• 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 (FM), 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. jess100

    Does anyone else experience most of their fatigue in the afternoon?

    Hi Can you say how you know you were infected with a kiss? I ask because I got sick and a while later my then boyfriend got sick -and he was by then in another country. We suspect I gave it to him-but want to know more to talk with our doctor. Can you please tell me more about this? And have...
  2. jess100

    Newly approved Lyme test in NY

    For anyone who has tested negative for Lyme but still suspects they have it, this new test by Igenex covers more species of Borrelia burgdorferi (I hope I spelled that right) so it might be worth retesting yourself. Here is the information https://igenex.com/ Maybe someone can do a better job...
  3. jess100

    Has anyone actually cured Babesia with Buhner Protocol?

    Yes I have the book and it's very detailed and informative. It's also a long and complex protocol (mostly because I can't use tinctures and have to find equivalents in dry herb forms) And this is exactly why I want to know if anyone has actually made progress. There is a lot of discussion...
  4. jess100

    Has anyone actually cured Babesia with Buhner Protocol?

    I'm about to begin the Buhner protocol for Babesia and it occurred to me that I've never actually seen a post where someone recovered fully, or improved greatly, from Babesia using it. Does anyone have any first hand experience improving with those herbs, especially Sida Acuta and Cryptolepis?
  5. jess100

    Questions about the 24 hour saliva cortisol test

    Oddly enough I just came from the doctor who said that she wants this me to do this cortisol test, (and wants to do exactly what the OP's doc said if results are abnormal), AND results of last pee test showed exactly what you said: I'm super low in B1, B2,B3, and B5, despite taking a lot of high...
  6. jess100

    appointment with Dr. Bela Chheda from the Open Medicine Institute

    Thank you gingergrrl- I saw that post a few minutes after sending my question to him. Heartbreaking.......Is anyone in contact with his family?
  7. jess100

    appointment with Dr. Bela Chheda from the Open Medicine Institute

    I hope you can soon post how your appointment was today with Dr Chheda........
  8. jess100

    Ben and Claire's adventure to Davis-Dafoe land!

    When you are completely rested can you say what OMI found from all your tests or what was prescribed for you? I went through all the posts I could find for you and could not find it. Thanks for such inspiring writing and you've really made a difference in so many ways.
  9. jess100

    An Update on ME/CFS Research with Ronald W. Davis, PhD

    I I'm very curious about how you determined that the cause of illness in your area was those specific chemicals. This seems like very good information for research and for people in general. If you have the time and energy can you elaborate on the details?
  10. jess100

    Ben and Claire's adventure to Davis-Dafoe land!

    So true!! This is NOT the way we are usually treated by doctors. Ridiculed, or dismissed or given a prescription for something we don't have because the doc wasn't listening to us at all.
  11. jess100

    Ben and Claire's adventure to Davis-Dafoe land!

    I was treated by Dr Kaufman at OMI a few yrs ago and consider myself to be almost normal now. However, I never suffered like Whitney or Ben and many others here. I was dx with anaplasmosis, babesia, bartonella, Epstein-Barr and a few other viruses. That said, if it will be at all useful to...
  12. jess100

    Interesting reading on "normal" TSH and CFS/fibro and inflammatory diseases

    I just came across this and I'm posting it because it seems to answer the question I've seen so many times about thyroid involvement and CFS/ME. So many people ask if they can feel bad but have normal TSH levels. This answers all of it-and the relationship to chronic illnesses. There is WAY...
  13. jess100

    Transdermal B12 oils

    My current working theory is that my B12 hunger is caused not by CFS or methylation problems (in spite of my "interesting" collection of SNPs), but by mercury poisoning. Too many things point in that direction to ignore it. One of them is that B12 is protective against mercury and/or mercury...
  14. jess100

    Transdermal B12 oils

    Is the liquid also bad for the teeth? I know the sublinguals are.
  15. jess100

    Transdermal B12 oils

    Is it common to have the B-12 affect memory and word recall? Do others have that experience?
  16. jess100

    Transdermal B12 oils

    What is the reason you would use the liquid B-12 transdermally instead of orally? Is it bad for the teeth like the teeth?
  17. jess100

    I consider myself back to normal

    That is an excellent pace. The 4 miles takes us about 1.5 hours if we are focused. Do you consider yourself sick with CFS/ME ?
  18. jess100

    I consider myself back to normal

    I think I recovered because I never actually had CFS/ME. My belief is that I had viruses and tick-borne illnesses which (if I understand all this) are a clear, diagnosable illnesses as opposed to CFS/ME which is such a mystery. If I have misunderstood this I'm sure someone will correct me.
  19. jess100

    I consider myself back to normal

    You are worse than you were when you saw Kaufman? Do you know what's causing that?
  20. jess100

    I consider myself back to normal

    Can I ask how many miles you used to walk when things were normal? When I was sick I couldn't go food shopping without sleeping the rest of the day and sometimes into the next day.
  21. jess100

    I consider myself back to normal

    I'm actually a little surprised by this because I don't know many people who walk 4 miles. I feel like most ppl don't exercise much at all ( I used to be a runner so I know it's not a lot for people like that, but I don't see many ppl doing it.) Maybe I'm very wrong. If I did this every day I...
  22. jess100

    I consider myself back to normal

    Well I'm 60 and you're right that 4 miles isn't a lot. But I have a lot of "healthy" friends who wouldn't walk that far (can't or won't) Some of them are a lot younger. I had a lot of problems sleeping too which seems to have stabilized I used melatonin etc to get back on schedule. I almost...
  23. jess100

    I consider myself back to normal

    I don't think I felt any worse on the Antiviral. That's a good question about IV abx. What would be the reasons you wouldn't try it. ?
  24. jess100

    I consider myself back to normal

    I I think I was sick for over 3 years-but honestly it's all a blur. I'm retired so I am not working. I can tell you that when I was sick it would have been impossible and now I would be able to work a non-strenuous job such as teaching.
  25. jess100

    I consider myself back to normal

    HI everyone, I want to give an update because I'm well. It would be really great if I wasn't attacked for saying that I'm well. I went to OMI and saw Kaufman in 4/2015 (I had to read my email to find that date-it's all a blur). He was very thorough and found Babesiosis and Anaplasmosis as...
  26. jess100

    PCOS study at Cornell

    Women With Polycystic Ovary Syndrome (PCOS) Needed for Research Study (Cornell University) © craigslist - Map data © OpenStreetMap (google map) compensation: Yes employment type: part-time Researchers at Cornell University are examining the medical experiences and health-related beliefs...
  27. jess100

    Has anyone tried this for pain relief?

    I just came across this and wonder if anyone has tried it. It is some kind of brain stimulator, that reportedly reduces pain and insomnia and helps with depression. I don't think I even would have considered looking at the ad, except I'm reading an excellent book about depression from 2001 and...
  28. jess100

    Symptoms of Babesia?

    I'm also feeling really, really depressed for a while now-mostly in the form of absolute deadness about anything good or bad-like there is a plate of glass between me and my emotions. I know what emotions used to be there but don't really feel anything. Does anyone else with Babesia have this too?
  29. jess100

    ME Diagnosis and Genetic Testing and also, Gratitude

    Hi everyone I recently met a genomic doctor in Mexico-and wonder if she can be at all helpful to me since I already have a diagnosis of tick-borne and viruses. So would genomic information be any help to me? I was thinking no, because I already know the genesis of my illness-also I'm not sure...
  30. jess100

    Feeling helpless

    thanks Martial and I might do that. I still haven't started anything-