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Positive 41 band, Borrelia Burgdorferi Antibody


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My dd age 10 who has PANDAS was tested for LYMES because of severe ankle, knee, leg pain and unable to ambulate for more than a few minutes without being in severe pain. I pressed with our Pediatrician to test her, whom didnt bellieve it was LYMES and stated you cant get LYMES here in our area ! (southern midd tenn) My dd's 1st labs came back with bands 23, 41, 58 positive. Our ped. had us come back to retest because she called the lab and thought it was false positives! So we punished our dd by resticking her and the second time we got all negitives, except band 41, Borrelia. Our ped. told us she called the lab again (Quest Diagnostics) and the tech told her it was from a dog bite and not a "pathogen" so no need to treat. Ok, I'm not sure they know what they are talking about ! Anyone with LYMES knowledged would be so helpful to me right now. (My dd is awaiting an appt end of June at All Childrens, Fl. for some REAL PANDAS help.) And yes, leg, joint pains can be PANDAS related, Just r/o LYMES. She has had Tons of tick bites, we live at base of mountain in woods ! The lab tech that works at my facility stated he believed all ticks carry LYMES, it just depends on the individual's immunity as to if they actually contact it. ( please know thats not my quote though !) Thanks in advance.

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We are just at the beginning of our Lyme's journey after battling PANDAS among other things for the last two years. Find a Lyme Literate Doctor (LLMD) in your area ASAP and consult with them.

 

I believe this organization can send you info for LLMD's in your area. http://www.ilads.org/

 

We just saw an LLMD in Columbia, MO last week and I believe he has a practice in Cape Girdau (SP?) as well which is closer to TN (?).

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We are just at the beginning of our Lyme's journey after battling PANDAS among other things for the last two years. Find a Lyme Literate Doctor (LLMD) in your area ASAP and consult with them.

 

I believe this organization can send you info for LLMD's in your area. http://www.ilads.org/

 

We just saw an LLMD in Columbia, MO last week and I believe he has a practice in Cape Girdau (SP?) as well which is closer to TN (?).

Thanks for that website. I didnt realize how the symptoms are so much like PANDAS symptoms. Do you think in finding a LLMD, that it should be one that is also a PANDAS believer?

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Well for myself-yes I believe it is important that the Doc also believes in PANDAS (or has at least heard of).

 

There is another Doc who has an office in IA & IL that some members on this forum see. We have an appt with him in June for a second opinion because it sounds like he is familiar with the other illness my dd has called EE.

 

Check your PM's

Edited by ShaesMom
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One of my dd9's primary symptoms was pain and she would have episodes where she could not walk for a week at a time. She has pandas and has also shown positive for lyme. However, her first lyme tests came back negative (positive for band 41 and IND for bands 31 and 34). Based on symptoms, she was treated for lyme for 3 months, retested and now her tests come back positive.

 

Can you get the Igenex testing done? I agree that an LLMD is needed and one that knows about pandas would be good.

 

Susan

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My ds's lyme test is still being processed (not that I would know anything anyway ) but I read something with band 41 in pandas forum. Maybe you read it already but here you are

http://www.latitudes.org/forums/index.php?showtopic=13364

I totally missed this post!! Very interesting, thanks for showing me.

and if your ds's comes back positive, please send me a message, I think your ds is PANDAS? Right? I'd be very interested in knowing what you get! Thanks.

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My dd age 10 who has PANDAS was tested for LYMES because of severe ankle, knee, leg pain and unable to ambulate for more than a few minutes without being in severe pain. I pressed with our Pediatrician to test her, whom didnt bellieve it was LYMES and stated you cant get LYMES here in our area ! (southern midd tenn) My dd's 1st labs came back with bands 23, 41, 58 positive. Our ped. had us come back to retest because she called the lab and thought it was false positives! So we punished our dd by resticking her and the second time we got all negitives, except band 41, Borrelia. Our ped. told us she called the lab again (Quest Diagnostics) and the tech told her it was from a dog bite and not a "pathogen" so no need to treat. Ok, I'm not sure they know what they are talking about ! Anyone with LYMES knowledged would be so helpful to me right now. (My dd is awaiting an appt end of June at All Childrens, Fl. for some REAL PANDAS help.) And yes, leg, joint pains can be PANDAS related, Just r/o LYMES. She has had Tons of tick bites, we live at base of mountain in woods ! The lab tech that works at my facility stated he believed all ticks carry LYMES, it just depends on the individual's immunity as to if they actually contact it. ( please know thats not my quote though !) Thanks in advance.

