Question about son's Lyme test

Hi,
My son who is 12 has been having pain in the bottom of his feet, headaches, muscle aches (which have gotten better) and insomnia.This all started after a sinus infection (though he had been complaining about headaches and leg weakness weeks before the sinus infection). He went on antibiotics for the sinus infection and then the muscle pain started.

His doctor did run the Lyme titer test and his IGM titer came back positive but no bands were present so its considered negative I think,

My question is is it possible its still Lyme or perhaps another autoimmune. My daughter has chronic Lyme and co infections so I do know some about this but I had never had a test like this before.

His ANA is negative. Only other tests abnormal was sed rate 17 (range 0-15). Vit D was low and his CPK was low at 22 (range is 30-223) The doctor said he needs to exercise more and he is overweight for his age so that could be why the CPK is low. not sure if that is related.

I guess my main question is is a positive Lyme titer IGM significant? Can it still be Lyme or is it just a false positive. In know you are not doctors just looking for experience and insight.

Would Ignex would worth it? My daughter had a lot of tests done from them.

We can help you find a LLMD - just start a new thread “Looking for LLMD in/near __________”

Then enable your email option so members can send you suggestions.

Also, I should mention that my Lyme started with a sinus infection too.

I don’t understand what you mean the test was IgM positive but there were no bands.

Whenever I have had a Lyme WB, it tests IgG and IgM. There are 3 bands tested for IgM and more tested for IgG.

Here is what Igenex (a reputable lyme testing lab) says:

"The IgG/IgM Antibody Serology test is an ELISA (enzyme linked immunoassay), which indicates the presence of both IgG and IgM antibodies to B. burgdorferi. The IgG antibody often persists long after symptoms have disappeared. The presence of antibody indicates exposure, not active disease. A positive or equivocal test must be confirmed by both IgG and IgM Western Blots."

You could get the Western Blots test done via Igenex and see what shows up.

NOTE: You can have a negative test result and still have active lyme disease. Our immune system can be suppressed due to the infections.
A true LLMD will look into the patient's history, symptoms...response to a trial of antibiotics to determine an active infection.

He did have the Western Blot but no bands showed up at all. They were all absent

So is that negative? I was thinking some other infection may have triggered the positive Lyme.

Maybe I should have him retested through Igenix. The doctor has to order that though right

On a western blot there has to be a certain percentage of "activity" for it to be reported. So if the threshold is 60% and you had 59% activity nothing gets reported. But if your scoring 59% on a bunch of bands something is up. Thats a generalization but I hope you get the idea. Some labs that specialize in tick borne testing give a copy of the blot paper some score it differently using ++, + , indeterminate. If you have never been exposed to borrelia you will have close to zero activity on a band. Zero and 59% are reported the same way though. They are very different though.

Megan Eliz said...
on his Western blot igm they tested 41 23 39 all absent
igg 93 66 58 45 41 39 30 28 23 18 all absent

I guess my main question is: should I pursue further testing including co infections. in other words is a positive IGM but no bands on the Western Blot a significant finding.
His ped wants me to go to a rheumatologist

I would pursue additional testing with a LLMD. No harm in going to a rheumatologist. I have been to several they stared at me.

Maybe he doesn’t have Lyme. Maybe he has bartonella. Symptoms are suggestive of bartonella. You can have bartonella without Lyme.

Okay, I think maybe I understand what you’re asking now.

Are you saying the positive IgM was an ELISA test - the first tier of the 2 tiered standard Lyme test?

And he also had a Lyme Western Blot but there were no positive bands at all?

If that’s the case, then I guess retest.

just be aware that testing for bartonella is even less reliable than testing for lyme.

sorry to bear the bad news. but this is the current situation.

the best test out there is by a lab that specialises in bartonella called Galaxy

they have developed about the best test there is using a combination of leading edge methods and it includes sampling of 3 different days ( bartonella is rarely in the blood) , then culturing the result ( to increase the numbers of organisms) and then PCR testing that.

Even they only claim around 49% sensitivity for their test - so it gives you an idea of how hit and miss most are. especially a standard Elisa tests

IgenX have a bartonella western blot which is better than a standard Elisa which might be worth a try.

sensitivity is the biggest issue - if you get a positive PCR test you can be confident that's a true positive