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Does anyone know what the P41 band is on the Lyme test?


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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.

 

P.Mom,

 

The point is, I try very hard in my posts to give citations to the information I give out -- be it to the scientific literature; a study; a govenment body, a web site, a doctor, or what have you. Or I cite it as "opinion" when it is such.

 

The information about band 41 that I referenced was by an experienced lyme doctor giving a review of the scientific literature of studies on band 41 and dental spirochetes. So he's not exactly pulling his opinion out of thin air. The particular PANDAS doctor referenced by others here has been a practicing neurologist until fairly recently when deciding to specialize in PANDAS. His familiarity with infectious tick borne diseases is very, very limited.

 

As for myself, I clearly stated NOT that band 41 was definitive for lyme. But that band 41 indicated further investigation.

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Understood. This LLMD is reviewing scientific literature, but, there is a researcher saying that band 41 is of no significance who writes scientific literature. She hasn't done it, yet, but I know Dr. Cunningham will soon be publishing some information on her studies...one is on band 41. You put a lot of faith in Dr. Cunningham's CamK studies and how it can relate to Lyme...even urging people to contact her when their PANDAS children turn up Lyme. You must have some confidence in her? I don't think she is pulling "opinion" out of thin air. She has specifically stated, and presented at the recent Lyme conference, that Band 41 is caused by normal oral flora in the soooo very many "only band 41" positive results, also finding that band 41 is extremely common in the non-lyme population because of the reason I stated above. Perhaps the scientific literature will soon be changing!! Do you still have confidence in her?

 

We could go on about this doc said this...or that doc said that....who is right??? The LLMD's are always right it seems. So, is Cunningham only respected when she agress with the LLMD's? She has no concern of Lyme if band 41 is the only band present.

 

p.s. The "practicing neurologist" you mention didn't just decide to specialize PANDAS recently. There is a 21 year old girl who has posted on the PANDAS forum whom he treated when she was a child. She credits much of her well-being to him.

Edited by P.Mom
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For those looking for scientific data... here's an article that indicates that 43.1% of the normal population tested positive on band 41 compared to 87.1% of the Lyme patients.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC265062/pdf/jcm00026-0126.pdf

 

So, it seems the general statement that 'almost half of the normal population will test positive on band 41' is true. Nonetheless, it is obviously very prevalent in Lyme patients.

 

The article also states that "such a high cross-reactivity of the 41 kda protein in the normal group could also be due to the oral infection with treponemes." The article is from 1991, so this isn't a new idea that Dr. Cunningham is proposing.

 

Personally, I think band 41 alone on a western blot would warrant more investigation if there were also Lyme symptoms or other reasons to suspect Lyme, such as a history of a tick bite.

Edited by JT's Mom
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Everyone is different obviously but if a parent is on this board their child is probably sick and has symptoms. Any of these kids who are band 41 positive could have Lyme-doesn't mean they definitely have it but it certainly warrants igenex testing or a visit to a llmd. Of course if the child has no symptoms there is no need for any of this but this is clearly not the case with the people who post on this board. As a parent I would rather be assured by a llmd that my child does not have Lyme than take the reassurances that band 41 is not significant from experts in other fields. I would not want to find out later that my child had Lyme and I never checked it out thoroughly. The only way to do that is to see. A llmd. U would not want a doctor to treat u for cancer who has not healed many cancer patients. In fact I think it is great to see two llmds because second opinions are very helpful. all u have to do is read the lyme forums for a little while and it is clear that most Lyme patients recommend seeing a Lyme specialist, preferably an ilads trained Lyme doctor. I have said repeatedly in other posts if a child is not getting well and Lyme is a possibility there is no harm in a trial treatment if a llmd suspects Lyme. Also anyone whose child is low on iggs will probably not get a positive igg result onthe western blot. A llmd told me this recently. I'm afraid that in five or ten years it will be very clear why we are so suspicious of Lyme because there will be so many sick people with Lyme disease because the number if cases are skyrocketing.

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I was reading an article just a week ago with some doctor/researcher type (sorry, don't remember, and not very likely to find it either) was saying that many people say the band 41 may be the dental bugs, but pointed out he hadn't seen anyone suggest any direct evidence, that it was really just supposition. Can't remember what it was, but he felt he had substantial evidence suggesting that was not the case.

 

I have also heard H.Pylori mentioned as possibly triggering band 41, and it would not surprise me if that was relatively prevalent in the population.

