• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. tiredowl

    Supplements you take?

    I find very little help from most supplements, meaning that I still feel severe fatigue... but generally Q10 and Thiamine has been somewhat helpful. I still would like to try some more supplements, but I have kind of given up on this, because of the lack of results.
  2. tiredowl

    Dante Labs are offering €199/$229 whole genome testing again up to 29th

    Is sequencing.com safe? I mean as in does it use the genetic data for anything? Other options?
  3. tiredowl

    So You Think Your Genetic Info Is Protected? Uhhhhh.....Not So Fast ......

    It's definitely a bit worrying, yes. What about Veritas and Dante? Are those secure at least? Those seem to be of clinical grade value.
  4. tiredowl

    Dante Labs whole genoma testing Results

    I'm wondering about the same. I still haven't been able to access it. By the way, is it safe to open these kinds of medical files on the computer? I just think that genetic info can be kind of sensitive, but not sure. Also is it better to buy the hard drive from them?
  5. tiredowl

    Is ME/CFS a mitochondrial disorder?

    I have pondered this as well, and you are right, there are so many similarities between mitochondrial disease and ME. I wish it was easy to diagnose.. anyone have problems with their eyes? I mean like eyes are kind of droopy and also extreme nearsightedness? Apparently that can be a tell sign...
  6. tiredowl

    Worth trying a probiotic again?

    Ugh, I don't know if I can try Mutaflor again- it worked for a while, but now I seem to get anxiety after taking it- Anyone know if taking Mutaflor can be damaging for us? Considering it can enhance bioavailability of serotonin in the gut. I hope someone have some useful information on this...
  7. tiredowl

    Post Lyme Treatment with KDM

    Is there a way to order this disulfiram online?
  8. tiredowl

    High dose vitamin B1 (thiamine)

    https://www.ncbi.nlm.nih.gov/pubmed/25695433 Benfotiamine attenuates inflammatory reponse in LPS stimulated microglia. Maybe this could be a good thing?
  9. tiredowl

    HOW on earth is EDS or any other CTD not the soil in which ME flourishes?

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989889/ Has anyone seen the studies of Losartan being able to help tissues in collagen diseases like Marfan, Ehlers etc? I wonder if this could have some positive effect in regards to the neck problems some people have, especially those that are...
  10. tiredowl

    Fenbendazole and Sulfur Intolerance

    Sorry for asking again, does anyone know how the zoles affect glycolysis and whether it be would a bad thing for ME/CFS? Found this study and it's rather confusing to me: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6085345/
  11. tiredowl

    Fenbendazole and Sulfur Intolerance

    What is this being used for ? It says its for dogs, but it appears some people have taken it for cancer? Could this also be helpful in CFS/ME ?
  12. tiredowl

    Dante Labs are offering €199/$229 whole genome testing again up to 29th

    I ordered the test because I wanted to check if I might have some rare mutation. and assumed it had 'whole exome sequencing' testing included, but now I'm not so sure. I mean I can so far only find the SNP , and that's not really enough to provide any clues? this stuff is too confusing for...
  13. tiredowl

    Dante Labs are offering €199/$229 whole genome testing again up to 29th

    Do you know which are your 'Whole exome sequencing' results? I got similar results to you, but why is there no ''WES report'' ? Pharmacogenetics report and wellness report I got pretty early from returning the test. But I was most interested in recieving my whole exome sequencing... So far I...
  14. tiredowl

    Could CFS be paraneoplastic?

    I am curious to learn more about this, how long one can live with this syndrome before the cancer or tumor (sometimes benign) is discovered. And I also read that some people think it could be underdiagnosed? Should people with extreme ME fatigue and also strange neurological symptoms be on the...
  15. tiredowl

    Turmeric/Curcumin for ME/CFS?

