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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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  1. vitamink

    Have you been properly tested for Lyme poll?

    sorry for the late reply. i had a spect done- it showed a moderate decrease in cerebral cortical perfusion in a heterogeneous pattern. what were your results?
  2. vitamink

    Have you been properly tested for Lyme poll?

    so you didn't have any bands present?
  3. vitamink

    Have you been properly tested for Lyme poll?

    edward breitschwerdt. here's one article by him: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2546763/ and another good article on bartonella and lyme: http://archneur.jamanetwork.com/article.aspx?articleid=780359
  4. vitamink

    Have you been properly tested for Lyme poll?

    roxie60, just so you know, it's possible to get separate tests for bartonella and babesia from igenex. i had a babesia fish test done and several months later a bartonella henselae antibodies test. yes i was ultimately diagnosed with lyme, there's really no doubt about it now. i also likely...
  5. vitamink

    Have you been properly tested for Lyme poll?

    roxie60, that's great that you had the igenex test done. did you run the coinfections panel too? looking forward to hearing your results...
  6. vitamink

    Have you been properly tested for Lyme poll?

    there are actually 10 igg bands (i didn't list them all) and you have to have 5 of them to be cdc positive. i had 4 ;) for more "data", i had another western blot done at stony brook earlier this year: igm 18+, 23+, 41+, 58+, 62+, 93+ igg 41+, 58+, 64+ roxie, were you diagnosed with lyme? (i...
  7. vitamink

    Do you have these symptoms ?

    hi mayna, what test did you have to rule out lyme disease?
  8. vitamink

    Anyone feel like this?

    the unreliability of testing shouldn't stop you from looking into lyme, though. you might test positive, after all. or you might test negative and there will still be a chance that you have it. maybe you can find a specialist in the uk if your immunologist doesn't run the tests... i developed...
  9. vitamink

    Would appreciate experts interpretation of my test.

    hi phoenixburger. it seems more likely that lyme disease would be causing your symptoms, and not cmv. lyme can cause muscle twitching, stiffness, burning, pain and fatigue, among other symptoms. if you have your original lyme western blot results, would you mind posting them? k
  10. vitamink

    Would appreciate experts interpretation of my test.

    Hi PhoenixBurger, have you had thorough testing for Lyme disease?
  11. vitamink

    Question about Neurocognitive/Neuropsychological Testing

    i just had a neuropsychological evaluation with dr. leo shea in new york: http://n-e-t-s.org cfs is one of his specialties, along with lyme disease and, i believe, traumatic brain injury. the evaluation was pretty expensive but my insurance agreed to cover about 80%...
  12. vitamink

    Have you been properly tested for Lyme poll?

    Another data point: initially I had a Lyme Western Blot done (at Quest) that showed IgM 23+, 39+, and negative IgG. After several months of treatment I repeated the Western Blot (at IGeneX) and now have IgM 23-25+, 31+++, 39+, 41++ and IgG 23-25 IND, 30++, 39+, 41+, 58++. One band away from a...
  13. vitamink

    Good SPECT scan facility?

    i had a SPECT done at columbia-presbyterian in june and it showed hypoperfusion...
  14. vitamink

    ME/CFS Symptoms...New To CFS

    hi wxman, sounds like you could (also) have lyme disease. have you done thorough testing for that?
  15. vitamink

    Lists of tests

    Lyme Disease Western Blot IgG & IgM Testing for Bartonella and Babesia
  16. vitamink

    SPECT Brain Imaging in Chronic Lyme Disease

    i had an abnormal spect scan recently and the results were typical of lyme disease. i'm starting i.v. antibiotics (rocephin and possibly rifampin) tomorrow...
  17. vitamink

    Hormone levels

    hi, just wanted to update quickly. i saw the gynecologist yesterday. she said that i'm not "fitting neatly into a category" (ha). i may have pcos, she said, or i may have "hypothalamic amenorrhea".. or both. she actually suggested getting (another) brain mri, to rule out some kind of tumor i...
  18. vitamink

    detox diets & cytochrome P450 enzymes

    ah, ok. that sucks. on the other hand, if you have a bacterial infection such as lyme, chlamydia pneumonia, etc, your negative reaction might actually be a good sign. so it would be a shame to avoid antibiotics in the future if those are what you'd really need for recovery. i hope you get a...
  19. vitamink

    detox diets & cytochrome P450 enzymes

    hi kathy, maybe i missed this but why were you taking the azithromycin? karina
  20. vitamink

    Hormone levels

    hi ema, thanks again for your suggestions. i asked my doctor about trying other antibiotics, but he doesn't think that there's another oral protocol that will help me. he did refer me to another lyme specialist, though- my appointment is on monday. my doctor has actually had a number of...
  21. vitamink

    what do you think about this?

    kathyskes, have you ever been tested for lyme disease? and other bacterial infections such as bartonella, chlamydia pneumoniae, etc? often when people begin to treat those infections with antibiotics, they experience a jarisch-herxheimer reaction, where their symptoms become amplified...
  22. vitamink

    Hormone levels

    hi guys, thanks so much for your amazing comments and advice! i meant to respond earlier, but i had a nightmare of a week, filled with brain fog, panic, vertigo, fatigue, and other nice things. *ema, my doctor isn't 100% sure that i have lyme disease, but i had +igm 23 and 39 on the western...
  23. vitamink

    Hormone levels

    Hi Ema, wow, thanks for your insights. I have elevated EBV and HHV-6 titers, and it looks like I most likely have Lyme Disease. I guess those could easily be the 'underlying causes' of the HPA/O axis dysfunction... :-/ I'm attaching my two saliva cortisol tests- the first from February, the...
  24. vitamink

    Hormone levels

    Hi Ema, thanks for your response... I did the test on day 2 of my cycle (the reference ranges I included are for the follicular phase). My TSH is 0.77 (ref 0.40-4.50).. I had pretty thorough thyroid testing a few months ago and the results were all normal. Cortisol was 9.8 mcg/dL (range...
  25. vitamink

    Hormone levels

    My hormone panel just came back showing low levels of LH, FSH, estradiol and progesterone, and high levels of DHEA-S. I was wondering if anyone here has seen similar results or has any insight about this. Perhaps the problem lies in the hypothalamus/pituitary? Do the results look really bad...
  26. vitamink

    Metametrix complete GI panel results

    two doctors have told me that the 'unknown parasite' shows up for pretty much everyone they test, and that it's likely something ingested with food...
  27. vitamink

    Deep confusion at night on waking

    i've experienced this as well, usually during a crash. profound disorientation lasting up to an hour or two. can't say i found a solution but it did stop happening eventually. although i did experience this recently (not in the morning but throughout the entire day) during some episodes of...
  28. vitamink

    Help with methylation panel results?

    just another update- i received some new results. nagalase: 2.20 (ref. 0.32-0.95) brain SPECT scan: moderate decrease in cerebral cortical perfusion, in a heterogeneous pattern. ("these findings are nonspecific and may be seen with meningitis/encephalitis, lyme disease or connective tissue...
  29. vitamink

    Help with methylation panel results?

    hi roxie, true, we do have similar results (except for SAMe and 5-CH3-THF). that was your first test, right? were you on any methylation supplements already? i've been on a slightly modified version of rich's protocol: methylb12 injections, folinic acid, l-methylfolate, b-complex...