Lyme disease in children

[Rebecca]

If your child was diagnosed with Lyme disease, what testing was used?

 

Thank you for any help.

-Rebecca

[Corraleno]

ELISA, followed by Western Blot. There are two different WB tests, and the doctor needs to order the correct one. The IgM tests for a new, active infection (within 30 days or so) and the IgG tests for ongoing infection. If you get a postive ELISA but a negative Western Blot, be sure to ask which WB was ordered and ask for the other one as well. The pediatric rheumatologist who tested my son ordered the wrong one (IgM) and said he could "guarantee" me that DS did not have Lyme. I went to a different doctor and demanded the IgG, which was overwhelmingly positive, and DS spent the next 18 months on antibiotics.

[Lizzie in Ma]

Lyme disease is, always in the end, a clinical diagnosis.  The tests are insanely inaccurate.  ELISA is a utter waste of time.  Start with a Western Blot, IgG and IgM.  I can't recommend highly enough finding a Lyme literate MD.

http://whatislyme.com/understanding-lyme-tests/

 

Also, not to be argumentative but the IgG and IgM things, do NOT behave in Lyme as they ordinarily do with other diseases and infections.  Chronic lyme often shows only IgM bands.  From the article linked underneath.  "The immunological responses seen in Lyme disease, in all stages of the disease show a predominant IgM antibody response and a poor IgG response in the majority of cases. Of course there are exceptions to this rule.  In general, overall production of antibodies of either class in response to infection may be quite poor."

http://lymemd.blogspot.com/2014/04/the-igm-question-is-it-chronic-lyme.html

Edited March 3, 2016 by Lizzie in Ma

[Butter]

Fritz has a very obvious bulls-eye rash.  He has classic Lyme symptoms.  I had had it before as had my mom.  The doctor who diagnosed him had had Lyme Disease in the past as well (he's the one who also diagnosed me and my mom through blood tests).  The doctor chose not to do any tests because it was pretty clear Fritz had Lyme Disease.  He just treated.

 

ETA: Fritz was a few days from 4 years old when he was diagnosed.

Edited March 3, 2016 by Butter

[Carrie12345]

I honestly don't remember, but he was tested because he was highly symptomatic (but no rash), and the main goal was to rule out leukemia.  The following year, dd was treated without testing, based on a possible bulls eye.

[Corraleno]

Also, not to be argumentative but the IgG and IgM things, do NOT behave in Lyme as they ordinarily do with other diseases and infections.  Chronic lyme often shows only IgM bands.  From the article linked underneath.  "The immunological responses seen in Lyme disease, in all stages of the disease show a predominant IgM antibody response and a poor IgG response in the majority of cases. Of course there are exceptions to this rule.  In general, overall production of antibodies of either class in response to infection may be quite poor."

http://lymemd.blogspot.com/2014/04/the-igm-question-is-it-chronic-lyme.html

 

Well apparently my son was one of those exceptions. He had chronic Lyme, which wasn't diagnosed until 2 years after exposure. He never had a rash and we don't live in an endemic area, so original symptoms were dismissed as the flu. It wasn't until his knee swelled up to the size of a grapefruit that someone (the rheumatologist) thought to test for Lyme. The ELISA was positive, but the IgM was negative, so I was told the ELISA was a false positive and the negative IgM proved he didn't have Lyme. I went to another doctor and insisted on the IgG test, which came back positive for 9 different bands. So I would still urge anyone who is being tested, that if the IgM comes back negative, to insist on the IgG as well (and vice versa).

[Lizzie in Ma]

Well apparently my son was one of those exceptions. He had chronic Lyme, which wasn't diagnosed until 2 years after exposure. He never had a rash and we don't live in an endemic area, so original symptoms were dismissed as the flu. It wasn't until his knee swelled up to the size of a grapefruit that someone (the rheumatologist) thought to test for Lyme. The ELISA was positive, but the IgM was negative, so I was told the ELISA was a false positive and the negative IgM proved he didn't have Lyme. I went to another doctor and insisted on the IgG test, which came back positive for 9 different bands. So I would still urge anyone who is being tested, that if the IgM comes back negative, to insist on the IgG as well (and vice versa).

 

I don't believe in false positives for Lyme, and negative Igm absolutely doesn't prove he doesn't have Lyme.  IgG is often the case for a new infection, my caveat was that IgM, for Lyme, can also be acute and active.  More so if the infection is older.

You fought for him and you nailed it, that's what matters.  <3

 

The hell of it is, we DO live in an area where it is an epidemic and still it took 8 years to get a diagnosis for our oldest dd, thanks to CDC guidelines on what does and does not constitute a positive test.  The tests had positive bands but they were stamped negative by CDC criteria and neither our doctor or I, at the time, knew any better.  We lost years in which she could have been more easily and more successfully treated.

[Corraleno]

The hell of it is, we DO live in an area where it is an epidemic and still it took 8 years to get a diagnosis for our oldest dd, thanks to CDC guidelines on what does and does not constitute a positive test.  The tests had positive bands but they were stamped negative by CDC criteria and neither our doctor or I, at the time, knew any better.  We lost years in which she could have been more easily and more successfully treated.

 

Eight years — that's heartbreaking.  :crying:  I totally agree about the inadequacy of the CDC guidelines, and I shudder to think where DS would be now if the IgG had "only" shown 4 bands instead of 9. After the negative IgM, the rheumatologist diagnosed DS with juvenile arthritis and wanted to start him on steroids right away, which would have been a disaster for someone with Lyme. It's scary to think how many undiagnosed and misdiagnosed people there must be in this country, given how little most doctors know about it.  :sad:

[wapiti]

To add to the confusion, my ds twice tested negative through Labcorp (both Elisa and later the full Western Blot, no bands!) but extremely positive IgM through Igenex.  It's hard to know what to believe.

[Lizzie in Ma]

Eight years — that's heartbreaking.  :crying:  I totally agree about the inadequacy of the CDC guidelines, and I shudder to think where DS would be now if the IgG had "only" shown 4 bands instead of 9. After the negative IgM, the rheumatologist diagnosed DS with juvenile arthritis and wanted to start him on steroids right away, which would have been a disaster for someone with Lyme. It's scary to think how many undiagnosed and misdiagnosed people there must be in this country, given how little most doctors know about it.  :sad:

 

It is pure insanity.  I just don't understand.  :(

[Lizzie in Ma]

To add to the confusion, my ds twice tested negative through Labcorp (both Elisa and later the full Western Blot, no bands!) but extremely positive IgM through Igenex.  It's hard to know what to believe.

 

I get it, I really do.  My kids both had positive bands through Quest and C-Lab but they weren't CDC positives so they got stamped negative.  Through Igenex they were both CDC positive.  They were also positive through Immunosciences which is where we also got the co-infections nailed down.  Keep in mind, that Igenex tests for all the bands, even those removed from the regular tests after the infamous Deerborne Conference.  And now, with new variations being "discovered" all the time, the tests will just be more inaccurate.

That politics and money result in such suffering boggles my mind, but that's what it comes down to in the end.

 

[imagine.more]

Following: my 7 year old has lyme symptoms, had a bullseye rash, and we're waiting on test results this week.

[Lizzie in Ma]

Following: my 7 year old has lyme symptoms, had a bullseye rash, and we're waiting on test results this week.

 

If he has a bulls eye rash, tests are not needed, it should be a treat right away situation.  I would insist on 4-6 weeks on antibiotics, not one day less.