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    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. Mary

    Bromelain+NAC are really helpful to me

    That's really interesting @ilivewithcfs - I had assumed you had Long Covid because you had mentioned LC treatment protocol. Now I really want to give this a try! :nerd:
  2. Mary

    Managing Potassium Deficiency - Share your experience

    @L'engle - since curcumin and chaga make you feel better, if it turns out they contribute to potassium loss, why not just supplement with potassium? I've been taking a potassium (gluconate) supplement since 2010 and it's worth it to me. It's enabled me to keep taking methylfolate which is very...
  3. Mary

    Bromelain+NAC are really helpful to me

    @ilivewithcfs - thank you for posting this! I'm so glad the bromelain and NAC are helpful for you with LC symptoms. I've taken NAC for years, because it's a precursor to glutathione and I'm sure does other things, but have never felt any different while taking it. But I never combined it with...
  4. Mary

    Possible legal issues related to debt and disability

    I'm afraid I don't know the answer to this. You might try contacting NFCC - National Foundation for Credit Counseling - and see if they can help. I read that their services are low or no cost. https://www.nfcc.org/ and someone on Reddit had a good experience with them. At least I'm sure they...
  5. Mary

    Possible legal issues related to debt and disability

    @velcrowings - I agree with the others to contact your creditors and explain your situation. I don't think you need to worry about getting summoned to go to court. I think that would only happen if you got sued by these companies in which case you'd get served with papers etc. and that's a...
  6. Mary

    Kaiser info, not for treatment but for backup basic, in case I get cancer etc

    That really sounds lovely, especially the whales! I'm really glad you got to see them! Years ago I went on a whale watching trip to the Channel Islands (out of Oxnard) only we saw no whales. My sons were 4 or 5 then, and both got sick as dogs on the way over too - I felt so bad, like I was...
  7. Mary

    Kaiser info, not for treatment but for backup basic, in case I get cancer etc

    Medicare PPO is a Medicare Advantage plan. https://www.medicare.gov/Pubs/pdf/12026-Understanding-Medicare-Advantage-Plans.pdf What "supplemental insurance" do you have with your PPO? There are no Medicare supplemental plans for PPOs or Medicare Advantage plans. I really urge you to work...
  8. Mary

    Dr DAvid Tuller: In England, Conflicts Between Families and Hospitals Threaten the Lives of Young Women with ME

    @Countrygirl - do you know why it always seems to be young women who are treated so badly by the health care system - what about young men? I know more women than men have ME/CFS but even so you would think there would be a young man once in awhile subject to the same abuse . . .
  9. Mary

    Metabolic rescue of α-synuclein-induced neurodegeneration through propionate supplementation and intestine-neuron signaling in C. elegans (Wang; 2/24)

    More Parkinson's disease research: https://www.msn.com/en-us/health/other/biologists-discover-propionate-supplementation-as-a-potential-treatment-for-parkinson-s-disease/ar-BB1k9T3J?ocid=msedgdhp&pc=HCTS&cvid=a5b5a744217d475288cc3f10cec544c5&ei=98...
  10. Mary

    Safety and efficacy of fecal microbiota transplantation in patients with mild to moderate Parkinson’s disease (Bruggeman; March 2024)

    https://www.msn.com/en-us/health/medical/belgian-breakthrough-stool-transplant-shows-promise-for-improving-symptoms-of-parkinson-s-disease/ar-BB1ldlbe?ocid=msedgdhp&pc=HCTS&cvid=a5b5a744217d475288cc3f10cec544c5&ei=10...
  11. Mary

    KSTP News Minneapolis: 'Minnesota’s first ME/CFS doctor on a mission to expand care to ‘everybody who has the disease’’

    I went to Ruby Tam's clinic's website, which says this - it's incredible - free health care for uninsured and under-insured persons with ME/CFS and LC in 10 DIFFERENT STATES! See: Dr. Ruby Tam taught herself about ME/CFS after she had an ME/CFS patient, and realized she had never been taught...
  12. Mary

    Daughter's recovery details

    @ruben - @Josui posted a link to a video showing Perrin techniques home exercises featuring an osteopath named Alan Rastelli. He has a Facebook page, though it hasn't been updated since 2017. His FB page mentions thewowclinic.com (osteopathic clinic) in Westbourne (all I know is that is...
  13. Mary

    How to deal with low folate?

    Sorry @jason30 , but I don't know why this is. You might be on the right track above re aldosterone. You might do a separate thread about this or do a search about increased urination.
  14. Mary

    Is electro-magnetic field (EMF) hypersensitivity a real thing?

