Lyme Band results

[tpotter]

My kid's lyme tests came back, and I need to know what it means:

 

On one of them, band 41 was reactive.

 

On the other, bands 41, 58, and 66 were positive.

 

What does that mean?

 

 

Also, my doctor tested me, and although I clearly asked for them to go straight to the Western Blot, they did the Elisa, and it would have done the Western Blot if it was positive. But, my test came back as <0.91, which looks to me like it is "equivocal.", so I asked the nurse to have the doctor call me tomorrow. I also told her that I absolutely want the Western Blot.

 

My DH's test results should be coming back soon (I actually gave him the code for the WEstern Blot, vs. the other one, so it should be getting done right.)

 

We're seeing Dr. B. next week (my DH and myself...my kids have already been there,) because we've both got stuff going on.

 

But, I'm also going to make an appt. with Dr. Beals tomorrow, and followup that way.

[matis_mom]

I don't have any answers for you, but I just wanted to say I too was so disapointed so find out all along each times my kids were checked out for Lymes at the pediatrician, they did not do a WB! We are currently all on abx but after we are done I will everyone else tested again.

We'll be seeing Dr. Beals this coming Tuesday for ds. I hear he is top of the line so I'm very hopeful.

Remind me again of how many children, who has PANDAS/Lymes, etc? Did any of your kids have IVIG or plasmapheresis?

We just found out about the Lyme a week before PEX, so we are postponing it till further notice.

[matis_mom]

What is the code for WB anyway? We really like our local Labcorp, but they have messed things up for us before...

[lyme_mom]

My kid's lyme tests came back, and I need to know what it means:

 

On one of them, band 41 was reactive.

 

On the other, bands 41, 58, and 66 were positive.

 

What does that mean?

 

 

Also, my doctor tested me, and although I clearly asked for them to go straight to the Western Blot, they did the Elisa, and it would have done the Western Blot if it was positive. But, my test came back as <0.91, which looks to me like it is "equivocal.", so I asked the nurse to have the doctor call me tomorrow. I also told her that I absolutely want the Western Blot.

 

My DH's test results should be coming back soon (I actually gave him the code for the WEstern Blot, vs. the other one, so it should be getting done right.)

 

We're seeing Dr. B. next week (my DH and myself...my kids have already been there,) because we've both got stuff going on.

 

But, I'm also going to make an appt. with Dr. Beals tomorrow, and followup that way.

I don't know about those bands. I looked on my Igenex test and the only one that is double starred is 41 and that is not considered "lyme-specific". I don't think it looks good to have three of these though but I just don't know. I remember Dr. Jones telling me that he disagrees with the cdc criteria and he even had a problem with Igenex' way of determining who is positive. I can't remember the details of his comments though but the gist was that the really important markers for lyme are not counted and the ones that are not important are counted. So you could have five bands indicating you are cdc positive and they not be the right lyme specific bands. In other words he would not assume lyme from those bands. On the flip side you could have one lyme-specific band and be negative but really be positive. I hope I have represented what he said accurately. It was a year ago so I don't remember exactly what he said. Next time I see Dr Beals I will ask him about bands 58 and 66. Of course these tests do not test for bands 31 and 34 so I would definitely do Igenex or see a lyme doctor for an opinion b/c either one of those bands could also be positive and that would be enough in and of itself. Dr Beals is great. I think you will really like him.

[tpotter]

Thanks everyone. Apparently band 41 is the flagylen (or something like that)...the tail of MycoP, which really makes sense, because my whole family has been exposed (high IgG),and I have very high IgM (my husband's is very close to above the normal range, too.) Got a appointment with Dr. Beals for the end of October for the whole family, but since I want to get in sooner, I'm going to see if he can do 2 & 2, and my DH and I will go down separately with the boys.

 

WB only for Quest is: code 8593 (I spent 1 hour at the lab on the phone with the doctor's office last week, trying to get it clarified for my boys...they were trying to do the Elisa again, which is a standard practice these days. What they do is get the antibodies (they don't call it an Elisa, but it is exactly that), and if it comes back equivocal or positive, then they do a WB. You have to be very careful about that. They did it at LabCorp on me, and I had specifically asked to have the WB only (they're now supposed to be fixing it for me.)

 

 

[

[Iowadawn]

My kid's lyme tests came back, and I need to know what it means:

 

On one of them, band 41 was reactive.

 

On the other, bands 41, 58, and 66 were positive.

 

What does that mean?

