Aa
LLMD in or near NYC
Hi, I was visiting my doc's for a routine exam and bloodwork. The PA asked if she wanted me to go over my old blood work. She did. Among those papers in Aug 2010 I had requested a lyme test because I found a tick in my neck a month earlier. THAT tick turned out to be a wood tick, not engorged, and easily removed, so it hadn't been there long.
The PA read that the Ig that tested for new, acute infections was negative BUT, there was another Ig that said "reactive." She said "Oh, that's for old infections. We don't concern ourselves with that."
WhaaaaaaaaAAAAAAAA???!?!?!?
So um, er, I am going to make another appt to ream out my doctor and get re-tested I suppose. If this means I have had lyme for years then I am doing really well compared to what often happens to folks, but I don't want to mess around! What burns me up is that when I called for test results back then, no one ever mentioned the "reactive" result. I mean, it's not as if I was known to them as an established lyme patient.
I THINK this was an ELISA test but don't quote me on it. I should have asked more Qs then and there but it was still hitting me. The CanLyme website said false positives are rare. True? False?
Anyway, if anyone knows of a LLMD my way I'd love to know. I live in NYC.
The PA read that the Ig that tested for new, acute infections was negative BUT, there was another Ig that said "reactive." She said "Oh, that's for old infections. We don't concern ourselves with that."
WhaaaaaaaaAAAAAAAA???!?!?!?
So um, er, I am going to make another appt to ream out my doctor and get re-tested I suppose. If this means I have had lyme for years then I am doing really well compared to what often happens to folks, but I don't want to mess around! What burns me up is that when I called for test results back then, no one ever mentioned the "reactive" result. I mean, it's not as if I was known to them as an established lyme patient.
I THINK this was an ELISA test but don't quote me on it. I should have asked more Qs then and there but it was still hitting me. The CanLyme website said false positives are rare. True? False?
Anyway, if anyone knows of a LLMD my way I'd love to know. I live in NYC.
I love your thinking. I, too, would love to go out and do more tick surveys around here, too. The CA dept of public health does have a page on rheir website about ticks where they list the location of each survey, # of ticks collected, # positive for Lyme, etc. It told me that they found a Lyme positive tick in a big open space 1/2 mi from my house 10 years ago.
I would certainly assume there are disease carrying ticks in New York City. If you can get coyotes in Central Park, then surely a bird or other Lyme carrying animal could show up there. (Search for a Canadian study done a few years ago of song birds with Lyme infected ticks on them. Scary.)
I am confident city dwellers are blissfully unaware. I read a blog of a woman who picked up a tick on her leg while walking her dog on the sidewalk in a suburb of San Diego. Most docs would say that's not possible, but it did happen. Somehow this perception came up that you have to roll in a pile of leaves or walk through a grassy meadow or camp out in the woods of upstate New York or CT to get it. Some doc at Yale is still saying that positive test results in the south are highly suspicious as Lyme is essentially non existant there (Wrong!). They're trying to avoid unnecessary fear, but I think the pendulum swung too far the other way. I personally have a very healthy concern about ticks, now!
Hey, maybe your health department (for us, it's the Mosquito Abatement District), would test the ticks if you collected them and reported the locations. That would save them labor costs. Of course with cuts in services, there's probably not even money for that.
I would certainly assume there are disease carrying ticks in New York City. If you can get coyotes in Central Park, then surely a bird or other Lyme carrying animal could show up there. (Search for a Canadian study done a few years ago of song birds with Lyme infected ticks on them. Scary.)
I am confident city dwellers are blissfully unaware. I read a blog of a woman who picked up a tick on her leg while walking her dog on the sidewalk in a suburb of San Diego. Most docs would say that's not possible, but it did happen. Somehow this perception came up that you have to roll in a pile of leaves or walk through a grassy meadow or camp out in the woods of upstate New York or CT to get it. Some doc at Yale is still saying that positive test results in the south are highly suspicious as Lyme is essentially non existant there (Wrong!). They're trying to avoid unnecessary fear, but I think the pendulum swung too far the other way. I personally have a very healthy concern about ticks, now!
Hey, maybe your health department (for us, it's the Mosquito Abatement District), would test the ticks if you collected them and reported the locations. That would save them labor costs. Of course with cuts in services, there's probably not even money for that.
