Lyme Disease: The Misconceptions

Lyme disease is the number one vector-borne disease in the United States. It is a silent epidemic, and there are many misconceptions about this disease. Dr. Brooke and Dr. Ross respond to the most common misconceptions.

Misconception:
Many doctors believe Lyme disease is not an issue
in their geographic region.

Reality:

Lyme disease is becoming prevalent across all of the United States (and around the world) This includes the West Coast and Washington State. Ticks do cross geographic boundaries; for instance, they have been found on more than 40 species of migratory birds. Deer and the white-footed mouse are two animals (among others) that are a regular part of the tick life cycle. While deer carry the ticks, mice and other small mammals are carriers of the ticks as well as the infectious micro-organisms. Uninfected ticks acquire the microorganisms when they bite an infected animal. Next time they feed, which can be months later, they can then potentially pass the microorganisms on to the animal/person who is bit. Ultimately, ticks, pets and people all travel, creating a dynamic situation with potential for infection.

In the state of California, an analysis of Ixodes pacificus ticks has demonstrated that the ticks carry Borrelia burgdorferi, the organism that causes Lyme disease, in 42 counties, with a majority of these in the northern part of the state. Additionally the problematic tick species have been found in all counties except for two. There is no published information that the states of Washington and Oregon have done similar analysis for the presence of infected ticks.

In the last three years the CDC has reported between 20,000-25,000 new infections nationwide each year. Their reporting criteria is for surveillance only and significantly stricter than needed (as acknowledged by the CDC) to recognize and diagnose Lyme disease, and hence these numbers are a gross under-representation of the number of actual new annual infections. In contrast, the CDC has reported an average of 40,000 new HIV infections for each of these years – with much more “sensitive” (better) tests. We illustrate these numbers because chances are you are very familiar with the issues around HIV due to very good public awareness campaigns, familiarity with people infected, publicity about research and fund raising, etc. In one study the health ramifications of chronic, untreated/inadequately treated Lyme disease demonstrated that it is comparable for numerous parameters with late-stage diabetes and heart failure for decreasing quality of life and ability to function (study website: www.lymeproject.com; Principal Investigator: Daniel Cameron, MD, MPH). Yet, funding, research, public awareness, medical awareness and help for those infected with Lyme disease are far behind that available for HIV/AIDS, diabetes or heart failure.

Misconception:
When there is a known bite, some doctors still believe that Lyme disease cannot be diagnosed without the typical bulls-eye (erythema migrans) rash and positive lab results.

Reality:

Post exposure rashes are found in only 40-60 percent of cases, and as few as 10 percent of these rashes are classic erythema migrans (“bull's-eye”) which require no further verification for diagnosis or for adequate treatment to begin. In addition the testing is not “sensitive” enough to be used to screen, let alone rule out, Lyme disease. The CDC reporting criteria designates that there needs to be a positive Elisa followed by a positive Western blot. However, these tests, when done at most labs, do not include some of the most specific “bands” for detecting the organism. The reporting criteria is acknowledged by the CDC as being used for epidemiological purposes and not as a replacement for a clinical diagnosis (one based on symptoms and history).

Misconception:
A negative test result consistent with the two-tiered screening system set up by the CDC for official reporting of the disease means that a person does not have Lyme disease.

Reality:

Lyme disease is a clinical diagnosis. The CDC surveillance criterion which is based on positive lab results is for surveillance only. It was never set up to be used as diagnostic criteria, nor were they meant to define the entire scope of Lyme disease (the CDC clearly acknowledges this). A positive test can be used to very strongly support a clinical diagnosis; however a negative result cannot be used with accuracy to exclude the diagnosis of Lyme disease.

