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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. andybonse

    Florinef stopped working?

    Hey, Has anyone been on Florinef for so long and it stopped working? I've been on it 3-4 years and it's gradually got down to the point where my symptoms are back to how they used to be. My sodium was 144, potassium 3.1 and aldosterone 108 when it was working, now sodium is 139, potassium 4.4...
  2. andybonse

    Celltrend Results - I am very happy

    @Gingergrrl I've just remembered something actually, With the Anti AT1R Antibodies being high and positive, a few years ago I did a Angiotensin ii blood test. It was 8 and the range is 20-40 so that's really low. So from what I've read I think the AT1R AB's have a agonistic effect activating...
  3. andybonse

    Celltrend Results - I am very happy

    No and no, did it all privately, just paid someone to take my blood and centrifuge it then sent it off. @Gingergrrl thanks :), I am not too sure how much the A-1 receptor results are as they are only 4.2 points above what is classed as abnormal, but I am going to re-do all the tests in 6...
  4. andybonse

    Celltrend Results - I am very happy

    Hey all, Just got my celltrend blood test results back and I am positive for 6 out of 11 tests. Anti AT1R Antibodies <10.0 U/ml: negative 10.0 – 17.0 U/ml: at risk > 17.0 U/ml: positive 59.4 (positive) Anti ETAR Antibodies <10.0 U/ml: negative 10.0 – 17.0 U/ml: at risk > 17.0 U/ml: positive...
  5. andybonse

    CELLTREND Antibodies - help

    I also put a home made ice pack in in case lol
  6. andybonse

    CELLTREND Antibodies - help

    Yeah it had to be sterile, got hold of one! I got 24 hour delivery and its going over night so will be cooler so hope its all good.
  7. andybonse

    CELLTREND Antibodies - help

    Hi, I have POTS, EDS and CFS(milder than a lot of people but the fatigue is bad) I am looking to send my blood to Celltrend In Germany for all the testing they do for POTS etc. Can someone tell me, who's done this, do you need to have the serum tube, where the centrifuged blood goes to be...
  8. andybonse

    4-5 weeks of florinf

    Thanks SOC, sometimes ill wake up not bad stand up and its clear and not dizzy etc, then slowly over a hour or two my head will feel horrible, nausea and have to lay down its horrible. Hoping higher dose florinef and more salt will do the trick! Its horrible being 22 and having no life :/
  9. andybonse

    4-5 weeks of florinf

    Thanks, I drink powerades and am going to buy some sea salt and nunn tablets also. By 0.25mg do you mean 250mcg? I believe I will be one that needs more and have had no side effects from .1mg so am pretty happy with that at least I can tolerate something touch wood lol. Yeah I get dehydrated...
  10. andybonse

    4-5 weeks of florinf

    Hi All, I started on florinef about 4-5 weeks ago, quater of a pill and each week had postaiium sodium etc tested and moved up a quarter. I got to .1mg 4 days ago, now I have not noticed any change in BP or HR supine or standing, however I have had a lot better days and more clarity in my head...
  11. andybonse

    Florinef, Blood Pressure and POTS

    I actually had some blood tests: Renin: 11.4 (2.64-27.7) ng/l Aldosterone: 161 (111-860) pmol/l Angiotensin ii 8 (20-40) ng/l Angiotensin ii very low and aldosterone low normal but low still for being upright.
  12. andybonse

    Florinef, Blood Pressure and POTS

    Hi all, Please can you tell me what your Blood pressure was before and with florinef? I am starting it tomorrow for POTS and Fatigue, my resting BP is usually 110/49-124/70, also if I move position it will jump up a bit then come back down, I was told Florinef could stop the jumps as the...