1) I don't remember being bit by a tick, so why should I consider Lyme testing?
The Ixodes tick feeds on birds, squirrels and other rodents, that then can come into your yard. This in itself, offers the opportunity to come in contact with Lyme. There is also evidence in Canada that mosquitoes carry Lyme as well.
http://www.canlyme.com/mosquitos_carry_lyme.html
Either in the woods, or in your backyard, or from your pets, there are various ways that Borrelia burgdorferi, the Lyme bacterium can come into contact with you. Most of the time co-infections are also carried by the tick. Some, but not all, include Bartonella, Babesiosis, Ehrlichiosis, and Rickettsia. These, in and of themselves, can cause severe and debilitating symptoms.
2) I heard that since testing can be faulty, that legally, you can get Lyme treatment if you are clinically assessed with a Lyme diagnosis in a doctors office. Why do I need the test then?
It's certainly true that if you are clinically dx'd with Lyme, that your doctor can begin treatment. Unfortunately, most doctors do not understand how to properly assess you for Lyme Disease. Even most Neurological doctors, and infectious disease specialists do not understand it. It's a very complex, multi-system illness, and very mis-understood by doctors to date. They may think they are adequately prepared to asses you, but they do not.
Only a trusted LLMD (Lyme Literate Medical Doctor) can assess you correctly for Lyme Disease, not a primary doctor, neurologist, and not a infectious disease specialist(IDS);especially an IDS. IDS's tow the CDC and the IDSA line, and if you do not clinically present for Lyme, may not offer a test. And if they do offer a test, they will most likely use the ELISA test. They may not understand which co-infections you should be tested for either. These LLMD's have decades of experience assessing, testing and appropriately treating people with Lyme and Lyme's co-infections. They also understand that there are many people who do not present clinically for Lyme Disease, and testing may help, although the testing can be false negative and false positive (Reasons below for false-negative). And even if you do present clinically for Lyme Disease, your LLMD may still want to follow up with testing for Borrelia burgdorfer and co-infections.
3) Ok, so I think want to get tested. Is this a test my doctor can perform?
The standard testing for Lyme Disease that your doctor generally orders, is not sufficient for many reasons, to adequately detect Lyme. This test, the ELISA test, is 50-59% inaccurate. Some, like myself, had this test performed early in their illness, and then disregarded Lyme as a cause for their illness when it returned negative. I had three ELISA Lyme tests between 1993 and 2004; all negative. It was only after 17 years of being severely ill with a dx of CFS/ME, in November or 2010, that I found out I was positive for Lyme, Bartonella and Babesia (Babesia was confirmed in May, 2011).
The best thing now for you to get in to see an LLMD to begin assessment. There are many resources that will help you do this. Here's are a few:
The western blot is performed by many labs, but some of the labs have different standards of interpreting the tests. In order to get the most accurate results, there are reputable Lyme labs you should consider getting tested from. IGeneX, Fry labs and a few more are listed on this blogs Good Lyme Lab Page:
http://pushpinangels.blogspot.com/p/good-lyme-lab-list.html
http://pushpinangels.blogspot.com/p/good-lyme-lab-list.html
Note there are no lyme labs yet I have resourced for international needs, but other national Lyme Associations (Especially ILADS) may have listings. Note that all of these labs are randomly tested by the FDA, as is every other lab in the US, for accuracy. The latest ratings should be listed on each labs' web sites.
4) Great, how do I get tested using a Western Blot from a lab listed above?
The LLMD you seek and visit will sort that all out for you. Your primary doctor may not agree that you need another Lyme test, and some may balk when you tell them you want a certain lab to perform the test. The CDC and the IDSA still project to the world that Lyme can be treated in 30 days, and that Chronic Lyme doesn't exist. These outdated policies are still all your primary doctor may know of, and accept as truth.
If your doctor will approve of doing the test for you, for example, with IGeneX, then you can do it, but you need to understand why it may not be the best idea. The test requisition forms are complex, and it's important they understand which Lyme and Co-infections panels, or single tests to order. They will need to have an understanding of which co-infections exist in the various regions of the US. Then, they will need to know where you have traveled to in your past, and where you currently live, to know which co-infection tests to order.
If you still think having your doctor approve the test for you is the best answer, than when you get the test results from your doctor, it's very important to get a copy of it. Sometimes, doctor offices misinterpret the findings. And then you can take the copied test to your LLMD.
If at all possible, it's still recommended that you get an LLMD first, to assess you and test you at a good lab, instead of your primary doctor. If your doctor wants to refer you to a neurologist, or and infectious disease specialist, this Will Do You No Good. The LLMD's are the experts, and will not miss any clues, and/or tests they need to order on your behalf. Do not accept any other referral options than an LLMD. Unfortunately, seeing an LLMD may cost you out of pocket. But it is worth it and more, to get an accurate dx, but more importantly, to get treatment!
The LLMD you seek and visit will sort that all out for you. Your primary doctor may not agree that you need another Lyme test, and some may balk when you tell them you want a certain lab to perform the test. The CDC and the IDSA still project to the world that Lyme can be treated in 30 days, and that Chronic Lyme doesn't exist. These outdated policies are still all your primary doctor may know of, and accept as truth.
If your doctor will approve of doing the test for you, for example, with IGeneX, then you can do it, but you need to understand why it may not be the best idea. The test requisition forms are complex, and it's important they understand which Lyme and Co-infections panels, or single tests to order. They will need to have an understanding of which co-infections exist in the various regions of the US. Then, they will need to know where you have traveled to in your past, and where you currently live, to know which co-infection tests to order.
If you still think having your doctor approve the test for you is the best answer, than when you get the test results from your doctor, it's very important to get a copy of it. Sometimes, doctor offices misinterpret the findings. And then you can take the copied test to your LLMD.
If at all possible, it's still recommended that you get an LLMD first, to assess you and test you at a good lab, instead of your primary doctor. If your doctor wants to refer you to a neurologist, or and infectious disease specialist, this Will Do You No Good. The LLMD's are the experts, and will not miss any clues, and/or tests they need to order on your behalf. Do not accept any other referral options than an LLMD. Unfortunately, seeing an LLMD may cost you out of pocket. But it is worth it and more, to get an accurate dx, but more importantly, to get treatment!
5) I got the test back, and it's negative. Is there any reasons it could be false-negative?
YES.
Some reasons you still may return a false-negative test are listed here:
http://pushpinangels.blogspot.com/p/reasons-for-false-negative-tests.html
Please review them all carefully before you take the test, as certain medications you are taking, and/or current infections could result in a negative test. There are many other reasons listed, and each needs to be considered before you take the test.
YES.
Some reasons you still may return a false-negative test are listed here:
http://pushpinangels.blogspot.com/p/reasons-for-false-negative-tests.html
Please review them all carefully before you take the test, as certain medications you are taking, and/or current infections could result in a negative test. There are many other reasons listed, and each needs to be considered before you take the test.
