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The Lyme Enigma
By Dylana Accolla, LAc Illustration by Vladimir Zimakof

Last summer Nigel (not his real name) sat in my office on a weekly basis and luridly described his Lyme woes. Nigel was bitten by a tick in 1990 that left him Lyme-positive with knee and cervical pain and tunnel vision four months later. Following a 41-week course of the antibiotic amoxicillin, his symptoms resolved. Yet here he was, 12 years later, with chronic knee pain. Nigel is convinced that the cartilage in his knees is being destroyed by a syphilis-like spirochetal infection that remains despite drug therapy. He imagines the little devils homing into his tendons or synovial fluid and devouring his joints. He warns me that ticks live all year and that the nymphs can be as small as pin heads.

Linus (not his real name) has never had a tick bite that he can remember nor a positive Lyme test. But 10 years ago he suddenly came down with a recurring case of flu-like symptoms with fevers, chills, and intense sweats several times a day, a cycle he broke through hot tub therapy. It wasn’t malaria. He visited a tick-infested island last summer and again doesn’t remember a tick bite. Last December he started coming down with “strange viruses” causing a number of odd symptoms: a red rash on his leg, psoriasis, difficulty breathing, peripheral neuropathies, and paresthesias [numbness and tingling] in both legs.

Lyme or not Lyme?
The question haunts hundreds, perhaps thousands of mid-Hudson Valley residents suffering from persistent and, at times, debilitating joint and muscle aches, stiffness, twitches, or swelling. There is usually fatigue, malaise, and/or dizziness. Some people notice light sensitivity and eye problems, forgetfulness, or difficulty with speech or writing. Yet others have the above symptoms with disturbed sleeping patterns.

You probably know people like this. They travel far and wide—from a local general practitioner to specialists in Kingston, Hyde Park, Albany, Westchester, or Manhattan—looking for answers to what ails them. Many have exhausted Western medicine and have turned to the complementary therapists who dot the Valley. Relief comes in drips and drabs. Some people recall a tick bite; many do not. Most have taken antibiotics. They agonize over no definitive diagnosis. Is it Lyme? Chemical toxicity? Autoimmune dysfunction? Multiple sclerosis? Alzheimer’s? Old age?

A growing epidemic
Lyme disease (LD) was first recognized in 1975 by Dr. Allen Steere, in Lyme, Connecticut. But Dr. Richard Horowitz, MD, director of the Hudson Valley Healing Arts Center, a center for integrative health in Hyde Park that treats Lyme and related tick-borne diseases, believes that Lyme disease has existed for a long time. “There was an outbreak of acrodermatitis [skin rash] in Europe in the late 1800s,” he says. “They didn’t call it Lyme, but acrodermatitis chronicum atrophicans [chronic, degenerative rash] is one of LD’s hallmark symptoms.”

Since 1982, when the agent of Lyme disease, Borrelia burgdorferi, was first isolated from the guts of Ixodid ticks, reports of Lyme disease have increased at alarming rates. Every year there are over 16,000 new cases diagnosed, with the Center for Disease Control (CDC) reporting 16,273 new cases in 1999. Still, says Horowitz, Lyme disease is seriously underreported. “Think of it this way,” he says. “In Dutchess County, approximately seventy percent of the ticks are infected with Lyme. Every two years adult female ticks lay approximately four thousand eggs each. You do the math. The infection rate is astronomical. Lyme disease is the number one spreading vector-borne infection in the United States, and the number of undiagnosed cases is probably ten times more.”

The trouble with Lyme
The trouble with Lyme is that it is notoriously difficult to diagnose. Horowitz, former assistant director of medicine at Vassar Brothers Hospital, is remarkably well qualified to speak on the subject. Currently vice president of the International Lyme and Associated Diseases Society (ILADS), Horowitz has spoken at the 12th International Lyme Disease Conference and presented at the 11th, 12th, and 13th. He will present at this year’s 16th International Lyme Disease Conference on the burden of heavy metals and LD. Horowitz said that 60 percent of his patient population has tested positive for heavy metals such as aluminum, arsenic, cadmium, lead, and mercury through two separate labs, which may significantly affect LD treatment and outcomes.

Only an estimated 50 percent of those bitten get the classic “bull’s eye” rash, erythema migrans. Some develop unusual rashes, some get a flu-like syndrome, and some get nothing out of the ordinary.

The most widely used diagnostic tool for Lyme involves a combination of two tests, the ELISA and the Western Blot, and is known as the “two-tiered approach.” The ELISA (enzyme-linked immunosorbent assay), often called the “Titer Test,” is a blood test that measures a person’s igm and igg antibodies in response to exposure to the Lyme bacteria. If you test positive for these antibodies, you will be given the Western Blot, which is much more sensitive and specific. With the Western Blot, the laboratory can visualize the exact antibodies you are making to the Lyme bacteria. There are five bands that determine exposure to the Lyme bacteria, explained Horowitz. “If you have any one of those bands, it means you have been exposed. Particularly if the 23, 31, 34, 39, and 93 bands are present on the Western Blot, presumptive evidence of a tick-borne disorder is made,” he continued. “People who have had a Lyme vaccine will have a false positive ELISA and a 31 on the Western Blot. But otherwise, if you have symptoms consistent with Lyme disease and any one of these bands, you have had or have Lyme disease.”