 

 

Also, my doctor tested me, and although I clearly asked for them to go straight to the Western Blot, they did the Elisa, and it would have done the Western Blot if it was positive. But, my test came back as <0.91, which looks to me like it is "equivocal.", so I asked the nurse to have the doctor call me tomorrow. I also told her that I absolutely want the Western Blot.

 

My DH's test results should be coming back soon (I actually gave him the code for the WEstern Blot, vs. the other one, so it should be getting done right.)

 

We're seeing Dr. B. next week (my DH and myself...my kids have already been there,) because we've both got stuff going on.

 

But, I'm also going to make an appt. with Dr. Beals tomorrow, and followup that way.

I don't know about those bands. I looked on my Igenex test and the only one that is double starred is 41 and that is not considered "lyme-specific". I don't think it looks good to have three of these though but I just don't know. I remember Dr. Jones telling me that he disagrees with the cdc criteria and he even had a problem with Igenex' way of determining who is positive. I can't remember the details of his comments though but the gist was that the really important markers for lyme are not counted and the ones that are not important are counted. So you could have five bands indicating you are cdc positive and they not be the right lyme specific bands. In other words he would not assume lyme from those bands. On the flip side you could have one lyme-specific band and be negative but really be positive. I hope I have represented what he said accurately. It was a year ago so I don't remember exactly what he said. Next time I see Dr Beals I will ask him about bands 58 and 66. Of course these tests do not test for bands 31 and 34 so I would definitely do Igenex or see a lyme doctor for an opinion b/c either one of those bands could also be positive and that would be enough in and of itself. Dr Beals is great. I think you will really like him.

 

 

The band that will not be tested on a WB from your doctor--Band 31--was the kicker in Evan's dx. It is Lyme specific and will only show up if a person has had lyme over a year. Makes you want to scream "How in the world would there be an antibody in a person's bodyfor a surface protein that is Lyme SPECIFIC if Bb wasn't around!!! Dawn

[lyme_mom]

My kid's lyme tests came back, and I need to know what it means:

 

On one of them, band 41 was reactive.

 

On the other, bands 41, 58, and 66 were positive.

 

What does that mean?

 

 

Also, my doctor tested me, and although I clearly asked for them to go straight to the Western Blot, they did the Elisa, and it would have done the Western Blot if it was positive. But, my test came back as <0.91, which looks to me like it is "equivocal.", so I asked the nurse to have the doctor call me tomorrow. I also told her that I absolutely want the Western Blot.

 

My DH's test results should be coming back soon (I actually gave him the code for the WEstern Blot, vs. the other one, so it should be getting done right.)

 

We're seeing Dr. B. next week (my DH and myself...my kids have already been there,) because we've both got stuff going on.

 

But, I'm also going to make an appt. with Dr. Beals tomorrow, and followup that way.

I don't know about those bands. I looked on my Igenex test and the only one that is double starred is 41 and that is not considered "lyme-specific". I don't think it looks good to have three of these though but I just don't know. I remember Dr. Jones telling me that he disagrees with the cdc criteria and he even had a problem with Igenex' way of determining who is positive. I can't remember the details of his comments though but the gist was that the really important markers for lyme are not counted and the ones that are not important are counted. So you could have five bands indicating you are cdc positive and they not be the right lyme specific bands. In other words he would not assume lyme from those bands. On the flip side you could have one lyme-specific band and be negative but really be positive. I hope I have represented what he said accurately. It was a year ago so I don't remember exactly what he said. Next time I see Dr Beals I will ask him about bands 58 and 66. Of course these tests do not test for bands 31 and 34 so I would definitely do Igenex or see a lyme doctor for an opinion b/c either one of those bands could also be positive and that would be enough in and of itself. Dr Beals is great. I think you will really like him.

 

 

The band that will not be tested on a WB from your doctor--Band 31--was the kicker in Evan's dx. It is Lyme specific and will only show up if a person has had lyme over a year. Makes you want to scream "How in the world would there be an antibody in a person's bodyfor a surface protein that is Lyme SPECIFIC if Bb wasn't around!!! Dawn

 

That's true.. Its crazy that all lyme tests do not test for this band. It means the person was exposed to lyme over a year before b/c it takes a year to show up in the blood.

[JTs-Mom]

Just want to point out for anyone new to Lyme that there are certain viruses and other bacteria (HSV, EBV, HCV, or syphillis) that can cause a false positive result on the western blot, particularly the IGM. IGeneX even states this on their IGM results page. They have a test called the 31 kda epitope test that is specifically for the purpose of determining whether the reaction at band 31 is actually Bb or not. Of course, that test is not full-proof either, but if your child has high titers for any of these other viruses/bacteria, you should point this out to any LLMD that you see so that he/she can make a fully informed diagnosis.

