New Borrelia test

[philamom]

Since my Dd has been off antibiotics since the end of June, I decided to run the new borrelia culture. It's positive. I will be receiving the hard copy (picture of it swimming in the blood) soon.

 

Even though she was Igenex positive IgM, and more recently positive IgM & IgG, it's still a blow to the stomach.

 

Just thought I would share.

 

I guess this will help with insurance purposes, right?

Edited January 11, 2012 by philamom

[LNN]

So now you have no doubts. There's no question. I'm sure it's hard to acknowledge, but does it make it easier - to know that this could be the driving force behind the DIL and gastro issues - or do you think it's in addition to - and not the cause of - these other things?

[lyme_mom]

Where do u get the test?

[philamom]

It's been a hectic day for me so I'll post more later.

 

The test is the Spirochete/Borrelia culture from Advanced Labs. Just came out a few months ago.

[hawks]

Should this really help in determining pandas vs lyme?

[philamom]

Should this really help in determining pandas vs lyme?

Well in my situation, it just confirmed that strep isn't Dd's only trigger (of course, it was already assumed). But Dd does react to strep and was in the PANDAS range on the Cunningham test. She would fall into the PANS catagory. It also proves her lyme is still active.

Edited January 11, 2012 by philamom

[momcap]

Well in my situation, it just confirmed that strep isn't Dd's only trigger (of course, it was already assumed). But Dd does react to strep and was in the PANDAS range on the Cunningham test. She would fall into the PANS catagory. It also proves her lyme is still active.

 

Sounds like my DS - reacts very badly to strep, in high PANDAS range on Cunninghams, and positive for lyme. I REALLY wish I could get the new test, mostly for my own peace of mind, but also for my family doc who is no longer on board with our treatment plan. He thinks after 6 months on various antibiotics the lyme is long gone and what are we treating now? Last I heard the test is U.S. only right now, and I'm in Canada.

 

Has your DD already been treated for lyme, or was she on the antibiotics for PANDAS?

[philamom]

Well in my situation, it just confirmed that strep isn't Dd's only trigger (of course, it was already assumed). But Dd does react to strep and was in the PANDAS range on the Cunningham test. She would fall into the PANS catagory. It also proves her lyme is still active.

 

Sounds like my DS - reacts very badly to strep, in high PANDAS range on Cunninghams, and positive for lyme. I REALLY wish I could get the new test, mostly for my own peace of mind, but also for my family doc who is no longer on board with our treatment plan. He thinks after 6 months on various antibiotics the lyme is long gone and what are we treating now? Last I heard the test is U.S. only right now, and I'm in Canada.

 

Has your DD already been treated for lyme, or was she on the antibiotics for PANDAS?

Yes, I hope one day (soon) it will be available to everyone and covered by insurance. A hefty price tag at $595. I'm going to submit to insurance - hopefully get some reimbursement.

Dd was on lyme combo for 11 months. Lyme doctor stopped treatment due to elevated liver functions. Since then she's had other abnormal labs that have kept her off antibiotics. So I asked my local doctor to order it. Yes, mostly for my own peace of mind.

Edited January 11, 2012 by philamom

[philamom]

So now you have no doubts. There's no question. I'm sure it's hard to acknowledge, but does it make it easier - to know that this could be the driving force behind the DIL and gastro issues - or do you think it's in addition to - and not the cause of - these other things?

I wish I had the answer to that one! I do know that my daughter had the GERD and GI issues prior to treatment, and that they went away completly while on lyme treatment. She's off abx right now. We recently attempted to put her back on zith and it made the GI/nausea symptoms much, much worse - stopped it after 3 days. That could be a symptom of DIL (or possibly a herx). She also continues to test positive for Bartonella. Her DNase was also elevated since Sept - finally back in the 200's.

Edited January 11, 2012 by philamom