 

I just want to point out, one other possibility not yet mentioned on this thread regarding the band 41, is that it is highly specific for lyme, and it so happens that half the population has had some exposure to lyme, even if they have managed to not develop a lot of symptoms. Given that lyme is in mosquitos, that can't be nearly the longshot that it would be if it were only available from ticks. I'm not saying I believe this possiblity to be the true explanation--right now, I don't have an opinion either way--but just saying, this is another possibility.

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I also have been very confused about band 41. I did a western blot through Quest labs this summer on all four of my children. All results appeared normal except for my 9 year old son. His band 41 was "reactive". Dr. Trifiletti (who ordered the tests) admittted he is not a LLMD at all, but tells me not to worry about band 41 being reactive. Of course, i am worried as we live in a tick area and 3 of our neighbors have Lyme disease. I have read all the posts on here and tend to lean towards more testing. I am confused though...

Colleen

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Colleen, You could do provocation DNA testing via Igenex to help determine if Lyme is an issue. I believe this test was $125.00 via Igenex. As you may have read under one of the Lyme posts, the Quest Lab test is not all that reliable. Or, you could test yourself via Igenex basic WB ($260.00) to determine if you were the issue for all of your children.

 

Something that has always nagged at me was HOW COULD ALL OF MY CHILDREN HAVE ELEVATED CAM Kinase and compromised immune systems. We found our answer when we found out its congenital Lyme. I just felt it was highly unlikely that all three of my children would have PANDAS especially since they are not fully biologically related.

 

-Wendy

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I also have been very confused about band 41. I did a western blot through Quest labs this summer on all four of my children. All results appeared normal except for my 9 year old son. His band 41 was "reactive". Dr. Trifiletti (who ordered the tests) admittted he is not a LLMD at all, but tells me not to worry about band 41 being reactive. Of course, i am worried as we live in a tick area and 3 of our neighbors have Lyme disease. I have read all the posts on here and tend to lean towards more testing. I am confused though...

Colleen

Quest is very poor lyme test. My llmd would never use quest. He said that labcorp is better as a place to start so you don't have to pay out of pocket. Then he would use the igenex if the labcorp is negative but lyme is suspected. A llmd would know that quest is not good as a lyme test and that is why seeing a lyme specialist is so important.

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Thanks for finding that JT's mom...saved me some searching!!!

 

So, Lyme is now in Mosquitos?? I know some have proposed it, but, have the spiorchetes ever been cultured out of one???

 

 

Regarding the mosquitos, yes, that is what I have read. And to be clear, finding them in mosquitos is different from demonstrating that you can get infected that way.

 

I'll second the thank-you to JT's mom! That is an article I ran across on the internet a number of months ago, and occasionally have looked for it a few times since and was unable to locate it. I printed it out right away so it will not escape me again. I know it is old, but still seems like a very nice reference.

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Agreed pmom

 

Dr T is a brilliant scientist, and Dr C is a well respected researcher- and is usually very cautious about her statements.

 

LLMD's, while I am sure are fabulous, may see things through a "Lyme prism" from their clinical work

 

 

Thanks DCMom!

 

Very cautious about her words in an understatement! :P I tried to pry info. out of her when I was down there left and right.....she was EXTREMELY cautious about what she claimed.......I could tell there were some things that would be coming out soon...she was holding back, she wasn't ready to release it yet. BUT, she was very clear and vocal about band 41. Even saying she was going to the Lyme Conference "armed with her research."

God Bless her!

 

 

JT's Mom,

 

What is new about what Dr. Cunningham is proposing is that Band 41 is found in normal, healthy mouths! The old literature mentions that it comes from an infection.....this leads to confusion when you come up band 41 positive only and never had any kind of oral infection...then you think...well, how could it be from that when I never had an infection...or Syphillis...must be related to Lyme. But, NOW it is being found that it is a normal, benign finding in MANY (almost half, like I said) people with completely healthy mouths and bodies...... just part of normal flora. That can change some ways of thinking...atleast, it should.

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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.

 

 

Well I don't know if you are stating this question to me, but PacificMama, you seem to make some statements that are always in the favor of lyme, and I think everyone should understand that all the statements made about lyme and testing and conclusions are all pretty much not exactly 'science' in the sense that these are not universally agreed upon in the medical field. The link you provide here...is this also not just an 'opinion' of some lyme doctor? I don't see any science to back up what he is saying either.

 

So I am only telling you what I learned from a recent doctor visit and this doctor is definitely an expert in the field of PANDAS I can tell you that, he has more than 20 years of research behind him. He tests for lyme in the initial work up for PANDAS patients to rule out any other causes of symptoms. I did not state he was a lyme expert. But he does have data to back up his testing of lyme and the percentage of patients who have the band 41, he explained all this to me, it is a little over my head but I know we discussed it. He was very interested in this at one time because he found it interesting that alot of his Pandas patients did have only band 41 and wondered if it was of any significance to Pandas since it might be some gut infection or as he explained, most probably dental flora bacteria. I don't claim to understand all this too much, but I did ask him these questions about what I read here.

