Johnsmom Posted October 28, 2010 Report Posted October 28, 2010 How many DONT have Lyme? Please chime in!
marylandmom Posted October 28, 2010 Report Posted October 28, 2010 We do not either. Low ASO but high CamKinase ( 157)
dcmom Posted October 28, 2010 Report Posted October 28, 2010 We don't believe we have Lyme. Let me add another part to this question: has anyone had a negative Igenex? (we have not done igenex)
PhillyPA Posted October 28, 2010 Report Posted October 28, 2010 We don't have Lyme. Dr. Fallon, Lyme expert, does not use Igenex labs.
sf_mom Posted October 28, 2010 Report Posted October 28, 2010 (edited) Two of our three children were negative for Lyme via Igenex (band 41 positive only). We did not unravel the presence of Lyme until we did DNA testing for our older son. We just got our younger son's results on Tuesday and he is our only child who makes antibodies and is positive for Bartonella (can be passed congenitally) and Babesia (not sure if its passed congenitally yet... the LLMDs have differing views). He too is serologically negative for Lyme but they believe it is there. It truly takes an experienced LLMD to unravel if Lyme is present and do proper testing with appropriate speciality labs. Please remember if the child suffers from Congenital Lyme their bodies may not recognize the bacteria as foreign and may not make antibodies to the bacteria. In these situations, alternative testing that is not antibody related would be required. Also remember if your child has elevated binding immune complexes it would potentially produce false negative with any testing and alternative testing would be required too. While at our Dr.'s office on Tuesday I spoke with a women who has two boys 8 and 10 years old with most likely congenital LYME. One of their boys was symptomatic for five years before they were able to figure out it was Lyme and both are being successfully treated. The mother is positive for LD but has absolutely no symptoms. In her situation, they do not aggressively treat because her immune system is handling the bacteria on its own. In our situation, I was symptomatic and I am being treated. I have a copy of Dr. Ann Corson's - Pediatric Lyme Specialist slide presentation from the most recent conference in PDF format. If anyone would like a copy please PM me your e-mail address and I'll happily forward it on. I saw the conference and she specifically addressed the issues/strains related to Western PA which rivals for the top most Lyme intense area of our country with CT. -Wendy Edited October 28, 2010 by SF Mom
Phasmid Posted October 28, 2010 Report Posted October 28, 2010 My son is negative, band 41 only, by Western blot through Specialty labs.
Fixit Posted October 28, 2010 Report Posted October 28, 2010 How many DONT have Lyme? Please chime in! we were told no...by a panda doc and a dan doc(who treats pandas)Not yet seen a llmd band 41 + And 39 ind... i think i believe that to be true,as we did ok with burst, great with taper and we maybe continuing to heal...sllllooooowwwwwwllllyyy, but why the band 39 ind(though ds has had bad sleep patterns, periods of not getting enough air and a couple of things that might be susspicious..i still think his is pan/pits(wouldn't lymes be pits)...not so much parasite..or maybe it is a parasite that might not be lymes) i just need to get my energy together and go seen a llmd to be sure...i would like to retest ds and test me... i am native NJ..lived along parts of delaware most of life...after stint in ga we lived in pa with ds..and frequent va, pa, nj, md, ct
JAG10 Posted October 28, 2010 Report Posted October 28, 2010 We don't have Lyme. Dr. Fallon, Lyme expert, does not use Igenex labs. What lab does he use? Whatever your insurance dictates? Someone on the Lyme forum said Quest was the worst lab...so would he use those results?
PacificMama Posted October 28, 2010 Report Posted October 28, 2010 Not sure if you are trying to take an actual poll? If so, it seems more accurate to ask if people (their children) have been evaluated and tested for lyme / other tick borne infections by a experienced lyme physician. And if so, are they negative? It seems to me that about 90% of the posters on this forum are coming from lyme endemic regions. It is the same states over and over and over -- with a percentage of states that never show up here. Is that really a coincidence? In my opinion, any poster coming from a lyme endemic region with PANDAS symptoms can not say they do not have a tick borne infection unless they have been properly evaluated and tested for such. EVEN if they have strep problems.
matis_mom Posted October 28, 2010 Report Posted October 28, 2010 (edited) In my opinion, any poster coming from a lyme endemic region with PANDAS symptoms can not say they do not have a tick borne infection unless they have been properly evaluated and tested for such. EVEN if they have strep problems. In our family's case, I think we have strep problems BECAUSE OF LYME! I mean, most people handle strep just fine, and they only get it once in a while. Our family has had it almost on a monthly basis each spring and fall after moving to 14 acres with woods... Another thing is most of the time there are NO symptoms (other than DS's mental stuff), which I think indicates we are not mounting a normal response to it, especially when some of us (ie., mom) do not even respond to the regular abxs. Lyme is known to cause immune problems, goes on a 4 week cycle, and people report "flares" each spring and fall... too much of a coincidence! Edited October 28, 2010 by mati's mom
Chemar Posted October 28, 2010 Report Posted October 28, 2010 How many DONT have Lyme? Please chime in! Just steering this back to what the original question was
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