Lyme Disease Testing
Since creating Lady of Lyme in 2011 I have seen a great need for easy info about testing (what tests to run, what do they mean?) and also easier access for patients to order tests themselves when Doctor's refuse.
I have been searching for ways to help remedy this situation for over 5 years, and I am happy to finally launch this page, where all the information and resources are in one organized place. I have been lucky to have a Doctor who understood my need to investigate things, and anytime I went to him and said, "can we run this test?" He always said yes. He understood that as a patient I knew my body the best, and I wish all Doctors worked in this manner. However, since unfortunately they don't, I will share what tests you need to look at every step of the way. |
Acute Lyme Disease - What To Do If You Just Found A Tick On You?
Step 1: Properly remove the tick from yourself.
Step 2: Save the tick and send it off for free tick-testing to see what bacteria and diseases the tick is carrying.
Step 3: Watch closely for any symptoms. Less than 50% of people will see a bulls-eye rash (so don't count on that), but if you do have one take a photo and get to your Doctor immediately. If you show any signs of flu-like symptoms or feel off in any way, get to your Doctor immediately.
Step 4: TESTING. This is crucial, because not all Doctors will do this. I recently had a friend who found a tick on her fully engorged and had a big bulls-eye rash. She went to a Doctor who told her it wasn't a tick (it was), and that wasn't a bulls-eye rash (it was). They refused to do any testing and sent her off. This is NOT acceptable, but it happens way too often. It is always better to err on the side of caution with Lyme Disease. Always.
Two-Tier Testing: The ELISA and Western Blot
Better Testing: IGeneX & PCR Testing for BOTH Acute and Chronic Lyme Disease
Other Optional Testing: LymeDot Blot Urine Test & CD-57
Help! My Doctor won't perform the ELISA, Western Blot, IgenX, PCR or CD57. What do I do now?
Don't worry! This is the part of the post I was most excited to write about, because until now I didn't really have a good answer to this question.
TrueHealth Labs was created to make lab testing directly available for those who are uninsured or whose Doctor refuses to order tests, and those who simply want to make their own healthcare choices. All the Lyme tests I discussed above can be purchased through them without a Doctor, and at prices 20-80% less because they work directly with the labs. You also have the option to add on a one-on-one phone consult to your tests so that you can review the results with a Doctor who can answer your questions and explain the findings. I have used this lab, and I have had great ease of use and fast results. TrueHealth Labs kindly agreed to partner with me so that I could share these tests with anyone who would like to order lab tests for Lyme Disease from home.
You simply order the test you want and they help you locate a blood draw location where you can have the blood taken and sent off. Then the results are emailed to you directly, and should you choose to speak to a Doctor on staff about your results you can do so. Or you can take your results to your own Doctor and ask them to further work with you, etc. This puts the power back into YOUR hands.
Below are the tests I spoke about, and a brief description of them all. To learn more or to purchase the test simply follow the link.
To see their entire library of Lyme Disease and Co-Infection specific tests click here
Step 2: Save the tick and send it off for free tick-testing to see what bacteria and diseases the tick is carrying.
Step 3: Watch closely for any symptoms. Less than 50% of people will see a bulls-eye rash (so don't count on that), but if you do have one take a photo and get to your Doctor immediately. If you show any signs of flu-like symptoms or feel off in any way, get to your Doctor immediately.
Step 4: TESTING. This is crucial, because not all Doctors will do this. I recently had a friend who found a tick on her fully engorged and had a big bulls-eye rash. She went to a Doctor who told her it wasn't a tick (it was), and that wasn't a bulls-eye rash (it was). They refused to do any testing and sent her off. This is NOT acceptable, but it happens way too often. It is always better to err on the side of caution with Lyme Disease. Always.
Two-Tier Testing: The ELISA and Western Blot
- The most common FDA approved diagnostic test for Lyme Disease is the Two-Tier Testing. This includes the ELISA and the Western Blot. Since these use antibodies to the disease as its testing mechanism the tests can be highly inaccurate within the first 4-6 weeks. This is because blood antibody levels need time to form high enough to be picked up on testing. If your test comes back negative but you continue to have symptoms you must re-test again. Most Doctor's know this, but if they don't then you have to advocate for yourself. A negative early test could just mean that the antibodies haven't formed well enough yet.
- The ELISA is a preliminary screening exam which only tells you if a person has been exposed to Lyme disease. If it comes back negative most Doctors will dismiss the possibility of Lyme Disease and they won't even proceed to step two and do the Western Blot. The ELISA is notoriously inaccurate, and numerous studies have found that is has a very poor sensitivity rate. Do not ever count on just the ELISA alone. Request to also get the Western Blot done no matter what.
- The Western Blot is a test which takes a patients blood and looks for antigens to the Lyme bacteria itself. They separate the antigens into 'bands' and test each band individually. For a test to show up as "positive" a patient must have 5 out of 10 bands, and since some bands are more specific for Lyme than others the patient must have the right 5 bands show up to be considered CDC positive. The Western Blot can be interpreted in different ways depending on which bands show up, and there are specialty labs which can run this test in a better manner (but more on that later).
