Maybe you’ve heard more about it in the media lately and wonder what the fuss is all about. Or maybe you’ve recently been diagnosed and want to educate yourself. Or maybe your loved one is suffering and you want to learn more. Whatever your experience with Lyme disease might be, the information out there can be overwhelming, confusing, contradictory, and even controversial.
At Holtorf Medical Group, we are committed not only to treating complex illnesses and offering hope for the chronically ill, but also to educating others about these conditions and what treatments we use. Here is an overview of the history of the disease as well as a summary of the most current knowledge available on symptoms, diagnosis, and treatments. Hopefully it will answer many of the questions you might have, as well as offer resources for further reading.
What Exactly is Lyme Disease?
Traditionally, it has been considered an acute infectious disease caused by a corkscrew shaped bacterium (called a spirochete) classified as Borrelia burgdorferi. This infection is known to be carried and transmitted to humans and animals by ticks (mainly deer and black-legged ticks), but may also be carried by mosquitos. The disease was named after Lyme, Connecticut – the place where it was identified over 30 years ago. The most common treatment for acute infection with Borrelia is 2-4 weeks of oral antibiotics, often doxycycline.
How Common Is It?
A few years ago, the Centers for Disease Control and Prevention (CDC) admitted that they had underestimated the number of new yearly cases in the U.S. and increased the count from 30,000 to 300,000. Other experts say that currently, it may be closer to 500,000 new cases per year. While historically most cases in the United States have been reported in the coastal northeast, mid-Atlantic states, Wisconsin, Minnesota, and Northern California, the geographical distribution continues to spread. And now, Europe is thought to be even more affected than the U.S. But it doesn’t stop there. Currently, Lyme disease has been found in almost every continent in the world, making it a worldwide pandemic.
Why Is There Controversy?
Lingering and Unexplainable Symptoms
The controversy began when patients who were diagnosed with acute Lyme borreliosis continued to experience lingering symptoms, despite a negative blood test following standard treatment with a short course of antibiotics. This was written off by many doctors as a “post-Lyme syndrome” rather than active infection, but some patients and healthcare practitioners were skeptical. Other chronically ill patients have tested positive for Lyme disease or displayed symptoms consistent with it, despite not ever remembering having a tick bite or associated rash. From there, controversy has sprouted among medical experts regarding whether or not a chronic or “late-stage” form of the disease exists; and if so, how to diagnose it accurately and treat it effectively.
Outdated and Inadequate Testing
One of the problems with the criteria still being used by many doctors to determine a positive test, is that it was originally not intended by the CDC to be used for diagnosis. In 1975, they developed the New York State testing panel (followed by the Western blot test) for epidemiological purposes – to essentially help track the spread of the different types of Borrelia. At that time, only 10 strains had been identified and antibodies for 5 of the 10 needed to be present for a positive diagnosis. In other words, you could have antibodies to 4 strains of Borrelia in your blood and still be given a negative diagnosis.
Fast forward to present day and approximately 100 strains of Borrelia have now been identified in the U.S. and over 300 in the world. Between 1990 and 2010 alone, 15 new strains were identified. New strains are being identified all the time, with one of the most recent being Borrelia mayonii in the upper Midwestern part of the U.S. The study was published less than 2 months ago. This means that the standard blood testing still being used in most medical settings (despite being developed in 1975) leaves a lot to be desired. There is an incredibly high false negative rate and ZERO false positives (since testing is based on antibodies and antibodies don’t lie). These tests are negative anywhere from 50-85% of the time, with less than 15% specificity.
Recent research has led to further understanding of this unique bacteria, helping to explain more reasons for the high false negative rates of antibody testing. In chronic cases that have gone undiagnosed for a long time – sometimes many years – the immune system has been weakened to the point of producing an inadequate antibody response. In addition, the bacteria may “hide” under the right conditions (such as recent antibiotic use) or go through periods of dormancy, which also changes the antibody response.
Two Standards of Care
Physicians generally fall into two camps when it comes to Lyme disease. Doctors with the IDSA (Infectious Diseases Society of America) have largely continued to use the standard testing and treatment protocols. In addition, many completely dismiss the existence of a late-stage form, despite approximately one thousand research articles showing proof of chronic infection in many patients. On the other side of the debate, members of ILADS (The International Lyme and Associated Diseases Society) contend that the traditional treatment is often ineffective and even counterproductive. These physicians recognize the complexity of the disease, acknowledge that many patients are infected chronically, and therefore approach testing and treatment very differently.
What Are The Symptoms?
Symptoms experienced during acute infection are somewhat different than those experienced during chronic infection, although there is some crossover. Carefully documenting symptoms can help healthcare providers in the diagnosis process, since testing is not always conclusive.
