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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. Msinnott

    Poll for Vitamin D supplement tolerance and calcitriol levels

    Before surgery taking vit d pushed my 1,25 high because when you body has higher levels of calcium it doesn't need the vit d it helps absorb calcium. I stopped taking any vit d when my active vit d got to 145. It took almost two years of no vit d for my active levels to come back down to the...
  2. Msinnott

    Poll for Vitamin D supplement tolerance and calcitriol levels

    i forgot to say right after my surgery my pth dropped to 8 which is normal for how high my calcium was.
  3. Msinnott

    Poll for Vitamin D supplement tolerance and calcitriol levels

    I always had normal serum calcium but all the symptoms of having high calcium And much research I asked my dr to check my ionized calcium. And it was elevated not a lot but the more my active vit d dropped the more my ionized calcium went up. I found out higher active vit d can mask...
  4. Msinnott

    Poll for Vitamin D supplement tolerance and calcitriol levels

    I thought I would come update I am almost a year and half post op from have two enlarged parathyriods removed. I couldn't do any vit d for the first 14months I could only get it from the sun. Guessing the body can regulate it that way. First 8 months tanning would make me so tired and fatigue...
  5. Msinnott

    REFEEDING SYNDROME - The clues to healing via induced deficiencies

    I been dealing with refeeding syndrome since may 2015 when I had parathyroid surgery to remove to hyper glands which caused high calcium. I have had to be on large doses of magnesium And calcium the first year my phosphorus stayed between 2.3-2.5 (2.5-4.7) calcium 8.4-8.7 (8.5-10.1) just started...
  6. Msinnott

    Poll for Vitamin D supplement tolerance and calcitriol levels

    I didn't really fall into anything on the poll I use to be on high doses vit d made me feel worse the more I upped it. Got my levels checked vit d 25oh was 53 and vit d 1,25 was 147. I started weaning off vit d right away I had to slowly come off of it or my muscles locked up. It took 6 months...
  7. Msinnott

    How many people have had their 1,25 Vitamin D tested? Debunking the Marshall Protocol

    Well since lowering my vitamin d my 25oh levels are now 60. When they were only 50 on 10,000 iui vit d. I also have been taking mk7. I am going to try dropping my vitamin d down 2500iui since it's summer time now. Sometimes more isn't always better. Who knew I needed less to get my levels up...
  8. Msinnott

    How many people have had their 1,25 Vitamin D tested? Debunking the Marshall Protocol

    Has anyone started lowering there vitamin d? I was at 5000 for a month and decided to start going a little lower because I felt so much better after the intial herx of lowering vitamin d. I dropped down to 2000 and started taking bromelian. I have been herxing like crazy increased joint and...
  9. Msinnott

    The Great VDR Taq/Bsm Debate

    I am vdr bsm +/+ and found my 1,25 levels were really high compared to my 25oh levels. This was on 10,000iu of vitamin d I have since went down to 5000iui and started supplementing calcium and mk7 my 1,25 levels have dropped 50 points in 2 months.
  10. Msinnott

    Homozygous Mlycd mutation?

    Did more research and found I am homozygous for 3 other mlycd mutations. rs12598884 TT, rs4386124 GG, and rs11649200 GG. No info on these either but found a lab that tests for them so not sure if that means they could be involved in a defiency.
  11. Msinnott

    Homozygous Mlycd mutation?

    I know the test above is said to check over 20 different fatty acid defects. Not sure if they have that test in the Nhs system. It's tested for at the mayo clinic.
  12. Msinnott

    Homozygous Mlycd mutation?

    Brenda were those your results from your oat test? I have ordered thru greasiest plains, not sure of the turn around. I know my whole life I have had energy problems and just feeling totally wiped out and certain times. The other red flag is my cardiac problems, I was diagnosed mitral valve...
  13. Msinnott

    Homozygous Mlycd mutation?

    Is gg the risk allele? I just ordered an oat test so I can get my malonic acid levels checked. I have always had a problem with taking my krill oil doesn't seem like my body is breaking it down.
  14. Msinnott

    Homozygous Mlycd mutation?

