What exactly is Lyme disease?
Lyme disease is a serious condition transmitted by the bite of an infected deer tick, also known as the black-legged tick. Affecting multiple areas of the body, symptoms of Lyme disease generally begin to appear within 1-2 weeks after being bitten, often beginning with a telltale red rash, or a “bulls-eye” ring, usually, although not exclusively, around the site of the bite.
Lyme disease actually occurs here in Utah more than previously believed. In Utah, the Ixodes pacificus tick carries the disease -– a tiny tick that ranges in size from a poppy seed to a sesame seed. The ticks feed on and are transported by field mice, deer, and other warm-blooded animals.
What are the symptoms that a person might experience that indicates Lyme disease?
Early signs of infection include swelling of lymph nodes near the tick bite, headache and general achiness. If diagnosed and treated in the early stages, the disease can usually be cured with antibiotics. If the disease is not successfully treated or progresses, patients may begin to experience more serious symptoms including pain in joints and tendons, tingling or numbness in the extremities and even facial paralysis.
Even with treatment, long-term recovery often varies from patient to patient and many have lingering, debilitating symptoms long after treatment ends, often referred to as chronic Lyme disease, and often results in severe fatigue, depression, bipolar disorder, panic attacks, weakness, or twitching. It can also be associated with neurological disorders such as multiple sclerosis, dementia, such as Alzheimer’s disease, and amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease). The infection can often also result in hormonal deficiencies, abnormal activation of coagulation and immune dysfunction, which can contribute to the cause of symptoms.
Why do most patients find minimal benefit from seeing their normal family doctors or specialists? Is it that hard to diagnose?
Often times, patients with chronic Lyme disease complain of ‘strange’ or ‘weird’ symptoms that cannot be explained even after numerous doctor visits and many times are told it is psychological or hypochondrial in nature.
Because the symptoms are so variable and they mimic the symptoms of other chronic condition, most patients are simply not considered for Lyme disease testing or treatment. In the rare instance testing is done, however, standard tests miss over 90% of chronic Lyme disease cases. The problem with these tests is that they are designed to detect acute Lyme disease and are very poor at detecting chronic Lyme disease. Additionally, many doctors (infectious disease, internists, family practice, etc.) rely on the Center for Disease Control (CDC) criteria to define a positive test. This criterion was never meant to be used for diagnosis, but rather for tracking data.
What makes Holtorf Medical Group unique in accurately detecting Lyme disease?
A newly developed and validated Lyme culture test is now providing hope for patients by providing a more thorough test in both the initial diagnosis as well as follow-up testing when symptoms sometimes linger, often showing the bacteria is still present.
Most tests for chronic infections look for the body’s response to the infection, or antibody production, as opposed to the actual infection. In order to prove there is an active infection, it is necessary to culture or ‘grow’ the infection from the patient’s blood. Until recently, there was no such culture available for Lyme disease because Lyme could not be grown outside the body like other bacteria. The new test shows that the lingering effects are not due to post-Lyme syndrome, but are rather due to the presence of active Lyme disease that was inadequately treated. This new breakthrough will help patients by now providing more thorough treatment options.
How are you able to successfully treat and eventually eradicate the bacteria that you mentioned that causes Lyme?
Often times those who were properly diagnosed with Lyme disease were treated with the standard treatment of a few weeks of antibiotics. After treatment, patients who still suffered from symptoms were told they had post-Lyme syndrome, which was thought to simply be lingering effects after the Lyme bacteria had been eradicated. Treatment can be very problematic as the bacteria can transform from the standard cell wall form to a non-cell wall form (l-form) and also into a treatment resistant cyst. Standard antibiotic treatments are only effective against the cell wall form and are ineffective against the L-forms and cystic forms that are usually present in chronic Lyme disease. Consequently, the usual 2-4 weeks of intravenous or oral antibiotics are rarely of any benefit. The use of longer courses of oral or intravenous antibiotics for months or even years is often ineffective as well if used as the sole major therapy. A multi-system integrative approach can, however, dramatically increase the likelihood of successful treatment. This includes using a combination of synergistic antibiotics that are effective against the l-forms and cystic forms, immune modulators, directed anti-Lyme supplements, anticoagulants, hormonal therapies and medications that increase the effectiveness and penetration of antibiotics into the various forms of the Borrelia spirochete. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients.
Is there a link to Lyme disease and a more commonly known chronic condition known as Chronic Fatigue Syndrome?
In addition to those suffering from Lyme disease, the new test has also proved to be important to those suffering with chronic fatigue syndrome (CFS), a complex disease involving multi-system disturbances and abnormalities, including substantial problems with short-term memory or concentration, sleep dysfunction, and feeling worse with exercise or stress – many of the same symptoms mentioned earlier. The new test shows that a significant number of patients diagnosed with CFS actually have chronic Lyme disease.
In the past, while we had good evidence that chronic Lyme disease was a significant cause of CFS, we could not prove it. Until the new test was developed, there was no definitive way to detect the presence of chronic Lyme disease, so there was a significant controversy regarding its very existence and therefore, its relation to CFS. But that’s all changed. We are finding that approximately 30% of those with the most severe symptoms of CFS, especially those with significant neurological symptoms, are actually suffering from chronic Lyme disease.
Is there an organization locally that people can turn to for support?
ULDA (Utah Lyme Disease Alliance) is a local support group that conducts monthly meetings for patients and family of patients with Lyme. Meeting information can be found at http://www.utahlyme.org.
If you want more information on how Holtorf Medical Group can help you with diagnosing and treating Lyme disease please visit HMGUtah.com or call (801)821-5384 to talk to a patient representative.