    Thanks for the recommendation @Wayne - unfortunately this device is $835! If I were still having nightmare sleep problems, though, I might consider it, but for the time being at least I am sleeping not badly overall (afraid to say it, I might jinx myself!) I don't want to derail this thread...
  15. Mary

    What has helped you with sleep/insomnia - post links

    I've been sleeping pretty well for 5 or 6 weeks now (!) Hard for me to believe, but I don't take it for granted. Here's what I'm doing right now that apparently is working: (1) cut out calcium supplement (2) Resona Vibe device - used several times during the day. I've been using the...
  16. Mary

    Ketosis and constantly activated Sympathetic Nervous System

    this is just sad! Have you ever had decent guacamole? I can eat it by the spoonful!
  17. Mary

    Ketosis and constantly activated Sympathetic Nervous System

    Would not want that! :eek: Actually the bigger effect I've had is my PEM duration being cut by more than half. The energy boost was mild. I don't take them after 2:00 p.m. I have read that BCAAs can cause insomnia if taken late in the day. I hope you're able to get your issues with keto...
  18. Mary

    Ketosis and constantly activated Sympathetic Nervous System

    @sb4 - I had trouble with doing keto and had to stop it. I think my situation is different than yours though perhaps similar in one way, though I really don't know! What happened to me was after a few days of doing keto with my carbs drastically reduced from before, I started crashing easier...
  19. Mary

    NK cell booster Siberian ginseng working well for anxiety and depression. NK cells fight cytomegalovirus — linked to various mental health symptoms

    I've had good results with this product (Eleuthero Root (Wu Jian Shen) Siberian Ginseng) from Modern Herb Shop on-line - https://www.modernherbshop.com/For_Adrenal_and_Endocrine_System_Health_p/eleutheroroottablets.htm the recommended dose is 3 to 4 tablets, twice a day. I found that 2 tablets...
  20. Mary

    Kaiser info, not for treatment but for backup basic, in case I get cancer etc

    @Mouse girl - how did you end up with $17,000 in medical bills if you had almost no care? Adding up your monthly Medicare premium and the monthly cost of your supplemental plan and drug plan should not be even close to $17,000. How much is your supplemental plan? Kaiser is a Medicare...
  21. Mary

    Did treating sibo have any effect on your ME

    Betaine HCL with pepsin worked very well for me for low stomach acid. Many years ago I often felt like food would just sit in my stomach, especially after a heavy meal. I'd feel full and uncomfortable and feel the same way the next day. Eventually discovered I had low stomach acid and when I...
  22. Mary

    Complete Symptom Relief and CFS Remission Since Starting Nitric Oxide Supplement

    @Hope_eternal - I've had good results with branched chain amino acids (leucine, isoleucine and valine). They've helped my energy some and also shortened the duration of my PEM crashes, from 2 - 3 days down to 1. Several people here on PR have been helped by them. I was alerted to BCAAs when...
  23. Mary

    Insomnia from valacyclovir

    Update: I slept last night, was able to go back to sleep pretty quickly middle of the night. Also, I have more energy today. Yesterday morning I was quite tired when I work up and never got much energy all day, and today is the opposite - I have some energy, feel better than I have in awhile...
  24. Mary

    Insomnia from valacyclovir

    @ilivewithcfs - I'm really sorry that you can't tolerate the one thing which has been helping you. It's beyond unfair. I don't know if your plan to take valacyclovir for as long as you can tolerate it and then take a break, and then restart, etc. is a good one or not. Do you think your...
  25. Mary

    How to deal with crashing after doing lightning process, Mickel therapy etc?

    @LINE - what sort of elevation pillow is it? Does it just elevate your legs? And, how is it helpful for you? What does it do for you? For all I know it’s quite possible that elevating our legs is a good thing! One of my sisters got me using an ottoman or otherwise elevating my legs while...
  26. Mary

    How to deal with crashing after doing lightning process, Mickel therapy etc?

    @LINE - i’m afraid I don’t know the answer to that. A naturopath told me about this.(as described in the other thread.) and someone. mentioned that it was I think a yoga pose or similar to one. actually someone I know lays on the floor and just puts their legs up against the wall without a...
  27. Mary

    How to deal with crashing after doing lightning process, Mickel therapy etc?

    @Cfs2019 - lightning process etc. are not proven treatments for ME/CFS. I tried Ashok Gupta's protocol back in 2007 and all it did was make me crash. If something makes you crash, you need to stop doing it and learn to pace yourself - what you can safely do without crashing. These...
  28. Mary

    Brain functional connectivity in people with ME/CFS

    @Wayne , have you tried this? And if so, did you see any results?
  29. Mary

    B-Vitamins Saving My Butt (what to do?)

    @grape_scotch - I don't think it's that simple. What do you mean, specifically, by electrolytes? How much of what are you taking? e.g., I have to take 1000 mg of potassium a day, in divided doses to keep my potassium up. I also have to take phosphorous almost daily. But I don't take...
  30. Mary

    Extremely chapped lips

    @Strawberry - I've had chapped lips and sores in the corner of my mouth from B vitamins, I think a deficiency of a particular one, only I'm not sure which one. I take several of the B's individually and was doing well for quite awhile on them but around last November or so my lips were getting...