 

 

It is just bias and stupidity, nothing else, that would lead the doctor or technician or anybody to conclude that the test with bands 23 and 41 and 58 positive was "wrong" and the test with band 41 is "right". Why do they do this? Because it is easier for them, somehow, to pretend that your dd doesn't have lyme disease. Why the need to pretend, I don't know, perhaps it's too hard to treat, so prefer to avoid it. In any case, PANDAS symptoms with pain in muscles and/or joints with at least one of the lyme bands positive suggests that at least a trial treatment for lyme disease is in order, 1 band positive or 3 bands positive.

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I've got to second Michael on this. We all know the old axiom of doctors that reminds them they are supposed to be treating patients not lab tests, but somewhere along the way, many of them seem to have forgotten it. How bizarre is it that a patient would present with symptoms consistent with Lyme & a positive test to boot & the doctor would re-test because they cannot accept the possibility? That kind of close-minded clinical thinking is too scary; frankly, Lyme or not, I would not return to a doctor like that.

 

Reporting of Lyme is not mandatory so the numbers are much higher than those given. And it's not like Lyme has stayed in CT (or that it was exclusive to that area to begin with). Why is it so hard for doctors to accept the high probability that it is not staying put in so-called endemic areas?

Edited by GraceUnderPressure
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And it's not like Lyme has stayed in CT (or that it was exclusive to that area to begin with). Why is it so hard for doctors to accept the high probability that it is not staying put in so-called endemic areas?

 

I saw well knows Celiac doctor and researcher yesterday at the gluten free expo in my town, Dr. Fasano. He was talking about how in the past, they said Celiac was just a northern european problem, like someone drew a line down the globe and said all the Celiac's get on one side and everyone else on the other. That thought has changed by now so hopefully it will continue to get out there about lyme.

 

I thought a lot about lyme in his speech because so much of the symptoms overlap. He said that they don't know why the presence of celiac has increased so much over the past 20 years. They've been doing a study since 1974 (not sure the specifics of what the study was) but what they found was the result of the study was that the number increased every 10 years by (don't quote me...) triple I think. I could not help but wonder if these people have lyme disease and it triggered their Celiac. Because they also don't know why some people can have the specific gene and never get Celiac.

 

I did not get a chance to talk to him about it but I hope to try to email him. I really want to know his thoughts on the subject.

 

Sorry, went off on a tangent there!

 

Susan

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And it's not like Lyme has stayed in CT (or that it was exclusive to that area to begin with). Why is it so hard for doctors to accept the high probability that it is not staying put in so-called endemic areas?

 

I saw well knows Celiac doctor and researcher yesterday at the gluten free expo in my town, Dr. Fasano. He was talking about how in the past, they said Celiac was just a northern european problem, like someone drew a line down the globe and said all the Celiac's get on one side and everyone else on the other. That thought has changed by now so hopefully it will continue to get out there about lyme.

 

I thought a lot about lyme in his speech because so much of the symptoms overlap. He said that they don't know why the presence of celiac has increased so much over the past 20 years. They've been doing a study since 1974 (not sure the specifics of what the study was) but what they found was the result of the study was that the number increased every 10 years by (don't quote me...) triple I think. I could not help but wonder if these people have lyme disease and it triggered their Celiac. Because they also don't know why some people can have the specific gene and never get Celiac.

 

I did not get a chance to talk to him about it but I hope to try to email him. I really want to know his thoughts on the subject.

 

Sorry, went off on a tangent there!

 

Susan

 

I think it may be a very correct tangent.

 

As a family of four with three having serious GI issues and now the likely possibility of Lymes I'm really leaning towards thinking that the Lymes may have caused the GI issues. Eosinophils are white blood cells that attack PARASITES. My daughter and son both have high numbers of them in their esophagus and dd has them in her colon and stomach as well. I was supposed to have a scope in March but had to sideline it due to other health issues.

 

I know eosinopils have nothing to do with celiac disease but myself and both the kids have tested positive for non-celiac gluten sensitivity thru Entrolab and my ds's scope also showed the 1st signs of celiac but again not enough damage for a dx.

 

No family history of NCGS or celiac until me--and I was the one with the bullseye rash.

