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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. rydra_wong

    Methylation - hair loss

    Boanca, SUOX (-/-) means you have NO SUOX MUTATION! (I was taken aback when you said you had it because I do not, but then I realised -/- is NONE. You should look at your documentation because the labs/docs get so tired of saying that -/- is a mutation, that they finally switched how they...
  2. rydra_wong

    Methylation - hair loss

    Rich, I am curious about this as well. I always turn up low serotonin on tests but 5-HTP does nothing for me. I have 3 genes that cause low BH4. Is that the issue? I tried 25mg/day BH4 and it did not seem to have an effect. BiancaS is taking 100mg but by prescription (kuvan). What she is...
  3. rydra_wong

    Spring is Coming - Anyone want to share Weight loss protcols?

    Well...I would want to know TSH, T3, homocysteine, uMMA (and if you have ANY reason to suspect TSH or T3 abnormal, then Reverse T3, and the anti thyroid antibodies tested too). On the other conference many people were saying their brain fog went away when their thyroids were normalized. I...
  4. rydra_wong

    Methyl donors - SAMe, TMG + any others ie DMG

    One thing I want to say about this and that is the more methyl donors you take the more methylation supplements you need. I take 2g TMG because I read that people who get the most TMG from diet get appx 2g/day. I get whatever methionine and choline is in eggs. I get the choline that is in my...
  5. rydra_wong

    Methyl donors - SAMe, TMG + any others ie DMG

    What is your TSH? It should be about 1.9. If it is >= 2.0 then your thyroid could very well be what is causing the brain fog. So if you are only taking such and such supplements, but not your thyroid supplement, then maybe you should take that. But I didn't like your thyroid supplement myself...
  6. rydra_wong

    Methyl donors - SAMe, TMG + any others ie DMG

    I have depressive type symptoms and TMG doesn't make it worse. (2g). I wonder why choline might do that? I actually got in here today because I was in a super great mood last week, during which time I started on a serious diet, maybe 800 calories a day, using a product containing tyrosine...
  7. rydra_wong

    Methyl donors - SAMe, TMG + any others ie DMG

    I take Country Life P5P 50 mg. I probably would take 100mg but I'm cheap and 50 seems to do the same job. When I tried 200mg it was a different brand - I think Source Naturals. Rydra Well I'm not even sure it makes sense to take TMG if you take enough choline. DMG is a total waste...
  8. rydra_wong

    Results from my methylation treatment - week by week

    Your supplement actually has a full spectrum of 11 B vitamins (something I rarely see anymore, but like) however it uses folic acid not mfolate and cyanocobalamine so it wouldn't be my choice. Also not too sure about the NAC...it really destroys methylation for some people. I am impressed with...
  9. rydra_wong

    Spring is Coming - Anyone want to share Weight loss protcols?

    I hope you saw that I answered this question -- these are the products: http://www.iherb.com/Absolute-Nutrit...les/27664?at=0 http://www.iherb.com/Thorne-Research...aps/18578?at=0 Also my diet book says 2g of glutamine will cause release of HGH (human growth hormone) to help you lose...
  10. rydra_wong

    Mending adrenal glands - rising cortisol and feeling DRASTICALLY improved

    Wow! You guys put a tear in my eye. I try to help but sometimes it backfires on me. I am glad I was able to help here! It just burns me up sometime about what we have to go through to find out basic medical info our doctor's should have told us so I have a burning need to spare others what I...
  11. rydra_wong

    HELP: Has anyone been able to resolve their CBS upregulation problems?

    Thanks, Bianca. I don't think I have to worry about COMT so much because I have low everything -- it would only be - I think - if I had high dopamine or some such that I would have to worry. I don't know why low every neurotransmitter, but maybe due to the BH4 problems. I haven't taken high...
  12. rydra_wong

    HELP: Has anyone been able to resolve their CBS upregulation problems?

    Bianca, I guess this post is old but I am wondering about a few things - like why curcumin is bad for a COMT gene? I find it does well for joint pain. I don't actually have it in my protocol but right now my brother-in-law died and his pills got bequeathed to me so I am taking it - why not...
  13. rydra_wong

    Mending adrenal glands - rising cortisol and feeling DRASTICALLY improved

    Congrats on your results Athene. I am wondering though since you mention allergies, if this recovery still holds true when you are fighting allergens? Because I recover too, but allergy season tanks me. I cannot eat a high protein diet - I have more genes wrong than most people here - I...
  14. rydra_wong

    Mending adrenal glands - rising cortisol and feeling DRASTICALLY improved

    Nielk, I think if you have high cholesterol then you a priori have low thyroid. The thyrodi range is a joke. It is as wide as a barn door and has many, many sick people in it. The labs only take the top and bottom 5% out of the readings that they get in (readings of SICK people because well...
  15. rydra_wong

    Mending adrenal glands - rising cortisol and feeling DRASTICALLY improved

    Athene, that is why I take 1 g E/day. I read a book on sports nutrition by Dr. Michael Colgan and he said that Olympic athletes get sick after training so hard if they don't take very high dose antioxidants (he listed E at 1g for Olympic training). Exercise breaks down muscle fibers and the...
  16. rydra_wong

