Lyme ELISA positive, but Western Blot negative on all bands

[worriedmommy]

My ds4 recently tested positive on the ELISA Lyme test, but negative on all bands on the the Western Blot. The doctor said there are false positives on the ELISA test. While I agree that having all negative bands on the Western Blot answers the Lyme question, I'm curious what would make his ELISA test positive. Anyone know exactly what the ELISA test looks at? Could it be an indicator or another problem, or is "false positive" a good enough answer.

[lyme_mom]

My ds4 recently tested positive on the ELISA Lyme test, but negative on all bands on the the Western Blot. The doctor said there are false positives on the ELISA test. While I agree that having all negative bands on the Western Blot answers the Lyme question, I'm curious what would make his ELISA test positive. Anyone know exactly what the ELISA test looks at? Could it be an indicator or another problem, or is "false positive" a good enough answer.

 

I would be very concerned about a positive ELISA test and would insist that my child be put on antibiotics until he can be seen by a lyme literate doctor. I think you have to be pretty positive to get a positive ELISA b/c it is the most insensitive test for lyme. A negative Western blot by the regular labs is meaningless.

There are very few false positives but many, many false negatives.

 

I would get an opinion from a lyme literate doctor because the doctor who is using this "two-tiered" approach for diagnosing lyme does not understand lyme. The risk of not treating a lyme infection is too great so I would not rely on your doctor's advice. (believe me-we learned the hard way that most doctors have no clue about lyme). The two-tiered testing (first an ELISA, then a Western blot to confirm) is the procedure they use for reporting lyme cases, not diagnosis. Lyme is a clinical diagnosis and even the CDC states this. If your child has symptoms and a positive ELISA he should absolutely be treated for lyme immediately. You will get an idea if you are on the right track pretty quickly with either a symptom improvement or herx reaction. You could also get an igenex test to see if your child has lyme-specific bands. The regular western blots (labcorp, quest, etc.) leave out important lyme antibodies (31 and 34) so the Igenex is the preferred test. There are, however, no definitive lyme tests b/c they are still just antibody tests and some people do not produce antibodies to lyme, even some who are very sick with lyme disease. Also there are about 300 strains of lyme and the tests only test for one strain (igenex tests for two I think). A lyme specialist would also know whether co-infections are involved based on the symptoms. This is way beyond your average doctor's expertise. Lyme literate doctors (from ilads.org) train under and collaborate with other tick-borne disease specialists so they know what these diseases look like and the best ways to treat them. Good luck and feel free to pm me with questions. The earlier lyme is treated, the better the outcome. My poor son went undiagnosed for at least year and has hard a very hard time beating it as a result.

[Fixit]

My ds4 recently tested positive on the ELISA Lyme test, but negative on all bands on the the Western Blot. The doctor said there are false positives on the ELISA test. While I agree that having all negative bands on the Western Blot answers the Lyme question, I'm curious what would make his ELISA test positive. Anyone know exactly what the ELISA test looks at? Could it be an indicator or another problem, or is "false positive" a good enough answer.

 

i would agree with lyme mom....

on any test where you get a positive i would follow up...

its like the pregnancy tests you can get false negatives..maybe not producing enough hormone yet for the test..

but if its positive!!!!!! you can't be a little pregnant...the hormones are there

[harpazo_hope]

I second lyme mom's reply. I tested positive on the screening test, but negative with a Labcorp western blot with only one band being positive. I have been responding to treatment though. My son had several bands come up positive on his western blot, and I believe he has congenital lyme and was infected by me. His symptoms started so young, before he had many opportunities to be unknowingly bit by a tick.

[worriedmommy]

I would be very concerned about a positive ELISA test and would insist that my child be put on antibiotics until he can be seen by a lyme literate doctor. I think you have to be pretty positive to get a positive ELISA b/c it is the most insensitive test for lyme. A negative Western blot by the regular labs is meaningless.

There are very few false positives but many, many false negatives.