 

And in that other link with the discussion from Dr. T., I see you posted a reply to him that you think his findinds were very interesting and you appreciated his work, but now you say he is no lyme expert. I think I am offended that you say in your other post here that he is just a neurologist that is recently specializing in PANDAS, but he is a very dedicated and obviously very smart doctor for alot of kids here nonetheless and I won't go into it but I do know there is another doctor who is just an immunologist who has 'recently' delved into PANDAS, so one might argue he is not an expert either, yet he is diagnosing PANDAS,and also diagnosing lyme from what I have read here too, so what. You can keep telling people to talk to an LLMD expert or whatever, but I hope some here are not missing some other ideas to help their kids if every time they are being directed to lyme and these lyme doctors who I don't think know it all. I beleive that even the 'diagnosis' of lyme is not always true and correct, some should understand that it is a clinical diagnosis and there is no test that can say for sure, and it is the same for PANDAS I think, so I don't think anyone can say for sure, I see alot of speculation here and it is hard because I am still trying to find some information on the PANDAS subject but often it is derailed to lyme so it has been unavoidable to read on. I guess I will soon be wondering about lyme and I guess I know where to go for info. :D

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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.

 

Im not familiar with the science that states that half the normal population is Band 41 positive. Could you provide further info/citation. Thanks.

 

 

Well I don't know if you are stating this question to me, but PacificMama, you seem to make some statements that are always in the favor of lyme, and I think everyone should understand that all the statements made about lyme and testing and conclusions are all pretty much not exactly 'science' in the sense that these are not universally agreed upon in the medical field. The link you provide here...is this also not just an 'opinion' of some lyme doctor? I don't see any science to back up what he is saying either.

 

So I am only telling you what I learned from a recent doctor visit and this doctor is definitely an expert in the field of PANDAS I can tell you that, he has more than 20 years of research behind him. He tests for lyme in the initial work up for PANDAS patients to rule out any other causes of symptoms. I did not state he was a lyme expert. But he does have data to back up his testing of lyme and the percentage of patients who have the band 41, he explained all this to me, it is a little over my head but I know we discussed it. He was very interested in this at one time because he found it interesting that alot of his Pandas patients did have only band 41 and wondered if it was of any significance to Pandas since it might be some gut infection or as he explained, most probably dental flora bacteria. I don't claim to understand all this too much, but I did ask him these questions about what I read here.

 

And in that other link with the discussion from Dr. T., I see you posted a reply to him that you think his findinds were very interesting and you appreciated his work, but now you say he is no lyme expert. I think I am offended that you say in your other post here that he is just a neurologist that is recently specializing in PANDAS, but he is a very dedicated and obviously very smart doctor for alot of kids here nonetheless and I won't go into it but I do know there is another doctor who is just an immunologist who has 'recently' delved into PANDAS, so one might argue he is not an expert either, yet he is diagnosing PANDAS,and also diagnosing lyme from what I have read here too, so what. You can keep telling people to talk to an LLMD expert or whatever, but I hope some here are not missing some other ideas to help their kids if every time they are being directed to lyme and these lyme doctors who I don't think know it all. I beleive that even the 'diagnosis' of lyme is not always true and correct, some should understand that it is a clinical diagnosis and there is no test that can say for sure, and it is the same for PANDAS I think, so I don't think anyone can say for sure, I see alot of speculation here and it is hard because I am still trying to find some information on the PANDAS subject but often it is derailed to lyme so it has been unavoidable to read on. I guess I will soon be wondering about lyme and I guess I know where to go for info. :D

 

#1, No, that comment was not directed at you.

 

#2, You are posting on the lyme board. This is where we have discussions about lyme.

 

#3, My PERSONAL OPINION, which I stated, was that band 41 should warrant further investigation if presented with symptoms.

 

#4, The doctor you mention is definitively not a lyme expert. It is a very, very specialized medical area -- as are most areas of medicine. The lab he uses to test is horrendous for testing lyme -- so it's of very little help. I AM OFFERING NO OPINION OF HIM AS A DOCTOR WHASOEVER, EXCEPT THAT HE IS NOT A TICK BORNE DISEASE SPECIALIST. He seems as if he genuinely wants to help people. Beyond what I've said above, I have no opinion about him personally or professionally whatsoever.

