I did the Igenex test with a doctor that isn't a LLMD and it came back CDC neg, but Igenex IND with Igm 41+, 31+, 34IND, 83-92IND and Igg 34IND, 39IND and 41++.
I went to a LLMD to have her help me understand my results and she isn't convinced I have Lyme based on Igenex test.
She made me do the Nano Trap test, which is $400. She said it's the most accurate test out there right now and it's the only one she trusts.
I don't know much about this new test and am afraid it's going to come back neg, even though I have symptoms.
She specifically thinks I have Bartonella. Has anyone done the Nano Trap test? I thought it was just for newly infected people?
If I have Lyme, it would've been from 5 years ago so I don't know if this test is for me, but I don't know. Help!
Posted by Lymetoo (Member # 743) on :
I have no clue. If she's a real LLMD, she would have trusted Igenex. (your test results scream Lyme) ... unless perhaps she is making money off the Nano Trap.
Posted by Jordana (Member # 45305) on :
I was going to do the nanotrap.I decided against it and after I did I got annoyed that the only way you can get it is if you agree to be part of the ILADS study and get it through an LLMD.
In fact if she is ordered the test for you she's a participating researcher.
If I were you i would just tell her you don't have 400 bucks to be 100 percent *sure* and you would like to be treated for Lyme please.
Posted by Catgirl (Member # 31149) on :
The correct way to diagnose lyme is by symptoms. A blood test is just used to confirm it. If she doesn't think you have it based upon your blood test and symptoms, then I would find another doc.
Posted by sardavis (Member # 48690) on :
Yeah, this is all very confusing. I thought for sure I had Lyme and then to go into her office and hear that she doesn't think that based on my Igenex test is a bummer. Also, I've already spent so much money and that test was $400 and her appt was $300. If she says it's negative, I don't even know what I'll do.
Posted by Jordana (Member # 45305) on :
It's positive. Get treated. I've spent thousands on testing and just really wasted a lot of time. Actually regret that more than the money.
Posted by Lymetoo (Member # 743) on :
She has a moral obligation to treat you.
Posted by project (Member # 46200) on :
The nanotrap is a really cool test though. If it was available I would have done it instead of Igenex which was also around $400 if I recall.
I mean there are other infections and the nanotrap will pretty much definitively say whether or not there is active replicating Borrelia.
I can't wait until it's more widely available, I think it's going to be the thing that blows the lid off this thing. It's going to be incredibly shocking to find out how many people have active Lyme.
Posted by Jordana (Member # 45305) on :
Totally agree project! I was excited to get the signoff and the kit but then I got results back from DNA connexions which found OSPA -- same thing, active Lyme.
And just want to point out that positive test was after about seven months of combined treatment with abx, herbs and bvt.
Posted by etb6855 (Member # 48383) on :
Where did ya'll go to have your Igenex blood tests drawn? I have a PICC line so drawing the blood isn't an issue but need a lab to spin the red top so it can be mailed off.
I have been trying to find an answer to this for a while. Do Quest or Labcorp just charge you for this and then you mail off your tests on your own?
Posted by Jordana (Member # 45305) on :
I just went to my local hospital. They did the draw and since they have their own fedex box they put it in their mail for me.
Just go wherever you go to get blood drawn and bring them the kit. They'll do it.
Posted by Robin123 (Member # 9197) on :
Get your bloodtest done early in the week at Quest or Labcorp and they will send it off.
Posted by cbb (Member # 788) on :
From my experiences through the years, I would skip Quest and Labcorp and use IGeneX for blood tests. There's a newer lab in PA that does cultures, but I don't have information on them.
I had the Nanotrap test and, in my opinion, it has pros and cons.
My results were negative, but my LLMD in NY said that doesn't mean absolutely "no LD". The test does not detect Lyme if it is intracellular. I don't remember the second part of his statement, but I think it was the cystic form of Lyme is not detected. Sorry...Lyme brain here.
What I understood him to say: Advantage is that test results come back quickly. Negative result means no evidence in the blood that can be filtered out by the kidneys.
Thankfully, they have improved the shipping. I had to secure dry ice to put with the frozen samples. Now, they include a "freeze pack" that you use when you ship it to the lab.
The $400 is the lab fee. You also have to pay for overnight shipping.
Needless to say, I was extremely disappointed after the time, effort and expense for the test, but you'll have to decide what's best for your situation.
Posted by Lymetoo (Member # 743) on :
cbb .. I THINK Robin was suggesting that Quest or LabCorp will do the blood draw for Igenex if you ask them.
Posted by cbb (Member # 788) on :
Actually, I was confused by the comment. Thanks for clearing that up.
Posted by Jordana (Member # 45305) on :
I don't think it's true that it doesn't detect Lyme if it's intracellular. It doesn't detect Lyme if it's inactive. In other words, you could still have it but when you took the test it wasn't shedding OSPA.
Posted by dogmom2 (Member # 23822) on :
seems like if this is part of research, you shouldn't have to pay to be tested.
Posted by cbb (Member # 788) on :
Jordana, I certainly wouldn't know, but that's the term he used. Sorry. I was just sharing information because I thought it may help someone.
Posted by Jordana (Member # 45305) on :
Agree dogmom!
Posted by sardavis (Member # 48690) on :
I wasn't aware of the nano trap being a research thing. She made it seem like it was just the best test out there. Is there a way to find out if it's in research still?
I don't understand how she knows this test is so much better if it hasn't even been out for a year yet?
Posted by Jordana (Member # 45305) on :
The reasoning is, lots of people have been exposed to Lyme. They could have been treated for Lyme. But the Lyme ( and their immune reaction) could be due to dead bug parts and not active live bugs.
What nanotrap is supposed to do it differentiate between active and nonactive Lyme, to try to figure out if it's active Lyme that's giving you symptoms. At some point I hope you'd be able to go to the doctor and he'd be able to say, yes you're sick but there is definitive proof you don't have lyme. Or yes we treated you with 28 days of doxy but it looks like you still have active Lyme.
It is the best test so far because it can tell between the two.