lyme_mom Posted October 27, 2010 Report Posted October 27, 2010 Our ds tested positive on IGenex band 41 (3+ symbols), and on band 31 (1 + symbol) and INDETERMINATE on bands 34 and 39. I would greatly appreciate any help. That sounds positive to me.
lyme_mom Posted October 27, 2010 Report Posted October 27, 2010 I am asking this for another mom. Have you had Lyme test, and had a positive P41 band show up? Does anyone know the significance of P41? I believe Dr. Trifiletti may have said this may indicate a flagellated microbe. How is one treated for Lyme; what antibiotics are working the best? For how long? The child was treated with azithromycin and biaxin. Thanks PacificMama posted a very interesting explanation of band 41 a while back. The gist of her explanation was that even though band 41 can also be a sign of syphilis and some other infection, these things can be easily ruled out. She said that one of the famous infectious disease doctors in the lyme controversy (one that does not believe in chronic lyme) considers band 41 to be very lyme-specific (if I remember correctly). I think that a child with symptoms that could be lyme disease who is positive for band 41 should be evaluated by a lyme doctor for a trial lyme treatment and/or tested via igenex. The other lyme tests are worthless, wrong fifty percent of the time. Anyone with band 41 who has not tested via igenex is very likely missing positive bands for 31 or 34 that are not on the non-IGENEX tests that insurance covers. The tests from labcorp, quest and other labs do not test for bands 31 and 34, important antiibodies to lyme. Because there is no definitive test for lyme there is no harm in a trial lyme treatment for a child who has symptoms that will not go away. You will get a pretty good idea if you are on the right track once treatment has been underway for a month or so. I think that most people who are positive for lyme are positive for band 41. Maybe PacificMama can point us to her previous post which was so helpful.
Fixit Posted October 27, 2010 Report Posted October 27, 2010 Our older son and younger daughter were BAND 41 positive only. On the Igenex results there are very specific instructions about requiring additional testing if one of the double starred bands is positive..... BAND 41 is a double starred band. I am so grateful we followed those instructions because we were able to find DNA of Lyme in our older 6 year old son's urine and just yesterday discovered our 3 year old son who we did not originally test for Lyme is tri-infected with BABESIA/BARTONELLA/Lyme (he does make antibodies). In our case the presence of band 41 hinted at congenital LYME for our daughter and older son which I understand is common. Again, this would take a good LLMD to sort it all out with proper testing. this is very interesting....so even if 41 only had 1 star...and 39 ind i think i need to retest me and ds...i grew up in Trenton nj..right by deleware..even though city i walked along river and lots of deer there in and in pa..we go up all the time... when we lived in Doylestown pa i took a couple off of ds...but i believe i got them quickly....
Fixit Posted October 27, 2010 Report Posted October 27, 2010 (edited) I am asking this for another mom. Have you had Lyme test, and had a positive P41 band show up? Does anyone know the significance of P41? I believe Dr. Trifiletti may have said this may indicate a flagellated microbe. How is one treated for Lyme; what antibiotics are working the best? For how long? The child was treated with azithromycin and biaxin. Thanks PacificMama posted a very interesting explanation of band 41 a while back. The gist of her explanation was that even though band 41 can also be a sign of syphilis and some other infection, these things can be easily ruled out. She said that one of the famous infectious disease doctors in the lyme controversy (one that does not believe in chronic lyme) considers band 41 to be very lyme-specific (if I remember correctly). I think that a child with symptoms that could be lyme disease who is positive for band 41 should be evaluated by a lyme doctor for a trial lyme treatment and/or tested via igenex. The other lyme tests are worthless, wrong fifty percent of the time. Anyone with band 41 who has not tested via igenex is very likely missing positive bands for 31 or 34 that are not on the non-IGENEX tests that insurance covers. The tests from labcorp, quest and other labs do not test for bands 31 and 34, important antiibodies to lyme. Because there is no definitive test for lyme there is no harm in a trial lyme treatment for a child who has symptoms that will not go away. You will get a pretty good idea if you are on the right track once treatment has been underway for a month or so. I think that most people who are positive for lyme are positive for band 41. Maybe PacificMama can point us to her previous post which was so helpful. so the non-believer thinks 41 is very lyme indicative??? did i get that right??? what tests can be done to rule out other things..... i have a panda friendly ped now...he is gun shy of long term abx and is not up all i know(which doesn't mean much) but i believe he would be willing to test for anything i ask.... does anyone know if they can draw igenex in GA...home of the cdc??? ps closest lyme doc i found is in NC...i would go..but been spending alot on this already...if i can rule in/out other things before a trip anywhere would be good Edited October 27, 2010 by Fixit