- This Two-Tier testing misses over 50% of cases by giving false negatives. The reason being that they are not sensitive enough and the guidelines for them are much too strict. If a person doesn't have the "correct" CDC approved bands on the Western Blot they dismiss it and don't even report back to you which bands you DID have, and that is extremely problematic. If your test are negative the first time around always ask to be retested. If your Doctor still tells you it's negative and yet you feel sick it's time to move on and get other tests ran.
Better Testing: IGeneX & PCR Testing for BOTH Acute and Chronic Lyme Disease
- IGeneX is a lab which has over 25 years of experience and research on Lyme Disease. Their panel consists of multiple tests that are put together to give a clearer picture of what is going on inside your body. IGeneX looks for more species of Lyme than any other test, and has a wider range of sensitivity.
- IGeneX also runs the Western Blot, but they automatically report all the bands to you. When you get this test done you will see for yourself exactly which bands came back positive. For example, I know many patients who found out that they had 4 very Lyme specific bands, but since they didn't have the fifth band they were dismissed.
- They also have their own newer testing called the ImmunoBlot, and it looks at IgG and IgM antibodies in the patient's serum. The IgM antibody is the first antibody to appear in response to an initial exposure or re-exposure to Lyme (Borrelia Burgdorferi). IgG antibody develops as a late response to the infection. The CDC criteria for detecting antibodies is much more stingent, whereas the iGeneX criteria detects more specific antibodies. For example they only need 2 of the Lyme specific strains to come back to call it positive, where the CDC requires 5. This is based on their 25+ years of research and is highly accurate. IGeneX is regarded as one of the most prestigious labs for Lyme Disease testing among LLMD's.
- Another perk of IGeneX is that they look at many different strains of the Lyme bacteria, not just the most common one. This is why they don't miss infections the same way that the standard CDC testing does. Instead of only looking at Borrelia Burgdorferi they also test for Borrelia miyamotoi, Borrelia hermsii, Borrelia coriacea, among others. This is because there are different strains of Borrelia bacteria in ticks carried in the United States (and globally).
- If you have a Doctor to work with ask them to order the IGeneX panel (Western Blot and ImmunoBlot). It will give you a wealth of information that is more sensitive and accurate.
- PCR testing, which stands for polymerase chain reaction assays, are just a fancy way of saying DNA testing. IGeneX also offers PCR testing, and this test looks for the DNA of the Lyme bacteria in the blood or in some cases the spinal fluid. This makes the test extremely accurate because instead of depending on your body to make the antibodies in a high enough rate, it simply looks for the DNA of the bacteria itself. If it's there it almost 100% guarantees that you have the infection. Not all Doctor's are willing to order this test, but if they will then I highly recommend it in tandem. This test is most commonly used for Chronic cases, but is also going to be very useful and accurate with Acute infections as well.
Other Optional Testing: LymeDot Blot Urine Test & CD-57
- The LymeDot Blot is a test which looks for the Lyme bacteria antibodies in the urine. This is also a test offered by IGeneX and is a companion test to other tests being ran. It is less invasive than a blood test, so many people prefer to run this test first to see what it might pick up.
- The CD-57 test is crucial for Chronic Lyme cases, and I wrote a whole post about it here. Essentially it is a blood test looking at the activity of a Natural Killer cell in the body which is very specific to the Borrelia bacteria. When you have a long term Lyme infection the CD-57 marker will be suppressed. This is often what many Doctors look at to diagnose Lyme Disease because it is so specific to the Borrelia bacteria. If a patient is exhibiting symptoms, has some bands on the Western Blot/ImmunoBlot, and has a very low CD-57 level, that can tell a Doctor that a chronic infection is present. If you believe you have Chronic Lyme Disease please urge your Doctor to run this test.
Help! My Doctor won't perform the ELISA, Western Blot, IgenX, PCR or CD57. What do I do now?
Don't worry! This is the part of the post I was most excited to write about, because until now I didn't really have a good answer to this question.
TrueHealth Labs was created to make lab testing directly available for those who are uninsured or whose Doctor refuses to order tests, and those who simply want to make their own healthcare choices. All the Lyme tests I discussed above can be purchased through them without a Doctor, and at prices 20-80% less because they work directly with the labs. You also have the option to add on a one-on-one phone consult to your tests so that you can review the results with a Doctor who can answer your questions and explain the findings. I have used this lab, and I have had great ease of use and fast results. TrueHealth Labs kindly agreed to partner with me so that I could share these tests with anyone who would like to order lab tests for Lyme Disease from home.
You simply order the test you want and they help you locate a blood draw location where you can have the blood taken and sent off. Then the results are emailed to you directly, and should you choose to speak to a Doctor on staff about your results you can do so. Or you can take your results to your own Doctor and ask them to further work with you, etc. This puts the power back into YOUR hands.
