Getting tested for Lyme disease is not as simple as visiting your family physician and then taking a blood draw requisition form to the local lab. Unfortunately the power of and confidence in doctors has been stripped away, preventing them from making a clinical diagnosis. Even when a physician has studied Lyme and researched treatments, the College of Physicians and Surgeons insists a patient test positive on bloodwork before allowing the knowledgable and well-versed doctor to treat. They are to use an inaccurate two-tiered blood test system to determine when patients have Lyme. Rarely is the test accurate and therefore rarely can physicians provide a diagnosis and treatment plan. There are a few reasons why it is difficult to determine a Lyme diagnosis through testing. If you suspect Lyme disease and tested negative on a Lyme test, you may want to continue reading. A negative result does not mean you are free of Lyme. Too many people say, “I was tested for Lyme, it was negative. I was diagnosed with Lupus or MS.” Lyme is the great imitator, and sadly, many people are misdiagnosed with other diseases when they have bacterial infections like Borrelia burgdorferi (Lyme bacteria) causing the symptoms. So what is up with the testing? What can you do to rule out Lyme or determine if you suffer from tick-bourne infections? How should you get tested?
#1: Lack of Direct Testing in Standard Labs
- One part of the problem stems from the lack of a direct test for Lyme disease . The tests do not look for the Lyme spirochetes themselves, but the immune response to these in the form of antibodies.
- The blood tests offered to you detect antibodies, the measure of one’s immune system trying to fight the infection. B. burgdorferi evades the immune system. It has adapted to antibiotics and immune response. It is able to quickly hide in other cells and produce biofilm to prevent detection, kind of like going undercover. Many people do not mount a significant, measurable immune response Lyme. Especially the antibodies chosen for the tests.
- There is another issue with testing the antibodies: even if one does produce a response, antibodies will remain in the body whether the infection is still active or not. Because these antibodies can linger even when infection is gone, they indicate exposure at some point in the past, but do not confirm that infection is active at the time. (Cure Unknown, pg 10)
- If you ask for a Lyme test, you will first take the screening test, called ELISA (for enzyme-linked immunoabsorbent assay). This test consists of ruptured spirochetes that have been coated on a plate. Blood washed over the plate should contain antibodies that will stick. An enzyme that changes the colour of human blood is added to the plate, and the more intense the color, presumably the worse the Lyme. If a person receives a positive result on the ELISA (which is rare), a second diagnostic step is taken: the Western Blot. (Cure Unknown, 116-117, Why Cant I Get Better, 10, 34, 60-62)
- Labs use a two-step method to analyze antibodies formed against spirochetes in human blood. The first step, ELISA, is really just a screening test to see if Lyme is even possible. Only if you pass this first test do you take the second tier, Western Blot. But based upon one strain of B. Burgdorferi bacteria, when there are hundreds, makes this test insensitive and inaccurate. Bands have been taken out of the test, making it harder to pass. (http://www.health.alberta.ca/documents/Lyme-Disease-Laboratory-Testing-2015.pdf)
- Even the National Institutes of Health website says the tests are unreliable and generate not only false positives, but also false negatives (Cure Unknown, 159).
#2: Standard, Readily Available Tests Are Based on Few, Rare Lyme Antibodies
- The most common and easily detected antibodies were not included in the Western Blot test! The founder and president of Immunetics, the company that manufactures the Western blots, does not have confidence in the bands chosen. He obtained samples of validated patient blood and had them analyzed by a computer program built with help from scientists at the Massachusetts Institute of Technology. Levin showed the presence of several antibody patterns, of which the CDC’s was just one – and not the best one, at that. “If the two-tier criteria had been the best possible criteria,” notes Levin, the computer program “would have taken us to it. But it did not. A number of other patterns emerged as the statistical front runners, instead.” (Cure Unknown, 119-120)
- As aforementioned, the tests vary but are based upon a single strain of B. burgdorferi, and that strain comes from Europe! There are over 100 North American strains. There are MANY proteins expressed by hundreds of strains that would be best included in tests. Despite fear of sounding like a conspiracist, I must point out that two highly specific B. burgdorferi proteins, outer surface protein A (OspA) and outer surface protein B (OspB), were removed from the test. These outer proteins are specific to Lyme and would make testing quite accurate (when an antibody response mounts). But OspA and OspB have been used to create a Lyme vaccine, and if included on a Lyme test, everyone who receives the vaccine will test positive…. pause, and think about the implications of what I am saying. (By the way, the initial LYMErix vaccine failed miserably, causing serious illness instead of preventing Lyme infections. The millions of dollars hoping to be made from the vaccine did not occur, yet the tests that excluded the main antibodies for reliable testing were not put back into the blots). I strongly suggest reading Cure Unknown by Pamela Weintraub and documents regarding the Dearborn Conference of 1994.
