{"id":19292,"date":"2016-05-24T01:44:11","date_gmt":"2016-05-24T05:44:11","guid":{"rendered":"https:\/\/www.saratoga.com\/living-well\/2016\/05\/the-caveats-of-estimating-lyme-disease-cases-and-the-problems-with-testing.html"},"modified":"2017-11-29T07:59:25","modified_gmt":"2017-11-29T12:59:25","slug":"the-caveats-of-estimating-lyme-disease-cases-and-the-problems-with-testing","status":"publish","type":"post","link":"https:\/\/www.saratoga.com\/living-well\/2016\/05\/the-caveats-of-estimating-lyme-disease-cases-and-the-problems-with-testing\/","title":{"rendered":"The Caveats of Estimating Lyme Disease Cases and the Problems with Testing"},"content":{"rendered":"

How Many People Really Are Effected?<\/b><\/p>\n

Previously, I reviewed the various problems regarding the current diagnostics and estimates of number of people affected by Lyme disease. As far as surveillance, the CDC lists the limitations of their methods on their website which includes: under-reporting, lack of state funds to classify and monitor cases, different times of closing of estimates per year (between the CDC and different states), changes in case definitions throughout the years, and surveillance by county of residence, not county of exposure. (So, is it really 300,000?) Due to the fact that our biodiversity of deer, rodents, and mammalian creatures is declining due to our environmental fingerprint, we will probably see a continued rise in cases in the years to come.<\/p>\n

Then, There’s the Issue of Testing…<\/b><\/p>\n

This is a huge controversy. Actually, for any diagnosis and lab use, there are issues with validity and reliability. I discussed that more in previous blog (http:\/\/dr-lobisco.com\/the-problem-with-lab-numbers-labels\/). According to one article in the Journal of Clinical Microbiology (1999)<\/i>, the following issues crop up in diagnosis using the CDC’s two-tier diagnostic system for Lyme disease. These can occur within and among different labs on the immunoblot testing due to:<\/p>\n

    \n
  1. Subjective interpretation by the lab technicians<\/li>\n
  2. Antigen extract validity (measurements vary with different forms of B. burgdorferi <\/i>and different antigens can be read and misinterpreted due to their same molecular mass)<\/li>\n
  3. The expression of the antigen is related to how it is cultured in the lab and the growth phase of the critter, this can vary between labs and specimens<\/li>\n<\/ol>\n

    Many argue that this method is meant to be for surveillance only. In fact, the National Notifiable Disease Surveillance Data System for Lyme Disease (Borellia burgdorferi<\/i>) CSTE Position Statement(s) states on the CDC site, “This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.” (https:\/\/wwwn.cdc.gov\/nndss\/conditions\/lyme-disease\/case-definition\/2011\/)<\/p>\n

    The Diagnosis Issues and More Lyme Controversies<\/b><\/p>\n

    So, the diagnosis of Lyme disease is based on a test that many feel is inadequate. Furthermore, even if the tests were 100% valid and reliable, different people have different immune responses. This makes one single test relating to one aspect of the immune response lacking in usefulness for many. I discussed why this critter is so hard to catch previously. Here is a review of these factors:<\/p>\n

    1. Immunosuppression agents with entry of the tick saliva, making it hard to detect at “first bite.”<\/p>\n

    2. Genetic, phase, and antigenic variation makes the critter the “master of disguises” using unique mechanisms to evade antibiotics and the immune system’s detection. Furthermore, most tests only look for one species, but different species with differing genetics can lead to different symptoms and differing immune responses (Borellia garini, Borellia afezlii, Borellia hammseli, Borellia miyamotoi<\/i>)!!<\/p>\n

    3. There’s some evidence that Borellia <\/i>is becoming resistant to antibiotics in vitro, meaning the bug may be getting smarter to our attempts to kill it.<\/p>\n

