I wrote about my past history with Lyme Disease a few weeks ago. It got me thinking about what might have been if I had been given the correct test at the correct time. How much suffering would that have saved? The answer is years.
I started this series of posts as a way to help people from going through the experience I did. One blog post has now grown into three. Part I is about how to avoid being bitten. Part II is about what to do what you have been bitten and Part III is about how to get a proper diagnosis and the pitfalls of traditional antibody tests.
I explained in Part II how important it is to be seen by an LLMD. Lyme disease is a multi-system illness with symptoms that are so varied that, without a highly trained eye, is difficult to diagnose clinically. From Multiple Sclerosis to Chronic Fatigue Syndrome to Rheumatoid Arthritis, Lyme disease’s presentations overlap with so many other diseases that it is understandable physicians struggle to make a correct diagnosis. Blood tests, also are historically unreliable. Blood tests done in the first 4-6 weeks of an infection often will come back negative despite the presence of the bacteria. In fact, the early testing is so unreliable that in 2013 the State of Virginia passed a law that stated that all negative Lyme test results had to be accompanied by a letter. This letter states that “If you are tested for lyme disease, and the results are negative, this does not necessarily mean you do not have lyme disease” .
Why is this? Traditional antibody tests like Elisa and Western Blot are looking for antigen-specific proteins that the adaptive immune system has created to fight the spirochetes. This type of testing is inconclusive because the antibodies tend to be low in the early stages of the disease resulting in a negative test result. In the first 3 weeks of an infection the test will only come back positive 29-40% of the time. Lyme is a stealthy pathogen that knows how to hide from the host immune system. This further impairs any type of antibody testing’s reliability. If an antibody test is asking the immune system what it has seen, and the Lyme spirochete is playing hide-n-seek, then the test can come back negative despite the presence of the bacteria. Lyme also has many strains. Burgdorferi is the most well-known but there are 16 different known strains that infect humans. This leaves it to the doctor to clinically diagnose a patient. And, with Lyme disease having such varied symptoms, that comes with controversy.
The other diagnostic issue is that Lyme does not travel alone. Lyme typically comes with co-infections like Bartonella, Babesia, Ehrlichia and Powassan. Your doctor is going to need to be versed in the symptoms associated with all of the co-infections. The key to a correct diagnosis is a trained LLMD. The CDC does allow for treatment without a positive test. However, you need to be seen by a doctor who is a specialist in Lyme disease, knows the right questions to ask and can recognize signs and symptoms. According to Jerry Simons a Lyme expert at The Morrison Center, and here at STANDwellness, a proper clinical diagnosis is the first step.
- Stony Brook Labs is a good test as long as all the bands are listed. Just understand that a negative test does not mean that Lyme is not present.
- iGenex Labs is a highly sensitive test that many traditional doctors do not recognize. IGenex can pick up some of the lesser known strains like Mayoii and Myamoti. It can also pick up some of the co-infections. The warning here is that this test can cost thousands of dollars and insurance usually does not pay for it.
- Armin Labs is the new guy on the block. Run out of Germany this company has been gaining a pretty good reputation amongst Lyme Literate physicians. Like iGenex, this test is very sensitive and can pick up infections that other traditional tests cannot, but can also run in the thousands of dollars.
- Sofia Test is a test that gives you your results in 10 minutes. This is done during your appointment with your doctor. The results are mixed but the potential for future rapid diagnosis is very exciting. As we all know, getting treated quickly is essential to a good outcome.
Blood PCR Tests:
- Galaxy Labs PCR testing is a polymerase chain reaction test that identifies an infection by identifying DNA sequences in a blood test that are specific to that microorganism. Whether it is viral or bacterial, the concept is the same. Galaxy Labs is the current gold standard in testing for the co-infection Bartonella which is notoriously difficult to test for. They do a specific type of PCR called ePCR which amplifies the potential infection and allows it to reach detectable quantities.
- MDL is a well-respected PCR test for all types of infections. This tends to be a conclusive test but it has its flaws as well. The key is collecting a sample that contains the DNA sequences of the microorganism being tested. That is not possible 100% of the time as the bacteria/virus is not necessarily in every drop of blood in your body.
Urine PCR Tests:
- Nanotrap urine analysis. This can pick up the presence of the outer surface protein of the Lyme bacteria called OspA. This is not an antibody test, but rather a test that looks for the presence of the bacteria itself. This is still not a perfect test, but it is the beginning of a new way of looking at Lyme testing.
- DNA Connexions is the same concept as Nanotrap. This has more mixed results, but the upside is that a doctor does not have to order it. If you are wondering if you have Lyme, and want to do some initial investigation on your own, then this can be a great test to get you started. Sadly, as of last week, this test cannot be performed in New York State.
- CD57 tests for how the innate immune system is responding. This tests for Natural Killer Cell activity. A low result is usually indicative of a compromised immune system.
- Compliment C3 and C4 tests for levels of inflammation in the body. A high result indicates the presence of internal inflammation which is indicative of the presence of an infection, mold or environmental toxins.
- Adaptive Immune System Testing like B and T cell response will show if and how the body is reacting to infection.
- Sequence Based Ultra Rapid Pathogen ID (SURPI) is a precise diagnosis of all infectious disease by nucleic acid sequencing. This is different from traditional testing because instead of testing for a specific infection (bacteria, virus, parasites and fungus) it tests for all infections at once. It is not currently available, but the early data is good. This type of testing might revolutionize the field of infectious disease testing.
Jerry Simons notes that a provoked Lyme test yields the best result. This means taking an antimicrobial like Allinia, and proteolytic enzymes to help dissolve biofilms for at least a week prior to testing. The antimicrobial will kill some of the infection which will illicit an immune response (create antibodies) and the proteolytic enzymes will dissolve the protective biofilms forcing the infections out of hiding thus rendering the most accurate result.
It should be noted here that biotin supplements interfere with ALL Lyme testing. You must be off of them for at least 5 days in order to get an accurate result.
The long and the short of it is that you really need to be seen by a doctor who is well-versed in Lyme and all of the tests involved. There is no test that is 100% conclusive 100% of the time. Having an LLMD in your corner listening to your symptoms and applying the appropriate test at the appropriate time is the key to getting a proper diagnosis so you can begin to heal.
By Tapp Francke Ingolia