PacificMama Posted October 28, 2010 Report Posted October 28, 2010 PacificMama posted a very interesting explanation of band 41 a while back. The gist of her explanation was that even though band 41 can also be a sign of syphilis and some other infection, these things can be easily ruled out. She said that one of the famous infectious disease doctors in the lyme controversy (one that does not believe in chronic lyme) considers band 41 to be very lyme-specific (if I remember correctly). ... Maybe PacificMama can point us to her previous post which was so helpful. I will try to find it! I'm sure it was long back in response to Dr. T. It may not be until tomorrow. Mary
sf_mom Posted October 28, 2010 Report Posted October 28, 2010 Definitely retest via Igenex and perhaps with antibiotic treatment your son has turned more positive.
lyme_mom Posted October 28, 2010 Report Posted October 28, 2010 I am asking this for another mom. Have you had Lyme test, and had a positive P41 band show up? Does anyone know the significance of P41? I believe Dr. Trifiletti may have said this may indicate a flagellated microbe. How is one treated for Lyme; what antibiotics are working the best? For how long? The child was treated with azithromycin and biaxin. Thanks PacificMama posted a very interesting explanation of band 41 a while back. The gist of her explanation was that even though band 41 can also be a sign of syphilis and some other infection, these things can be easily ruled out. She said that one of the famous infectious disease doctors in the lyme controversy (one that does not believe in chronic lyme) considers band 41 to be very lyme-specific (if I remember correctly). I think that a child with symptoms that could be lyme disease who is positive for band 41 should be evaluated by a lyme doctor for a trial lyme treatment and/or tested via igenex. The other lyme tests are worthless, wrong fifty percent of the time. Anyone with band 41 who has not tested via igenex is very likely missing positive bands for 31 or 34 that are not on the non-IGENEX tests that insurance covers. The tests from labcorp, quest and other labs do not test for bands 31 and 34, important antiibodies to lyme. Because there is no definitive test for lyme there is no harm in a trial lyme treatment for a child who has symptoms that will not go away. You will get a pretty good idea if you are on the right track once treatment has been underway for a month or so. I think that most people who are positive for lyme are positive for band 41. Maybe PacificMama can point us to her previous post which was so helpful. so the non-believer thinks 41 is very lyme indicative??? did i get that right??? what tests can be done to rule out other things..... i have a panda friendly ped now...he is gun shy of long term abx and is not up all i know(which doesn't mean much) but i believe he would be willing to test for anything i ask.... does anyone know if they can draw igenex in GA...home of the cdc??? ps closest lyme doc i found is in NC...i would go..but been spending alot on this already...if i can rule in/out other things before a trip anywhere would be good I found Pacificmama's post about band 41. I had sent it to someone and so it was in a sent email. http://www.latitudes.org/forums/index.php?showtopic=7018&pid=56240&mode=threaded&start=#entry56240
Josey1 Posted October 28, 2010 Report Posted October 28, 2010 (edited) I have recently had an appt. with Dr. T. mentioned on this forum for a PANDAS evaluation. I asked alot of questions about some things I have read and I did question about Lyme disease (which we had already done tests last year thur LabCorp.) We had a very interesting conversation in his office, but I also emailed him some follow up questions I had on everything we talked about. This was his response about a question about lyme and what some where asking about the band 41 for anyone interested. He did mention that many patients, PANDAS or not, do seem to have band 41 positive. "Once again p41 does NOT equal PANDAS. In fact, Madeline Cunningham (who is also a Prof of microbiology at U.OK) believes the source of p41 is Treponema denticola, a common oral bacteria. So maybe it simply reflects how well you brush your teeth." Edited October 28, 2010 by Josey1
sf_mom Posted October 28, 2010 Report Posted October 28, 2010 (edited) I am very grateful we pursued alternative testing when our children were band 41 positive only. We now have positive DNA for LD in our older son and positive antibody testing for our younger son of Bartonella and Babesia. -Wendy Edited October 28, 2010 by SF Mom
philamom Posted October 28, 2010 Report Posted October 28, 2010 Although Band 41 isn't specific to Lyme, it's usually the first band to show up. If I had a positive band 41 only, I would do additional testing with another lab or re-test with Igenex in 4-6 weeks. Or consider seeing an llmd.