    Wrong Diagnosis Site - Fredd's Protocol

    Idie, here is more news on shaking. (I really dont think cortisol is tied in for me, my bp is not low). I started dieting and the shaking came back. I read that dieting causes low thyroid (which I had just fought off) and that I don't need. I bought these 2 products, popped 3 pills (2 of...
  17. rydra_wong

    Methylation - hair loss

    Bianca, that is awesome that you figured that out all by yourself. I also just started taking coleus! I was having problems shaking which turns out to be from low thyroid and coleus helps thyroid get into the cells! I take it with a T3 supplement from iherb that has tyrosine, guggul, and...
  18. rydra_wong

    Spring is Coming - Anyone want to share Weight loss protcols?

    Awesome idea! Well I eat the kidney diet. I am glad I had my hormones tested because it told me I have broken kidneys, broken liver, genes leading to a bad heart, and broken brain (ouch, it even hurts thinking about it). So I know I have to be good to my kidneys. I read that if you eat high...
  19. rydra_wong

    Folate Issues & Methylation

    I actually got into this thread to post that Metametrix came out with a UMFA test...(it tests UnMetabolized Folic Acid levels)! Check it out here: http://www.metametrix.com/test-menu/profiles/vitamins/umfa
  20. rydra_wong

    Folate Issues & Methylation

    This is very interesting but I happen to know that excess of cadmium causes loss of copper as they compete for digestion. So now I am wondering why you didn't state that instead of niacin? And I am also wondering how you can tell anything about vitamins from hair? Minerals, yes, but the B...
  21. rydra_wong

    CONFIRMED FOLATE DEFICIENCIES - PLEASE POST HERE

    Jeff, I thought you were ging to that child autism doctor (forget his name). Wasn't he able to help you? How much protein do you eat? You know the breakdown product is ammonia and that takes magnesium to excrete, right? Also magnesium is an alkaline mineral so if you are acidic for...
  22. rydra_wong

    Not sure where to start! Heterozygous C677T/CFIDS Diagnosis

    He's seeing me because I have high blood pressure and I told his receptionist that if he didn't see me now I'd be his heart patient later. If you can find an angle like that he'll take you. Anyway you can get your genes mapped by him and he will answer questions about them. He is really smart...
  23. rydra_wong

    Anyone noticed a link to ability to focus your eyes?

    ok, I will keep B2 in mind. I can't just take it -- I have no separate B2. I can only take a B complex for that. But yes, I have two different eyes out of focus problems...one caused by blood sugar issues -- if I abuse my blood sugar by eating junk food (and just keep eating it to stave...
  24. rydra_wong

    Spring is Coming - Anyone want to share Weight loss protcols?

    idk really what paleo is, but a high protein diet won't work for me because I have 3 genes that cause BH4 deficiency and can't excrete the ammonia. If you eat low carb and low fat the only thing left is protein so it must be high protein. I do want to eat about 80g/day of protein but no more...
  25. rydra_wong

    Metabolic Analysis Results

    Rich, you mentioned that methylation is required to make unbiquinol. Is that the only thing necessary to convert ubiquinone to ubiquinol? Because I had an OAT profile that showed low CoQ10 even though I had been supplementing 100mg ubiquinone for 20 years. So either 100mg is too low or I...
  26. rydra_wong

    Spring is Coming - Anyone want to share Weight loss protcols?

    Really? I know carnitine is recommended by my diet book but it never said why. Anything that controls blood sugar (my biggest problem) is very welcome. Rydra
  27. rydra_wong

    Spring is Coming - Anyone want to share Weight loss protcols?

    Thanks. I forgot to mention the fat thing. I believe the key to healthy dieting is low fat because your body is getting lots of fat - your own! There were studies done in the 1930s that found that you could take healthy people and turm them into diabetics by feeding them 2weeks of high fat or...
  28. rydra_wong

    Spring is Coming - Anyone want to share Weight loss protcols?

    I am recovering from a recent episode of hypothyroid and gained 20 pounds. I am hoping to lose it by the time the weather gets really nice. Seems like I gained it fast so I should be able to lose it fast (ok, maybe it's wishful thinking - please don't disillusion me!) I had constant...
  29. rydra_wong

    Why is the dosage of vitamin B12 so high for ME/CFS treatment?

    Originally Posted by Dog Person ...In my opinion it is ever good to do a shotgun approach with B vitamins. As to Pam and her migraine. By taking what she "thinks" she needs has obviously thrown her nutritional balance off to a greater stress response. Research out of New York's migraine...
  30. rydra_wong

    Hair loss

    I take excessive DHEA and no hair loss. hyperthyroid causes hair loss. Maybe you are sub-clinically hyperthyroid? Rydra I think you really want to know how to prevent hair loss. I should tell you that even though I was hyperthyroid for almost a year I did not lose hair and that is a...