This is to everyone here but I put "Ricobord" in the TO field. :)
Just thought you'd be interested in this one since I get a lot of varying comments re: Stonybrook labs. Dr. Golightly told me that band 41 is common to MANY bacteria ( insinuating not just one or two specific kinds of spirochaetes or even just spiorchaetes, though I am trying to confirm this) and that "a large # of people have low levels of antibodies to it."
He also said quite firmly that dog ticks do not carry lyme and you need 72 hours of attachment to transmit. Now, those two little comments I have doubts on. I replied asking at least "Well that doesn't seem to cover what can happen when you remove a tick improperly, such as by the body which supposedly can squeeze bacteria into the potential host."
Now, this part interested me the most. He said that all lab reports check all bands, but they only report reactive ones??????? He said I need only ask my doctor to contact the lab and go back to check all the bands.
I asked Qs about this one such as, "Why would they do it that way?"
I mean, this doesn't make sense to me. Doesn't it cost money to run these extra tests and why would they leave results out? Why would they test, then not inform? If you don't inform, you have no grounds to charge money, I would think? Is he saying a Bb specific band could come up positive and the patient would never know because they don't report it?
You guys may also want to know that this has served to get me going/inspired, to really buckle down on something. There are some parks in Manhattan, BK and Queens where you can get ticks on yourself or your dog. One I frequent the most, has a load of dog ticks, and a handful of deer ticks. Actually my dog owning buddies that I have met there never even believed there could be deer ticks until I became one of the regulars there with my own dog, and proved it.
For one thing, a female deer tick ended up on my dog's ear. She was sitting there, not attached, so at the time I just killed it by crushing it on a rock. Then I got to thinking and asked folks to save ticks for me if they found them on themselves or their dogs.
One guy found a tick and saved it for me. I confirmed with my dissecting scope at work that it was in fact a deer tick. When I told everyone they were shocked. I wanted to get it tested but Stonybrook labs charges a bundle and I cannot afford to pay out of pocket for every time someone brings me a tick. The Depts of Health in NY and NYC have not been forthcoming with information either.
But I'm pushing. I'd like to get a profile of ticks in Queens, Manhattan, Brooklyn and possibly the Bronx. Staten Island is already well known to be a tick hell rife with potential disease. But I fear city dwellers may be at risk and be underestimating that risk in certain areas. As far as I know, no one has really done this sort of work.
At the very least I would like to get a sign posted in my regular park, warning of ticks. I know that the Jamaica Bay Wildlife Refuge by me posts warnings for their trails. This is the only place I know of that does this in Queens. It is also where I got a dog tick in my neck. Amazingly, my DOG did not!
I need to start eating raw meat like him, or using his repellants! :)
Just thought you'd be interested in this one since I get a lot of varying comments re: Stonybrook labs. Dr. Golightly told me that band 41 is common to MANY bacteria ( insinuating not just one or two specific kinds of spirochaetes or even just spiorchaetes, though I am trying to confirm this) and that "a large # of people have low levels of antibodies to it."
He also said quite firmly that dog ticks do not carry lyme and you need 72 hours of attachment to transmit. Now, those two little comments I have doubts on. I replied asking at least "Well that doesn't seem to cover what can happen when you remove a tick improperly, such as by the body which supposedly can squeeze bacteria into the potential host."
Now, this part interested me the most. He said that all lab reports check all bands, but they only report reactive ones??????? He said I need only ask my doctor to contact the lab and go back to check all the bands.
I asked Qs about this one such as, "Why would they do it that way?"
I mean, this doesn't make sense to me. Doesn't it cost money to run these extra tests and why would they leave results out? Why would they test, then not inform? If you don't inform, you have no grounds to charge money, I would think? Is he saying a Bb specific band could come up positive and the patient would never know because they don't report it?
You guys may also want to know that this has served to get me going/inspired, to really buckle down on something. There are some parks in Manhattan, BK and Queens where you can get ticks on yourself or your dog. One I frequent the most, has a load of dog ticks, and a handful of deer ticks. Actually my dog owning buddies that I have met there never even believed there could be deer ticks until I became one of the regulars there with my own dog, and proved it.
For one thing, a female deer tick ended up on my dog's ear. She was sitting there, not attached, so at the time I just killed it by crushing it on a rock. Then I got to thinking and asked folks to save ticks for me if they found them on themselves or their dogs.
