This post represents the most recent updates on practical Lyme Disease testing as of September 2017. It is in overview form with a brief explanation of the ins and outs of Lyme disease in the United States. It probably is not applicable to other countries.
When to suspect Lyme disease.
Endocrine dysfunction is common in Lyme disease; often patients find low serum levels of hormones like Testosterone, Growth Hormone, Estradiol, Triiodothyronine, Cortisol and 25-Hydroxy Vitamin D. It’s fairly common that the first treatable symptoms people who have Lyme have are endocrine based.
Once hormone replacement begins it often does not have the effect on mood, energy and fatigue that normally happens in people who are hormone deficient. Secondarily, these replacement protocols become hard to manage, and weird symptoms and side effects crop up. People may find they need a lot more Cytomel than normal people on thyroid replacement to relieve symptoms. Vitamin D supplementation may make them ill or their serum levels of 25oh Vitamin D will not go up with supplementation.
Common Symptoms of Lyme disease
One main symptom of Lyme disease is fatigue and no energy. Another one is arthritis that migrates from one joint/limb to another often times coinciding with a lunar cycle. As stated before, endocrine dysfunction where hormone replacement therapy has no effect after 4 to 6 months. Insomnia that does not respond to common sleep meds. Muscle pain. Fatigue and energy levels improve with short term antibiotic therapy and return after antibiotic therapy is done. These are the basic symptoms, however there are many more.
How to test for Lyme disease.
The Centers for Disease Control has very stringent guidelines for testing and treating Lyme disease. Failing to comply with these guidelines in some states can put a health practitioner’s license in jeopardy. Therefore a two tired approach to testing needs to be used.
-Tier 1
Tier 1 is comprised of tests the CDC recognizes as criteria for diagnosis of Lyme disease. The most used one is the ELISA test with an Immunoblot. Another test is using PCR-DNA on spinal fluid, synovial fluid/tissue. Since it’s highly invasive to test CSF or synovial fluid/tissue it is almost never done unless a lumbar puncture or joint arthroscopy is done for another more medically significant reason, such as meningitis or for ligament damage. PCR-DNA tests of blood are not acceptable for Lyme diagnosis accordingly to the CDC. The CDC compliant ELISA/Immunoblot is available from almost every commercial laboratory.
-Tier 2
Tier 2 is comprised of tests that the CDC does not recognize as criteria for diagnosis and/or treatment. Consequently most insurance will not cover treatment for Lyme based on the results of these tests. Insurance will most likely not reimburse you or cover the cost of these tests. They are considered experimental or investigative by the CDC. Most doctors will not treat based on the results of Tier 2 tests. In some states legislatures have forbid medical boards from investigating and disciplining doctors for using Tier 2 tests to diagnose and treat Lyme. Medicaid may reimburse some of these tests.
Igenex Western Blot(IGG/IGM) with IFA(Lyme Panel #1)approx $250.
The only panel that uses two different strains of Borrelia Burgdorferi(297 and B31) for testing. All the ILADS trained physicians use this test to diagnose Lyme. It is considered the gold standard in Lyme testing. This test requires a doctors order. Results take about 3 weeks. To order this test you must contact Igenex and they will mail you a test kit to be filled out by a physician. It would be helpful to ask your physician if they would sign the paperwork before ordering the test.
DNA Conexxions Lyme Disease Test. $25 deposit $500 for the test.
A urine test using PCR-DNA to determine Lyme and common co-infections often present in ticks. This test represents the best value for Lyme and co-infections testing. It does not need a doctor’s order or signature. Test results take about 3 weeks. Expedited results option for an extra $150. To order this test contact DNA Conexxions and they will mail you a kit with instructions after you pay the deposit. The test sample is best given right after a full body deep tissue massage.
Advanced Laboratory Services Borrelia Culture Test. $600.
This is a test that cultures samples of blood and will grow any spirochete or Borrelia present in the blood. Sometimes lab results can take up to 4 months. Probably the most specific and accurate of Lyme testing. This test requires a doctors signature. Upon positive test result you will receive a certificate and photos of the spirochete. To order this test you must contact ALS and have them send a test kit to a physician.
I think I might have Lyme what do I do next.
