mama2alex Posted May 2, 2013 Report Share Posted May 2, 2013 My daughter received a positive result from the new culture with Advanced Lab, if anyone has any questions. We ran it in December of 2011. They sent us a picture of the spirochetes in her blood sample. A speaker from the lab will be at a lyme meeting I hope to attend Monday. I will post if any new information is shared. I just received a positive culture from Advanced Labs (on myself) last week. I've read the Eva Sapi study, and an article quoting Dr. Burrascano, but am wondering if you learned anything interesting at the Lyme meeting Monday. From what I can tell, this is far and away the most solid test yet, with no false positives in the study and only 6% false negatives when compared with CDC surveillance results. The speaker has been postponed until the fall. They are in the midst of 2 validations studies and have put a hold on all public speaking engagements until completed. Thanks, good to know. JDuffner 1 Link to comment Share on other sites More sharing options...
mommybee Posted June 4, 2013 Report Share Posted June 4, 2013 (edited) l Edited June 4, 2013 by mommybee Link to comment Share on other sites More sharing options...
Hopeny Posted January 14, 2014 Author Report Share Posted January 14, 2014 I am just bumping this up for folks that are new to the forum. I know there are differing opinions on this topic, so just offering this up for consideration. In my own case, having lots of information available to help me to understand and make decisions has been incredibly helpful Link to comment Share on other sites More sharing options...
Rachel Posted January 14, 2014 Report Share Posted January 14, 2014 Thanks for bumping this up. I will go back and check on what labs ran these test. Rachel Link to comment Share on other sites More sharing options...
Hopeny Posted January 14, 2014 Author Report Share Posted January 14, 2014 Rachel it would be good to see which bands came up ind or positive to see if your son showed responses for Lyme specific reactions, the ones listed in my post being the ones generally agreed by the ilads doctors to be significant. Link to comment Share on other sites More sharing options...
Rachel Posted January 15, 2014 Report Share Posted January 15, 2014 I checked my son's testing for lyme. It is all negative, even the testing for co-infections. However, this testing was done at a hopital lab in house. Not sure how accurate this testing is. When my son's health condition went downhill ( symptoms were stiff neck, slured speech, fatigue, severe headache, and hypersensitivity), this hospital admitted him. All testing came back negative except the tilt table test and a low IgA. I am going to request that this testing be ran again and sent to a different lab. If my son has lyme disease or a coinfection, will it still show up on a test? Or does the infection have to be active? Does it hid in the cells? It's been over three years since his illness started. Rachel Link to comment Share on other sites More sharing options...
Dedee Posted January 15, 2014 Report Share Posted January 15, 2014 You just need to make sure you have the lyme test ran through Igenex and then read the initial post and compare the results to the bands mentioned there. Do not rely on a physician to give you your diagnosis unless you know for sure you have an experienced LLMD. Dedee Link to comment Share on other sites More sharing options...
Hopeny Posted January 15, 2014 Author Report Share Posted January 15, 2014 (edited) The spirochete changes forms which make it difficult to detect. Igenex tests for many more strains of the Lyme bacterium, as does stonybrook which takes insurance. Another issue with labs is they don't report all bands which are needed for assessment. Igenex reports all bands and stonybrook will if you specifically request it. Western blot on its eon is not a definitive test. Rachel as well it takes 4-6 weeks for antibodies to start showing after infection do typically tests they are run when symptoms first appear will come back clear.thats what happened in my daughters case so Lyme was erroneously ruled out. People have different Lyme specific bands at different times. To show you how flawed the tests are, my daughter came up igm positive (active infection) for Lyme a year after heavy treatment and for a chronic case. That's why it's important to work with an llmd who understands the tests. Given your geographic location, limited resources and situation personally I wd ask the cardiologist to send to stonybrook report all bands, and to test for co infections including Rocky Mountain spotted fever to regular labs. This will be a start . I believe ilads can provide a resource to work with your cardiologist in terms of testing, evaluation and treatment just my thoughts... Edited January 15, 2014 by hopeny Link to comment Share on other sites More sharing options...
Hopeny Posted April 30, 2014 Author Report Share Posted April 30, 2014 I'm just bumping this up for others that may find it useful. I understand there are different views however I have personally found it helpful to understand the basic camps, science and background in making assessments for my kids. Link to comment Share on other sites More sharing options...
Hopeny Posted June 25, 2014 Author Report Share Posted June 25, 2014 I'm bumping this up Link to comment Share on other sites More sharing options...
chubbermommy Posted June 26, 2014 Report Share Posted June 26, 2014 Interesting. My son's positive results for IgM are: 28 kDa + 31 kDa IND 39 kDa + 41 kDa ++ 83-93 kDa + everything else is -. Now from these results, can you tell if there are any co-infections present, that we should test for? We also tested for B.duncani which came out negative. Link to comment Share on other sites More sharing options...
rowingmom Posted June 27, 2014 Report Share Posted June 27, 2014 (edited) You can't tell which coinfections are present from the Western Blot. The WB tests specifically for the presence of Borrelia antibodies. Your son is positive for kDa 39, 83-93 which are specific for lyme, indicating that he has been exposed to the Borrelia bacteria. You are right to investigate coinfections as lyme rarely travels alone. You should test for any of the coinfections that are common in your area. In the St Lawrence area I would at least test for bartonella and both babesias. Our LLMD tested for lyme, B microti, B duncani, ehrlichiosis, B henselae. We live in Niagara. Our veterinarian has a map showing the movement of RMSF into the St Lawrence area as well. This is not a link to the map (I couldn't find it) but does indicate that vets in the Kingston area are finding transmission of RMSF in animals. http://www.stlawrencevetservices.com/heartworm.htm DD returned very positive for B henselae, but negative for the babesias. Her best improvements in cognitive/executive function however, have been gained with antimalarial/antiprotozoan abx and herbal treatments. Just because our babesia tests returned negatively doesn't rule out infection by other untested protozoan parasites. Edited June 27, 2014 by rowingmom Link to comment Share on other sites More sharing options...
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