- The antibody patterns chosen for the Western Blot were based upon the the strain which causes the bull’s eye rash and swollen knees (which few people actually see). Lyme does not always present this way, in fact, it often does not. Antibodies in patients with seizures, intense pain, slurred speech, and cardiac issues present a different Lyme that goes undetected in tests.
- Not to mention the fact that B. Burgdorferi morphs and adapts, thereby changing band patterns from those used for blots.
- Even patients with advanced disease and high levels of antibody fail the Lyme ELISA between 30 and 60 percent of the time. If you fail the ELISA you cannot go on to have the Western Blot testing.
- Yet the Western blot, too, misses many patients with Lyme. In this test the spirochete’s proteins are separated by weight and spread out on paper, with the lighter proteins along the bottom and the heavier ones up top. If you’ve been infected and generated antibodies to Lyme, then a horizontal line, or “band,” would form wherever a given antibody and the protein it targets match up on the sheet. A couple of weeks after a tick bite you need specific bands to pass the Western blot for Lyme. (This is called the immunoglobinM, or IFM, response.) A month or more after the bite, you have to register positive on five or ten designated bands to be considered positive. (This was the immunoglobin G, or IgG, response.) Cure Unknown, 117 and Why Canèt I Get Better 10-11, 60-63.
- According to ILADS, the two-tiered approach misses more than 40 percent of the patients. A year after the tick bite, 50 percent of patients with later stage disease routinely slip through the cracks. http://www.ilads.org/lyme/primary-care-physician-brochure.pdf, https://www.ilads.org/lyme/ILADS_Guidelines.pdf
#3 Lymies Often Do Not Produce Antibodies, Lyme Evades the Immune Response
- Besides “hiding” in tissues and in other cells, the bacteria evades the immune system. And Stony Brook scientists found that patients exposed to antibiotic right after a tick bite could have their immune response so blunted they might elude detection forever, no matter how much the spirochete spreads. Other times, common strains of the spirochete simply lacked all the proteins the test screened for. (Cure Unknown, 115-116)
- The spirochetes often morph and change to evade antibiotics and immune response. B. Burgdorferi can become a cyst, or can hide intercellularly.
- Many people opt for PCR testing. This involves searching blood for the actual DNA of an infection. These seems to work somewhat better than the antibody tests, especially when looking for babesia and bartonella and other tick-borne pathogens. But it can be difficult to find the active, live B. burgdorferi spirochetes in the bloodstream as they quickly burrow into muscle and connective tissue. Lyme bacteria is spiral shaped, like syphillis. They don’t stay in the bloodstream long, prefering to corskscrew their way into tissue. There are tests that look for live, active infections and not the immune response to these, but if the bacteria does not live in the bloodstream, these tests are better but not totally definitive either.
- However, using polymerase chain reaction (or PCR) to analyze for species-specific DNA, is more sensitive and effective than the two-tiered tests for antibodies. Plus, if a physician knows how to pulse treatment and “trick” the bacteria into leaving the tissues and switching back to spirochete form from cysts, the blood will have a live infection to measure.
- A lumbar puncture to test cerebrospinal fluid rarely tests positive even in definite cases of neurological Lyme…spirochetes don’t hang out there.Borrelia migt be present in the form of cysts. Scientists have cultured spirochetes in cerebrospinal fluid in the lab, and found that within a day they had all converted to cysts. When the cysts were transferred to a medium normally used to grow Borrelia, they converted back to normal spirochetes in about two weeks. The observation could explain why spinal fluid so often tests negative for Lyme disease, and might explain the symptoms of neurological Lyme diease itself. (Cure Unknown, 254)
- As an experiment, patients can take a short course of antibiotics, killing some of the bacteria, which would release their DNA in the blood. Then urine can be analyzed for spirochetal DNA. In case studies doing this, the results come back unequivocally positive for Lyme disease. Antibodies to the spirochete means merely that one has been exposed at some point in the past, but DNA in urine, implies a current and active infection. (Cure Unknown, 236). There are labs in the US and Europe who test this way.