 

Also, if you haven't already done so, it might be worthwhile to pursue testing for HSV, EBV, and HCV to help rule those out as a possible cause of symptoms, as well as a false positive Lyme result.

Edited September 25, 2010 by JT's Mom

[lyme_mom]

Just want to point out for anyone new to Lyme that there are certain viruses and other bacteria (HSV, EBV, HCV, or syphillis) that can cause a false positive result on the western blot, particularly the IGM. IGeneX even states this on their IGM results page. They have a test called the 31 kda epitope test that is specifically for the purpose of determining whether the reaction at band 31 is actually Bb or not. Of course, that test is not full-proof either, but if your child has high titers for any of these other viruses/bacteria, you should point this out to any LLMD that you see so that he/she can make a fully informed diagnosis.

 

Also, if you haven't already done so, it might be worthwhile to pursue testing for HSV, EBV, and HCV to help rule those out as a possible cause of symptoms, as well as a false positive Lyme result.

 

I have never heard that band 31 is possibly a false positive so I will have to ask my llmd about this. Dr. Jones, the lyme pediatrician who has treated more kids with lyme than anyone in the world, told me that band 31 means that a person was exposed to lyme and it takes a year to show up. He and other llmds we have used have never said that 31 is possibly related to another infection and I have discussed band 31 with all three. Band 41 could be related to syphilis as you mention as well as a dental infection that is a spirochete. However, I am puzzled by the reference to band 31 in your post b/c I have been told that it is considered a very specific antibody for lyme. I had the band 31 confirmation test that you refer to but it was explained to me differently. I was told that it is used to look at an indeterminate band more closely to see if it matches a positive band 31 in their database. I see my llmd next week and will ask him about this and let you know what he says.

[JTs-Mom]

Just want to point out for anyone new to Lyme that there are certain viruses and other bacteria (HSV, EBV, HCV, or syphillis) that can cause a false positive result on the western blot, particularly the IGM. IGeneX even states this on their IGM results page. They have a test called the 31 kda epitope test that is specifically for the purpose of determining whether the reaction at band 31 is actually Bb or not. Of course, that test is not full-proof either, but if your child has high titers for any of these other viruses/bacteria, you should point this out to any LLMD that you see so that he/she can make a fully informed diagnosis.

 

Also, if you haven't already done so, it might be worthwhile to pursue testing for HSV, EBV, and HCV to help rule those out as a possible cause of symptoms, as well as a false positive Lyme result.

 

I have never heard that band 31 is possibly a false positive so I will have to ask my llmd about this. Dr. Jones, the lyme pediatrician who has treated more kids with lyme than anyone in the world, told me that band 31 means that a person was exposed to lyme and it takes a year to show up. He and other llmds we have used have never said that 31 is possibly related to another infection and I have discussed band 31 with all three. Band 41 could be related to syphilis as you mention as well as a dental infection that is a spirochete. However, I am puzzled by the reference to band 31 in your post b/c I have been told that it is considered a very specific antibody for lyme. I had the band 31 confirmation test that you refer to but it was explained to me differently. I was told that it is used to look at an indeterminate band more closely to see if it matches a positive band 31 in their database. I see my llmd next week and will ask him about this and let you know what he says.

 

My son's band 31 on the IGG was positive (not indeterminate), yet they still performed the confirmation test, which was also positive.

 

This is what I found on a couple other sites...

 

"IGeneX also now offers a new 30-31kDa Confirmation IgG and IgM test. If results from the initial Western Blot are positive for bands 30 or 31, it is possible that these could be due to cross-reactivity with several different types of viruses. In this confirmatory test, highly specific recombinant antigens are used to validate that the positive result is not due to cross-reaction with viruses."

 

"Sometimes bands 30-31 can cross react with viruses such as EBV. A 31 kDa epitope test can determine if band 31 cross reacted with a virus or not."

 

So, this was just my understanding based on what I'd read on other websites. Kenneth Singleton mentions in his book the various viruses that can cross-react on Lyme antibody tests, thus causing a false positive. The excerpt at http://www.lymebook.com/chronic-lyme-testing-and-diagnosis lists quite a few. I don't think these viruses have flagella, thus they would not necessarily be cross-reacting at band 41. Dr. Singleton doesn't specifically mention what bands they might cross-react with.

 

I'll also ask my son's LLMD next time we see her. She does believe in differential diagnosis, as does the Lyme-literate ID doc that we saw, so my ds has been tested for many of the viruses listed to ensure they aren't a factor in his case. I think it's a good idea to get a thorough diagnostic work-up, just to be sure nothing else is being missed. In my son's case, everything else is coming up negative, so... all roads lead to Lyme.

