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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. silverseas2014

    High rate of false positives and misinterpretation of SNPs characterize direct-to-consumer genetic testing

    Thanks for this article. I just had a long conversation with DH about accuracy in these tests. I went ahead and ordered the Dante Labs WGS ... understanding that important results will have to be verified by further testing.
  2. silverseas2014

    Whole Genome/Exome Sequencing less than 1000 AUD with Dante Labs

    Just ordered my test yesterday. Thanks for the post.
  3. silverseas2014

    Rapid reversal of severe lactic acidosis after thiamine administration in critically ill adults: a r

    Hi @junkcrap50 .... I have just returned from holiday, and saw your questions. I take: Sulbutiamine: 200 mg/day (Brand: NeuroFlow) Benfotiamine: 150 mg/day (Doctor's Best) High Potency B-1 (Thiamine): about 125 mg/day (Source Naturals) --Just recently, I have decided to cycle...
  4. silverseas2014

    Money

    Hi @Johnmac --- An additional note to your "Buying in Bulk" --I buy a lot of powders, and cap them myself. Even if you don't see the vitamin/mineral listed on their websites, these companies do have the connections to make "bulk purchases" --and could probably source whatever vitamin/mineral...
  5. silverseas2014

    Mutation interpretation, detox and serious anxiety issues.

    @Tanna78 Have you read any of the posted documents: see @Calendonia's links to excellent documents; also check out posts/thoughts by @Freddd, @ahmo .... A long shot, but worth exploring because of beard/wound healing issues: Please go to the thread (at PhoenixRising) entitled: Partial...
  6. silverseas2014

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

    Hi Danny-- A couple thoughts/comments: On the probiotics I mentioned: I rotate them, and I also don't take them every day. Of all of them, I really like Natren's Healthy Trinity, but my god is it expensive! My goal with Probiotics is to eventually not take them---that is, my gut will be so...
  7. silverseas2014

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

    Hi Dan-- We have similiar snps. Here are some of the things I do: Diet: I love protein, and feel much better with protein, so I eat quite a lot. I use Yucca root (Swanson's) to mitigate ammonia. I have not noticed side-effects. FWIW---I think Yasko is wrong about...
  8. silverseas2014

    Gut bacteria destroyed after Flu, need help

    @sregan, I have Jarrow Plantarum in my fridge---I have not tried it yet. I am glad it is helping you! Do you feed your gut with any Pre-biotics ---like Bimuno? Cheers, Silverseas2014
  9. silverseas2014

    Gut bacteria destroyed after Flu, need help

    Hi @sregan----Flu is hellish.... and recuperating often takes far longer than most people estimate. As for healing your gut: I have found great improvements with Resistant starches---the ones I use almost daily are: parboiled rice (rinsed, cooked, and cooled ---then slightly re-heated), boiled...
  10. silverseas2014

    Rapid reversal of severe lactic acidosis after thiamine administration in critically ill adults: a r

    I've found Thiamine critical to my health (and in conjunction with the DQ). I take three kinds: thiamine, benfotiamine, and sulbutiamine.
  11. silverseas2014

    Palms peeling during methylation protocol?

    Hi @Bluelude1 ---I think @Freddd has written about this several times. He mentions "Skin peeling around fingernails, Skin cracking and peeling at fingertips" in Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency.... If you google Freddd and peeling you should get most or...
  12. silverseas2014

    Dry hands, skin cracking on fingers

    Just want to add an update. As usual, my hands, particularly knuckles are becoming dry, cracked and often bleeding --- I've gotten out my white cotton gloves and Lansinoh.... Lansinoh is pure lanolin. But I got tired of spending 9-10 bucks for a little tube and bought a tub of pure lanolin...
  13. silverseas2014

    Thirst for MFolate, those that have ramped up

    Thanks @Johnmac --- Yes, I take quite a lot of MethylB12.... but I don't know if the Kirkland brand is just crap---and I need a lot more to get the same effect than when I took Solgar. I hate the taste of the Kirkland brand..... and I may decide to go back to Solgar--they are definitely...
  14. silverseas2014

    Thirst for MFolate, those that have ramped up

    Thanks @whodathunkit --- I am little afraid to be a role-model :) I did want to tell you that I place a very high priority on getting good rest (naps when I need it as well as the sleep schedule I mentioned above). Before I had even heard about methylation... I was a mess. I had spent my...
  15. silverseas2014

    Thirst for MFolate, those that have ramped up

    Lynn--- You are right, I just edited my post after re-reading my logs and notes to include the SNPs that I think are suppose to impact our ability to produce/absorb Biotin. I was using some of the information in @Radio's thread: Partial Biotinidase Deficiency, 23andme Test, BTD GENE POLL...
  16. silverseas2014