Below are the tests I spoke about, and a brief description of them all. To learn more or to purchase the test simply follow the link.
To see their entire library of Lyme Disease and Co-Infection specific tests click here
Order Lyme Disease Tests: Acute & Chronic Infections
IGeneX Basic Lyme Panel
This is a panel which includes:
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IGeneX Initial Lyme Panel
This is a panel which includes:
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IGeneX Complete Lyme Panel
This panel includes:
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IGeneX Western Blot IgG
This test performs the Western Blot test on the IgG antibody in the blood
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IGeneX Western Blot IgM
This test performs the Western Blot test on the IgM antibody in the blood.
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IGeneX PCR Test
This test looks for the DNA of the Lyme bacteria in your blood. This test uses whole blood, meaning it looks for the DNA in the whole blood sample. This is most often used in Chronic Lyme Disease cases, but can be used during Acute cases as well.
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LymeDot Blot Urine Test
This panel is for the LymeDot test and includes 3 urine sample collection cups.
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CD-57 Natural Killer Cell
This is a panel which includes:
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IGeneX ImmunoBlot
This is a panel which includes:
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What about Co-Infections?
Ticks carry more than just Lyme disease. They can also carry a whole host of co-infections as well. This is why I recommend sending off any tick you find on you for free tick testing. That will help you know what infections you need to be looking out for. However, regardless of if you have the tick or not it's good to test yourself to make sure you are clear of any co-infections as well. This becomes especially important if you find out you are positive for Lyme Disease. It is equally important to do if your Lyme tests come back negative but you still feel unwell, or if the tick shows to be carrying anything. Unless you are working with an LLMD most Doctor's will not run the gamut of tests to rule out any co-infections. It is really frustrating, but it's hard enough to get them to take Lyme disease seriously, so also knowing which tests to run for co-infections can fell impossible.
Just like the Lyme testing above you can run antibody tests (IgG and IgM) for each of the co-infections, and you can also do the PCR testing which looks for the DNA of the bacteria in the blood.
Below are the panels you can do and run for co-infections. Some are single tests if you want to test yourself for individual infections the tick was carrying, and others are whole panels. All of these Co-Infection tests are done by IGeneX Labs. If you'd like to see the entire library of what is offered, click here.
Just like the Lyme testing above you can run antibody tests (IgG and IgM) for each of the co-infections, and you can also do the PCR testing which looks for the DNA of the bacteria in the blood.
Below are the panels you can do and run for co-infections. Some are single tests if you want to test yourself for individual infections the tick was carrying, and others are whole panels. All of these Co-Infection tests are done by IGeneX Labs. If you'd like to see the entire library of what is offered, click here.
Order Co-Infection Tests
IGeneX Complete Co-Infection Panel
This is a panel which includes:
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Bartonella IgG and IgM Antibody
This panel looks at the IgG and IgM antibodies for Bartonella. It includes:
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Bartonella PCR Test
This PCR test looks for the DNA of Bartonella Hensefae in the whole blood. This means that the organism's DNA is being looked for in the entire blood sample, not just the serum.
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Anaplasma IgG and IgM Antibody
This panel looks at the IgG and IgM antibodies for Anaplasma. It includes:
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Anaplasma PCR Test
This is a PCR test which looks for the DNA of Anaplasma Phagocytophilia which is the most common form of Anaplasma.
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Erhlichia IgG and IgM Antibody
This panel looks at the IgG and IgM antibodies for Erhlichia. It includes:
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Erhlichia PCR Test
This is a PCR test which looks for the DNA of the Human Monocytic Erhlichia in the blood.
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Babesia IgG and IgM Antibody
This panel looks at the IgG and IgM antibodies for Babesia. It includes:
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Babesia PCR Test
This is a PCR test which looks at the DNA of both Babesia Microti, and Babesia Duncani in the blood.
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In conclusion, I hope that this page has offered a bit more info about what testing is available and which is the best route to take. I am not a Doctor and none of this is medical advice. Always consult your Doctor first and ask them to order/run needed tests. If they refuse to run any tests then self testing is a great option to get the answers you need, but always go over your results with a medical professional.
If you have any further questions about specific test details on the site please reach out to TrueHealth Labs directly, as I do not have access to that kind of info. They have wonderful customer service that can help you every step of the way.
Again, I am not a Doctor. I can not guide anyone the way a Doctor would or interpret test results. I am just a patient. So please do not email me requesting my opinion on such questions, because as much as I would love to help I can not legally respond.
xoxo,
Christina
If you have any further questions about specific test details on the site please reach out to TrueHealth Labs directly, as I do not have access to that kind of info. They have wonderful customer service that can help you every step of the way.
Again, I am not a Doctor. I can not guide anyone the way a Doctor would or interpret test results. I am just a patient. So please do not email me requesting my opinion on such questions, because as much as I would love to help I can not legally respond.
xoxo,
Christina