Feedback on new lyme test

[eljomom]

Just curious......the lyme test that Philamom has posted about that does not look for antibodies but instead is able to culture spirochetes from the blood sample. Has anyone had this done? Any LLMD's using it now?

[philamom]

I'm assuming you mean besides me - I haven't heard of anyone else runnning it. You (or your child) would need to be off abx for at least 4 weeks. My daughter received a positive culture. I should receive a hard copy soon which gives more info and a picture (or slide) of the borrelia spirochete. When I receive it I will post more details. I will also post if I receive any reimbursement.

[momcap]

My LLMD has the test kits, but none of her patients have opted to run the test yet. We are planning to do it in 4 weeks, and we will be the first. I think there are probably several reasons for not doing it, but I'm speculating:

1. Going off antibiotics for 4 weeks (during strep season )

2. Possibility of a negative, which tells us nothing.

3. Cost $595 and they don't take insurance.

We're doing it anyway, because if we do get a positive it is definitive.

[debbie5846]

How accurate is the new Lyme test??

 

Compared to the Igenex test??

[socalmom]

May I ask the name of this test?

[momcap]

http://www.advanced-lab.com/news/borrelia_culture_update.php

[momcap]

How accurate is the new Lyme test??

 

Compared to the Igenex test??

 

A positive result is definitive. If they culture borellia from your blood then there was borellia in your blood at the time of the blood draw. Period.

 

A negative result - not so simple. My LLMD told me they are having an 80% success rate in culturing borellia (lyme) from a known positive sample. AND, you actually have to catch borellia in your blood sample - a bit like a needle in a haystack, since it can be anywhere in your body. You have to be off antibiotics for 4 weeks and do the blood draw in the afternoon when spirochetemia (spirochetes in the blood stream) is more likely. So you could easily have lyme and get a negative result. I am not aware of any test that will definitely rule out lyme disease, and that is a point of contention with a lot of people.

 

Igenex - I'm assuming you're talking about the Western blot - is an antibody test. If it's positive, technically all you know for sure is that you have been exposed to lyme disease. The test can not tell you 100% that you still have it. Although in the lyme world it is pretty much assumed that if you have exposure and were not treated, or not treated adequately, then you have lyme disease. A positive Western blot plus lyme symptoms is what our doctor used to diagnose my boys. Igenex also has a PCR test. We didn't do it, but from what I understand it looks for lyme DNA in a sample - blood, urine, etc.

 

Hopefully others will chime in more. This is just what I understand of these tests from my own research.

[MichaelTampa]

Haven't done it on myself since I'm confident I have lyme. A positive result wouldn't change how I'll treat and a negative result wouldn't change how I'll treat. Haven't been to a true lyme specialist in a while. My llmd but not lyme specialist doc hasn't brought up this test, don't know if he's heard of it or not, so we haven't discussed it.

[philamom]

Haven't done it on myself since I'm confident I have lyme. A positive result wouldn't change how I'll treat and a negative result wouldn't change how I'll treat. Haven't been to a true lyme specialist in a while. My llmd but not lyme specialist doc hasn't brought up this test, don't know if he's heard of it or not, so we haven't discussed it.

Excellent point Michael. That is a good question to ask before putting out that kind of moola. One I asked myself for a few weeks. In the end, when faced with a possible DIL diagnosis, I decided to order it. Truth be told, it was actually a christmas present from my family. Thank you Mom & Dad! lol

[debbie5846]

What time, is the best time to have the blood drawn for the new blood culture test. I know they say early afternoon.

I had someone tell me 3 or 4 pm. Is this early afternnon??

Please give me your suggestions.

 

Thanks,

Debbie

[debbie5846]

What time, is the best time to have the blood drawn for the new blood culture test. I know they say early afternoon.

I had someone tell me 3 or 4 pm. Is this early afternnon??

Please give me your suggestions.

 

Thanks,

Debbie

[philamom]

What time, is the best time to have the blood drawn for the new blood culture test. I know they say early afternoon.

I had someone tell me 3 or 4 pm. Is this early afternnon??

Please give me your suggestions.

 

Thanks,

Debbie

We did it around 2-2:30. If you are making arrangements to have Fed Ex pick it up at your house, be certain they have a late pick up time. We took it our local Fed Ex bldg (10 min away), so there were no issues.

edit- It has to get to them within 24 hours.

Edited January 24, 2012 by philamom

[debbie5846]

Philamom thanks for the information on the time, I am also planning on taking it to the Fedex building, I don't need the added stress, of worrying they won't pick it up on time.

 

Another question, how long did it take after the blood was drawn for your doctor to receive the results?

 

Thanks for all your help,

Debbie

[philamom]

Ten days after the blood draw our doctor received a (preliminary) copy of the result. They send a hard copy to follow. We haven't received the hard copy yet - but our doctor is on vacation this week, so it's probably sitting on his desk.

[debbie5846]

Sorry, But I have one more question.

The lab the doctor recommended we go to for the blood draw, will not let me take the box to FedEx , there policy does not allow them to give you back the blood sample. The BIGGEST problem with this, is the fact that the blood has to be drawn by 10am, so they can send it out.

 

I don't think we should draw the blood that early.

 

What lab did you use?

 

Thanks again,

Debbie