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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. J

    Has gene data/treatment made a real difference for you?

    Patrick- Your comment opening that thread, "but I've yet to read any success stories." is what motivated my question, exactly! I know it's probably too early to ask this, but I wanted to see if anyone has anything to report. Testing is so seductive in this illness, because we've not had much...
  2. J

    Has gene data/treatment made a real difference for you?

    Thanks Caledonia. That's at least one result!
  3. J

    Has gene data/treatment made a real difference for you?

    Like a lot of us, I'm thinking about springing for the 23andme test now that it's so cheap. But, having spent lotsa bucks over 25 years for useless treatments and tests, I am reluctant to get into another round of rigorous supplementation with little or minor result. I've read a lot of posts...
  4. J

    A Tribute To Rich Van Konynenburg

    My deep condolences to Rich's family and loved ones. When I first read the title on my feed reader I thought that there was some well earned award he was being given. It didn't register until I read further that "tribute" was referring to his death. Even now I have trouble accepting that he is...
  5. J

    A Tribute To Rich Van Konynenburg

    My deep condolences to Rich's family and loved ones. When I first read the title on my feed reader I thought that there was some well earned award he was being given. It didn't register until I read further that "tribute" was referring to his death. Even now I have trouble accepting that he is...
  6. J

    Methylation, Vitamin D intolerance-- biochemical interactions?

    Just a note to follow up my original post- since I'm on T3 & T4 for thyroid I thought some of the threads elsewhere noting that increased D might be suppressing natural cortisol, especially if it's low or being used up by thyroid supplementation, and causing a cortisol crash. One intervention is...
  7. J

    Methylation, Vitamin D intolerance-- biochemical interactions?

    Hixxy82- thanks for that tip. VDR polymorphism is one of the things that came across my screen, but I couldn't find anything on whether it might effect D tolerance. Lala- I'm currently completing a 6 month round of doxycycline & rifampin, the big guns for Cpn. No reactivity any more so my...
  8. J

    Methylation, Vitamin D intolerance-- biochemical interactions?

    Garcia & Adreno- thanks for your thoughts on this. As far as I can tell I don't have any significant sources of infection currently. That's why I'm questioning my previous explanations of die off due to immune activation and seeking some alternative mechanisms that might explain some of this...
  9. J

    Methylation, Vitamin D intolerance-- biochemical interactions?

    I have a puzzle I'm hoping the biochemically minded folk on this forum may have some insight into. Brief background: I'm 30 years into the CFS journey, having knocked back chronic infections (C. pneumoniae, chronic yeast problems), and working on methylation issues (blood test identified MTHR...
  10. J

    Vitamin D and Increase in Symptoms

    My take is similar to Lala: increases of more than 400 iu per 3-4 weeks produced reactions, but if I kept it gradual I easily worked up to my current 2400 iu dose. I have had chronic bacterial, and probably viral, infections and my Vitamin D levels were chronically low as well. Increases of 1000...
  11. J

    Tai Chi

    Hi Ronan- I've been doing, and teaching, Tai Chi for about 25 years, even throughout this crappy illness. Charityfundraiser gave a great precis of what's out there. I think it is a great structure to support leg strength, balance, overall energy, breathing, and so on. It is also a movement...
  12. J

    Springing for the Methylation Panel: have you found this worth the bucks?

    Thanks for your take on this Thanks Danny, Fredd I do understand the limitations of tests-- they are not as definitive as they seem. On the other hand, I've had tests pick up things I would never have pursued, like chronic occult infections. But that's why I thought it wise to draw on some of...
  13. J

    Springing for the Methylation Panel: have you found this worth the bucks?

    NOTE: PLEASE DON'T POST ADVICE ON IMPROVING MY CURRENT METHYLATION PROTOCOL HERE-- JUST ON THE GENE TEST QUESTION I thought I'd get the collective take on whether any of you have found the genomic testing for methylation defects worthwhile. Context: I know I have at leas one methylation...
  14. J

    Trental...anyone tried this

    Hi Soxfan- just noticed this post. I was prescribed Trental years back for a while to help counter endotoxin reactions while undergoing combination antibiotic therapy for chronic Chlamydia pneumoniae infection (you can see more about this infection at cpnhelp.org). Certain bacteria generate LPS...
  15. J

    Science asks authors to retract XMRV/CFS paper

    Amy Docker Markus reports: http://online.wsj.com/article/SB10001424052702303745304576355852212887170.html?mod=googlenews_wsj
  16. J

    What will you do if XMRV turns out not to be the answer?