Laboratory tests at this point are not sensitive enough to be used adequately for screening, let alone ruling the disease out. ELISA tests are only 65 percent sensitive (in culture-proven Lyme cases) and by definition screening tests should be 95 percent sensitive. Western blot testing has a similar sensitivity. Since both of these tests look at antibodies, they are even less sensitive early in infection before adequate antibodies are being made, and then again late in infection when the immune system is subdued and the micro-organism uses stealthy mechanisms to evade detection by the immune system. PCR tests, which look for the genetic material of the micro-organism, have decent sensitivity if done on a biopsy of an actual skin lesion. However blood and plasma PCR has only been shown to be about 20 percent sensitive (they miss infections 80 percent of the time).

With patients having culture-positive Lyme disease, 20-30 percent remain seronegative on serial Western blot testing. Labs that are the most thorough in their testing include IGenex and Medical Diagnostic Laboratories (there may be others). IGenex also tests ticks for infectious micro-organisms, so it is worthwhile saving a tick once removed for this purpose.

Misconception:
Lyme disease is caused by a single micro-organism.

Reality:

Lyme disease may be caused by Borrelia species spirochetes alone; however more commonly there will be a combination of this organism with co-infecting micro-organisms that ticks also frequently carry. These include Bartonella, Babesia, Erlichia as some of the most common. Besides the co-infections, in chronic cases of Lyme disease with resulting immune and endocrine dysfunction there are commonly additional opportunistic infections or resurfacing of dormant infections that are able to prosper and can include any number of micro-organisms.

Misconception:
A person cannot have contracted Lyme disease
without a known tick exposure.

Reality:

Less than 50 percent of people diagnosed with Lyme disease recall having been bitten. Ticks in their nymphal and juvenile stages are smaller than a poppy seed or pin head and exposure is very easy to miss. University of California-Berkeley published research in 2004 in which researchers sat on logs throughout the state for five minutes at a time and in 30 percent of these instances there was tick exposure on close examination. Other risk factors include the prevalence of ticks and Lyme disease in the areas that a person visits as well as lives in, time spent outdoors, the presence of pets (which can carry ticks indoors), the prevalence of deer or mice and rodents in their area or other wildlife (including migratory birds), and the frequency of yardwork done professionally or recreationally.

After an infected tick bite, flu-like symptoms can appear right away or within a few weeks, or the infection can go dormant for months. They can even appear years later, depending on a person's immune function, general health and other stressors, infections or toxic exposures all of which contribute to “total body load.” We also now know that the spirochete has a cyst form that is very resistant to changes in temperature, oxygen, pH, and most antimicrobial drugs. These cysts are even hidden from the immune system. As such the cyst form can morph back into the spirochete form if favorable conditions occur later, and this is postulated to be the reason that some people have relapses of symptoms and the infection.

Misconception:
The main symptom of Lyme disease is red, swollen joints.

Reality:

Doctors often still think the classic sign of Lyme disease is inflamed, swollen joints, and although this classic joint involvement does occur in a small percentage of people, the larger majority who have joint involvement experience joint pain that comes and goes, wanders from one area of the body to another, includes pain in the muscles, tendons and ligaments around the joint. It very often does not include any redness or swelling.

Common symptoms that occur with initial infection include flu-like symptoms with fatigue, head-ache, muscle ache, possibly joints aching (not necessarily swollen). Lyme disease should be considered in the differential diagnosis of symptoms that present like MS, ALS, Parkinson disease like syndrome, Guillain-Barre like syndrome, cranial nerve disturbances, visual or sound hypersensitivity, seizure and other neurological conditions, cardiac (heart) abnormalities, as well as arthritis, Gulf War Syndrome, ADHD, hypochondriasis, fibromyalgia, CFIDS, somatization disorder, various psychological disorders and patients with various difficult-to-diagnose multi-system syndromes. This is not even an exhaustive list of conditions – symptoms of Lyme disease can imitate those of other health conditions too.

Misconception:
Only the deer tick, Ixodes scapularis, carries Lyme disease.