You should do two tiers of testing. Order the Tier 1 ELISA/Immunoblot from a commercial lab, and a Tier 2 test of your choosing. The easiest way to get the Tier 1 test is from Privatemdlabs, a Labcorp reseller, for $90. If you have a great relationship with a primary care physician you could ask them if they would test you using both tiers. They would order the ELISA/Immunoblot, and fill out the requisition paperwork for the Igenex Lyme Panel #1, or Advanced Laboratory Services Borrelia Culture. Or you could order the DNA Connexions Lyme Disease Test on your own.
My doctor would not agree to do the requisition for the Igenex Lyme Panel #1.
IF you still want to do this test you have a few options. You could contact Igenex or Advanced Labroratory Services and ask them to find a provider in your area that will order the test. You can goto Truehealthlabs and order the Igenex Lyme Panel and have it drawn at any Anylabtestnow. The downside to this is the hassle, and the extra cost, they mark it up an additional $150 plus ALTN will charge a fee. You can contact ILADS for a physician referral. The upside to making an appointment to an ILADS physician is you will be properly evaluated for Lyme disease and co-infections. They will work to help get you the right treatment. The downside to this is cost. ILADS physicians don’t normally accept insurance. The initial appointment is around $600 and takes 2-3 hours.
Provocation.
There are things a person can do to provoke the Lyme to make testing for it easier. This includes soaking in a hot tub, taking a long hot shower, being active, and a full body massage. Most blood draws for Lyme happen after patients have been sitting for an hour or more. It is thought that this makes the Lyme harder to test for. When a person gets a full body massage and does a blood draw or provides a urine sample right after provocation the tests tend to come back with stronger results.
The results.
Often people are negative using Tier 1 testing. It would be rare to be CDC positive. Some people have a positive ELISA but not enough bands present on the Immunoblot to meet the strict CDC criteria. If you are CDC positive using the Tier 1 test most likely your doctor will order another test. They might say the test is a false positive because you never were bitten by a tick, and did not have an Erythema Migrans rash. They might refer you to an Infectious Disease doctor, who will order more tests. They might also prescribe you 10 days of Doxycycline.
My Tier 2 test came back positive or suggestive and my Tier 1 test came back negative.
This is usually what will happen. According to the CDC and most state health agencies you do not have Lyme in this scenario. Insurance will likely not pay for treatment depending on your insurance and where you live. This is when you need to reach out to ILADS and ask for a physician referral. They will evaluate your symptoms and labwork and make a clinical diagnosis based on symptoms and will try to treat you. There really is no state that is Lyme friendly some just turn a blind eye to doctors that treat it. It’s common for Lyme patients to travel long distances and spend a lot of money for “proper” treatment.
I found a tick on me what should I do?
Take a picture of the tick that is on you or engorged in you. Get a fine edged tweezers and remove the tick by carefully grabbing the head and unscrewing it while you extract the head in one motion. Place the tick in a small zip lok freezer bag and place some grass in the bag. Using a sharpie label the time and date you extracted it. Contact tickreport's website and have it tested. Having a tick tested in a laboratory is the ONLY way to know exactly what microorganisms were inside the tick and potentially can help you get treatment and coverage. You have to document this. Most of the time nothing will come from the tick bite. However it’s better to be prepared. Testing of ticks is not done frequently enough so there isn't much data on which regions have ticks with more than one microorganism. So while you only need the $50 dollar test from tickreport, if you can afford $200 for all the screenings you should do it in the name of science. Insurance may reimburse you, so might the state health department. Go to the doctor. Show him the picture of the engorged tick, show them the picture of the zip lok bag you sent to tickreport, and ask them for 30 days of Doxycycline as a preventative treatment. If they won’t then contact ILADS for a physician reference.
This is a very basic guide Lyme disease, and only briefly covers co-infections. Ive discussed the political nature of the diagnosis and how to seek treatment. For additional information on Lyme disease and co-infections get Dr Richard Horowitz's book, “How Can I Get Better”. Most Barnes and Nobles has it on their shelf for around $15. Finally, there are a lot of scammers out there in the Lymeosphere. Lyme sufferers tend to be very resourceful people and these scammers take advantage of them. So if something sounds too good to be true it probably is. As of right now there is not a consistent reliable cure for disseminated Lyme disease.