    Horse Pucky ISO- Well, this is certainly helpful of you. Nice that you are qualified to diagnose questioning of the XMRV as "fear based XMRV associated thoughts..." Gee, where have we've seen the dismissal of people by invoking psychological diagnosis before? Oh yes, the CDC... And if...
  17. J

    Simplified Methylation Protocol Revised as of Today

    Thanks Rich. Could you post the link to the revised protocol. I can't seem to find it anywhere. Also, I've seen Solgar's "Folate, 800 mcg (as Metafolin)" in tablet form, much cheaper than the Folapro. I'm a bit confused as to equivalence. If this has already been posted, please direct me to the...
  18. J

    XMRV and blood transfusion: report of the AABB interorganizational XMRV task force.

    Anyone have access to the epub of this? http://www.ncbi.nlm.nih.gov/pubmed/21235597 Is it the same as what has been reported in the December meeting thread?
  19. J

    One down...

    Thanks for that interview. Someone posted it also on the Media section. It's a most impressive, concise response, especially to the "contamination" studies. I found Dr. Klein to be the most deeply knowledgeable physician I had met to date on the whole range of XMRV issues, including CFS related...
  20. J

    One down...

    Gee whiz, sorry for tone... Esther- reading my "correction" I realized how defensive my tone was. I've got a list of complaints and potential diagnoses long as my arm, but NOT THE BIG C! My list is "just" CFS/ME. It's just f---ed up my life, not dangerous, mind you. By which I mean I must be...
  21. J

    One down...

    Just to be clear, I don't have any cancer, just a rather common case of prostatitis (inflammation). The pilot study is looking at whether this diagnosis and X+ has any correlation, since they've already found it in prostate cancer.
  22. J

    One down...

    I was debating whether to spring for the full XMRV testing a while back, even bought the kit for getting the blood tests, when I got a reply from Dr. Silverman at the Cleveland Clinic, the co-discoverer of XMRV in prostate cancer. He kindly referred me to Dr. Eric Klein at the Glickman Urology...
  23. J

    OH, SNAP! Patient Advocate and NYT

    I also found PA to be right on the mark about the NYT. It has been my own most respected source of news for many years, but I have found it's coverage of CFS/ME to be poor on the whole, and absolutely missing in action on the XMRV issue. They do report seems second or third hand and is days...
  24. J

    8 months: new post by Deckoff-Jones

    Her new update describes continued improvement for her and her daughter, and a link to a superb critique of Kearney and Malderelli's diatribe against experimenting with antiretrovirals. http://treatingxmrv.blogspot.com/2010/11/8-months.html
  25. J

    Reply from nih- collins' office

    This is pretty much a form letter: nice tone but saying not much. It refers to the general fund amount, and to the scattered range of research being funded, but nothing programatic or focused in nature, except the mandate for NAID to evaluate the XMRV connection. We need to keep the pressure and...
  26. J

    Potentially Explosively Important XMRV Research at University of Missouri"

    George- Hey, that would be okay with me. My bigger worry has been whether I want to know if I'm positive or not when treatment is so unclear. Cort- It may seem things are moving fast, but I don't think this particular kind of announcement means treatment is on the way. The actuality between...
  27. J

    Potentially Explosively Important XMRV Research at University of Missouri"

    Posted at: http://www.prohealth.com/library/showarticle.cfm?libid=15687 "Work with the XMRV virus is potentially explosively important says Dr. Stefan G. Sarafianos, PhD, one of the worlds leading retroviral researchers, based at the University of Missouri. And some of the most potentially...
  28. J

    Medical research fraud

    Muffin- I'm right with you in your post that ended with: "Open your mouth to the right people. If you don't want to discuss the retrovirus then at least force the issue of getting ME/CFS funding for research and clinical trials on the medicaitons already out there and available. You don't need...
  29. J

    Medical research fraud

    I know this has been posted elsewhere, but as a cogent description of the kind of kick-ass activism I'm all for, read Mindy Kitel's post: http://www.cfscentral.com/2010/10/homographs-and-outside-voices.html
  30. J

    Interesting - XMRV & Autism

    This is why the big need for a standardized, reliable assay (test) was one of the big things to emerge from that conference a bunch of weeks ago. This will most likely emerge from the Blood group, since that is where the big anxiety among government officials is: how do you accurately screen in...