Ticks are ever present during North Carolina summers, and they bring with them the risk of tick-borne illnesses. Many of us have known since childhood to be on alert for symptoms of Rocky Mountain spotted fever, but fewer of us in this state have been aware that Lyme disease is a real threat.
For years, public health officials assumed that Lyme disease is a New England and mid-western illness that those of us outside the Northeast don't have to worry about. However, statistics show that the risk has started to move South and, perhaps, has been here for a while. Lyme disease is the most commonly reported vector borne illness in the United States: in 2012, it was the 7th most common Nationally Notifiable disease.
A Centers for Disease Control and Prevention (CDC) map indicates reported cases of Lyme Disease throughout North Carolina in every year of the last decade. And, the North Carolina Public Health department reports that last year, there were 173 (39 confirmed and 134 probable) incidences of Lyme disease in our state. The number for the past five years combined is 601. Four North Carolina counties Guilford, Alleghany, Haywood, and Wake—are considered endemic for Lyme disease (this means a county has two or more diagnoses of Lyme disease originating from ticks within the county).
It's essential to note that these statistics only represent cases diagnosed by the strict CDC criteria. According to Dr. Scott Taylor, DVM, a veterinarian who acquired Lyme disease, the “CDC criteria was established for an epidemiological survey, which was designed to study the distribution of Lyme disease. The two-step method of the CDC uses a screening immunoassay (ELISA) for all patients followed by a more sensitive and specific Western Blot only if the screening test was positive.
Unfortunately, this approach was originally intended for surveillance of Lyme disease in potentially asymptomatic patients, not for diagnostic purposes in patients with symptoms that are potentially related to Lyme disease. This criteria was not intended to be used as a standard for the clinical diagnosis of Lyme disease; the CDC has clearly stated this. Unfortunately, (many) health officials and physicians continue to use these criteria for the clinical diagnosis of Lyme disease.” To reiterate, the CDC states clearly, that the diagnosis of Lyme disease is a clinical diagnosis. That means the physician decides whether the patient has Lyme after reviewing the patient’s history, symptoms, progression of illness and tick exposure record and physical exam.
And lab tests may be falsely negative for other reasons. Again Dr. Taylor explains “The causative agent, Borrelia burgdorferi, Bb, is a type of spirochete (, a snake like bacteria, similar to syphilis). When Bb was first discovered in 1982 it was thought that there was just one strain. Since then, (five subspecies and) about 100 U.S. and 300 worldwide strains of the bacterium have been discovered.” Lab tests only test for the original Bb. There are more strains of Bb in the Southeastern United States than thought before. So if you are infected with a different strain, your tests may be negative even though you do have Lyme.
The CDC reports that Lyme disease is the fastest growing vector borne, infectious disease in the United States. In August 2013, Paul Mead, M.D., M.P.H, chief of epidemiology and surveillance for CDC’s Lyme disease program announced that Lyme probably infects 300,000 people a year. Ten times more Americans than previously reported.
There are two organizations that have very different beliefs, experience and recommendations for evaluating and treating acute and later stages of Lyme disease. The Infectious Diseases Society of America, IDSA, represent infectious disease specialists across the country. The CDC endorses their recommendations concerning Lyme. They represent the conventional perspective.
The International Lyme and Associated Diseases Society, ILADS, represents physicians who have found the IDSA recommendations inadequate to guide diagnosis and treatment of patients for whom they care who are suffering from Lyme and associated diseases. Most integrative physicians are aligned with ILADS concepts.
Compare this to the recognition of HIV in this country. For many years physicians in the trenches attempted to treat HIV patients with little or no support from conventional physicians because the science wasn’t there yet. When the virus was finally identified, it still took years to discover the best drugs and practices for treating people. Bottom line, controversies exist whenever a new entity arises. Some of the differences between these two organizations will be discussed below.
Acute Lyme disease
Lyme disease is a bacterial infection carried and delivered by ticks. IDSA and the CDC recognize Ixodes scapularis and I. pacificus, the deer tick or black legged tick, as the sole vectors for Lyme. ILADS identifies many other vectors than this single tick.
Lyme disease may cause no symptoms after a tick bite in very healthy people with a strong immune system.
Or more commonly patients present with concerns about a tick bite, but without the tick. They have no symptoms except a bite mark. IDSA recommends that individuals be treated with a single dose of prophylactic antibiotics if strict criteria are met. ILADS does not endorse this since they have found that Bb can spread to the brain within 12 hours. ILADS recommends treatment with antibiotics in this case for 28 days.