Edited September 27, 2010 by JT's Mom

[philamom]

Just want to point out for anyone new to Lyme that there are certain viruses and other bacteria (HSV, EBV, HCV, or syphillis) that can cause a false positive result on the western blot, particularly the IGM. IGeneX even states this on their IGM results page. They have a test called the 31 kda epitope test that is specifically for the purpose of determining whether the reaction at band 31 is actually Bb or not. Of course, that test is not full-proof either, but if your child has high titers for any of these other viruses/bacteria, you should point this out to any LLMD that you see so that he/she can make a fully informed diagnosis.

 

Also, if you haven't already done so, it might be worthwhile to pursue testing for HSV, EBV, and HCV to help rule those out as a possible cause of symptoms, as well as a false positive Lyme result.

What about elevated IGG's of these viruses...do they have the potential of giving a false positive lyme result?

[JTs-Mom]

Just want to point out for anyone new to Lyme that there are certain viruses and other bacteria (HSV, EBV, HCV, or syphillis) that can cause a false positive result on the western blot, particularly the IGM. IGeneX even states this on their IGM results page. They have a test called the 31 kda epitope test that is specifically for the purpose of determining whether the reaction at band 31 is actually Bb or not. Of course, that test is not full-proof either, but if your child has high titers for any of these other viruses/bacteria, you should point this out to any LLMD that you see so that he/she can make a fully informed diagnosis.

 

Also, if you haven't already done so, it might be worthwhile to pursue testing for HSV, EBV, and HCV to help rule those out as a possible cause of symptoms, as well as a false positive Lyme result.

What about elevated IGG's of these viruses...do they have the potential of giving a false positive lyme result?

I honestly don't know, but my gut feeling is 'yes'. (That's certainly not based on anything scientific.)

Did Dr. J see these test results, and did you specifically ask about the possibility of them causing a false positive on the Lyme test? If not, you might want to call his office and ask about it.

 

I also believe that continually elevated IGGs are an issue that needs to be addressed. I think there's a reason that there is a 'normal' range associated with IGGs, so if IGGs are continually elevated above the 'normal' range, I believe that is indicative of a chronic infection or possibly an autoimmune process going on. Otherwise, after acute infection, you would see IGG levels rise, but then eventually drop back to within the normal range. That's all just my personal opinion though. I don't know if there's any scientific info out there to support that theory. I think this is another area where there are differences of opinion... some docs think elevated IGGs are nothing to be concerned about, while some think they are a concern.

[lyme_mom]

Just want to point out for anyone new to Lyme that there are certain viruses and other bacteria (HSV, EBV, HCV, or syphillis) that can cause a false positive result on the western blot, particularly the IGM. IGeneX even states this on their IGM results page. They have a test called the 31 kda epitope test that is specifically for the purpose of determining whether the reaction at band 31 is actually Bb or not. Of course, that test is not full-proof either, but if your child has high titers for any of these other viruses/bacteria, you should point this out to any LLMD that you see so that he/she can make a fully informed diagnosis.

 

Also, if you haven't already done so, it might be worthwhile to pursue testing for HSV, EBV, and HCV to help rule those out as a possible cause of symptoms, as well as a false positive Lyme result.

 

I have never heard that band 31 is possibly a false positive so I will have to ask my llmd about this. Dr. Jones, the lyme pediatrician who has treated more kids with lyme than anyone in the world, told me that band 31 means that a person was exposed to lyme and it takes a year to show up. He and other llmds we have used have never said that 31 is possibly related to another infection and I have discussed band 31 with all three. Band 41 could be related to syphilis as you mention as well as a dental infection that is a spirochete. However, I am puzzled by the reference to band 31 in your post b/c I have been told that it is considered a very specific antibody for lyme. I had the band 31 confirmation test that you refer to but it was explained to me differently. I was told that it is used to look at an indeterminate band more closely to see if it matches a positive band 31 in their database. I see my llmd next week and will ask him about this and let you know what he says.

 

My son's band 31 on the IGG was positive (not indeterminate), yet they still performed the confirmation test, which was also positive.

 

This is what I found on a couple other sites...

 

"IGeneX also now offers a new 30-31kDa Confirmation IgG and IgM test. If results from the initial Western Blot are positive for bands 30 or 31, it is possible that these could be due to cross-reactivity with several different types of viruses. In this confirmatory test, highly specific recombinant antigens are used to validate that the positive result is not due to cross-reaction with viruses."