P_Mom Posted October 28, 2010 Report Posted October 28, 2010 Josey1, Great post! Band 41 is not at all Lyme specific and shows up in almost half of the "normal" population. As you mentioned, Cunningham says it is caused by normal oral flora....you don't have to have any kind of gum disease...it just normally exists. Even MANY LLMD's say band 41 is of no significance.
PacificMama Posted October 28, 2010 Report Posted October 28, 2010 Dr. T. … This was his response about a question about lyme and what some where asking about the band 41 for anyone interested. He did mention that many patients, PANDAS or not, do seem to have band 41 positive. "Once again p41 does NOT equal PANDAS. In fact, Madeline Cunningham (who is also a Prof of microbiology at U.OK) believes the source of p41 is Treponema denticola, a common oral bacteria. So maybe it simply reflects how well you brush your teeth." This notion of inaccurately attributing dental spirochetes to band 41 is addressed by a lyme doctor, which was cited in this post: http://www.latitudes...art=#entry56240 Band 41 appearing by itself usually warrants further investigation and clinical evaluation by a Lyme expert. Josey1, Band 41 is not at all Lyme specific and shows up in almost half of the "normal" population. I’m not familiar with the science that states that half the “normal” population is Band 41 positive. Could you provide further info/citation. Thanks.
P_Mom Posted October 28, 2010 Report Posted October 28, 2010 (edited) Whan I find the site I found that statistic on...I surely will! But, what is the point?? It seems that something can only be true if a LLMD says it is! I don't feel what that LLMD has to say is any more valid or reliable than what Dr. T and Cunningham have to say about it. Edited October 28, 2010 by P.Mom
mama2alex Posted October 28, 2010 Report Posted October 28, 2010 PacificMama, Can you repost the link? I clicked on it, but only got "Internet Explorer cannot display this web page." Thanks! Dr. T. … This was his response about a question about lyme and what some where asking about the band 41 for anyone interested. He did mention that many patients, PANDAS or not, do seem to have band 41 positive. "Once again p41 does NOT equal PANDAS. In fact, Madeline Cunningham (who is also a Prof of microbiology at U.OK) believes the source of p41 is Treponema denticola, a common oral bacteria. So maybe it simply reflects how well you brush your teeth." This notion of inaccurately attributing dental spirochetes to band 41 is addressed by a lyme doctor, which was cited in this post: http://www.latitudes...art=#entry56240 Band 41 appearing by itself usually warrants further investigation and clinical evaluation by a Lyme expert. Josey1, Band 41 is not at all Lyme specific and shows up in almost half of the "normal" population. I’m not familiar with the science that states that half the “normal” population is Band 41 positive. Could you provide further info/citation. Thanks.
PacificMama Posted October 28, 2010 Report Posted October 28, 2010 PacificMama, Can you repost the link? I clicked on it, but only got "Internet Explorer cannot display this web page." Not sure why it's not working... scroll up above a bit to a post by LymeMom, she has the link posted in the bottom of her post and it works.
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