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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. charlie1

    High NK cells

    @Hip I don't think I was tested for HHV-6 or echovirus or CVB.. I don't have actual EBV titers (only titers given were <1:64 for Bartonell henselae). Also non reactive for CMV, borellia and other diseases. Of everything tested, I am only 'reactive' to EBV EA IgG. This is a new dr for me and...
  2. charlie1

    High NK cells

    @Hip I can use some clarification if don't mind sharing your take on this - I just got my bloodwork back showing I have low number of Natural killer cells. As far as I know, I wasn't tested for activity/function. Also I have reactivation of EBV in 3 of the 4 areas of testing. It was the EBV VCA...
  3. charlie1

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    @Hip Thanks for your help.
  4. charlie1

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    @Hip , I can have it shipped to an American postal service that's 10 min from me (I live on the American - Canadian border). Is it likely to arrive any faster if it was delivered to the USA and through a different pharmacy? ( not that i have a problem with indianpharma or goldpha, I just want...
  5. charlie1

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    @Hip Thanks so much for listing those pharmacies. Really appreciate that.
  6. charlie1

    Tips for Finding Reliable Prescription-Free Online Pharmacies

    HI. I've tried to look for a safe pharmacy to order from but scrolling through previous posts makes me feel so ill. I hate to ask someone else to do a search for me but I need help.. I need to use an on-line pharmacy that will ship ACETAZOLAMIDE (Diamox) to Canada (or the States as second...
  7. charlie1

    Thought I had POTS: turns out it was SA node dysfunction!

    Hi Sushi, did you have tachycardia or bradycardia when lying flat? My HR is 40 - hi 40s when lying down at night and doesn't get to 60 till around noon. But anytime of the day I can get POTS upon standing and / or walking which will cause PEM. Were your symptoms prior to the pacemaker at all...
  8. charlie1

    Favorite electrolyte drinks?

    For those who make their own drinks, does it matter if its the chloride vs citrate form of potassium?
  9. charlie1

    bad effects of amalgam removal

    @ ifishouldfallbehind I've been considering amalgam removal. How are you feeling now?
  10. charlie1

    Slow Transit Constipation...... no pain just no movement

    Thanks! That info is interesting. You're right, I do have trouble with headaches when ingesting foods high in tyramine, especially wine and aged cheese and smoked meats. I'm ok with mild cheeses like creamy havarti though. yay! And yes, it takes me a long time to unwind when I've been...
  11. charlie1

    Slow Transit Constipation...... no pain just no movement

    Oh boy. Thanks so much @WoolPippi for all the information but honestly, this is over my head! This thread was mentioning 5HTP and I thought maybe that could help if I was indeed low on serotonin. But I do see that rs6323 is TT for me which you say means I'm downregulated. So, I need serotonin...
  12. charlie1

    Slow Transit Constipation...... no pain just no movement

    Hello @WoolPippi , are you saying 'yes' to my question re: can this be found out on 23andMe? Or are you saying there is other testing for this? If yes to 23andMe, where exactly would I look for the MAO A /B results cuz I'm wondering if I'm low in seratonin (constipation)?...I don't fit the high...
  13. charlie1

    Slow Transit Constipation...... no pain just no movement

    @SwanRonson - . Recently, the local health store suggested I used Natural Factors powdered 'Calcium Ascorbate" (vit c -1000mg) mixed in water and I have had success with that (but I also use Mirulax daily). Thing is for a few years now I've had significant issues with GERD (reflux) so I was...
  14. charlie1

    Acetylcholine caused crash

    @MissCB : Go figure..I've been good cognitively since those 2 episodes last week (yay!) so it won't be easy to discern if it's a help in that area. But I'll be able to tell by end of next week if (1) PP affected me negatively in any way and (2) if it helps with the C .. I don't intend to take my...
  15. charlie1

    Acetylcholine caused crash

    @MissCB : In the past, I tried many things for POTS, 2 of them happened to be PP ingredients...thiamine and ALC. I didn't experience any significant changes but so many things have been tried and sometimes overlapping with other supps or meds so its difficult to say how the overall affect truly...
  16. charlie1

    Slow Transit Constipation...... no pain just no movement

    How long did you use the GPC before deciding it wasn't helpful...and at what dose? Was it a GPC-huperzine combo? I ask because I have 300 mg capsules of Alpha GPC that I'm waiting to trial. :) thx!
  17. charlie1

    Anyone got a good constipation remedy?

    How did you do with the GPC? Still taking it?
  18. charlie1

    For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

    Hi. I guess we're opposite! I could be that some of my motility issues are due to Ehlers Danlos Sydnrome as many people with that have Constipation . When I was prescribed Mestinon, I was warned it might cause diarrhea which I assume was a acetylchonie related issue. In my case Mestinon helped...
  19. charlie1

    For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

    Does anyone know the optimal amount of A-GPC to help with bowel motility? I've taken 200 mg transdermally with a protein meal...no difference. Not worse, not better...nothing. I'd like to up the doseage and will be taking by mouth but would like to know the safe limit (for constipation only) I'm...
  20. charlie1

    For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

    oh, one more thing @Lolinda - I understand you didn't experiment with other times, but assuming I'll be adding 5-HTP at the same time as the choline, there shouldn't be a need to do this before a protein meal, correct? I could do this first thing in the morning? Still clear sailing for you...
  21. charlie1

    For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

    Thanks for the explanation. Makes more sense now :) I looked at the i-Herb site. The Jarrow @ $23.00 (200mg) is a smarter choice than going through my health store for same number of 300 mg. capsules @ $58.00 ! I'll have to decrease my motility drug first so I'll probably get started late next...
  22. charlie1

    For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

    @Lolinda - A health store just got back to me and said they can get me Alpha -GPC from Douglas Labs Pharmaceutical (I like their stuff :)) for $60.00 Can...60 capsules of 250mg each. I will re-read your detailed post on what dosage to start with...transdermal I believe you (cuz this is over...
  23. charlie1

    For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

    @sb4 Hi there :) Not exactly although yes, it was through mental technique. Not that I think your method can't be helpful but to answer your question, the DNRS training was more specific ie. we would think of a happy memory and relive it as in the now. But absolutely we had to add in...
  24. charlie1

    For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

    @Lolinda , sorry the Gutpa didn't work for you :(. @sb4 - you were going to begin taking the A-GPC supplements transdermally. How's it going?
  25. charlie1

    For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

    We were taught that thinking so much about our illness (or other problem) creates unique negative neural pathways that are unconsciously associated with the illness. Examples may be fear, pain, frustration, hopelessness etc. that might trigger the pathway. So, if we don't allow ourselves to...
  26. charlie1

    For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

    Hi. Sorry for the delay in responding...I was out of town. @ Lollinda - That made me smile! -The neurologist never told about a 'type' I had, only that both the tilt table results and my significant dysautonomia symptoms confirmed I had POTS. That particular dysautonomia clinic did not do...
  27. charlie1

    For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

    btw, I'd love to drink tea but no matter what type I try (many!), I get a headache. I've been told its probably the tannins since this also happens when I drink red wine. :cautious:
  28. charlie1

    For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

    Hi Lolinda :) No, I never said that. I only said that LOW stomach acid, according to Chris and others, can apparently cause GERD. I, like you, believe GERD is due to the LES not functioning properly. Many EDS's have issues with their LES b/c of the cartilage/soft tissue laxity. And yes, stomach...
  29. charlie1

    For POTS or for digestion: Instead of Parasym Plus, increase acetylcholine at low cost & naturally

    @sb4 There is more on this in another thread titled: Anyone tried Limbic Retraining- Dynamic Neural Retraining System