LYME DISEASE COMMUNITY
Carol in PA or anyone who knows

Carol in PA or anyone who knows

What is the most comprehensive test for Lyme Disease? I think my sister may have it, but want to make sure she's tested properly. Thanks in advance.
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Lyme IGG/IGM from Igenex labs in California in my opinion.
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There are a number of tests, but the Western Blot IgG and IgM are good for initial screening.  These are #188 and 189 on the Igenex.com website.  You can call the lab's toll free number and ask for a "kit" to be sent to you.  This contains instructions and forms, test tube, and packing materials to ship it back to them via FedEx, postpaid.

You can go to Igenex's website and read the information there.
The receptionist at Igenex is helpful, and even agreed to send two kits, when I called for a friend.  
I've posted in detail about the procedure and my experiences getting the tests done, at LymeNet dot org.  

There are other tests available too, to test for antibodies to the co-infections that many people may have, such as Babesiosis, Erlichia, mycoplasma.
LLMD's are usually the ones to decide which tests to use.
There is also at least one lab that does a live blood smear to look for infection, but I don't know the particulars.

There are articles written by Lyme literate physicians about interpreting the test results.  
If you ask on the medical forum at LymeNet dot org, several people can point you to that info.

I don't know if the Western Blot tests are the "most comprehensive" for Lyme.
Your body doesn't always make antibodies properly, and the test is only for three strains of Lyme bacteria.  Most regular labs only test for one strain.  From what I understand, there are several hundred strains, which is one reason that the tests are inaccurate.

Igenex requests that you have the blood drawn and shipped on a Monday, Tuesday, or Wednesday, so that they get it before the weekend.
Many labs think nothing of letting the serum sample sit for days before testing.

When my rheumatologist refused to send my test to "that lab," I was able to convince my family doctor to order the test.  
Everyone in the office kept asking why I didn't just have the test done locally.  I told them that I would pay for it, they wouldn't have to submit it to insurance.  I even agreed to take it home with me, package it properly, and call FedEx to pick it up.  
The results get sent to the physician in about two weeks.  I picked up a copy of the results, and went online to figure out what they meant.  
Most people just don't know what to do about all this, and it's easier to go to a Lyme literate M.D. who will take care of it all.

Many physicians have been told that all blood tests sent to the Igenex lab come back positive.  This has been discussed at LymeNet, and a number of people have stated that their results were negative for Lyme.  However, if the LLMD was willing to make a clinical diagnosis, based on their symptoms, they were able to get treatment.

People don't usually make arrangements to get the tests sent to a specialty lab like Igenex unless they strongly suspect that they have a tick borne infection.
So many people have had several negative tests for years, before getting tested at Igenex.  Igenex reports all the "bands" that are tested, whereas most labs will only report specific ones.  Some of the bands are very specific for Lyme.
I thought I could just go to my doctor and ask to be tested, and he would know what to do.  Silly me.  I had no idea.  Hah, don't get me started....

Carol
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Thanks.
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what is the cost for all of these tests from igenex?
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Desertgirl:
The last time I check Igenex.com I did not see all the prices listed.
The Western Blot tests are about $95 each, and that includes the postpaid FedEx envelope for return shipping.  (They will ship the "kit" to you for free.)
I don't know how much the different tests for coinfections are...usually the LLMD decides which ones to order.
You can look at the information on the Igenex.com site.  They have a toll free number, and it would be no problem to call and ask for prices, if you want to do that.
If you call and order a kit for the two Western Blot tests, you are not obligated to use them.  
But if you can persuade your doctor to write the order for the tests (Western Blot IgG and IgM) on a prescription pad for you, then you can go to any lab to have the blood drawn.

Carol
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Thanks for yor post.
I was just diagnosed with lyme disease, finally!  I tested positive for Lyme disease on the Western Blot that followed my Elisa test that was also high.  

By CDC giudelines, I would not be positive.  However, I am seeing a lyme literate Doctor in PA who studied under Dr. Burrascano @ Columbia U. before his retirement.  
I popped positve for 2 bands, IGG 41. and IGM 23.  Both these bands are specific for Lyme and only lyme.  CDC would have called it positive if I popped for only one more band, band 39.  

Dr. Steere of Yale who's published lots on lyme,  says if one has only positive band IGG 41, with symptoms, they have Lyme.

The 3 lessons I learned are: 1) request your lab results and review them yourself.  You should not have any bands showing positve!  And, if you have only one positve band, and its IGM 41, and you have the classic symptoms, you have lyme.

2) Forget CDC guidelines, and, 3) get a lyme literate Doctor.

Sincerely,
xeverything  

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