. CedarHome

    Comment by 'CedarHome' in 'Surprise! MCAS'

    I was just reading a website about CAUSES OF MOLD (and environmental sensitivity). Basically... Do you live in a HOUSE? Then you're surrounded.
  19. CedarHome

    Andrew Cutler Chelation - General Thoughts

    Okay I think I have someone who wants it.
  20. CedarHome

    Andrew Cutler Chelation - General Thoughts

    A couple years ago I ordered Cutler's book (never used it) and now it's out of print. If anyone needs or wants to go through that protocol rather than working with a dr. and would like the book, please message me and I'll send it to you. I don't know if this is the right place to post this.
  21. CedarHome

    Comment by 'CedarHome' in 'HRV & activity device kickoff'

    Thanks, I will have to try that!!
  22. CedarHome

    Mast cell activation syndrome is not what it seems

    I just started Neuroprotek again.... when it was originally prescribed the dr. said 6 caps a day. 1 cap= 100 mg luetolin 70 mg quercetin 30 mg rutin I also have some powdered quercetin which is 500 mg/ per 1/4 tsp. I wonder if you can get the same effect as Neuroprotek by taking the...
  23. CedarHome

    Surprise! MCAS

    Short version: I started antihistamines again and feel better DUH! Months of misery provoked by self-inflicted med changes are always the most fun.:bang-head: :xpem::whistle: Story version, and sorry for all the little emojis, I'm feeling exuberant today and they break up the text: So! A...
  24. CedarHome

    PEM post-exertional malaise resolved. Steps: low-carb paleo, eliminate offending foods, breathing, transdermal B3, the best: CARNITINE

    Good to know, thanks!
  25. CedarHome

    Mast cell activation syndrome is not what it seems

    Neuroprotek is so expensive! I tried it for awhile but never noticed a difference. But that was a while ago and I've really cleaned up my diet so maybe I might notice if I tried it now. Quercetin is less expensive so I like to imagine that it works :lol:
  26. CedarHome

    PEM post-exertional malaise resolved. Steps: low-carb paleo, eliminate offending foods, breathing, transdermal B3, the best: CARNITINE

    Hi there @Learner1! Maybe this belongs to another thread but.... Do you have any recommendations for those of us (who skipped out on college chemistry much less biochemistry) and want to get started with nutrigenomics? I heard a podcast yesterday and it made me think "she is talking about ME"...
  27. CedarHome

    Comment by 'CedarHome' in 'HRV & activity device kickoff'

    I am sending the Corsense back because I realized... Price of fitbit+ Corsense just about = Oura. Which would mean 1 device to deal with instead of two and I've heard from a couple people now who really love their Oura. Since my issue right now is staying within energy envelope more than...
  28. CedarHome

    Comment by 'CedarHome' in 'HRV & activity device kickoff'

    the HRV apps I've tried all seem to have breath pacers... I would like to try this but without looking at a screen so much, for me the screen keeps me up all by itself. Good idea though.
  29. CedarHome

    Comment by 'CedarHome' in 'Post Moderna #1 update and working, working'

    Ugh, that sounds awful... hope it's all cleared up now.
  30. CedarHome

    Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

    Yes... I've been shocked by how much of the day the fitbit thinks I'm "fat burning" while I think I'm.... trying to buy vegetables or cook dinner or do anything other than lie on the couch. :sluggish: The tricky part seems to be figuring out what my own comfortable vs. challenging heart rate...