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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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Search results

  1. Learner1

    My OAT results....help please

    You can get an OAT test in Spain. More useful might be the Metabolomix+ test by Genova Diagnostics - they have an office in London that serves Europe.
  2. Learner1

    Which drugs are effective against herpesviruses HSV, EBV, CMV, VZV, HHV6, HHV8?

    Sorry, not sure what you're asking. I tracked my illness and recovery with an Oura ring and lab tests. Most ME/CFS seems to be related to untamed infections which cause mitochondrial fragmentation and depletion of nutrients which leads to a cascade of secondary and tertiary problems, along...
  3. Learner1

    Which drugs are effective against herpesviruses HSV, EBV, CMV, VZV, HHV6, HHV8?

    Antibody tests can be pretty useless. I had several doctors miss HHV6 and EBV because they did antibody tests. Doing quantitative PCR tests showed I was positive for both, and getting on valganciclovir gave me my life back.
  4. Learner1

    Rna based antivirals

    As far as I know, yes. Not 100% sure, though
  5. Learner1

    Rna based antivirals

    I don't know what other people's experiences are, unfortunately. I don't think anyone fully knows what tenofovir is effective for. Wish I did.
  6. Learner1

    Rna based antivirals

    I've been on TDF for a couple of months, substituting it for the valganciclovir I was on previously. No side effects . The info I've seen says TAF is mist effective against EBV, with TDF second, then ganciclovir (valganciclovir was not tested). All were effective with the 2 tenofovirs more...
  7. Learner1

    Are B-cells back on the menu?

    what genes are you looking at?
  8. Learner1

    Are B-cells back on the menu?

    This link doesn't seem to work. Can you check it? I don't think I said anything about EBV not hiding in B cells. I think it does.
  9. Learner1

    Are B-cells back on the menu?

    It's worth pursuing, for the right group of patients and under the right conditions, in the right sequence with other treatments. It has not. It has been successful for a number of us, including me. That's what I meant with under the right conditions, in the right sequence. My doctor treated...
  10. Learner1

    Effectiveness against CMV

    I've been on valganciclovir, mostly at 1.8g per day, sometimes at 900mg per day, for most of the past 6 years, with no side effects or problems. I have had regular CBC and CMP tests to check liver and kidney function, which are fins and no difference between being on or off valganciclovir.
  11. Learner1

    Dr. Thomas Levy -- How COVID Helped Me Regain Good Health

    I'm talking about excess iron. Ferritin is the typical measure of iron status, although it's an "acute phase reactant" and can be high due to inflammation rather than just measuring iron, so it's good to be thoughtful when interpreting it. A good idea is also to do a full iron panel, which...
  12. Learner1

    Medical School Patient Surveys - Come Give Feedback!

    1. how many providers they have seen before getting a diagnosis (if they got one at all) Many 2. what diagnoses they were given ME/CFS Common variable immune deficiency Autoimmune POTS Mast cell activation syndrome Hashimotos Adrenal insufficiency Celiac Chronic EBV and HHV6 3. what...
  13. Learner1

    What impairs vitamin B6 production/utilization?

    B6 is used in over 100 different chemical reactions in our bodies. If it's accumulating, one wonders what is not using it. Many times it's because cofactors for reactions are missing - minerals? Amino acids? ?? Or is it really accumulating?
  14. Learner1

    Skin symptoms itchy after use of Vitamin B12 injections

    I found that I was breaking out in hives from methylcobalamin injections which were synthesized by bacteria grown in a corn medium -:turns out I'm allergic to corn! Switching to non-corn grown methylcobalamin made the hives go away!
  15. Learner1

    what’s the rundown on high dose thiamine?

    1-2mg. It's worthwhile to know one's mineral status, though, as too much of any mineral can be harmful.
  16. Learner1

    what’s the rundown on high dose thiamine?

    No, I've cut back a lot on what I was taking after taking high doses of a lot of stuff for about 6 years. I am mostly back to a normal life and tired of taking over 100 pills a day, so I take Thorne Advanced Nutrients which has thiamine as well a few other things and listen to my symptoms. It...
  17. Learner1

    what’s the rundown on high dose thiamine?

    I took 1mg for several months but don't any longer.
  18. Learner1

    Loss of IgG antibodies

    I found PCR tests are a lot more useful than antibody tests as my body doesn't make antibodies properly. I had several doctors miss my EBV and HHV6 because they were just looking at antibody titers. I have had documented,,PCR positive reactivations of both EBV and HHV6 over 9 years after immune...
  19. Learner1

    Is Brivudine an option for suspected EBV-induced CFS?

    Valcyte has been a lifesaver for me and brought me e back to health as long as I stay on it when I have outbreaks.
  20. Learner1

    Hyperthyroidism? severe insomnia

    @Mary You might find this helpful. https://healthmatters.io/understand-blood-test-results/dopac The NAC helping points to oxidative stress. Have you tried other antioxidants as well, like high dose melatonin (10-30mg), vitamins C & E, alpha lipoic acid, anthracyanins (the red/purple stuff in...
  21. Learner1

    Hyperthyroidism? severe insomnia

    I believe the half life of T4 (levothyroxine) is about a week and the half life of T3 is less than a day. I think testing FT3, FT4, rT3, selenium and iodine might be helpful. I'd also look into cortisol production by doing a 4 point cortisol or DUTCH test. And get iron and B12 checked. Then you...
  22. Learner1

    Nicotinamide riboside (NR), a form of vitamin B3, may increase risk of breast and brain cancer, study suggests

    Niacin has just got to go through too many conversions to count on for producing more NAD and ATP. Taking NAD+, NMN or NR is more direct. However, not everyone can use NR, due to genetic variation. Thrse describe how NAD can be made, through 4 pathways, 2 new (de novo) and 2 recycling (salvage)...
  23. Learner1

    Severe Gut Dysbiosis

    @Tomorrow I think that @katabasis gave you some excellent advice. Things I'd add to this information would be: If youve spent time on antibiotics, I would thoroughly investigate oxalates. Either the Great Plains OAT test or Genova Diagnostics Metabolomix+ test are good, plus they give you a lot...
  24. Learner1

    Cromolyn as a mast cell inhibitor? [TWITTER] June 2022

    It has to do with your microbiome and how leaky your gut is. When I first tried it, years ago, I had a worse off gut and it was sedating. After a lot of gut work, it doesn't faze me
  25. Learner1

    If Acetyl-L-carnitine worked well for me, would else might work for me ?

    Roger Williams, the scientist who discovered many of the B vitamins, found that people need vastly different amounts of different nutrients, so there is not one recipe of nutrients that humans require. He wrote papers and books on the concept of human biochemical individuality. Our needs very...
  26. Learner1

    If Acetyl-L-carnitine worked well for me, would else might work for me ?

    You can purchase the Sigma Aldrich Metabolic Pathways chart. It's fairly inexpensive.
  27. Learner1

    Switch to turn off inflammation.

    Yes, it does have to do with all of that. Good find. But the question is, why does inhibition of FAO happen, yes it's related to malonyl CoA, but why is that changing to inhibit FAO? Viruses? Immune system? Stress? Depletion of some resource?
  28. Learner1

    If Acetyl-L-carnitine worked well for me, would else might work for me ?

    I don't doubt it. You probably needed it. But too many folks say "X didn't work for me" after trying it for a few days or even weeks, without realizing it's getting entire biochemistry working which can be more subtle. Sometimes, you add something and get one thing working better, which leads to...