    Thirst for MFolate, those that have ramped up

    @whodathunkit and @Johnmac ---Hello. I am updating you on my High-Dose Methylation Protocol: Shortly after I last posted, I decided to step-down my doses of Methylfolate. I also decided I would also trial a different brand (I have only used Solgar's Metafolin up until this trial), and so...
  17. silverseas2014

    Unfolded Protein Response and A Possible Treatment for CFS

    Hello @mariovitali-- I have AG for rs2272306 Cheers, Silverseas2014
  18. silverseas2014

    Methylation: From feeling FANTASTIC back to Square One

    Hi @knackers323 I know of no "current list of recommended supplements." The 23andme test is a genetic test---genes are basic units of heredity--that is, you are born with them. I doubt a few supplements will interfere with them. Please go to @caledonia's links for Methylation---they will...
  19. silverseas2014

    Methylation: From feeling FANTASTIC back to Square One

    hi @knackers323-- The 23andme test is now an "dna ancestry test". It is not the ancestry info you are seeking from this site; it is your raw data from the test that you download from the 23andme website, and then run it (the raw data) through one of the analysis programs mentioned...
  20. silverseas2014

    Methylation: From feeling FANTASTIC back to Square One

    @drew---good question! Ask Eric what he takes (at his blog "howirecovered.com") Cheers, Silverseas2014
  21. silverseas2014

    Methylation: From feeling FANTASTIC back to Square One

    @knackers323 ... Without knowing your methylation snps it is difficult to know what direction to take. Knowing your snps allows you to rule out some things for sure, and begin experimenting with others. I have not taken a B-complex. Several years ago before starting any Methylation Protocols...
  22. silverseas2014

    Methylation: From feeling FANTASTIC back to Square One

    Hi @knackers323 ---I would try to do the 23andme genetic test, and then run the raw results through GeneticGenie or Livewello or Sterling's app. At least this would give you some basic information about your methylation genes. Cheers, Silverseas2014
  23. silverseas2014

    Really nasty cold after starting methylation supps

    @Tammy, et al, @whodathunkit wrote: I really have to agree with @whodathunkit here: Any Methylation Protocol is time-consuming, expensive, and full of set-backs----and many of us get discouraged and fed-up. But many of us keep going. And we keep going because, frankly, there are glimmers...
  24. silverseas2014

    Really nasty cold after starting methylation supps

    Hi @frchli-- Under @Freddd's posts are symptoms of Potassium Deficiency (provoked by taking Methylfolate). For myself, I feel muscle cramps in calves, and then it progresses to lower back, upper back---but the point is I don't let it progress, I don't even let it begin. I dose with Potassium...
  25. silverseas2014

    Really nasty cold after starting methylation supps

    Hi @frichli.... A couple of thoughts: I am still on high-dose Methylfolate (plus the rest of the Deadlock Quartet), and I have had almost all of the symptoms you mentioned.... BUT like others who have done high, penetrating doses of Methylfolate, as I progress through the these crashes...
  26. silverseas2014

    Thirst for MFolate, those that have ramped up

    Hi @whodathunkit .... I started my 50 mg. dose on July 7th, 2015.... so, as of today, just over two months. Have a great evening, Silverseas2014
  27. silverseas2014

    Thirst for MFolate, those that have ramped up

    @ahmo.... thank-you for your response. Regarding sublinguals: I do not want to put anything in my gums for a significant time--do you put your sublinguals under your tongue?? And what brand of sublingual Methylfolate do you use? I am just now getting my teeth and gums back in order and do...
  28. silverseas2014

    Thirst for MFolate, those that have ramped up

    Yes, you$$$$er! And I appreciate your note about "stepping down a litte before" --I've had several "mini-step-downs" just to see if I really need to be at that 50 mg dose for a while, and yes, it seems I do---as my symptoms come back withn 3-4 days of the step-down. Cheers, Silverseas2014
  29. silverseas2014

    Thirst for MFolate, those that have ramped up

    @Johnmac Some more thoughts: On the damage caused by MTHFR snps (and associated snps): Time. Time is a huge factor in how much damage we are each trying to heal. Time = Age. I don't know how old you are, but I at 52 I've been dealing with the fallout of these snps for half-a-century...
  30. silverseas2014

    Thirst for MFolate, those that have ramped up

    Glad it helps @Johnmac... Last night I was thinking about what @Freddd wrote about "layers of healing" and his ideas that small amounts of Methylfolate (and the DQ) do NOT begin to get to the deepest layers (are we talking tissues here??) of our bodies without the penetrative doses of...