How to find a lab to test Lyme disease

1. How to find a lab to test Lyme disease? if you have been clinically diagnosed with Lyme disease or just got back a positive blood result (by IGeneX in the U.S. or the Public Health Lab in Canada) and don’t know where to turn, you can get in touch with Lyme Ontario or the Canadian Lyme disease Foundation (CanLyme) for further information, help and support. If you’d like to get right to the tutorial on how to send away a blood sample to IGeneX, skip to the next section entitled “IGeneX Testing Process” – but if you live in Ontario, be sure to read the important update six paragraphs below. Before I get into the tutorial, I just want to make everyone aware that blood testing – no matter where you have it done – is not a foolproof method to determine whether one has Lyme disease. There currently isn’t a reliable blood culture test that can detect LIVE bacteria; the best we can do is to test for antibodies and sometimes (depending on when you may have been exposed to the bacteria) a person will unfortunately not have made detectable antibodies at the time of testing. In Canada, an ELISA screening test is done first, but is not sensitive enough to screen for Lyme – according to a Health Canada newsletter outlining the limitations of our test kits. You should be aware that if you do not test positive on the initial screening, your blood will not undergo further testing with a Western Blot (the most accurate antibody test currently available). A negative blood test does not mean you don’t have Lyme disease. There are several reasons that IGeneX provides a better test, but the two that resonated with me were: a) I could order the Western Blot and, b) it tested for two stains instead of one. In my

2. own case, the blood testing I had done in Canada came back negative, yet I had close to 50 symptoms that my GP was unable to diagnose. That’s when I decided to send my blood for testing to IgeneX and seek out a Lyme Literate Medical Doctor (LLMD) in the U.S. who was familiar with diagnosing Lyme disease. Because on my clinical symptoms and the picture below of an Erythema Migrans rash that appeared on my shin while vacationing in Naples Florida, my LLMD diagnosed me with Lyme disease. You can click on this link to fill out a symptom questionnaire to take into your own doctor to determine if you could have Lyme disease and here are some other examples of EM rashes. When my IGeneX blood results came back positive, it supported the clinical diagnosis of Lyme disease(like I mentioned earlier, blood tests are not the be-all and end-all when it comes to diagnosing Lyme disease). ‘Erythema Migrans’ rash on the back of my shin is diagnostic of Lyme disease– no blood test is even needed! Not all Lyme rashes look the same; a target rash is not the only presentation. Most people never even get the rash! IMPORTANT UPDATE (ONTARIO ONLY): In Ontario, some Naturopaths were previously providing a service to patients by conducting the blood draw blood and taking care of shipping to IGeneX on behalf of their patients. New regulations now prevent Ontario-based Naturopaths from directly ordering out of country tests, which unfortunately includes Igenex. However, if you have a Naturopath or are planning on finding one, all is not lost. Your Naturopath can contact a company by the name of In-Common Laboratories (or ICL). ICL is a private not-for-profit lab. As long as your Naturopath is registered with ICL, he or she can order the test kit directly from ICL and sign the requisition for you. The test kit is then given to you, the patient, and all you have to do is take the kit into an affiliated Laboratory to get your blood drawn (ICL takes care of the shipping too). ICL, has partnered with Alpha Laboratories in Ontario and Biotest Labs in Ottawa. As long as you go into one of these two labs to have your blood drawn, they will take care of the rest. When results are in, ICL will then forward them on to your Naturopath for interpretation. Information to Pass Along to Your Naturopath