 

I would get an opinion from a lyme literate doctor because the doctor who is using this "two-tiered" approach for diagnosing lyme does not understand lyme. The risk of not treating a lyme infection is too great so I would not rely on your doctor's advice. (believe me-we learned the hard way that most doctors have no clue about lyme). The two-tiered testing (first an ELISA, then a Western blot to confirm) is the procedure they use for reporting lyme cases, not diagnosis. Lyme is a clinical diagnosis and even the CDC states this. If your child has symptoms and a positive ELISA he should absolutely be treated for lyme immediately. You will get an idea if you are on the right track pretty quickly with either a symptom improvement or herx reaction. You could also get an igenex test to see if your child has lyme-specific bands. The regular western blots (labcorp, quest, etc.) leave out important lyme antibodies (31 and 34) so the Igenex is the preferred test. There are, however, no definitive lyme tests b/c they are still just antibody tests and some people do not produce antibodies to lyme, even some who are very sick with lyme disease. Also there are about 300 strains of lyme and the tests only test for one strain (igenex tests for two I think). A lyme specialist would also know whether co-infections are involved based on the symptoms. This is way beyond your average doctor's expertise. Lyme literate doctors (from ilads.org) train under and collaborate with other tick-borne disease specialists so they know what these diseases look like and the best ways to treat them. Good luck and feel free to pm me with questions. The earlier lyme is treated, the better the outcome. My poor son went undiagnosed for at least year and has hard a very hard time beating it as a result.

 

Interesting...the odd thing is that I only had ds tested b/c we just recently found out that dd6 has PANDAS. She's had a series of health issues this past year, including sudden onset of tics which led us down the PANDAS path. CamK results for her came back at 150 this week. So, now that we feel pretty certain that it is PANDAS she has, we've started to put more weight on our recent observations of ds4. In the past few months he's had an increase in rage, screaming fits, developed nightime fears, complained of seeing flashing lights on 3 ocassions, and according to dh seems "twitchy".

 

Anyway, ds had his 4 yr check up last week, and I said I wanted ALL of the blood tests that dd has had in recent months, done on him...one of which was the Western Lyme Blot. So, I really didn't expect to see anything come back on him. Dd didn't have the ELISA test, but her Western Blot showed Band 41 IgM & IgG positive, and Band 66 IgG positive.

 

Are these "sympotms" we're seeing in ds at all consistent with Lyme?

 

We've already found an ILADS doctor in the state who we've planned to go see for dd, so I can easily set up an appt for ds at the same time.

[harpazo_hope]

Interesting...the odd thing is that I only had ds tested b/c we just recently found out that dd6 has PANDAS. She's had a series of health issues this past year, including sudden onset of tics which led us down the PANDAS path. CamK results for her came back at 150 this week. So, now that we feel pretty certain that it is PANDAS she has, we've started to put more weight on our recent observations of ds4. In the past few months he's had an increase in rage, screaming fits, developed nightime fears, complained of seeing flashing lights on 3 ocassions, and according to dh seems "twitchy".

 

Anyway, ds had his 4 yr check up last week, and I said I wanted ALL of the blood tests that dd has had in recent months, done on him...one of which was the Western Lyme Blot. So, I really didn't expect to see anything come back on him. Dd didn't have the ELISA test, but her Western Blot showed Band 41 IgM & IgG positive, and Band 66 IgG positive.

 

Are these "sympotms" we're seeing in ds at all consistent with Lyme?

 

We've already found an ILADS doctor in the state who we've planned to go see for dd, so I can easily set up an appt for ds at the same time.

 

 

You might want to read this - http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

 

"The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."

[KeithandElizabeth]

Both of my children have PANDAS and I did the lyme test on my daughter just to cover all of our basis pre-IVIG and her IGENEX test came back positive 2 days before her scheduled IVIG.

 

Dr. Kovacevic said to treat the lyme first and cancel the IVIG. I have to say that the antibiotics she is on for lyme have decreased her TICS dramatically. So, treating the lyme should also really help with any PANDAS/PITANDS symptoms your child may have..