Patients can also present with a bulls-eye rash, erythema migrans, or a solid red rash at the site of the tick bite. Unfortunately, some studies report that it occurs in up to 80% of infected people. Other studies report that it is much less common, occurring in only 20% of those infected. Many physicians believe that getting this rash is actually a good thing. The patient’s immune system is healthy enough produce this rash which is an automatic reportable case and will get the patient antibiotics. Unfortunately 50% of people who develop Lyme disease do not remember a tick bite. IDSA suggests treating localized disease without generalized symptoms 10-21 days. ILADS suggests for 4-6 weeks.
Or Lyme can present as an off season flu-like illness during the summer or early fall. Generalized symptoms like fever, additional rashes, lymphadenopathy and fatigue suggest spread of Bb which is more serious than just the localized infection. ISDA recommends 14-21 days of antibiotic treatment. ILADS treats for 1-6 months.
Blood tests frequently are not positive early in the disease UNLESS one has had Lyme before. The CDC wisely states that the diagnosis and treatment should be based on clinical judgment not blood tests. Treatment should be based on exposure history: Is Lyme endemic in the county that the person was in? Is it spring, summer or fall when Lyme is most active? Did they have an actual tick bite? What are their symptoms and physical findings? Frequently it’s safer to treat than to deny therapy. Potential complications of untreated infections just are not worth the risk.
IDSA and ILADS both agree on treating patients based on clinical presentation. But the specific treatments diverge considerably. IDSA recommends shorter courses of therapy, 10 -14 days, maybe up to 21 days, and lower doses than ILADS. Drugs of choice for both include amoxicillin, doxycycline in older children, and cefuroxime, an injectable. If initial presentation includes neurological Lyme or heart block, both groups recommend much longer, more intense courses of therapy.
Lyme after the acute phase
Most people who are treated with adequate antibiotics early enough in the acute stages of Lyme disease recover completely. However, in people who delay treatment or have vulnerable immune systems, the disease may enter a delayed not localized phase during the first year. If patients initially get better with treatment then have a recurrence of symptoms, they need additional treatment. Both IDSA and ILADS recommend antibiotic therapy for Lyme at this stage. ILADS for much longer than IDSA.
Another area where IDSA and ILADS diverge strongly has to do with the treatment of symptoms. IDSA recommends the use of corticosteroids for chronic joint pain. ILADS avoids all steroids since they suppress the immune system even further. Many integrative physicians also avoid higher doses of Vitamin D in Lyme patients since this will also suppress the immune system and inadvertently give Lyme the upper hand.
Patients with Lyme disease often experience misdiagnosis or delayed diagnosis. Some people who contract the illness don't recover completely; they develop mystifying symptoms and spend years bouncing from specialist to specialist. Sometimes they're diagnosed and treated for diseases they don't have, like multiple sclerosis, Lou Gehrig's disease or Alzheimer's disease; other times they're dismissed as hypochondriacs. All the while, they suffer from debilitating symptoms such as:
- Joint pain and swelling (known as Lyme arthritis)
- Muscle pain
- Eye inflammation
- Brain fog
- Behavioral changes or psychiatric symptoms
- Neurological symptoms: headache, MS, ALS and Bell’s palsy
- Liver inflammation
- Heart block or palpitations
Symptoms of Lyme after one year
Individuals who continue to have symptoms for over one year are diagnosed with , or PTLDS, by IDSA or chronic Lyme by ILADS doctors. ILADS believes chronic Lyme is due to ongoing infection with Lyme and usually other coinfections which cause increasingly severe immune dysregulation and chronic debilitating illness. ILADS physicians treat this aggressively with long term antibiotics and many other modalities.
IDSA does not recommend additional antibiotics for PTLDS. Furthermore they state in their 2006 Clinical Practice Guidelines “There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (over 6 months) subjective symptoms after recommended treatment regimens for Lyme disease.”
They go on to state that certain therapeutic modalities are not recommended. “Because of a lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential for harm to the patient, the following are not recommended for treatment of patients with any manifestation of Lyme disease: first-generation cephalosporins, fluoroquinolones, carbapenems, vancomycin, metronidazole, tinidazole, amantadine, ketolides, isoniazid, trimethoprim-sulfamethoxazole, fluconazole, benzathine penicillin G, combinations of antimicrobials, pulsed-dosing (i.e., dosing on some days but not others), long-term antibiotic therapy, anti-Bartonella therapies, hyperbaric oxygen, ozone, fever therapy, intravenous immunoglobulin, cholestyramine, intravenous hydrogen peroxide, specific nutritional supplements, and others.
Since many integrative physicians trained by ILADS use some or all of these modalities treating chronic Lyme, there is plenty of room for debate.
ILADS teaches that once the microbes have burrowed deeply into the body's tissues, a two- to four-week course of antibiotics is insufficient for treating the infection. ILADS also teaches that Bb is a pleomorphic germ which means that it can change shape if the environment is hostile. Bb shifts from being the spirochete to being a cyst form. Antibiotics that were effective against the spirochete early on may no longer kill the germ. Other antimicrobials work better on the cyst form.
