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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. Creekee

    Serious Newbie here, How do I interpret my results from AnalzyeMyGenes?

    @Valentijn How 'bout AG for: i5007108 i5008901 ? Thanks!
  2. Creekee

    Mycoplasma Testing

    I've recently starting seeing a nurse practitioner who specializes in chronic infections. She's dxd mycoplasma infection based on extremely high IgG number. And is willing to treat, based on same. One of the things she's recommending is a transfer factor (Plasmyc). Does anyone have any...
  3. Creekee

    severe osteoporosis

    What are the implications of bone loss with high serum calcium levels? No evidence of parathyroid problems. Thanks for all the good direction!
  4. Creekee

    Protomyxzoa

    Has anyone heard of an ILADS treatment protocol for protomyxzoa? o_O
  5. Creekee

    Valtrex vs. Acyclovir

    Do you get a reaction when you start acyclovir? After recent abx startups :sluggish:, I'm feeling gunshy. Fwiw, my provider is using acyclovir as a test of antivirals because it's covered by my insurance. If it seems to do anything positive, we'll look at a more aggressive antiviral. But I'll...
  6. Creekee

    Antibiotics

    Hi Daffodil, I'm also having a bitch of a time on minocycline. This is week ten for me and I've got fluey symptoms, sore throat, dizziness and nausea. It's icky. A year ago I did six months of doxycycline and that was even worse! My practitioner has me taking colostrum. Also just ordered...
  7. Creekee

    Common rarity in 7 out of 7 ME/CFS patients based on 23andMe results

    Valentijn, I managed to get one of your programs to run. Is this of any help? rs13136923 TT rs17712772 AA rs8176928 GG rs2792379 TT rs5746879 CC
  8. Creekee

    FDA Orders 23andMe to Stop Providing Genetic Analysis.

    Methinks the potential for big money is attracting this attention. Per Bloomberg: "UnitedHealth Group Inc., the largest publicly traded U.S. health insurer, raised concern in a March 2012 report about the accuracy and affordability of the tests. Such types of genetic tests may become a $25...
  9. Creekee

    Lyme testing

    roxie60: I agree with Sushi and vamah. Get your results. And push for those other tests. Mycoplasma, too. Fwiw, I'm now positive by lab for EBV, HHV-6, protomyxzoa rheumatica and mycoplasma, yet my Advanced Lab culture came back completely negative for Lyme. My CD57 is currently 40. So either...
  10. Creekee

    Lyme testing

    Gonna jump in here to say my new Lyme literate, Burrascano and ILADS following provider had me send blood to Advanced Labs for their spirochete culture. That's after an inconclusive ELISA, a completely negative Labcorp Western Blot (both ordered by previous provider) and a clinical diagnosis of...
  11. Creekee

    Have you been properly tested for Lyme poll?

    LOL! Thanks, @vamah. Now I'm gonna laugh TWICE each time! :rofl::lol: :rofl::lol: :rofl::lol:
  12. Creekee

    Have you been properly tested for Lyme poll?

    Roxie...CUZ! How cool is that? I've so rarely come across any of our type. Is U5a1a1 your maternal haplo? I'll be here celebrating new family! :hug:
  13. Creekee

    Have you been properly tested for Lyme poll?

    Anyone else laugh each time they read the title of this thread? What the heck is "proper" Lyme testing???
  14. Creekee

    Doxycycline

    @Daffodil Chronically since April of 1980. Prior to that, a series of miscellaneous problems (strep, ulcer, mono). Major crash in July of 2011, thanks to STILL not understanding that I could overdo things. :oops::oops: Had five not-so bad days last week with the mino. Maybe things are lookin'...
  15. Creekee

    Doxycycline

    Hi @Daffodil, So sorry you're struggling with the abx. And diet. It's a complicated process, isn't it? I've been on the mino now for about seven weeks. I got my usual side effects right away: increased body pain, headache. Those lasted a little over a week. Then I got fluey stuff, dizziness...
  16. Creekee

