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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. L

    How Long to Give Dr. Dantini Protocol?

    Hi Daffodil, thanks so much. I didn't think it was from the Valtrex. Just wondering if it's worth continuing to take since I did get flared up. I really appreciated your reassurance about the medication. Maybe it is die off. Thanks again, Susan
  2. L

    How Long to Give Dr. Dantini Protocol?

    I've been working with Dr. Dantini for about six months. I love him and his nurse, Jo. They couldn't be more supportive. But I've been taking the Valtrex 3000 mg per day at full dose for nearly five months. I definitely saw improvement. But now, I'm in a big flare up and they insist that I...
  3. L

    Compound MTHFR heterozygous with perfectly normal B12 and homocysteine

    thanks Yes, I've been reading about this since your earlier post and I believe I have histamine intolerance too. My main symptom is 24/7 dizziness and that is a big symptom! Also read that even probiotics are no good if you have this and certain meds I take also can have an effect! So complex...
  4. L

    Compound MTHFR heterozygous with perfectly normal B12 and homocysteine

    Thanks so much, Crit. No expectation that you are more than an increasingly educated patient. But it was very helpful to read your thoughts. No,I cannot eat tomato or spinach. Really appreciate your support. Leaving tomorrow for a week-long cruise. Will be good to take a brief break. Susan
  5. L

    Compound MTHFR heterozygous with perfectly normal B12 and homocysteine

    Oh, sorry, I'm still learning the terminology. MTHFR C677T and MTHFR A1298C are both +-. I had Labquest do a blood test and also 23andme. Results were the same. I just uploaded my blood tests if you could take a look and tell me what you think. Thanks, Critterina. Susan
  6. L

    How important are SHMT1 and SOUX1?

    I've been on this journey for so long and yes, I, too, have also made some big mistakes! Most recently, worked with a practitioner who claimed to be expert in methylation issues, but just ignored my results and put me on GAPS. I did that for weeks, and finally, after examining my results...
  7. L

    Genetic variants (SNPs) Interpretation Guide

    This is the clearest and easiest way I've found to understand specifics of my genotype issues. Thank you.
  8. L

    Compound MTHFR heterozygous with perfectly normal B12 and homocysteine

    Thanks. I didn't do a serum amino acid test. Which do you suggest? I am compound heterozygous for mthfr. My only ++ was the MTRR A644A. Thank you for saving me a fortune that I could not afford! Susan
  9. L

    How important are SHMT1 and SOUX1?

    Thanks so much Critterina. I've created my signature with most of the info. Yes, definitely leaky gut. Yes, cannot tolerate eggs, onion, garlic, etc. No Leiden V Factor. Just tested that and a bunch of other stuff too. NOT RICH! lolol but pretty darned ill. On disability since 2010. Worst...
  10. L

    A way to cross-reference methylation test result interpretation & treatment

    has anyone come up with an app or program yet? It would be great for me to enter in all the information from genetic, blood, urine, and hair tests, including treatment options, and have the program automatically put it together for a treatment plan. I think Dr. Yasko essentially does this...
  11. L

    What are the most valuable methylation tests to get?

    Yes, it's just exhausting trying to figure this all out. Thanks.
  12. L

    What are the most valuable methylation tests to get?

    Obviously, we need the genetic test. But then, there are so many other tests they say are important. On a fixed income, it's hard to know which tests are really worthwhile. Here is the list from Dr. Yasko's site: http://www.holisticheal.com/complete-list-of-health-tests.html If you were just...
  13. L

    How important are SHMT1 and SOUX1?

    23andme no longer tests these two snps and it seems that Yasko thinks they are vital. So do I now have to spen another $495 to include these two? Thanks, Susan
  14. L

    Compound MTHFR heterozygous with perfectly normal B12 and homocysteine

    I just got a huge bundle of blood test results and my glutathione is low (222 225-386), but I did the methylmalonic acid test for b12 and that was normal (95 0-378) as well as my homocysteine (8.6 0-15). So what would this mean for treatment? Do I really need to supplement B12 then? Thanks, Susan
  15. L

    Has anyone used IGG supplementation?

    It's the same but a different brand. Didn't want to say the brand in case someone thought I was trying to sell it or something. It cost $41. Yep, from a cow. Do you have any experience with it? I am not a doctor so am having trouble with all the scientific language, but it looked like it could...
  16. L

    Has anyone used IGG supplementation?

    I saw a brand new doctor today. She's on my insurance, but before I knew it, she had me spend nearly $600 for saliva tests and micronutrient testing. I was so excited about the potential that she had another way to look at my issues that I really wasn't thinking so clearly. But she really wants...
  17. L

    Help deciding whether to take imunovir

    Thanks. Well, the dr. Had me dissolve a tiny piece in water and just take a tbsp. I agree that some of the symptoms may be dieoff, but difficulty breathing is unnerving and i think that is more of an allergic reaction. I will try one more week on the tiny dose unless the breathing issues get...
  18. L

    Help deciding whether to take imunovir

    Thanks for all the feedback - am trying and... I never got email that there were responses and I'm so happy to hear from others about this! I started on 1/8 of a pill on Monday and have taken a single 1/8 dose each day. So far, I'm not doing well even with that tiny dose. Having some...
  19. L

    Help deciding whether to take imunovir

    My doctor is insistent that Imunovir is the only way to get my killer cell activity to rise from 8%. I have yet to find anyone who has really been successful with it. There seem to be few studies on it. I am extremely chemically sensitive and reacted badly to inosine from the health food...