Acute/Early-Stage – usually appearing 1-2 weeks after a tick bite and may include:
- Swollen lymph nodes near the tick bite
- Other flu-like symptoms (fever, muscle and joint pain, headaches)
- Bull’s-eye rash that can start localized, then spread (only present or visible in some patients)
Chronic/Late-Stage – symptoms lasting for more than one year and may include:
- Arthritis (often migrating to different joints)
- Extreme fatigue
- Night sweats
- Psychological disorders
- Autoimmune diagnosis
- Neurological symptoms (tremors, twitching, facial paralysis, numbness/tingling)
- Arrhythmias or other heart complications
- Sleep disorders
- Other unexplainable symptoms
What Testing is Available?
Unfortunately, there is still no consensus on diagnostic testing. No single test is completely reliable or infallible, but the good news is that advances in research and technology have led to more promising options than ever before. The best way to pursue an accurate diagnosis is to find a doctor who specializes in Lyme disease and who uses multiple diagnostic tools. Some of the more thorough, sensitive, and cutting-edge tests, including:
- Biomarkers such as natural killer cell function, CD 57/CD8+ count, C4a complement, C6 peptide, urine antibodies – effective at identifying past or present infection and as well monitoring treatment progress
- Lyme Borrelia culture test – new technology that can test for active infection by detecting the presence of the bacteria itself (rather than antibodies); thought to be the most sensitive and accurate test available
- PCR – DNA based test
- Western Blot serologic studies
- Lumbar puncture
- Neuropsychological testing
- Brain MRI and SPECT scans
Why Is It So Hard To Treat?
Spirochetes are experts at tricking the immune system. They are coated with a saliva-like substance and each is adorned with a flagellum, both features that effectively help them to evade the body’s defense mechanisms. If that weren’t bad enough, they also have the ability to change their outer cell wall proteins. It can change from its “normal” spiral (or cellular) shape to four other forms – cystic, granular, L-form, and biofilm. The latter may be the worst of all, since biofilms are virtually impenetrable due to the gel it forms around itself. In this form, they can also “recruit” other cells of the body into the biofilm, as if it’s actually converting the “enemy” (the body’s disease fighting cells) into “allies.”
While many Lyme specialists use high dose, long-term antibiotics to treat this stubborn infection, one study showed that pulsed antibiotics (such as 5 days on, 5 days off) may be more effective. This type of approach has traditionally been thought to create antibiotic resistance with other types of infections. However, this study showed that long-term treatment may cause Borrelia to go into a metabolically inactive state, called a persister cell. At that point, the bacteria is unaffected by, but not resistant to, the antibiotics. This makes the case for a different kind of dosing schedule. Research is still on-going, but this is just one example of why it is so important to have a doctor who stays abreast of the latest research as it develops.
As you can see, Borrelia alone is a force to be reckoned with; but it is rarely the only pathogen involved. Either directly acquired from a co-infected tick or indirectly from a weakened, over-worked immune system, Lyme patients will often have multiple other chronic infections at any given time. These infections can be bacterial, viral, parasitic, or fungal in nature. Some commonly seen co-infections include Babesia, Bartonella, Rickettsia, Mycoplasma fermentans and pneumoniae, Chlamydia pneumoniae, Epstein-Barr virus, Parvo virus, and Candida Albicans.
Multi-Systemic Infectious Disease Syndrome
This is a term coined by world-renowned Lyme disease expert, Dr. Richard Horowitz. It very accurately describes the complex and devastating ways the illness takes a toll on a person’s body. The symptoms and complications experienced by patients can be attributed to the following and more:
- Chronic inflammation throughout the body
- Invasion into various tissues (ie. inflames lining of the joints)
- Demyelination in the CNS (similar to multiple sclerosis)
- Immune system suppression and exhaustion (a decrease in natural killer cells over time)
- Gastrointestinal manifestations such as malabsorption
- Adrenal insufficiency and other hormonal disruptions
- Multiple chemical sensitivities due to toxin build-up/overburdened liver
- Mitochondrial dysfunction
What Are The Treatment Options?
Because of the complexity of this illness, we believe that the best approach is an integrative one that addresses both the infections directly and the systemic effects of the illness on the body. Depending on the individual’s needs, a Lyme literate healthcare practitioner may use some combination of the following therapies:
- Prescription and/or natural antibiotics
- Immune modulators
- Hormone balancers
- Nutritional supplements
- Low Dose Immunotherapy
- Ozone Therapy
- Stress relief or mind/body techniques
- Nutrient dense, anti-inflammatory diet/identification of food sensitivities
- Good sleep hygiene
- Low to moderate exercise/movement
- Smoking cessation
Where Can I Find More Information?
For a more thorough explanation of the various topics surrounding Lyme disease:
- Use the search tool on our home page (or see the reference section below) to browse related articles
- Visit the website for ILADS (The International Lyme and Associated Diseases Society
- Browse the website for The Lyme Disease Network
- Check out the Global Lyme Alliance