 

Elizabeth

[jjk4]

Interesting...the odd thing is that I only had ds tested b/c we just recently found out that dd6 has PANDAS. She's had a series of health issues this past year, including sudden onset of tics which led us down the PANDAS path. CamK results for her came back at 150 this week. So, now that we feel pretty certain that it is PANDAS she has, we've started to put more weight on our recent observations of ds4. In the past few months he's had an increase in rage, screaming fits, developed nightime fears, complained of seeing flashing lights on 3 ocassions, and according to dh seems "twitchy".

 

Anyway, ds had his 4 yr check up last week, and I said I wanted ALL of the blood tests that dd has had in recent months, done on him...one of which was the Western Lyme Blot. So, I really didn't expect to see anything come back on him. Dd didn't have the ELISA test, but her Western Blot showed Band 41 IgM & IgG positive, and Band 66 IgG positive.

 

Are these "sympotms" we're seeing in ds at all consistent with Lyme?

 

We've already found an ILADS doctor in the state who we've planned to go see for dd, so I can easily set up an appt for ds at the same time.

 

 

You might want to read this - http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

 

"The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."

 

 

Hi,

It is great that you found an ILADS doctor in your state! The symptoms you are describing in your son are so similar to what we saw in our daughter (9) who had 2 "negaitve" Western Blots (both with band 41 only) before we had her retested for all bands of Lyme and co-infections with a Lyme literate doctor. She did have many other bands present along with a co-infection Bartonella. We were told the Bartonella can cause many neuropsyche symptoms. We are almost 2 months into treatment on Zythromax, Bactrim, and Tindamax and seeing great improvements. She is not symptom free but has some great days....we live one day at a time around here. I would follow up with the Lyme doctor for both kids just to be sure. Good luck!!!!

Joanne

[worriedmommy]

Both of my children have PANDAS and I did the lyme test on my daughter just to cover all of our basis pre-IVIG and her IGENEX test came back positive 2 days before her scheduled IVIG.

 

How do I go about getting an IGENEX test? And what is the cost?

[Fixit]

that is great doc k said halt and lets regroup ...for you, your child and your wallet..

what are you using to treat the lymes and how long do you think you'll be doing that (what was recommended)

and are you going straigt to ivig from there...

 

 

 

Both of my children have PANDAS and I did the lyme test on my daughter just to cover all of our basis pre-IVIG and her IGENEX test came back positive 2 days before her scheduled IVIG.

 

Dr. Kovacevic said to treat the lyme first and cancel the IVIG. I have to say that the antibiotics she is on for lyme have decreased her TICS dramatically. So, treating the lyme should also really help with any PANDAS/PITANDS symptoms your child may have..

 

Elizabeth

[KeithandElizabeth]

worriedmommy: I would definitely find a lyme literate doctor because treating lyme with antibiotics can be quite complicated and most doctors are not aware of this. Since you already have a positive Elisa, I would skip the IGENEX for now and wait until your lyme appointment and get the guidance of a good doctor.

 

fixit: I do think that I will go ahead with the IVIG for my daughter once we are almost done with the lyme treatment. Our son was so very severe, in terms of PANDAS, that I do not want to take any chances with our daughter, who is 11 years old.

 

Elizabeth

[lyme_mom]

My ds4 recently tested positive on the ELISA Lyme test, but negative on all bands on the the Western Blot. The doctor said there are false positives on the ELISA test. While I agree that having all negative bands on the Western Blot answers the Lyme question, I'm curious what would make his ELISA test positive. Anyone know exactly what the ELISA test looks at? Could it be an indicator or another problem, or is "false positive" a good enough answer.

 

i would agree with lyme mom....

on any test where you get a positive i would follow up...

its like the pregnancy tests you can get false negatives..maybe not producing enough hormone yet for the test..

but if its positive!!!!!! you can't be a little pregnant...the hormones are there

I love your analogy :-)!