#4 Ticks Carry a Smorgasbord of Infections, not just Lyme bacteria
- Ticks do not just carry Lyme bacteria. They infect hosts with a myriad of infections including other bacteria, parasites, and viruses. Only private labs are testing for the malaria-like parasite, babesia, that ticks carry. This infection sometimes does more damage to the host than B. burgdorferi. There are over thirty strains of bartonella, yet labs only test for one strain (cat scratch fever). Plus, if a person is given antibiotics right after a tick bite, only the Lyme bacteria will likely die. The other infections will survive.
- Asking for a Lyme test at the local clinic does not include testing for all the coinfections ticks carry.
THE BOTTOM LINE
There are many labs with more sensitive testing, with a variety of styles of tests. These include, but are not limited to Armin Labs, LabCorp, Medical Diagnostic Laboratories, Quest, IGeneX. All have websites that thoroughly explain the tests available and how they work. You become a consumer not just a patient when suspecting Lyme. You have to research and determine the best testing methods. Many health professionals in Canada do not put much stock in these labs. But they do test for live, active infections. These labs do test antibodies as well, but are more sensitive and accurate than the ELISA and Western blot because they contain broader criteria and test for more strains of Borrelia and bands, including fourteen separate regions of the spirochete’s protein coat and the markers indicating OSpA and OspB. And no, doctors are not profiting from sending these labs your tubes of blood. You pay for the testing whether the results are positive or negative. There is no big conspiracy here.
This may totally discredit me in the eyes of my scientific readers, but I rarely send blood to labs anymore to measure these infections. I do regular bloodwork to monitor my other diseases and health issues (thyroid, coagulation, WBC, issues with hemoglobin, etc.). But to monitor my vector-bourne infections I rely on live blood analysis, biomeridian testing, and symptoms. I utilize the technology and methods of a Traditional Chinese Medicine doctor. I have seen the elusive spirochete swimming in my blood. We pulsed antimicrobial herbs and used a cyst-buster. This drew the bacteria out of my joints and connective tissue, causing it to return to spirochetal form and re-enter the blood stream. We pulse meds to attack the Lyme, drawing it out and annihilating it. At first I thought the biomeridian machine was wonky. I was scared to tell people about it for fear of sounding hokey. But it detected the exact results as all the blood work I had done, down to the exact strains of infections! It measures active infections. Using this device for testing, I know when a virus is no longer alive and can quit treatment for it. I know when my babesia is in remission. Not to say I won’t do such blood work through international labs again, but for now I feel in tune enough with symptoms and my TCM doctors methods to move forward in treatments.
I guess what I am saying is, if you suspect Lyme you probably have it. Failing a standard test does not rule out the fact Lyme is present, not to mention the coinfections. Take a look at the Horowitz Sixteen Point Differential Diagnostic Map and complete the Horowitz Lyme-MSIDS Questionnaire (contained in the books of Dr. Richard Horowitz: Why Can’t I Get Better? and How Can I Get Better?). Find a Lyme literate physician or ND who won’t get his/her hands slapped for discussing Lyme with you and is not constrained by politics. Then research and determine which of the more accurate afformentioned tests may be best for you. People scoff at the price of lab tests, but our regular bloodwork is expensive, too. You just don’t notice because of public funding. The labs in other countries require payment, but only because your AHC can’t cover the expense. It is your health. You can’t put a price on health and you certainly can’t put a price on peace of mind once you have a proper diagnosis.
Please keep in mind I am not a physician or researcher or lab tech. I simply have experience and do my own research. Most of the information for this post comes from online resources from various labs, Cure Unknown (an excellent book by Pamela Weintraub), and Why Can’t I Get Better by Dr. Richard Horowitz. As always, do your own research and speak with a Lyme literate physician when you suspect Lyme disease.