 

"Sometimes bands 30-31 can cross react with viruses such as EBV. A 31 kDa epitope test can determine if band 31 cross reacted with a virus or not."

 

So, this was just my understanding based on what I'd read on other websites. Kenneth Singleton mentions in his book the various viruses that can cross-react on Lyme antibody tests, thus causing a false positive. The excerpt at http://www.lymebook.com/chronic-lyme-testing-and-diagnosis lists quite a few. I don't think these viruses have flagella, thus they would not necessarily be cross-reacting at band 41. Dr. Singleton doesn't specifically mention what bands they might cross-react with.

 

I'll also ask my son's LLMD next time we see her. She does believe in differential diagnosis, as does the Lyme-literate ID doc that we saw, so my ds has been tested for many of the viruses listed to ensure they aren't a factor in his case. I think it's a good idea to get a thorough diagnostic work-up, just to be sure nothing else is being missed. In my son's case, everything else is coming up negative, so... all roads lead to Lyme.

 

Thats interesting. I will let you know what my llmd says. I think the doctor you are seeing (if it is who I think it is) was trained by Dr. Jones. There are so few female lyme doctors :-)....

[laurenjohnsonsmom]

My kid's lyme tests came back, and I need to know what it means:

 

On one of them, band 41 was reactive.

 

On the other, bands 41, 58, and 66 were positive.

 

What does that mean?

 

 

Also, my doctor tested me, and although I clearly asked for them to go straight to the Western Blot, they did the Elisa, and it would have done the Western Blot if it was positive. But, my test came back as <0.91, which looks to me like it is "equivocal.", so I asked the nurse to have the doctor call me tomorrow. I also told her that I absolutely want the Western Blot.

 

My DH's test results should be coming back soon (I actually gave him the code for the WEstern Blot, vs. the other one, so it should be getting done right.)

 

We're seeing Dr. B. next week (my DH and myself...my kids have already been there,) because we've both got stuff going on.

 

But, I'm also going to make an appt. with Dr. Beals tomorrow, and followup that way.

I don't know about those bands. I looked on my Igenex test and the only one that is double starred is 41 and that is not considered "lyme-specific". I don't think it looks good to have three of these though but I just don't know. I remember Dr. Jones telling me that he disagrees with the cdc criteria and he even had a problem with Igenex' way of determining who is positive. I can't remember the details of his comments though but the gist was that the really important markers for lyme are not counted and the ones that are not important are counted. So you could have five bands indicating you are cdc positive and they not be the right lyme specific bands. In other words he would not assume lyme from those bands. On the flip side you could have one lyme-specific band and be negative but really be positive. I hope I have represented what he said accurately. It was a year ago so I don't remember exactly what he said. Next time I see Dr Beals I will ask him about bands 58 and 66. Of course these tests do not test for bands 31 and 34 so I would definitely do Igenex or see a lyme doctor for an opinion b/c either one of those bands could also be positive and that would be enough in and of itself. Dr Beals is great. I think you will really like him.

 

 

The band that will not be tested on a WB from your doctor--Band 31--was the kicker in Evan's dx. It is Lyme specific and will only show up if a person has had lyme over a year. Makes you want to scream "How in the world would there be an antibody in a person's bodyfor a surface protein that is Lyme SPECIFIC if Bb wasn't around!!! Dawn

 

That's true.. Its crazy that all lyme tests do not test for this band. It means the person was exposed to lyme over a year before b/c it takes a year to show up in the blood.

 

My youngest (DD11) Audrey and myself were both band 31 positive (IgG & IgM) along with other multiple bands.

 

The many LLMD's we have seen believe that I have had Lyme for at least 14 years and most likely gave it to Audrey in-utero. I was told that there are no such thing as false positives BUT many cases of false negatives (more than 50% false negative when standard two tier testing is used)!

 

A friend of mine has been treating her whole family for lyme for over 6 months (her kids did not test positive 6 months ago but were treated by clinical diagnosis) now they are all testing positive.

 

I'm not a scientist/researcher or doctor but many have explained to me how lyme spirocetes hide in the body/in the cells and if you put someone on a "cyst-buster" abx it causes the DNA to shed. This is so complex! We've also been tested for HSV, EBV, and HCV to rule those out as a possible cause of symptoms, (all negative) along with about every known blood test known to man-kind!

The only test we have ever had a positive result on is MP IGg (and Audrey constantly has elevated ASO/Anti titers like a roller coaster ride regardless of he abx she's been on continuously for over 9 months now)!

 

Lyme stinks!