When to suspect Lyme disease.
Endocrine dysfunction is common in Lyme disease; often patients find low serum levels of hormones like Testosterone, Growth Hormone, Estradiol, Triiodothyronine, Cortisol and 25-Hydroxy Vitamin D. It’s fairly common that the first treatable symptoms people who have Lyme have are endocrine based.
Once hormone replacement begins it often does not have the effect on mood, energy and fatigue that normally happens in people who are hormone deficient. Secondarily, these replacement protocols become hard to manage, and weird symptoms and side effects crop up. People may find they need a lot more Cytomel than normal people on thyroid replacement to relieve symptoms. Vitamin D supplementation may make them ill or their serum levels of 25oh Vitamin D will not go up with supplementation.
Common Symptoms of Lyme disease
One main symptom of Lyme disease is fatigue and no energy. Another one is arthritis that migrates from one joint/limb to another often times coinciding with a lunar cycle. As stated before, endocrine dysfunction where hormone replacement therapy has no effect after 4 to 6 months. Insomnia that does not respond to common sleep meds. Muscle pain. Fatigue and energy levels improve with short term antibiotic therapy and return after antibiotic therapy is done. These are the basic symptoms, however there are many more.
How to test for Lyme disease.
The Centers for Disease Control has very stringent guidelines for testing and treating Lyme disease. Failing to comply with these guidelines in some states can put a health practitioner’s license in jeopardy. Therefore a two tired approach to testing needs to be used.
-Tier 1
Tier 1 is comprised of tests the CDC recognizes as criteria for diagnosis of Lyme disease. The most used one is the ELISA test with an Immunoblot. Another test is using PCR-DNA on spinal fluid, synovial fluid/tissue. Since it’s highly invasive to test CSF or synovial fluid/tissue it is almost never done unless a lumbar puncture or joint arthroscopy is done for another more medically significant reason, such as meningitis or for ligament damage. PCR-DNA tests of blood are not acceptable for Lyme diagnosis accordingly to the CDC. The CDC compliant ELISA/Immunoblot is available from almost every commercial laboratory.
-Tier 2
Tier 2 is comprised of tests that the CDC does not recognize as criteria for diagnosis and/or treatment. Consequently most insurance will not cover treatment for Lyme based on the results of these tests. Insurance will most likely not reimburse you or cover the cost of these tests. They are considered experimental or investigative by the CDC. Most doctors will not treat based on the results of Tier 2 tests. In some states legislatures have forbid medical boards from investigating and disciplining doctors for using Tier 2 tests to diagnose and treat Lyme. Medicaid may reimburse some of these tests.
Igenex Western Blot(IGG/IGM) with IFA(Lyme Panel #1)approx $250.
The only panel that uses two different strains of Borrelia Burgdorferi(297 and B31) for testing. All the ILADS trained physicians use this test to diagnose Lyme. It is considered the gold standard in Lyme testing. This test requires a doctors order. Results take about 3 weeks. To order this test you must contact Igenex and they will mail you a test kit to be filled out by a physician. It would be helpful to ask your physician if they would sign the paperwork before ordering the test.
DNA Conexxions Lyme Disease Test. $25 deposit $500 for the test.
A urine test using PCR-DNA to determine Lyme and common co-infections often present in ticks. This test represents the best value for Lyme and co-infections testing. It does not need a doctor’s order or signature. Test results take about 3 weeks. Expedited results option for an extra $150. To order this test contact DNA Conexxions and they will mail you a kit with instructions after you pay the deposit. The test sample is best given right after a full body deep tissue massage.
Advanced Laboratory Services Borrelia Culture Test. $600.
This is a test that cultures samples of blood and will grow any spirochete or Borrelia present in the blood. Sometimes lab results can take up to 4 months. Probably the most specific and accurate of Lyme testing. This test requires a doctors signature. Upon positive test result you will receive a certificate and photos of the spirochete. To order this test you must contact ALS and have them send a test kit to a physician.
I think I might have Lyme what do I do next.