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I think it may be a very correct tangent.

 

As a family of four with three having serious GI issues and now the likely possibility of Lymes I'm really leaning towards thinking that the Lymes may have caused the GI issues. Eosinophils are white blood cells that attack PARASITES. My daughter and son both have high numbers of them in their esophagus and dd has them in her colon and stomach as well. I was supposed to have a scope in March but had to sideline it due to other health issues.

 

I know eosinopils have nothing to do with celiac disease but myself and both the kids have tested positive for non-celiac gluten sensitivity thru Entrolab and my ds's scope also showed the 1st signs of celiac but again not enough damage for a dx.

 

No family history of NCGS or celiac until me--and I was the one with the bullseye rash.

 

I heard back from the doctor and he did say that they have had many cases where lyme disease has triggered celiac so I assume the non-celiac gluten intolerance too as well as so many other things. I believe (I hope) lyme will eventually become something that is screened for with any major health issue. I just don't know how long it will take to get to that point with all the political stuff going on.

 

Susan

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My dd age 10 who has PANDAS was tested for LYMES because of severe ankle, knee, leg pain and unable to ambulate for more than a few minutes without being in severe pain. I pressed with our Pediatrician to test her, whom didnt bellieve it was LYMES and stated you cant get LYMES here in our area ! (southern midd tenn) My dd's 1st labs came back with bands 23, 41, 58 positive. Our ped. had us come back to retest because she called the lab and thought it was false positives! So we punished our dd by resticking her and the second time we got all negitives, except band 41, Borrelia. Our ped. told us she called the lab again (Quest Diagnostics) and the tech told her it was from a dog bite and not a "pathogen" so no need to treat. Ok, I'm not sure they know what they are talking about ! Anyone with LYMES knowledged would be so helpful to me right now. (My dd is awaiting an appt end of June at All Childrens, Fl. for some REAL PANDAS help.) And yes, leg, joint pains can be PANDAS related, Just r/o LYMES. She has had Tons of tick bites, we live at base of mountain in woods ! The lab tech that works at my facility stated he believed all ticks carry LYMES, it just depends on the individual's immunity as to if they actually contact it. ( please know thats not my quote though !) Thanks in advance.

I think a very large percentage of PANDAS cases involve other infections like lyme. I don't think the PANDAS doctors understand this well enough yet. They are not wise to the ways of lyme and other tbds and how many sneaky manifestations of these diseases you can have. Your case sure sounds like lyme and those results are indicative of lyme especially given the symptoms. Band 23 is very specific to lyme and I would not call it a false positive but a red flag. These so called PANDAS symptoms are just a list of characteristics that many PANDAS patients have. It is quite possible that many of these "PANDAS" cases are really lyme or bartonella or babesia.

I'd get a new doctor. That's what we did when we realized how clueless ours was about Lyme. If you can locate a good ilads trained lyme specialist that is all you need. Once we found a good lyme doctor he became our family doctor. Can't go back to the clueless, uninformed doctors again... Ours is also holistic so he is really different. The big name hospitals are not any good at treating lyme, unless its Columbia University Medical Center's team. I think the lab tech's analysis is a little too simplistic. There are so many forms of lyme and coinfections that factor into whether a person gets sick and even if you have a good immune system it can bring you to your knees. Pamela Weintraub talks about the various strains and how some are more virulent than others. I would agree though that you can be sure that you have been exposed to lyme with that many tick bites. My family never sees ticks and most of us have never had one attached that we know of and we still got lyme. I think mosquitos and other insects must be transmitting it too b/c we have had plenty of mosquito bites. I would love to see a study of all the pandas cases with joint pain to see how many are diagnosed with lyme by lyme literate doctors. I bet the number is very high. Some of the PANDAS treatments would keep lyme at bay too so some kids need "maintenance" antibiotics for "PANDAS". For example, Augmentin XR is a treatment for PANDAS and it is also used for lyme (but with lyme you also get ceftin or some other antibiotic too). Usually you get three antibiotics when treating lyme and coinfections and the right combo makes a huge difference. Its trial and error with a qualified lyme doctor that works best. If all the PANDAS kids with lyme symptoms were given the right combo of antibiotics ordered by a lyme literate doctor I think more would be cured and be able to get off antibiotics permanently. The ones with joint pain would be at the top of the list as suspicious for lyme and coinfections. Not being able to walk screams lyme disease to me.

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