    Doxycycline

    YES. Six months of doxy in 2012 almost killed me. Is that what you're taking? Now struggling with minocycline. Ick ick ick. :alien:
  17. Creekee

    Interesting COMT Variations

    Thanks for all the info, Valentijn! I am a bit COMT confused here. Genetic Genie says: COMT V158M AA +/+ COMT H62H TT +/+ COMT P199P AG +/- Started a methylation protocol for the first time in early March. Ever-tweaking, but so far unable to trigger any...
  18. Creekee

    Common rarity in 7 out of 7 ME/CFS patients based on 23andMe results

    Hubby (completely healthy for our purposes) and I are both CC. I am historically ME-diagnosed but recently confirmed Lyme and co-infections... Thanks for pursuing this, Valentijn!
  19. Creekee

    Could treating mono/glandular fever stop ME ever happening?

    I can vouch for the ancient mono ala 1978 being severe... :alien:
  20. Creekee

    Trying the Methylation Protcol for the second time

    Valentijn, Could you explain this a bit more? I am all "no call" on that first batch. Big thanks!
  21. Creekee

    Researchers identify bacteria as possible trigger for MS

    Also, Stephen Fry claims he finds his protomyxzoa rheumatica cootie in virtually all his MS patients. Yet another possible trigger...
  22. Creekee

    A LOT of totally incorrect/wrong information and advice given

    Hi Leokitten, and welcome. You've caused quite a stir. Obviously, as a group, we're a bit of a battered bunch. Hopefully, you will stick with us as we can always use another sharp thinker. Meanwhile, happy to have you aboard and looking forward to more interesting posts from you!
  23. Creekee

    Should I take the steroids or not? Advice sought

    Hellooo Sian, You may want to try some Vitamin K for the osteo... Big hug!
  24. Creekee

    Just found out I have active lyme disease. I am stunned. Help!

    Hi roxie60, So sorry you're having to deal with this. It's a long and complicated road, for sure. Regarding Quackwatch: this is not the first time I have found this site to be misinformed and biased. Just my opinion, of course. Any time I come across something like this (copied from middle...
  25. Creekee

    Anyone feel worse with CPAP/BiPAP?

    Things that helped hubby's complex sleep apnea (combo of obstructive and central): - Meticulous adjustment of the machine. His pulmo has him on high pressure, short breaths. Exact recipe has been micro-tweaked over and over to reduce episodes. Badger your doctor 'til it's right! - Addition...
  26. Creekee

    Info about dr Eric Gordon, Santa Rosa, CA?

    I heard from someone in Arizona who is currently seeing Elizabeth Large, in the same practice. After a long hunt for a competent practitioner, this lady told me she is really pleased. Dr. Large is treating her and her daughter for Lyme.
  27. Creekee

    Need Help interpreting new test results: EBV, Lyme, EKG

    Hi BFG. Was wondering where you're at on things now? We have a lot of similar test results (EBV, HHV6, mycoplasma). I'm negative for Lyme via Western Blot ad PCR, but have recently gotten a clinical diagnosis for Lyme and Bartonella. Also positive by PCR for protomyxzoa rheumatica and have...
  28. Creekee

    Dr Gordon Skinner, UK?

    justy, Fwiw, I had the same experience with Armour. Getting increasingly hypo the longer I took it. My problem turned out to be high reverse T3. Sounds like that's common for those of us with chronic infection/inflammation. Our bodies convert too much T4 to reverse T3, and end up without...
  29. Creekee

    Beaver gets Lymed. (Trimethoprim, Plaquenil?)

    Thanks for the update, Monsieur Beaver! Wish you were seeing a more solid improvement. Although mowing the lawn totally wowed me. Will you let us know what you decide about continuing abx treatment? Things you make me contemplate: - The up-and-down-ness. Hate this. - The lose-lose of...
  30. Creekee

    Beaver gets Lymed. (Trimethoprim, Plaquenil?)

    beaverfury: how are you doing these days? Interested in your current take on abx treatment. Hoping you're seeing mucho improvement...