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Avatar universal

Got my IGeneX collection kit in the mail. Which tests should I request?

I know that, ideally, I should get a complete Lyme and co-infection panel. However, since I don't know how much, if anything, my insurance will cover and don't have $1,200, where do I start? I know Ricobord suggested I start with a Western Blot and maybe CD57, but I see two Western Blots listed, the IgM and IgG. Do I need to ask for both of those if I'm ordering individual tests?

I see that, under panels, there is a Basic Lyme Panel (Western Blot IgG, Western Blot IgM, Lyme IFA) and a Complete Lyme Panel (Western Blot IgG, Western Blot IgM, Lyme IFA, PCR Serum and Whole Blood).

Is it worth it to get the basic lyme panel, or should I not bother if I'm not going to get the complete panel?

I know I don't have the funds to get tested for EVERYTHING but don't want to waste my time and money either by ordering tests that won't be sufficient in terms of determining whether I have or likely have Lyme.
19 Responses
Avatar universal
While I don't know how much those individual tests would cost I would try to get PCR.

This is from Igenex site: "For patients with clinical symptoms of Lyme Disease who test negative by the IgG or IgM Western Blot, the Whole Blood PCR or the LDA/Multiplex PCR Panel on urine may be appropriate. There are physician-developed antibiotic protocols to enhance the sensitivity of the LDA. In addition, there seems to be increased sensitivity of this test during the start of menses."

I would play safe and get PCR, multiplex PCR Test number 456 ( whole blood) rather than rely on IgG or IgM because immune system may not produces antibodies. Western blot or IgG/IgM can changes from one test to next test.  

CD57- My first and second(current) LLMD does not follow it or pay attention to it. My current LLMD was happy to order the test for me, for my own curiosity. It appears some patient can have normal CD57 for some reasons and still have Lyme disease?

CD57 will be worthwhile if yours come back very low because it will points to either HIV or lyme disease.  If it came back high, then you still could have lyme but no "evidence" to back it up.
Avatar universal
This is from Igenex site: "For patients with clinical symptoms of Lyme Disease who test negative by the IgG or IgM Western Blot, the Whole Blood PCR or the LDA/Multiplex PCR Panel on urine may be appropriate.
It seems to me this is recommending the PCR for people who test negative on the Western Blot.  Have you already tested negative on a Western Blot?
Avatar universal
No, I have not tested negative or positive for anything; I've never had any form of Lyme testing done.

The different Lyme panels available are as follows:

Basic Lyme Panel-- $260
Western Blot IgG, Western Blot IgM, Lyme IFA**

Complete Lyme Panel-- $475
Western Blot IgG, Western Blot IgM, Lyme IFA, PCR Serum and Whole Blood**

Initial Lyme Panel--$410
Western Blot IgG, Western Blot IgM, PCR Serum and Whole Blood

The Western Blot IgG and IgM are $100 each, and the CD57 is $138. The PCR alone is $235.

If the PCR is particularly important, I could *maybe* swing the Initial Lyme Panel if I sold some things on eBay or tried bringing some of my old clothes to Plato's Closet or something, but then I wouldn't be able to get the CD57, which, from the sounds of it, is a pretty good test to have done, too.

Would it be a good idea to JUST get the two Western Blots for now? That would just be $200...I think. I didn't realize there were two separate tests, and maybe there aren't.

Oh, and Stargazer, I did get your message and promise to respond to it first thing when I wake up! It's just a rather lengthy message, and, given that it's 2:00 am and I still have to log another 3 hours of work before I can go to sleep, I'd rather wait until later when I don't have to rush through a response. :)
Avatar universal
Forgot to add-- I'm also trying to avoid having one test done, waiting 2 weeks, getting negative results, having another test done, waiting another 2 weeks, etc. I would like to know whether or not I'm Lyme positive as soon as possible because I'm kind of in a time crunch given my living situation. There are a whole host of decisions that I'm under pressure to make, and I can't really make them until I know what the near future holds in store for me, which is largely dependent on whether or not I have Lyme.
Avatar universal
I can completely relate to not wanting to get one test at a time until you hit a positive. That is why I did the whole panel. At that point, time was more important than money to me.

Only you can decide what to order given your time and money constraints.  Both parts of the Western Blot (I didn't know you could order them separately) have the best chance of showing something.  All you need is one Lyme specific band to convince yourself, even if the overall result isn't officially positive.  (I only showed antibodies on the IgM portion, even though I had had Lyme for 6 years at that point.)

The blood PCR is less likely to be positive. Even the LLMD blog mentions this.  However, if your WB results aren't clear, then your next step would be to do an antibiotic challenge. The PCR on the urine with antibiotics is supposed to be very accurate.  (Be warned that the IDSA and CDC say these are not "standard" tests and they don't trust them.  ID docs would ignore a PCR, but many other docs would not.)