You should do two tiers of testing. Order the Tier 1 ELISA/Immunoblot from a commercial lab, and a Tier 2 test of your choosing. The easiest way to get the Tier 1 test is from Privatemdlabs, a Labcorp reseller, for $90. If you have a great relationship with a primary care physician you could ask them if they would test you using both tiers. They would order the ELISA/Immunoblot, and fill out the requisition paperwork for the Igenex Lyme Panel #1, or Advanced Laboratory Services Borrelia Culture. Or you could order the DNA Connexions Lyme Disease Test on your own.
My doctor would not agree to do the requisition for the Igenex Lyme Panel #1.
IF you still want to do this test you have a few options. You could contact Igenex or Advanced Labroratory Services and ask them to find a provider in your area that will order the test. You can goto Truehealthlabs and order the Igenex Lyme Panel and have it drawn at any Anylabtestnow. The downside to this is the hassle, and the extra cost, they mark it up an additional $150 plus ALTN will charge a fee. You can contact ILADS for a physician referral. The upside to making an appointment to an ILADS physician is you will be properly evaluated for Lyme disease and co-infections. They will work to help get you the right treatment. The downside to this is cost. ILADS physicians don’t normally accept insurance. The initial appointment is around $600 and takes 2-3 hours.
Provocation.
There are things a person can do to provoke the Lyme to make testing for it easier. This includes soaking in a hot tub, taking a long hot shower, being active, and a full body massage. Most blood draws for Lyme happen after patients have been sitting for an hour or more. It is thought that this makes the Lyme harder to test for. When a person gets a full body massage and does a blood draw or provides a urine sample right after provocation the tests tend to come back with stronger results.
The results.
Often people are negative using Tier 1 testing. It would be rare to be CDC positive. Some people have a positive ELISA but not enough bands present on the Immunoblot to meet the strict CDC criteria. If you are CDC positive using the Tier 1 test most likely your doctor will order another test. They might say the test is a false positive because you never were bitten by a tick, and did not have an Erythema Migrans rash. They might refer you to an Infectious Disease doctor, who will order more tests. They might also prescribe you 10 days of Doxycycline.
My Tier 2 test came back positive or suggestive and my Tier 1 test came back negative.
This is usually what will happen. According to the CDC and most state health agencies you do not have Lyme in this scenario. Insurance will likely not pay for treatment depending on your insurance and where you live. This is when you need to reach out to ILADS and ask for a physician referral. They will evaluate your symptoms and labwork and make a clinical diagnosis based on symptoms and will try to treat you. There really is no state that is Lyme friendly some just turn a blind eye to doctors that treat it. It’s common for Lyme patients to travel long distances and spend a lot of money for “proper” treatment.
I found a tick on me what should I do?
Take a picture of the tick that is on you or engorged in you. Get a fine edged tweezers and remove the tick by carefully grabbing the head and unscrewing it while you extract the head in one motion. Place the tick in a small zip lok freezer bag and place some grass in the bag. Using a sharpie label the time and date you extracted it. Contact tickreport's website and have it tested. Having a tick tested in a laboratory is the ONLY way to know exactly what microorganisms were inside the tick and potentially can help you get treatment and coverage. You have to document this. Most of the time nothing will come from the tick bite. However it’s better to be prepared. Testing of ticks is not done frequently enough so there isn't much data on which regions have ticks with more than one microorganism. So while you only need the $50 dollar test from tickreport, if you can afford $200 for all the screenings you should do it in the name of science. Insurance may reimburse you, so might the state health department. Go to the doctor. Show him the picture of the engorged tick, show them the picture of the zip lok bag you sent to tickreport, and ask them for 30 days of Doxycycline as a preventative treatment. If they won’t then contact ILADS for a physician reference.
This is a very basic guide Lyme disease, and only briefly covers co-infections. Ive discussed the political nature of the diagnosis and how to seek treatment. For additional information on Lyme disease and co-infections get Dr Richard Horowitz's book, “How Can I Get Better”. Most Barnes and Nobles has it on their shelf for around $15. Finally, there are a lot of scammers out there in the Lymeosphere. Lyme sufferers tend to be very resourceful people and these scammers take advantage of them. So if something sounds too good to be true it probably is. As of right now there is not a consistent reliable cure for disseminated Lyme disease.