3. Alpha and Biotest Labs may have restricted hours at some locations, print out and take this pdf with you to your Naturopath if you are planning on doing the IGeneX testing through ICL: 2016- ILS Specimen Collection Hours for Naturopathic Doctors. Testing Process In May of 2013 I sent my own bloodwork off to IGeneX. make it easier for anyone else in Canada wanting to undergo better testing for Lyme diseaseby sending blood samples to IGeneX. Below is an itemized list of the process, followed by a detailed explanation and samples for each step. In this post, I’ll share what I learned to Decide on which blood tests you want in discussion Find a Lab in advance: check ahead to see which lab in your area can draw blood (charge is generally $25 – $35 and should be drawn on a Monday or Tuesday). Arrange a FedEx Account online, and then fill out Waybill and Commercial Invoice for customs once you have your kit. If you prefer not to set up an account, you will need to find a drop off location (visit a FedEx World Service Centre® or FedEx Authorized ShipCentre®) Find a Doctor or Naturopathic Doctor (ND) to sign the Test Requisition Form and fill out the rest. Have blood drawn at the lab. Be sure to bring the bright lime green instruction sheet included with the Kit so the lab technician knows what to do once blood is taken. Pack the vials according to the packing procedure found on the same instruction sheet. Arrange pick-up with FedEx. Pick-up can be arranged at your house or in some cases you may be able to drop off at a depot. Call FedEx at 1.800.463.3339 for assistance. You also have the option to ship without setting up an account by dropping your package off at a drop-off location: to ship without an account number, visit a FedEx World Service Centre® or FedEx Authorized ShipCentre®. Contact IGeneX for Kit IGeneX is a lab in California that specializes in testing for Lyme diseaseand other tick-borne diseases – or ‘co-infections’ – such as Babesia, Bartonella, Erlichia. More often than not, the tick leaves you with more than just a Lyme infection so it’s best to test for co-infections too. You can contact IGeneX at 1.800.832.3200 to order a test kit free of charge and to ask questions about which tests may be appropriate for you.

4. It will generally take up to two weeks for the kit to arrive, as it is sent by snail mail. As an alternative, some Lyme support groups and naturopathic doctors keep kits on-hand. If you can find one close to you, it may save you time to pick it up locally. Decide on Blood Tests Personally, I ordered #188 and #189 – Lyme Western Blot IgM and Lyme Western Blot IgG, as well as #5090 – the complete co-infection panel. Please see full pricing below for all the tests available (this lime sheet also has the test requirements for the lab technician and shipping requirements on it and comes with the IGeneX kit). My Lyme tests were $100 each and the co- infection panel was $660. Keep in mind that these prices may have changed since 2013 and you will have to factor in the Canadian dollar exchange rate. Finding a Lab to Draw Your Blood Have your blood drawn on Monday or Tuesday at the latest. I was going to have it done on Monday, but it was Memorial day in the States and nothing gets through customs on a holiday. Rather than have my blood sitting for a day in customs, I decided to postpone drawing blood until Tuesday. Any later than that and you run the risk of running into shipping delays and having your blood spoil before it can be tested (IGeneX does not work on the weekends). A blood draw for IGeneX testing will cost around $25 – $35 if you can find a local lab to do it. Not all labs in Canada will draw blood for you, so call ahead to labs in your own area before you show up to ensure they’ll do it. Initially I called LifeLabs’ head office and they said No. They said that IGeneX would have to call them to pre-arrange a contract first, so perhaps at some point in the future somebody will arrange that. Then I called my local Gamma-Dynacare lab and they said they would do it if I came some time after 11:00 when they’re not as busy. When I got there, the clinician had to call head office to check and she got the ok to proceed. I also heard that some locations of CML are familiar with the process, but again, you must call ahead to check the lab in your particular area.

5. FedEx Packaging and Procedures The kit will come in a FedEx clinical pak (UN 3373) which is specially designated for shipping of biological substances such as blood. Also included will be a FedEx International Air Waybill. Please see the picture below for a sample Waybill for help on how to fill out the information that is required. I checked off ‘FedEx Intl. Priority” under item #4 (Express Package Services) – depending on where you’re located, it will get the package there the next morning by 10:30 and is the best option for shipping to IGeneX . IGeneX filled out their own address information on the waybill, but the Recipients Tax ID Number was missing on mine. IGeneX’s ID number is that you will also need this number for the Commercial Invoice that has to be printed and included with your bill.