One guy found a tick and saved it for me. I confirmed with my dissecting scope at work that it was in fact a deer tick. When I told everyone they were shocked. I wanted to get it tested but Stonybrook labs charges a bundle and I cannot afford to pay out of pocket for every time someone brings me a tick. The Depts of Health in NY and NYC have not been forthcoming with information either.
But I'm pushing. I'd like to get a profile of ticks in Queens, Manhattan, Brooklyn and possibly the Bronx. Staten Island is already well known to be a tick hell rife with potential disease. But I fear city dwellers may be at risk and be underestimating that risk in certain areas. As far as I know, no one has really done this sort of work.
At the very least I would like to get a sign posted in my regular park, warning of ticks. I know that the Jamaica Bay Wildlife Refuge by me posts warnings for their trails. This is the only place I know of that does this in Queens. It is also where I got a dog tick in my neck. Amazingly, my DOG did not!
I need to start eating raw meat like him, or using his repellants! :)
You are right. It does not make sense to continue with a test that leaves out so many Borrelia specific bands and leaves in non specifics. I agree 100% Seems like a huge waste!
I would have to check the Quest paper and see what specific bands ARE tested for out of the ten. But my guess is you guys already know the answers. It notes the 1994 Symposium on the bottom so I would imagine it's the CDC standard.
I have the "Cure Unkown" book at home now, as well as the book "Healing Lyme" which I think Buhner wrote? With all the books I looked up I don't have it memorized as to what Buhner wrote but I do know what title I have at home! :)
Will read all. Hey! I can eat foods and herbs via the "Healing.."suggestions while I finish sorting this all out.
Be well all. I'm still watching this forum!
I would have to check the Quest paper and see what specific bands ARE tested for out of the ten. But my guess is you guys already know the answers. It notes the 1994 Symposium on the bottom so I would imagine it's the CDC standard.
I have the "Cure Unkown" book at home now, as well as the book "Healing Lyme" which I think Buhner wrote? With all the books I looked up I don't have it memorized as to what Buhner wrote but I do know what title I have at home! :)
Will read all. Hey! I can eat foods and herbs via the "Healing.."suggestions while I finish sorting this all out.
Be well all. I'm still watching this forum!
With no Borrelia specific bands, Lyme would have to be diagnosed by symptoms. Without clear symptoms, its unlikely any doctor would diagnose Lyme.
If there are ANY Borrelia specific bands showing with low or no symptoms, it suggests a low grade infection that the immune system is fighting off. I personally would ask to be treated for this before it blows up into full blown Lyme. As I understand it, our immune systems cannot eradicate the bacteria pn its own.
The problem here is that a Quest Western Blot doesn't report all the Borrelia specific bands. So the choices are to wait and see if Lyme symptoms develop, or get another Western Blot from a different lab that shows all the Borrelia specific bands.
If there are ANY Borrelia specific bands showing with low or no symptoms, it suggests a low grade infection that the immune system is fighting off. I personally would ask to be treated for this before it blows up into full blown Lyme. As I understand it, our immune systems cannot eradicate the bacteria pn its own.
The problem here is that a Quest Western Blot doesn't report all the Borrelia specific bands. So the choices are to wait and see if Lyme symptoms develop, or get another Western Blot from a different lab that shows all the Borrelia specific bands.
The 5/10 criteria is really poor. Here is a great quote from the famous ped Lyme doc in CT.
The fact that you only have a 41 and you don't have many symptoms bodes well for you! :) The question is, how many Borrelia specific bands did Quest show?
----------------------------
There are nine known [Lyme] Borrelia burgdorferi species specific Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.
Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is lab evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease.
CDC Criteria are Confusing in Real Clinical Settings
CDC Western Blot IgM surveillance criteria includes only two burgdorferi genus species specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi antibodies.
CDC Western Blot IgG surveillance criteria include 18, 23, 30, 37, 39 and 93 and exclude bands 31, 34 and 83.
It does not make sense to exclude any Borrelia burgdorferi genus species-specific antibodies in a Lyme Western Blot, and to include only two of these antibodies in IgM because all the antibodies in IgG were once IgM.
The CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28, 41, 45, 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus species-specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus species specific antibodies.
This does not make sense.
The CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In my practice of over 10, 000 children with Lyme disease, 30% with a CDC positive Lyme Western Blot have negative ELISA's. The Lyme ELISA is a poor screening test. An adequate screening test should have false positives, not false negatives.
Source: http://www.publichealthalert.org/Articles/jamesschaller/western%20blots%20made%20easy.html
The fact that you only have a 41 and you don't have many symptoms bodes well for you! :) The question is, how many Borrelia specific bands did Quest show?
----------------------------
There are nine known [Lyme] Borrelia burgdorferi species specific Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.
Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is lab evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease.
CDC Criteria are Confusing in Real Clinical Settings
CDC Western Blot IgM surveillance criteria includes only two burgdorferi genus species specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi antibodies.
CDC Western Blot IgG surveillance criteria include 18, 23, 30, 37, 39 and 93 and exclude bands 31, 34 and 83.
It does not make sense to exclude any Borrelia burgdorferi genus species-specific antibodies in a Lyme Western Blot, and to include only two of these antibodies in IgM because all the antibodies in IgG were once IgM.
The CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28, 41, 45, 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus species-specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus species specific antibodies.
This does not make sense.
The CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In my practice of over 10, 000 children with Lyme disease, 30% with a CDC positive Lyme Western Blot have negative ELISA's. The Lyme ELISA is a poor screening test. An adequate screening test should have false positives, not false negatives.
Source: http://www.publichealthalert.org/Articles/jamesschaller/western%20blots%20made%20easy.html
Regarding bands, I didn't recall where that line of discussion started. Didn't see it after going over this forum thread but it's something I was destined to bring up now.
I got a copy of my 2010 test. It was done by Quest Diagnostics, which seems to be the go-to lab in NYC for a zillion things. It was a Western Blot after all.
All IgM bands for "recent" infections, non reactive. Of ten bands for IgG, only one was reactive. Band 41. I think there is another thread here where band numbers are mentioned but I'd prefer a doctor to look at this.
ANd yes, the notes below say you need 5 of 10 bands reactive if the test is going to be considerd specific to B. burgdorfei antibodies. It also said this info came from the preceedings of a lyme symposium in Dearborn MI, 1994.
1994!!!!!!!!!!!!!! Um, does that suggest this info is perhaps a TAD outdated? Ya think?
By coincidence we had a doctor/scientist come to our job earlier last year and speak about lyme. I work for the feds. He will likely stick to Infectious Diseases standards but I feel like contacting him anyway. I'm just curious as to what he has to say. I also want to thank you for hunting down folks who could privately do doctor reviews for me. That was extremely kind.
I got a copy of my 2010 test. It was done by Quest Diagnostics, which seems to be the go-to lab in NYC for a zillion things. It was a Western Blot after all.
All IgM bands for "recent" infections, non reactive. Of ten bands for IgG, only one was reactive. Band 41. I think there is another thread here where band numbers are mentioned but I'd prefer a doctor to look at this.
ANd yes, the notes below say you need 5 of 10 bands reactive if the test is going to be considerd specific to B. burgdorfei antibodies. It also said this info came from the preceedings of a lyme symposium in Dearborn MI, 1994.
1994!!!!!!!!!!!!!! Um, does that suggest this info is perhaps a TAD outdated? Ya think?
By coincidence we had a doctor/scientist come to our job earlier last year and speak about lyme. I work for the feds. He will likely stick to Infectious Diseases standards but I feel like contacting him anyway. I'm just curious as to what he has to say. I also want to thank you for hunting down folks who could privately do doctor reviews for me. That was extremely kind.
I have no idea about what experiments were done, if any, to determine what ticks carry. But that Q has crossed my mind.
Here's some commentary on which ticks carry or may carry Lyme --
www [dot] canlyme [dot] com / orderacari [dot] html
It's a lot more complicated than what the Lyme deniers say, and much is still not know. That happens with developing infections and illnesses. Think AIDS: 25 years ago, nobody had ever heard of it.
Mother Nature does not stand still. Have you heard the saying, 'Nature abhors a vacuum'? Evolution continues, and that means ticks too.
www [dot] canlyme [dot] com / orderacari [dot] html
It's a lot more complicated than what the Lyme deniers say, and much is still not know. That happens with developing infections and illnesses. Think AIDS: 25 years ago, nobody had ever heard of it.
Mother Nature does not stand still. Have you heard the saying, 'Nature abhors a vacuum'? Evolution continues, and that means ticks too.