Given the cost of the PCR and limited funds, I personally would just choose the Western Blot first.  I wouldn't get the IFA (a screening test).  It hardly seems worth the money as it doesn't mean much either way. It can be false positive or false negative.

But that is just me.

You might also call your insurance company first thing Monday morning to ask how much they will reimburse.  You will probably have to give them the codes of the tests from the IGeneX order form before they can look it up for you. Some insurance companies don't cover PCR tests, but they should cover at least part of the Western Blot.  How much they reimburse you may affect your decision on what to order.
Avatar universal
Alright, so Western Blot it is. I didn't know the IFA was unreliable; I didn't even know what it was. I'm just going to ask if I can get the WB done and maybe ask to throw in the CD57 too. I'm going to call my insurance tomorrow, too. Meant to call today but ran out of time by the time I was finished with my acupuncture appt. Thanks!
Avatar universal
I called my insurance, and the woman sounded really confused. She had never heard of a Western Blot test before but told me that, if it's deemed medically necessary, chances are 80% will be reimbursed if the doctor who orders the test is in network and 50% if the doctor is out of network. I don't know if the test will be considered medically necessary if I'm the one who requests it, but if it is, I really hope I can convince one of my in-network doctors to run it so that I can get the maximum reimbursement.
1763947 tn?1334058919
I think getting a CD-57 is a good idea. I hope your insurance comes through, mine paid all but deductible on the Western Blot but all companies are different.
Good luck!
Avatar universal
I'm going to ask if I can have the CD-57 done as well. Especially if my insurance will cover 50-80% of the Western Blot, the test is cheap enough that it's not worth waiting on the WB results to have it done. Who knows how much my doctor will be willing to do for me, though.
1763947 tn?1334058919
Burascano says he uses CD-57 as a guideline to see if progress is being made. Good idea!
4205163 tn?1354293660
So glad I came across this question. I just recieved mine as well and I have no idea what to order! I wish I had a doctor that did!! I was just going to order the complete Lyme panel, should I order more?
1763947 tn?1334058919
Did you get an Igenex kit?
If so, definitely test for co-infections. As well as the above.
1763947 tn?1334058919
If you go the igeneX route, please also test for Co-infections.
Avatar universal
I don't think I can because I don't think my insurance covers them, and they're significantly more expensive than the Lyme tests, but thank you for the suggestion. :)
Avatar universal
Because there are so many possible co-infections that are not obvious, and so many tests that cost so much money, I would find a good LLMD first and let the doc determine what to test for.  

It's not simple like a pregnancy test.  There are too many diseases that the Lyme ticks carry, too many uneven responses by the immune system, and too many imperfect tests to be able to cover all the possibilities effectively without expert guidance.  The money you save on not ordering the unnecessary or inappropriate tests will likely pay for the advice of a Lyme specialist to diagnose you properly and get you started on treatment.

Best wishes --
Avatar universal
Do you have a doctor who is willing to sign off on the testing for you yet?
4205163 tn?1354293660
I do, but he just signed it and sent me on my way to do it myself. Every lab I call to draw my blood has turned me down. I think I just need to find a doctor that knows what he's doing, I can't do it myself, I'm way too overwhelmed by all of this. Does anyone know how to search for a LLMD doc in a certain area?
Avatar universal
you can send an email to

                       contact [at] ilads [dot] org

and tell them what area you are in and can travel to.  they will (so I understand) send you one or more names of ILADS members, but remember that there's no admission test to be an ILADS member, but it's a start.

the other way to search is just to google/search for something like

                        LLMD Detroit

or wherever you are or can get to ... you might want to do several searches that overlap.  Like if you're in Cincinnati OH, also search Kentucky and Indiana.

And of course, post here 'Need LLMD in Iowa' or wherever you are, and someone can send you private message with any recommendations they may have.
Avatar universal
You need a lab that has the equipment to "spin" the vial before they ship it out. Call your doctor's office and ask which lab has the right equipment. Nearly all big medical centers and hospitals do. i was turned down by my local lab and had to go to the hospital lab.

If the lab takes your insurance, they will do it. Because your doc signed the form, your insurance should cover the cost of the draw. If you don't have insurance, you will need to pay for the draw.  A reasonable price is about $35. The shipping is prepaid, so you don't have to worry about that.  

Make sure ALL of the doctor's info is filled in on the form, including the special number each doc has. (Can't remember what it's called.). Otherwise, IGeneX won't run the tests and you'll have to do it again.

Also, check the instructions for your locations.  It is two-day shipping so if you're in the Midwest or East, I think you aren't supposed to ship it on a Thursday or Friday.
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