    Oh no! I hope you received your package at last. The site I ordered from was an UK-based site. :)
  16. tiredowl

    Dante Labs are offering €199/$229 whole genome testing again up to 29th

    Moof, I recieved my files like that as well. But I can only find the SNP files. I am looking for the whole exome results, but it seems that I cannot find it. Any ideas? Have you had trouble with using the VCF format?
  17. tiredowl

    LDN and 'adrenals'

    I read somewhere that it could potentially lower cortisol. Not sure how it would affect people with Addison's disease for example, but that is probably not something one want to play around with.
  18. tiredowl

    Dante Labs are offering €199/$229 whole genome testing again up to 29th

    To those that had their exome testing finished, what does it say in the final report? ''Download raw DNA file'' or something like that?
  19. tiredowl

    Where you taking NSAIDs at onset of disease? Connective Tissue ? CCI

    Not back in 2008... But I was on tetracycline then. So no.. no NSAIDs other than during the flu or whatever. But my onset wasn't after having the flu. rarely take NSAIDS. I tried taking some aspirin before and was allergic to it. I will never take it again- I'm scared of taking anything besides...
  20. tiredowl

    Turmeric/Curcumin for ME/CFS?

    https://www.amazon.com/Neurobiologix-Curcumin-Topical-Cream-pump/dp/B00TVCR9K2/ref=sr_1_1_sspa?crid=TL9CPXF668US&keywords=neurobiologix+curcumin&qid=1561486548&s=gateway&sprefix=neurobiologix,aps,283&sr=8-1-spons&psc=1 Here is a topical curcumin. I wonder how this will work... I seem to have...
  21. tiredowl

    Intracellular calcium and viruses

    Learner1, Do you think it will be bad for ME patients to take it? Since we already have issues with our mitochondria working properly... maybe it could make some worse?
  22. tiredowl

    Intracellular calcium and viruses

    I see some people mentioning artesunate, does it have a negative effect on mitochondria? I remember reading somewheree that Artemisia derivatives does have an effect on mitochondria, not sure if it was good though.
  23. tiredowl

    Big Data App to Explore Genomes for Clinical Relevance, Rare Variants, Drug Response, etc (Free)

    Does this accept VCF files? If not, Where can I read VCF files?
  24. tiredowl

    Anti-inflammatory treatments given before cancer surgery and/or chemotherapy may inhibit tumor growth.

    What kind of anti-inlammatories? Very interesting
  25. tiredowl

    Adrenal cortex glandulars

    Thanks, I wish there was a brand that didn't remove all of the hormones...
  26. tiredowl

    Poll about whether you have got better or worse

    I'm now in my late twenties.. Been sick since my early teens. It's pretty bad. Can't leave my house much, and traveling far distances is a challenge. I aways get severe PEM after any extertion and struggle with attending appointments because I'm too sick to get myself there. I would like to rule...
  27. tiredowl

    Turmeric/Curcumin for ME/CFS?

    Do you mind telling me what protein powder you are using? It seems all the vegan ones are high in arginine unfortunately. EDIT: Sorry I just realized you wrote customized.. I hope to figure out my MTHFR status soon. should have tested it sooner. My methylanoic acid is normal currently. And the...
  28. tiredowl

    Big Data App to Explore Genomes for Clinical Relevance, Rare Variants, Drug Response, etc (Free)

    I have read a bit about Tenascin-X deficiency, it seems it can cause the exact same symptoms as EDS but it's hard to test for. https://www.ncbi.nlm.nih.gov/pubmed/27582382
  29. tiredowl

    Dante Labs offer for father's day (ends June 17)

    That's really discouraging... Are there any other options besides Dante Labs that provide exome testing and you actually recieve the results?
  30. tiredowl

    Adrenal cortex glandulars

    I have this one: https://klaire.com/adr-adrenal-cortex Klaire Labs Adrenal Cortex. Is this brand good? Yes, that's true but what if it means that it could have some potentially bad effects. It says that it is BSE-free at least, but I've not used it yet because I was a bit worried about that...