Gee, what a concept! Scientific method!!
... Nah, too much trouble for the anti-Lyme dudes. Heh.
... Nah, too much trouble for the anti-Lyme dudes. Heh.
Has anyone done a study where they put dog ticks on Lyme infected mice and then for the next feeding, put the ticks on immune compromised mice to see if they develop Lyme? (This method has been used in other bacterial studies of Lyme.)
Absence of proof is not proof of absence.
Absence of proof is not proof of absence.
The Stonybrook site is one of many that says you can't get Lyme from Dog ticks. In fact it emphatically says NO!
Jackie would probably have a hard time with that one. :)
Jackie would probably have a hard time with that one. :)
I'm not sure what my insurance will do but it looks bad right away if you go to a doc that does not take it. I doubt my own doctor will refer me.
Every Lyme MD I have been referred to so far, will not take any insurance. Intial consultation rates are not cheap, just as you and Jackie inferred.
Yeah, I know. Websites. Well if even the ones by the very doctors I am supposed to seek out are not to be believed, it gives little confidence.
Every Lyme MD I have been referred to so far, will not take any insurance. Intial consultation rates are not cheap, just as you and Jackie inferred.
Yeah, I know. Websites. Well if even the ones by the very doctors I am supposed to seek out are not to be believed, it gives little confidence.
Yeah. And my insurance questioned my referral request to my LLMD because he's officially a GP and not a "specialist." And yet I am convinced that treating Lyme requires more sophistication and specialized knowledge than some other specialties.
... but so many variables! Different meds, different labs, different coinfections. Egad.
My doc likes IGeneX, and if they don't offer a needed test, then Labcorp or whatever insurance will cover. The LymeMD in Maryland has said he likes the Stonybrook lab, because they report even more bands than IGeneX, and it gives him a second opinion per se on a Western Blot. They usually differ.
From what I have read, researchers at Stonybrook take a "middle of the road" approach on Lyme...not as strict as Yale and the official IDSA guidelines, but not in agreement with ILADS, either. I really don't know much about them.
I wish someone would do a retrospective study to compare treatment success rates... That would be interesting.
From what I have read, researchers at Stonybrook take a "middle of the road" approach on Lyme...not as strict as Yale and the official IDSA guidelines, but not in agreement with ILADS, either. I really don't know much about them.
I wish someone would do a retrospective study to compare treatment success rates... That would be interesting.
What matters is your doc and whether the doc knows how to read the lab results. Some docs prefer one lab over the others, but it's the DOC who is important, because generally the doc can read the reports and allow for any weaknesses in the lab's approach. My doc used IGeneX and LabCorp, but others use other labs.
Remember: in Lyme, it's all still developing news. Ain't it fun being on the cutting edge of medicine?! (NOT!)
Remember: in Lyme, it's all still developing news. Ain't it fun being on the cutting edge of medicine?! (NOT!)
It was just something I saw in passing on a website. And you know you can't trust websites!!!
Some people like Burger King, some like McDonalds, just go with whatever on the labs and don't worry.
Some people like Burger King, some like McDonalds, just go with whatever on the labs and don't worry.
Hi. Was going over this conversation and meant to say, Jackie is saying Stonybrook is not such a good choice for updated Lyme info anymore, or testing I think? Frustrating.
The 5 bands issue could refer to the IgG portion of the Western Blot. The IDSA want to see "5 out of 10" bands on it before they'll diagnose you if you've been sick longer than about 6 weeks.
Less than 6 weeks, they look for "2 out of 3" bands on the IgM portion of the WB.
The dispute is about how many bands and which bands.
If you Google "Tom Grier Lyme Tests", he has a good article explaining the basic science of the tests and the controversy over interpretation.
Less than 6 weeks, they look for "2 out of 3" bands on the IgM portion of the WB.
The dispute is about how many bands and which bands.
If you Google "Tom Grier Lyme Tests", he has a good article explaining the basic science of the tests and the controversy over interpretation.
IFA is an antibody test in the same was ELISA and W.blot are. Different docs use different ones.
It was a made-up example, to illustrate the point that the bands are not hard and fast answers, they are indicators that are sometimes indistinct and difficult to interpret. We as a society have become accustomed to a yes/no, up/down dichotomy in so many things, but Lyme doesn't play by those rules. That was all.
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