Reality:

At this point it is well documented that other species of tick in the same genus as well as other genii/species also carry these infectious micro-organisms. Additionally there is sufficient research to support that the Lyme spirochete does pass across the placenta from an infected mom to her baby. (The likelihood of this happening can be decreased with prophylactic antimicrobials that are compatible with pregnancy.) Borrelia burgdorferi has also been found in breast milk; however there is not a consensus regarding whether to recommend or discourage breast feeding by an infected mother at this time. It can also be isolated in male ejaculate, although there has not been follow up research demonstrating whether it can in fact be transmitted sexually. Clinically, doctors who treat many Lyme patients do see that there is a high occurrence of couples and of whole families being infected. This leads to many questions, theories and postulations as to why. Hopefully funding and much needed additional research will follow that will lead to more conclusive answers.

Misconception:
A tick needs to be attached for a minimum of 24 hours to have delivered infectious micro-organisms.

Reality:

Although laboratory studies have demonstrated that it does take a significant number of hours to eject these microorganisms from the tick gut contents into a host, newer research has demonstrated the presence of these micro-organisms in the salivary apparti (mouth parts) of ticks. So theoretically infection may occur even as soon as the initial bite when ticks secrete both anti-coagulant and anti-pain substances from their salivary apparati. This is backed up by substantial clinical evidence in which people have contracted Lyme disease after having been exposed to a tick for very limited time periods, well under those previously established as sufficient enough for exposure.

Misconception:
To remove an attached tick you should touch it with a burning match or something very hot, or grab it firmly with a tweezers and pull it out.

Reality:

By using heat or chemicals to try to get a tick to release its grasp or by grabbing it firmly with a tweezers on its body a person is likely to elicit regurgitation of gut contents, increasing the likelihood of infection. The proper way to remove a tick includes using narrow-nosed tweezers and grasping the tick around its mouth parts as close to the person’s skin as possible and very gently pulling away from the skin. Ticks can then be sent to IGenex for analysis for infectious micro-organisms.

Misconception:
Lyme disease can be cured with four weeks of antibiotics.

Reality:

According to The International Lyme and Associated Diseases Society, there has never in been one study that proves absolutely – even in the simplest way – that 30 days of antibiotic treatment cures Lyme disease, especially in chronic infections. However there is a plethora of documentation in the U.S. and European medical literature demonstrating histologically (in tissue) and in culture that short courses of antibiotic treatment fail to eliminate the Lyme spirochete.

Although there are still doctors who believe the Infectious Disease Society of America IDSA (not ILADS) recommended short course antibiotic regimen is adequate in all cases, this is not current with the most recent research and clinical evidence. Treatment, which often involves herbal or prescription antibiotics, can last from weeks to months to years, depending on whether it is a new or chronic infection. Improvement is usually slow in chronic cases. (A chronic infection has been present for more than one year.) An uncomplicated case of chronic Lyme disease requires an average of 6-12 months of high dose antibiotic therapy. The return of symptoms and evidence of the continued presence of Borrelia burgdorferi indicates the need for further treatment.

For treatment to be effective it must be multifaceted. If antimicrobials are used, usually a combination must be utilized to affect the various forms of Borrelia as well as those of the co-infecting micro-organisms. This also means that a physician must treat any other ongoing infections and various organ systems of the body that are involved to help support health and immune function and decrease total load to better enable the body to cope with the infection. This can’t be accomplished by relying on antimicrobials alone. This comprehensive whole body approach to treatment beyond relying on pharmaceuticals may include a whole range of botanicals, natural supplements, diet, detoxifying, homeopathy, physical medicine, pain management, specific organ and endocrine support, as well as other prescribed medications and other approaches as appropriate for each patient’s individual needs.

Misconception:
Taking antibiotics for more than a few months causes more harm than good.

Reality:

According to the International Lyme and Associated Diseases Society and research at Columbia University, the very real negative consequences of untreated chronic persistent infection far outweigh the potential consequences of long-term antibiotic therapy. Many patients with Lyme disease require treatment for one to four years or until the patient is symptom-free for two to three months. Relapses do occur and maintenance antibiotics may be required. There are no tests available to assure us.

Learn about the special qualifications of Dr. Marty Ross and Dr. Tara Brooke of The Healing Arts Partnership in dealing with Lyme disease.