 

I NEVER said he is "just" a neurologist. Being a neurologist is wonderful. I'm simply stating that his practice specialty was neurology, and recently he has begun specializing in PANDAS. It has been pointed out to me that he previously helped an older pandas patient here some years ago.

 

#5 I refer people who want an expert opinion on tick borne diseases to an LLMD. If they wanted an expert opinion about PANDAS, I would refer them to a PANDAS doctor. That just seems logical to me.

Edited by PacificMama
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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.

 

 

Well I don't know if you are stating this question to me, but PacificMama, you seem to make some statements that are always in the favor of lyme, and I think everyone should understand that all the statements made about lyme and testing and conclusions are all pretty much not exactly 'science' in the sense that these are not universally agreed upon in the medical field. The link you provide here...is this also not just an 'opinion' of some lyme doctor? I don't see any science to back up what he is saying either.

 

So I am only telling you what I learned from a recent doctor visit and this doctor is definitely an expert in the field of PANDAS I can tell you that, he has more than 20 years of research behind him. He tests for lyme in the initial work up for PANDAS patients to rule out any other causes of symptoms. I did not state he was a lyme expert. But he does have data to back up his testing of lyme and the percentage of patients who have the band 41, he explained all this to me, it is a little over my head but I know we discussed it. He was very interested in this at one time because he found it interesting that alot of his Pandas patients did have only band 41 and wondered if it was of any significance to Pandas since it might be some gut infection or as he explained, most probably dental flora bacteria. I don't claim to understand all this too much, but I did ask him these questions about what I read here.

 

And in that other link with the discussion from Dr. T., I see you posted a reply to him that you think his findinds were very interesting and you appreciated his work, but now you say he is no lyme expert. I think I am offended that you say in your other post here that he is just a neurologist that is recently specializing in PANDAS, but he is a very dedicated and obviously very smart doctor for alot of kids here nonetheless and I won't go into it but I do know there is another doctor who is just an immunologist who has 'recently' delved into PANDAS, so one might argue he is not an expert either, yet he is diagnosing PANDAS,and also diagnosing lyme from what I have read here too, so what. You can keep telling people to talk to an LLMD expert or whatever, but I hope some here are not missing some other ideas to help their kids if every time they are being directed to lyme and these lyme doctors who I don't think know it all. I beleive that even the 'diagnosis' of lyme is not always true and correct, some should understand that it is a clinical diagnosis and there is no test that can say for sure, and it is the same for PANDAS I think, so I don't think anyone can say for sure, I see alot of speculation here and it is hard because I am still trying to find some information on the PANDAS subject but often it is derailed to lyme so it has been unavoidable to read on. I guess I will soon be wondering about lyme and I guess I know where to go for info. :D

 

The reason those of us post so often about lyme is because we have seen our kids recover with the right treatment by lyme literate medical doctors. Many of us have had great experiences with llmds. My family has used several llmds over the past two years during our lyme treatment and all are very dogged about getting to the bottom of each patient's health issues. They are true medical detectives not just for lyme but for all kinds of infections/health issues. The holistic llmds are truly amazing. In fact, calling them lyme doctors does not really do them justice. They are lyme experts but that is just one spoke in the wheel of skills they offer at getting to the bottom of health issues. LLmds do a lot of the same things that DAN! doctors do to get the patient well. Those of us lyme moms are just trying to share our experiences with others who are clearly trying to get their kids well and who are looking for answers. If the PANDAS treatment doesn't work and you have these symptoms, why not consult a lyme doctor? That's all we are saying. I am sure that these other doctors that are mentioned are wonderful and very smart. I personally would not rely on someone who is not a lyme expert to tell me that my child is clear of lyme b/c I wouldn't want to be kicking myself later that I relied on a non lyme expert and my child was sick years longer than they had to be. I listened to my pediatrician who said that nothing was wrong with my son when in fact he had lyme. I still kick myself for not seeking a second opinion and I can tell you that if I had known about llmds and lyme disease I would have made a beeline for their office. I hate to see others go through what our family went through as a result of the bad advice I got from my pediatrician- a long and painful lyme treatment. So if a child is still having bad symptoms what is the harm in pursuing a lyme evaluation? It is the fastest growing infectious disease these days. We only make these suggestions out of a deep sympathy for all you parents who are waking up every morning worrying about your kids' health and how to get them better. We have been there and want to help. You don't have to follow the suggestions if you disagree with the lyme postings but I can tell you that these postings have helped so many people get the right treatment for their kids and many of these parents do not post any longer b/c they got what they needed from this site and they are focused on getting their kids the right lyme treatment.

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