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monarchcat

Lyme results, please help interpret!

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I mentioned our lyme results in the Immune Complexes thread but didn't want to hijack that thread. Dr. B wanted both kids tested for Lyme, and they were supposed to go to Igenex, but our lab apparently screwed up because they appear to gave to gone to an "Imugen Lab" locally. There is actually more info on my daughter's test (3 years old, just diagnosed w/ PANDAS after sudden OCD w/ strep). My son has been a much more long term, chronic case of PANDAS. Here is a picture of my daughter's results. My son's are the same antibody levels (<1) and he only has a "41" under "B. borgdorferi 49736. Nothing else. My daughter's have a 41 under B. borg. G39/40 and a 58, 54, and 41 under B. Borg. 49736.

 

I hope the image helps explain. Can anyone tell me what this means? I'm thinking we may have to repeat the tests with Igenex and hope the lab doesn't screw up again, but I'll have to wait to talk to Dr. B.

 

frame022.jpg

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I mentioned our lyme results in the Immune Complexes thread but didn't want to hijack that thread. Dr. B wanted both kids tested for Lyme, and they were supposed to go to Igenex, but our lab apparently screwed up because they appear to gave to gone to an "Imugen Lab" locally. There is actually more info on my daughter's test (3 years old, just diagnosed w/ PANDAS after sudden OCD w/ strep). My son has been a much more long term, chronic case of PANDAS. Here is a picture of my daughter's results. My son's are the same antibody levels (<1) and he only has a "41" under "B. borgdorferi 49736. Nothing else. My daughter's have a 41 under B. borg. G39/40 and a 58, 54, and 41 under B. Borg. 49736.

 

I hope the image helps explain. Can anyone tell me what this means? I'm thinking we may have to repeat the tests with Igenex and hope the lab doesn't screw up again, but I'll have to wait to talk to Dr. B.

 

frame022.jpg

 

Hi. my dd goes to see Dr. B. as well. We need to get Lyme ruled out. I ended up calling Igenix and they sent us a blood draw kit. Then we had Dr. B. fill out the form that was included with the kit and sign it. Quest wouldn't draw the blood for an outside lab where we live. I found out that Children's Hospital in Hartford will draw blood for outside sources, and my daughter's pediatrician said he would, so we are going to the pediatrician to have it drawn and am sending to Igenix myself. I'm sorry I don't know about the lab test results you posted. Try finding a phone number for Imugen Lab and call them and have them explain the results! Good Luck!!

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I mentioned our lyme results in the Immune Complexes thread but didn't want to hijack that thread. Dr. B wanted both kids tested for Lyme, and they were supposed to go to Igenex, but our lab apparently screwed up because they appear to gave to gone to an "Imugen Lab" locally. There is actually more info on my daughter's test (3 years old, just diagnosed w/ PANDAS after sudden OCD w/ strep). My son has been a much more long term, chronic case of PANDAS. Here is a picture of my daughter's results. My son's are the same antibody levels (<1) and he only has a "41" under "B. borgdorferi 49736. Nothing else. My daughter's have a 41 under B. borg. G39/40 and a 58, 54, and 41 under B. Borg. 49736.

 

I hope the image helps explain. Can anyone tell me what this means? I'm thinking we may have to repeat the tests with Igenex and hope the lab doesn't screw up again, but I'll have to wait to talk to Dr. B.

 

frame022.jpg

 

 

I'm not familiar with that lab or that format for results. But, it looks like they are saying the western blot results show 41 for your son and 41, 54, and 58 for your daughter. Bands 41 and 58 are in the category of diagnostic of lyme, neither are thought to be in the category of highly specific for lyme (such as band 39 is). Some like to see more than 1 or 2 bands before diagnosing lyme, whereas other more aggressive doctors may diagnose with just band 41 if symptoms look so much like lyme, as opposed to other conditions thought to trigger band 41. It is much trickier because you and your doctor may want to figure out if the symptoms are all explanable by PANDAS or if there are lyme symptoms. If you are lucky, you can find a lyme specialist who is familiar with PANDAS. You are in the same conundrum as many who opt for lyme testing, which is that it leaves so many people wondering what they have really learned.

 

Michael

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I would redo the test via IGENEX because they also test for the most lyme prevalent bands such as band 31 and band 34.

 

I would also test for the immune complexes, if you have not already, since high immune complexes (c3d) can lead to a false negative lyme test.

 

These are just my thoughts.

 

Elizabeth

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What other conditions can make band 41 positive? It is the only band my son had positive.

TIA.

Colleen

 

 

I ran across a good discussion on these other conditions once. I'll try to find it tonight. Not sure where it was, perhaps in the "Cure Unknown" book. I know that H.Pylori, the thing that causes ulcers, is one of the other conditions, that's the only one I remember.

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Thanks so much for the replies! I am still waiting to hear from Dr T, but I plan on further testing- Igenex, I guess is the route to go. I have been through so much with my kids with strep that I want to get a handle now on this if it could be Lymes.

 

What I find kind of strange is that all my kids live at the same house and I have pulled multiple ticks off of all four of them over the past years. Plus, 3 of our neighbors have Lymes. Why does only one of my 4 kids test positive. It makes me paranoid that I should do the Igenex testing with all 4 in case my other 3 children got false negatives, but our medical bills are soaring...

 

Colleen

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What other conditions can make band 41 positive? It is the only band my son had positive.

TIA.

Colleen

My understanding is that Mycoplasma can cause a positive 41.

 

I just found out my daughter has Lyme and she also has slightly elevated Mycoplasma titers. I was told elevated Mycoplasma is common in Lyme patients. I don't know...maybe someone else can chime in.

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i believe that mycoplasma is a co-infection that ticks can carry -along with the borrelia bacteria- someone else can verify if that is true or not

 

there are other bacteria and parasites that ticks carry in addition to the actual "Lyme" bacteria that can cause health problems and often when a person is not getting healthier despite treatment, it may be due to the co-infection.

 

 

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Yes, mycoplasma is a common coinfection of Lyme. From what I understand, ticks can actually transmit certain strains of mycoplasma, but also a person with Lyme is simply more susceptible to other infections, such as mycoplasma pneumoniae, due to a weakened immune system. I think this was the case for my son. He tested positive (quite high) for mycoplasma pneumonia (and had some symptoms for several months before testing), but I believe it was a secondary infection that he acquired well after the borellia infection. (He had Lyme for 2 years before being diagnosed.)

 

Monarchcat - I would also recommend testing through IGeneX unless you and Dr. B are both comfortable with the results from Imugen. If you read the info about Lyme on the Imugen website, you'll see they are very dismissive of chronic Lyme disease and strictly follow CDC criteria.

Edited by JT's Mom

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My ds had a high CamKinase test (194) and then took a lyme test through IGenex. He had a positive IgG result with band 41, 34 and INDETERMINATE with bands 34 and 39. Could strep create the positives in this test? Thanks!

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You also had band 39 present on results. Here is some information on band 39 from another post:

 

39 kDa is from the inner part of the borrelia burgdorferi bacteria called the endocytoplasmic reticulum. It is the reddest flag of all the sixteen antibodies on the blot. Other bacteria that are like the Lyme bacteria (borrelia recurrentis, etc.) do not even have the genetics to code for this, much less produce it. The 39 appear to be unique to Lyme bacteria. It has even been suggested that a 39 by itself is enough to be a positive test.

 

-Wendy

Edited by SF Mom

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