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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. November Girl

    Is there a summary or list of brain effects?

    That is a great symptom list! I will take these documents, but this isn't quite what I meant. I'm looking for how the brain itself is malfunctioning, nor the resulting symptoms. Since my CNS apnea doesn't respond to CPAP or BiPap, there is something else going on. I've amended the original...
  2. November Girl

    Did anyone else have worse apnea on BiPap than CPAP?

    I was recently switched due to CNS apnea. Unfortunately my total apnea went from 20-30 per hour to 51. I'm now back on my old CPAP, and waiting on an appointment with a sleep neurologist.
  3. November Girl

    Is there a summary or list of brain effects?

    I'll be seeing a sleep neurologist in a day or two. I'd love to take him some information on the ME/CFS brain. I'm looking for what is wrong with the brain itself, not the symptoms related to the brain. Any suggestions?
  4. November Girl

    Potassium supplements vs Gookinaid/homebrew

    Gookinaid or Cheney's homebrew contain sodium, magnesium and potassium in water. Instructions are to drink throughout the day. Is this any better than taking supplements once or twice a day, and plenty of water?
  5. November Girl

    Should I split my B12 intake into separate doses throughout the day

    I have recently switched from a liquid Form of liposomal B12. I now take liposomal B12 via an oral spray. 3 sprays make up what day's dose. Would there be any benefit to taking these throughout the day instead of all at once?
  6. November Girl

    Chronic Kidney Disease and ME/CFS

    I just checked my labs. I have GFR numbers for the last 2.5 years, with a total of 5 tests. I had a GFR of 50 at the beginning. It continued to increase to a high of 64 in January 2016. The next test was May of 2017. I showed a GFR of 50. Over the years, I've taken a lot of supplements...
  7. November Girl

    Spiritual quotes/poems/etc for the fatigued.

    I just found this thread again today. Thank you all for the wonderful posts.
  8. November Girl

    brands of liposomal B12

    Dr. Rey made a point of specifying the liposomal form. I ordered mine along with some VitC from http://www.nutrienttree.com/
  9. November Girl

    brands of liposomal B12

    Dr. Rey has asked me to start taking liposomal B12. Can anyone recommend some good brands? It looks like I'll have to mail order it.
  10. November Girl

    why the genetic testing?

    My doctor just ordered this, and I don't remember why. I'll be sending it to 23andme. What can it show?
  11. November Girl

    ratio of magnesium to potassium

    Is there an ideal balance between these two? I've taken extra magnesium the past two days due to constipation. I've also had a lot of fluttering and palpitations. I think my usual supplement regime may be a bit high on the magnesium. I've found that I don't do well taking just one of these. I...
  12. November Girl

    Easy Vegetable Soup

    With the POTS issues, I usually sit down to chop vegetables. I used to do so at the kitchen table, but now have a barstool which lets me sit at the counter, within reach of the fridge. ( I have POTs so cannot stand for too long),
  13. November Girl

    NOVA - Davie Location hotels?

    Thanks SOC. Right now I'm looking at the hotels covered by my miles plan. I don't know if my insurance will cover much of my visit. I'm still waiting for a pre-authorization and not sure if I'll get it.
  14. November Girl

    NOVA - Davie Location hotels?

    SOC, Is this the address of the Hilton Garden Inn where you're staying? I don't know the area so the Dania Beach address has me wondering. 180 SW 18th Ave, Dania Beach, FL 33004 Is there still a list somewhere on NOVA's site of hotels near the NOVA office? I can't find it.
  15. November Girl

    Does anyone know why Midrin is so expensive right now?

    Actually I think it does. I've found that only one company in the world makes it right now, so they can charge what they like. I suspect that many companies stopped making this because most formularies wouldn't cover it.
  16. November Girl

    Does anyone know why Midrin is so expensive right now?

    I'm actually at a point where Midrin helps my headaches, so I decided to get a new script. Even with a coupon it would have been $191 for 45 pills. Ouch! I was expecting maybe $40. I may turn to an online pharmacy.
  17. November Girl

    Weak, trembly feeling, with twitches and shakes

    ktred Have you seen a gastroenterologist about this? There is a lot that can be done with diet; fermented foods, bone broth, etc. I would definitely eliminate any gluten if it were me.
  18. November Girl

    Severe altered consciousness

    left temporal lobe was where mine initially showed up. In my case a major motor vehicle accident either caused the seizure disorder, or accelerated to the point that I had absence seizures. A seizure is an electrical storm in your brain. It doesn't always produce obvious symptoms, though...
  19. November Girl

    Severe altered consciousness

    I apologize if you've already mentioned this. Have you been evaluated for a seizure disorder? Mine was under-treated for 20 years. It masked the absence seizures, but my brain kept having seizures that I didn't recognize. It's amazing how much my brain has healed in the few years that the...
  20. November Girl

    Weak, trembly feeling, with twitches and shakes

    Thanks Kati. I do have an appointment in a few days. I'm curious is this is something common to CFS patients.
  21. November Girl

    Weak, trembly feeling, with twitches and shakes

    No idea if this is an autonomic issue or not. My first several years with CFS I always felt weak, insubstantial, and trembly on the inside. It feels the way Star Trek transporters shows a body in the first seconds - like tiny bits and pieces missing all over. I think the high levels of...
  22. November Girl

    Yikes! Which Rey/Klimas office tomorrow?

    I just realized I misspelled a name. Kestia is the woman at the front desk at the Davie location.
  23. November Girl

    I am booked in to see Prof. de Meirleir in January

    There is a blogger whose son has had success with long-term antibiotic treatment for lyme. She and her two sons all have CFS. http://livewithcfs.blogspot.com/2014/06/quote-it-saturday-621.html
  24. November Girl

    Infection = confusion, low hr, sob, worse OI, fatigue ?

    I may be totally wrong, but I suspect that integrative doctors have a far more nuanced knowledge of how the body works.
  25. November Girl

    Infection = confusion, low hr, sob, worse OI, fatigue ?

    I've found that an infection makes about all of my symptoms worse, certainly mental acuity and energy. My thought has been that our bodies are functioning as well as they can with our current situation. Adding anything else on top of this is more than they can handle.
  26. November Girl

    Infection = confusion, low hr, sob, worse OI, fatigue ?

    I'm 57, but have had CFS since age 19. I've been slowly improving for the past 10 years; still pretty sick, but no longer nearly bedridden. A 63-year old friend recently commented that it's nice to hear of someone's health getting better, as opposed to most people in our age group!