    Does anyone know anything about the MLYCD gene (rs8062640) I was just searching through my rare alleles on gedmatch and seen I am GG for this which is 11% of the population. All I found is malonyl-CoA decarboxylase involved in fatty acid oxidation for the mitochondria. Just trying to find which...
  15. Msinnott

    MTHFS defect (folinic acid intolerance) - request for genetic data

    Not sure if anyone is still looking into this but thought I'd add mine in. I do have a really bad reaction to folinic acid supplements and vegetable folates. I was supplementing 800mcg of folinic acid a day after being on methylfolate for 9 months. It was slow but I noticed I was getting more...
  16. Msinnott

    How many people have had their 1,25 Vitamin D tested? Debunking the Marshall Protocol

    I realize now that you can take super high doses of vit d but without calcium it isn't going to do as much. Its all based on feedback mechanisms if you are low in calcium and your body senses that its going to send out high levels of pth to raise your calcium levels into the normal range and...
  17. Msinnott

    How many people have had their 1,25 Vitamin D tested? Debunking the Marshall Protocol

    I found out from someone else who had the same problem that I was having and they started supplementing with a calcium 1000mgs and mk7 and 5000iui of vit d supplement and their 1,25 levels over two months dropped from 128 down 62. I realized that back in march when I started doing the...
  18. Msinnott

    How many people have had their 1,25 Vitamin D tested? Debunking the Marshall Protocol

    Well that level was taking 10,000 iui you think it would be way higher. I was just trying to get to 70. But I had no idea that it was converting to 1,25 vitamin d. I was looking on 23andme and I have several snps mutations in vitamin d pathways.
  19. Msinnott

    How many people have had their 1,25 Vitamin D tested? Debunking the Marshall Protocol

    Here are mine levels. I was supplementing 10,000 iui m-f trying to get my levels up. Finally had my doc run a 1,25 to see what was going on since I couldn't get my levels up. Here are my results. Vitamin D 25OH 51.7 (32-100) and vitamin D 1,25 145 (15-75). I have normal calcium levels 9.2...
  20. Msinnott

    High serum folate??

    For the last 5 years everytime my doctor checks my serum folate it is more than 20. With normal being more than 4. I did have a rbc folate checked a few months back and it was low normal. What would cause folate to be higher in serum than in rbc? I would think once I started taking methyl folate...
  21. Msinnott

    help with my 23andme results

    Thanks so much for your help. I was checking sulfates in my urine and was getting 1200 consistly and then found I had a uti and I have been out of town and havnt checked them recently. I did have my doctor run a blood ammonia test and it came back less than 10 with normal being 11-32 not sure...
  22. Msinnott

    help with my 23andme results

    Yes, I got some pretty good info there. I wasn't too sure about the shmt one or being hetero for all the bhmt would cause problems. It does seem to make sense a lot of my problems I have had most of my life. It said when a +\+ Mao mutation is combined with a +\+ or +\- comt v158m mutation one...
  23. Msinnott

    help with my 23andme results

    I just got my snps and here they are. homo for vdr bsm mao-a r297r cbs a360a hetero comt v158m comt h62h mthfr c677t mttr a66g bhmt-02, -04, -08 shmt1 c1420t
  24. Msinnott

    New member:advice please re snps,methylation protocol,supplements

    I find I have to take 1000iui for every 25lbs of body weight to maintain 70. I had slipped up and had only been taking 5000iui when I thought it was 10000iui and my levels dropped down to 43. I normally take 10000iui m-f.
  25. Msinnott

    Pyroluria/undermethylation treatment causing sudden relapse?

    I just get the regular 99mcg potassium at any health food store try taking one or two and see how you feel. Try increasing food potassium in your diet too. I did the full doses the whole 6 weeks, didn't realize I needed potassium until the 3rd week. At the end of 6 weeks is when I started adding...
  26. Msinnott

    Pyroluria/undermethylation treatment causing sudden relapse?

    I had copper toxicity from a copper iud never had blood test to confirm but has all the symptoms. I started taking 50mg zinc picolate and 50mg p5p and I had some serious detox symptoms a lot of the ones you experienced. It helped to take potassium. It lasted about 6 weeks and I don't have...
  27. Msinnott

    Uti question?

    I have been doing a low dose methylation for about 6 months. I have been feeling tons better but started to have symptoms of possible CBS mutation waiting on my 23andme results. In the meantime I got sulfate strips and noticed I was getting 1200 levels almost every time I checked. Started taking...