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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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Search results

  1. L

    A rare deficiency cfs/fm patients should consider

    The strange thing is that eg Wiki says that one of the options when having AMPD1 is to take D-Ribose (a mono-sacharide) that is one of the key components for making ATP.... On the other hand I read some reviews from CFS sufferers saying they notice a difference in energy . Off course these...
  2. L

    A rare deficiency cfs/fm patients should consider

    Another that I am Hetero for , and that seems to explain a lot. AMPD1. AMPD rs17602729 Alleles CT +- Hetero Adenosine monophosphate deaminase deficiency type 1. ( myoadenylate deaminase deficiency (MADD)) AMP deaminase is an enzyme that converts adenosine monophosphate (AMP) to inosine...
  3. L

    Hypophosphatemia and osteoporose, 23Andmetest.

    Ooeps , sorry, switched magenta and cyan :-) . But keep feeling more and more stupid..... Still don't get it... So I go to https://www.ncbi.nlm.nih.gov/projects/SNP/snp_ref.cgi?rs=rs7955866 Scroll down about 1 page to a "GeneView" heading written in darkblue in a lightblue horizontal bar...
  4. L

    Hypophosphatemia and osteoporose, 23Andmetest.

    Sorry, but you mentioned this "hover over the cyan box in the map view" in older other post, and I have been trying to find out what you mean, but don't get it. So when I start from this place: https://www.ncbi.nlm.nih.gov/projects/SNP/snp_ref.cgi?rs=rs7955866 Do you mean the Cyan box with the...
  5. L

    Hypophosphatemia and osteoporose, 23Andmetest.

    Yes, a lot of test have been done , like 24h/pee phosphate excretion , PTH , 1,25Vit-D, FGF23, hyperproteunia, monoclonal band ( that can give false phosphate readings ) ... Nor the Endo , nor the Nefro could find a cause. Even when I take Phosphorus supplement, the blood reading is below...
  6. L

    Hypophosphatemia and osteoporose, 23Andmetest.

    Hy , As title already says , I (also ) have Hypophosphatemia and osteoporose. (Osteoporose -2,7 while I am 49y men... = really not normal ) ( But probably due to chronic hypophosphatemia.... ) In short in Hospitals they have tested all the regular ( read simple stuff) like PTH, Vit-D , etc...
  7. L

    anyone know what these neurotransmitter test results mean (urine test)

    But most surprising of all !!!!!!!!! I am very surprised to see tests of Serotonin , and GABA ... Don't ask any test like that here. Besides they are not available here, I am also surprised they exist elsewhere, and have some doubts about them. If they really could test your Serotonin, they...
  8. L

    anyone know what these neurotransmitter test results mean (urine test)

    It's indeed a mucus breaking down, old remedy, I dont think it's prescribed a lot anymore. But there are claims it improves Gluthatione ( Main Antioxidant ) production by providing a Cysteine source. Also claimed to be a methyl donor, and thus acting on conversion of homocysteine. Aiding on...
  9. L

    Test results today, elevated AST, ALT and TSH

    Thyroxine is a med you need indeed to take first thing in morning, best some time before breakfast. But, even if 50mg is not a huge dose, Thyroxine is one of those meds who need to be adjusted now and then until you find the right dose who works best for you. They usually do not wait as long...
  10. L

    Should I stop my meds before my tests ?

    Most logical in my opinion is,.... on docters advice. - He has to interpret the results of the tests and draw conclusions. To be able to do that accurately he needs to know anyway exactly what meds ( and supplements ) you used the weeks before, otherwise he could make false conclusions. So...
  11. L

    CBS C699T Effect on BUN (Urea)

    I know they are 2 different things.... but very closely related. Ammonia (is a compound of nitrogen and hydrogen) NH3, freed for instance when proteins and amino acids are broken down. As Ammonia is very toxic it is broken down by the live by adding CO2, to make urea (BUN). So in short Urea...
  12. L

    Download for Rare SNP Analysis

    Thumbs up @Valentijn , I am a step further in my investigations. On my old XP , I had following happening : - Before downloading the comment file, the safe as PDF gave an completely empty file. - But the text file was OK - After adding the comments file the save as PDF suddenly worked. - The...
  13. L

    Calcium sources / milk problems - I need a milk-testing strategy!

    I discovered I have osteoporosis 3 years ago. Never used milk in my life, even as a child. So when I started to drink milk, it really upset my intestines. Thus milk intolerance. But then I discoverd MilkFEFIR , i'ts kinda yoghurt but with way more microbio in it. By starting low and build up ...
  14. L

    CBS C699T Effect on BUN (Urea)

    Should I unterstand "Thus not like Dr Yasko" pretends ?
  15. L

    When is CBS an ammonia risk or not

    I find so contradicting info about CBS C699T being or not an ammonia risk. ? is C699T AG +- an ammonia issue at all or is it only C699T AA ++ ? rs2851391 CBS A13637G CT +/- rs1801181 CBS A360A AG +/- rs706209 CBS C*351T AG +/- rs4920037 CBS C19150T AG +/- rs234706 CBS C699T AG +/- rs12613 CBS...
  16. L

    CBS C699T Effect on BUN (Urea)

    Thanks Valentijn, At least a good news in weeks of ready just reading bad thinks. But oeps I made a mistake. I see now CBS N212N says not genotyped. But CBS A360A AG hetero. To be comlete: rs2851391 CBS A13637G CT +/- rs1801181 CBS A360A AG +/- rs706209 CBS C*351T AG +/- rs4920037 CBS C19150T AG...
  17. L

    CBS C699T Effect on BUN (Urea)

    Hello to all , Can I just ask a quest to get started. I have CBS C699T AG +- Hetero , CBS N212N AG +- Hetero As I understood this can cause to much ammonia. Unfortunately here in Belgium MD’s are only willing to do ammonia testing if you have a Hepatic problem. So I have problems having my...