Did Lyme disease become the “disease with 1,000 faces?” Or “the great imitator?” If you ask Lyme experts, they will definitely say yes! Lyme causes dozens of symptoms that can easily be mistaken for other conditions, such as chronic fatigue syndrome, fibromyalgia and autoimmune diseases including multiple sclerosis. Many patients with chronic Lyme disease suffer unnecessarily because they never even know that they have the disease—and those who are diagnosed often are not given the best treatments.
Your risk of getting Lyme disease is higher than you might think. According to the latest reports the number of cases is as high as about 500,000 per year in the US.
Whatever your experience with Lyme disease might be, the information out there can be overwhelming, confusing, contradictory, and even controversial. Many people will agree that only the proper education on the matter will eventually help you get to the right doctor and treatment plan for you.
How Do You Get Lyme Disease?
The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia Burgdorferi, transmitted by ticks. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms.
Fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete.
Watch this to find out other ways the disease may be transmitted.
Symptoms are Various and Multiple
Acute or early-stage infection – usually appearing 1-2 weeks after a tick bite may include swollen lymph nodes near the bite, flu-like symptoms, and bull’s-eye rash. Although the bull’s eye rash or erythema migraines (EM) is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly.
With chronic Lyme or late-stage symptoms lasting for more than one year, people don’t usually complain of just one symptom, but instead notice a cluster of symptoms, which can often lead doctors to the wrong diagnosis. Some of the most common symptoms are headaches, problems with speech, coordination, memory and concentration, fatigue, numbness and burning sensations, joint and muscle pain, dizziness, sleep problems, palpitations, psychiatric symptoms, autoimmune diagnosis, arrhythmias or other heart complications.
Others may also complain of day sweats, night sweats and chills, as well as shortness of breath, with an unexplained cough if they have contracted babesiosis. A different tick-borne infection than Lyme disease, babesiosis can be transmitted with the same tick bite. It’s a malaria-type parasite which makes people much sicker and difficult to treat, with resistant symptoms.
Unfortunately, the standard blood testing still being used in most medical settings (despite being developed in 1975) is completely outdated. These tests are negative anywhere from 50-85% of the time, with less than 15% specificity.
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 and makes it difficult to diagnose.
A bullseye rash is also a classic manifestation of Lyme disease, and does not require a positive blood test, but less than 50% of people may get the rash, and it may be located in a part of the body where the rash cannot easily be seen.
Most experts recommend getting both the ELISA and Western blot tests. If your Western blot shows a 23, 31, 34, 39 and/or 83-93 band, this indicates Lyme. Testing for Babesia, Anaplasma, Ehrlichia and Bartonella (other tick-transmitted organisms) should be performed. The presence of co-infection with these organisms points to probable infection with the Lyme spirochete as well. If these coinfections are left untreated, their continued presence increases morbidity and prevents successful treatment of Lyme disease.
Other tests to check for diagnosing resistant symptoms are the DNA test called polymerase chain reaction (PCR) and antibody titers, to check for Babesia (a malaria-like parasite) and Bartonella (which causes cat scratch fever).
Some of the more thorough, sensitive, and cutting-edge tests, many of which are used at Holtorf Medical Group, include: biomarkers such as natural killer cell function (effective at identifying past or present infection and monitoring treatment progress), Lyme Borrelia culture test (new technology that can test for active infection – thought to be the most sensitive and accurate test available), PCR – DNA based test, Western Blot serologic studies, neuropsychological testing and brain MRI and SPECT scans.
The most common treatment for acute infection with Borrelia is 2-4 weeks of oral antibiotics, often doxycycline. But about one-quarter of these patients—and a higher percentage of those who don’t get quick treatment—will develop a chronic infection that doesn’t respond to simple antibiotic therapy. Although some doctors don’t think Lyme bacteria survive after 30 days of antibiotic treatment, many studies have shown that they can.
There are 5 subspecies of Borrelia Burgdorferi, over 100 strains in the USA, and 300 strains worldwide. This diversity is thought to contribute to the antigenic variability of the spirochete and its ability to evade the immune system and antibiotic therapy, leading to chronic infection.
Spirochetes are experts at tricking the immune system, because they have the ability to change their outer cell wall proteins. This means the bacteria can change from its “normal” spiral (or cellular) shape to four other forms – cystic, granular, L-form, and biofilm. That is why a Lyme literate doctor needs to stay abreast of the latest research as it develops, in order to find the best methods to address this kind of chronic and stubborn infection.
Many Lyme patients can’t properly heal themselves because their doctor didn’t consider the presence of other multiple co-infections which weaken immunity, like bacterial, viral, parasitic, or fungal infections. Because of the complexity of this illness, 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 medical doctor (LLMD) may use some combination of: prescription and/or natural antibiotics, antivirals, antiparasitics, immune modulators, hormone balancers, nutritional supplements, low dose immunotherapy and ozone therapy.