Those treated soon after the onset of the illness have the greatest chance of recovering completely. For those who don't achieve a successful resolution of the disease with initial treatments, get a second opinion. If the second opinion rules out Lyme, see an integrative physician for a third opinion. An integrative treatment plan may be the best option for regaining health.
Integrative doctors take a broader approach to treating Lyme. Treatment involves a longer course of antibiotics to completely clear offending organisms from the body. Patients are also treated with supplementation, detoxification and digestive support to assist the body in rebuilding a strong immune function. Not uncommonly other tick borne illnesses, parasites or fungal infections complicate recovery in patients with chronic Lyme. Integrative doctors customize chronic Lyme treatments to meet the unique health concerns of each individual patient.
Some physicians who treat patients beyond the ISDA’s guidelines have lost their license to practice medicine. ILADS guidelines are not accepted in many parts of the country. Six states have passed laws protecting physicians who treat persistent Lyme disease for more than 28 days with antibiotics. These states include California, Connecticut, Massachusetts, Minnesota, New Hampshire and Rhode Island.
Closer to home, in Virginia, a law passed in 2013 empowering patients to request additional testing if their initial testing was negative for Lyme Disease and they continued to have symptoms. However, this law does not protect physicians who treat patients with a diagnosis of Lyme for extended periods of time.
Growing Public Awareness of Chronic Lyme in North Carolina
In May of this year, North Carolina Gov. McCrory issued a proclamation for Lyme disease Awareness Month. The document's language acknowledges Lyme's complications and alludes to its potential for chronic progression. The following is an excerpt of the proclamation, which you can read in full at governor.state.nc.us.
- "Whereas ... Lyme disease may become more difficult to treat if therapy is delayed and untreated or inadequately treated Lyme disease can sometimes lead to death; and
- Whereas, Lyme disease can affect the brain, heart, joints, and other body organs, and mimics many other diseases; some patients do not develop the characteristic rash and symptoms may not appear for months to even years following initial infection; patients are often misdiagnosed with more familiar conditions, including rheumatoid arthritis, chronic fatigue, fibromyalgia, multiple sclerosis, amyotrophic lateral sclerosis, depression or psychiatric illness; and
- Whereas, the science surrounding Lyme disease is unclear and emerging, and testing may be inaccurate ... citizens and medical providers are encouraged to take all symptoms following tick bites seriously ...”
Testing for Lyme
If you suspect you have Lyme disease, there are tests that may help confirm the diagnosis. MAY is the critical word. If these tests are positive, they may help the doctor to establish a firm diagnosis of Lyme disease. If they are negative it does not rule out Lyme. The two tier test was designed for surveillance but is routinely used to assist in diagnosis.
The first tier and most common test is the enzyme-linked immunosorbent assay (ELISA). It will be negative early on in a first time Lyme infection. The body has not made antibodies yet. There are false positives. Because of this, the Western blot test is also performed to confirm the ELISA results. After early and appropriate antibiotic therapy this test may never turn positive. So the patient may have had Lyme and received appropriate care but doesn’t count as a reportable case.
The Western blot IgM and IgG may also be negative early on unless the patient has had Lyme in the past. These are expanded panels of antibodies. Some of these are very specific for Bb. Others are not as specific and may cross react with other spirochetes. For a case to be considered a reportable Lyme case to the CDC based only on lab tests, the Elisa and both Western blots must be positive. The rash Erythema migrans also qualifies the case as reportable in and of itself without any labs.
Unfortunately Lyme damages the immune system. Not uncommonly people with chronic Lyme never develop IgG antibodies. Patients can still make IgM antibodies but they never qualify as a reportable case based on CDC criteria. And some physicians use these negative tests, incorrectly, to deny treatment for Lyme.
The tests for acute Lyme are usually most reliable a few weeks after Lyme disease has taken hold and the body has started creating antibodies. So get initial treatment based on clinical criteria. Test initially to see if you have had Lyme in the past. If the test is negative, get repeat testing 4-6 weeks later to hopefully show good antibody responses and become a reportable case.
If the illness has persisted into the chronic stage, a test like the polymerase chain reaction (PCR) test can help determine if there is a remaining infection in the joints or spinal fluid. It’s very specific for the DNA of the germ and if it’s positive, the person has active Lyme, period. If it’s negative, it doesn’t rule out Lyme. There is no test available that proves someone is cured of Lyme.
Remember: Prompt treatment of acute Lyme is the best way to prevent chronic Lyme disease. Once the illness reaches the chronic stage, it can take many months of treatment before it becomes manageable. Always have a rash and flu-like symptoms checked out—even if you don't remember getting bit by a tick.