    4. Physical seclusion which means not only can spirochetes and bacteria change forms and trick our immune system, they can also hide in our bodies by binding to certain substances in the body. This makes them “invisible” to the immune system.<\/p>\n

    5. Borellia<\/i> can secrete proteins to adhere to cells and pierce through their walls so they can “hibernate.” Then, they come out of hiding when the immune system least expects it.<\/p>\n

    6. This bug has become so smart it can go around iron poor environments and thrive on manganese. It can also produce a DNA base critical for its survival!<\/p>\n

    You can read more about this in this blog<\/a>, where I gave a brief summary of Lyme disease, its complex and various symptoms (it is known as “the great mimicker<\/a>“), the problem with its “posse” of co-infections, the controversy with treatment, and the existence of chronic Lyme disease (which I get into more below).<\/p>\n

    Thankfully, there are some new methods and tests for Lyme disease which offer some promise. These new methods are evaluating the person’s genomics, searching for the actual protein in the serum (verses the immune response to it), a urinary antigen test, and more. I wrote about some of these on this site here<\/a>. This may help with finding the critter faster, which could prevent chronic issues. However, will it help with treatment? I do not know for sure.<\/p>\n

    So, as you can see there are a lot of “issues” and many factors involved for one little bugger, right?<\/p>\n

    The Big One… Controversy That Is…<\/b><\/p>\n

    Speaking of chronic Lyme disease, there is a schism about this that runs pretty deep in society and in medicine. It ranges from indifference or lack of knowledge of the disease to those afflicted and suffering hopelessly. On the medical forefronts, there are many “Lyme literate physicians” (LLMDs) who have education in the chronicity of Lyme disease and dig into the treatment and pathology of the critter with antibiotics and other methods. The opposing position is one in which some physicians feel that Lyme cannot be chronic and that other factors are at play related to the symptoms:<\/p>\n

    These facts would seem to support that individuals with different genetic variations and immune robustness will respond differently to an infection with the spirochete. Still, the Infectious Disease Society of America (IDSA) does not believe in chronic Lyme and typically will not treat a Lyme patient beyond acute management. On the other hand, the International Lyme and Associated Diseases Society (ILADS) group does believe that Lyme can and often persists beyond a few weeks, and are willing to treat someone beyond the four-week period. These two groups represent the schism in LD and differ in treatment.27<\/sup><\/i><\/p>\n

    According to Interdisciplinary Perspectives on Infectious Disease, the evidence for chronic Lyme Disease (CLD) is robust, 28-35\u00a0<\/sup>and recognizing it could facilitate efforts to avoid diagnostic delays of two years and durations of illness 4.7-9 years…<\/i><\/p>\n

    Interestingly, the Centers for Disease Control (CDC) also acknowledges a chronic form of Lyme disease called “Post-Treatment Lyme Disease Syndrome.” Their website states here:<\/p>\n

    The Centers for Disease Control (CDC) also acknowledges a chronic form of Lyme disease called “Post Treatment Lyme Disease Syndrome.” (http:\/\/www.cdc.gov\/lyme\/postlds\/index.html)<\/i><\/p>\n

    The Power of Holism: A Naturopathic and Functional Medicine Perspective<\/b><\/p>\n

    With the complexity in diagnosis, various symptomology, immune evasion by the critter, and chronicity, many Lyme disease sufferers struggle with finding solutions and physicians who will understand their concerns. My method is to treat the whole person and balance their body, mind and spirit, not just go after the bug.<\/p>\n

    Click here<\/a> to learn about a new model and integrative perspective on my homepage blog where I go into detail about treating the whole person versus killing the bug.<\/p>\n

    References:<\/b><\/p>\n

    Center for Disease Control and Prevention. Lyme Disease. http:\/\/www.cdc.gov\/lyme\/<\/p>\n

    http:\/\/www.cdc.gov\/lyme\/stats\/survfaq.html<\/p>\n

    As Summertime Hits, Here Comes the Ticks!<\/a><\/p><\/blockquote>\n