There is currently a large gap between what the CDC requires for an official Lyme diagnosis and how Lyme Literate doctors are diagnosing and treating patients.
If you think you might have Lyme Disease, you need to see a Lyme Literate doctor or you may not get the care and treatment that you need. You may wind up sick for years until you stumble on a traditional doctor that will take your symptoms seriously.
The CDC requires 2 tests for proper diagnosis. The ELISA and the Western Blot. We will learn about the 2-different test in just a bit in a little more detail. But quickly, the ELISA tests an enzyme/immune response and the Western Blot is an immunoglobulin test that helps distinguish Lyme from other diseases. The CDC says that you need to try the ELISA first and if you it gives you a positive result you follow up with the Western Blot. The CDC also says that bands 18-21-28-30-39-42-45-58 and 66 be tested and a patient needs to test positive in 5 of these bands to have a try positive.
These guidelines are extremely outdated, but most mainstream doctors still follow them. A Lyme literate doctor however will say a Lyme diagnosis should be considered if just one bans is positive. Lyme is quickly becoming an epidemic with 6% more people diagnosed with Lyme than AIDS/HIV and double that of breast cancer. These outdated test requirements and lack of treatments are mainly to blame. More and More cases of Lyme are going undiagnosed and untreated and that is terrible. Knowing what I have learned about Lyme, co infections and bacteria’s, it upsets me that the CDC and mainstream medicine still have their head in the sand and are using outdated protocols for testing, diagnosis and treatments.
ELISA or Enzyme Linked Immunosorbent Serum Assay is the simplest, easiest to perform and most ordered of the two most common Lyme tests. It is most preferred because it is automated and can be done quickly. With a short turnaround time, it turns a good profit for the labs. However, it isn’t very reliable. It misses 33% of culture proven Lyme Disease, and some studies say it can be less than 50% accurate. Most doctors start with the ELISA and if it is positive they also do a Western Blot. The problem is that many doctors stop here if the test is negative, and many cases of Lyme are being undiagnosed.
ELISA tests antigens in the blood, which seems simple, but Borrelia changes its surface protein during cell division, which may differ from the lab strains tested and give a false negative. Until we can test for every strain of Lyme, this test will not be accurate. There have been several ‘new’ strains of Lyme discovered over the past few years, and very few labs test for these new strains.
Western Blot is different from the ELISA as it tests different antibodies the immune system produces. They say when is a body is exposed to something it creates an antibody, not just for Lyme, but anything the body comes in contact with. The Western Blot tests for antibodies related to Lyme and these antibodies are reported in ‘bands’.
IgM, or immunoglobulin type M, is the first antibody our body makes against a foreign invader. It usually takes 2-4 weeks for there to be a large enough quantity to measure. These antibodies usually circulate for about 6 months. After 6 months, there usually isn’t a high enough quantity to be measured. If someone continues to be sick with the same virus or bacteria, these antibodies can linger and our body can continue to make them. However, the amount can vary and they may not be detectable. Most doctors don’t understand this, but timing is everything for the ELISA test. If the test is not done when the antibodies are on the rise, or in a high quantity, you can get a false negative.
IgG is the antibody we make after IgM. This antibody can take 8 weeks to form and is usually gone within a year of exposure. This is the antibody that can pass the blood brain barrier and can also cross the placenta and can be transmitted to a baby.
Each band in the Western Blot tests for a different antibody, bands 31 and 34 are exclusive to Lyme Disease. However, they were removed from most tests after the introduction of the Lyme vaccine. Patients were testing positive after getting the vaccine, but didn’t actually have Lyme. This vaccine is no longer on the market, so labs should be testing for these bands. But because of CDC regulations they aren’t. It seems like it would be an easier way to accurately diagnose Lyme patients.
Ingenex, a lab in California DOES test for bands for 31 and 34. They are one of the best labs in the United States. But as it goes with Lyme, most insurance companies won’t pay for testing through Ingenex and it can be really expensive.
Fry Labs looks at the blood and looks for organisms, not antibodies or antigens. They can diagnose co infections.
Advanced Laboratory Services uses cultures, not antibodies.
For most Lyme Literate doctors, a clinical diagnosis is more accurate than blood tests. They will look at the WHOLE patient, each symptom and make a diagnosis on clinical findings.
If you think you may have Lyme, you can email Ingenex and request a testing kit that they will mail to you. You do need a doctor’s orders to have the blood drawn, and it can be expensive, but it is worth it to some to get a diagnosis.
With Paige, her doctor started with the Western Blot, we didn’t have the ELISA done. However, our little lab didn’t test for many bands. I was surprised when I started learning about the different tests how few bands they actually tested for, 9 bands were all they tested for. And they did not test for the bands that are indicative to Lyme specifically.
Paige tested positive for both the IgM and IgG immunoglobulin. She also tested positive in band 41, which means ‘flagellin protein of spirochetes’. So, her blood showed protein from spirochetes, they just can’t confirm the protein is specific to Lyme. Band 45 was also positive; this band is cross reactive for all Borrelia and most patients that test positive on band 45 also have Ehrlichia, which Paige does have. Band 58, is a heat shock Bb protein, and she was positive in this band. She was positive in band 66, which is cross reactive for all Borrelia. And lastly, band 93 which tests for the DNA or genetic material of Borrelia Burgdorfin was positive. This band alone should have been a red flag for her pediatrician, to at least consider the possibility that she does have Lyme. But we were told by 3 doctors that her tests were negative and there was no way she could have Lyme. One doctor even told me to ‘stop being a google doctor’, we live in Southern California, the risk of Lyme is rare and there is almost no chance that Paige has Lyme Disease.
If you think there is a chance that you may have Lyme Disease, you need to find a Lyme Literate Doctor in your area. Trust me when I say the mainstream medical field won’t listen to you. We saw a pediatrician, 2 ER doctors, 2 cardiologists, 2 neurologists, many techs, nurses, did tens of thousands of dollars in testing, and we were told Paige had anxiety and was depressed. Don’t waste your time, money and energy with regular doctors, find a LLMD! Here is a link to a quick quiz that Dr. Horowitz created. Answer the questions, tally up your score and see where you fall on the scale. Paige took this quiz back in February and her score was 57! I am sure it would be much higher now!