But Horowitz maintains that the ELISA/Western Blot test combination is not sensitive enough. The ELISA has less than a 50 percent sensitivity according to some estimates, while the International Lyme and Associated Diseases Society (ILADS) reports that two-tiered testing is missing up to 40 percent of positive diagnoses. Moreover, Horowitz emphasizes, LD is a clinical diagnosis. This means that unlike many diseases, Lyme cannot be diagnosed with a simple blood test or assay. Lyme guru Joseph Burrascano Jr., MD, an internist from East Hampton, New York, who has published guidelines on the diagnosis and treatment of Lyme, supports Horowitz’s approach completely, calling the two-tiered testing for Lyme “illogical for this illness.”

Looking More Closely
The search for a diagnosis should be exhaustive, Horowitz says: “Many doctors diagnose the condition but they never get to the root of the illness.” According to FDA recommendations, your doctor should review your entire clinical picture and rule out other possibilities before making a diagnosis. Says Horowitz, “I take a complete history, spending about an hour and a half with each patient on their initial visit to make sure I get all the information I need. I get a complete blood panel to help me rule out a list of several other possible disorders, such as vitamin deficiencies, thyroid deficiencies, electrolyte imbalances, autoimmune disorders, heavy metal toxicity, and encephalopathy. I do whatever tests I need to get a diagnosis.” Horowitz tries to get the “gestalt” of the symptom picture, paying particular attention to such symptoms as “fatigue, headaches, stiff neck, migratory arthralgias and paresthesias [numbness and tingling] that come and go, neuro-cognitive difficulties [word finding, memory, concentration], sleep disorders, and psychiatric disturbances such as depression and anxiety.”

And there is now a battery of other tests to support the Lyme diagnosis that have proven useful in some patients with clinical symptoms and clinical history consistent with Lyme disease, particularly those who consistently test negative with antibody tests for Lyme. The Polymerase Chain Reaction (PCR) test detects the presence of the DNA of the Lyme bacteria. Antigen capture is done on urine, cerebral spinal fluid, and synovial fluid. An unexplained rash might also undergo a biopsy and careful histology along with PCR testing. Immunofluorescence assay and PCR tests are used to detect other tick-borne infections, such as Human Monocyte Ehrlichiosis (HME), Human Granulocyte Ehrlichiosis (HGE), Bartonella and mycoplasma. Another test, fluorescent in situ hybridization (FISH), tests for Babesiosis, which has been implicated in the severity and persistence in LD.

But despite all these tests, your doctor might still not get definitive results. According to Horowitz, part of the problem is that testing labs vary to the point of unreliability and have a hard time reproducing their own results. (One study—Bakken et al., JAMA, 1992—showed that up to 21 percent of laboratories failed to identify positive serum samples and had great difficulty reproducing their own results.) Consequently, a Lyme candidate looking for a good doctor should stick with one who has researched labs and chosen carefully.

Another difficulty in the diagnostic process is that the synthesis of the Lyme disease antibody, igm, occurs infrequently in the body. In the late 1980s, Steere et al. showed that igm antibodies are not detectable for two to five weeks after the initial infection and they disappear within two to three months, occasionally reappearing after that. Therefore antibody tests may have to be taken repeatedly for anything to show up.

Trickster organism
The biology of Borrelia burgdorferi (Bb) itself presents serious challenges to the medical community in trying to prevent chronic infection. For example, Burrascano notes that the spirochete hides out in privileged sites in the body, such as macrophages, lymphocytes, endothelial cells, neurons, fibroblasts, and the anterior chamber of the eye. Sequestered in these cells, Bb evades the effects of certain antibiotics.

The failure to detect antibodies is also due, in part, to the way they travel in the body fluid. They are bound within circulating immune complexes that prevent them from being detected by antibody tests. The immune complex dissociation assay may reveal the bound Bb specific antibody, Horowitz pointed out in his presentation to the 12th International Conference on LD in 1999. This is one test that is generally not being performed.

Another way Bb hides is to surround itself in the host’s own proteins when it exits a lymphocyte, rendering the bacteria invisible to the host’s immune recognition system, to cause serum negativity.
The picture gets murkier when you add the fact that there are multiple strains of Bb, which vary in their antigen profile and antibiotic susceptibilities. To date, five subspecies of Borrelia burgdorferi, more than 100 strains in the United States, and 300 strains worldwide have been identified. According to Horowitz, most labs in the US only test for the strain B31, which is yet another important reason why most people test serum negative. This diversity is thought to contribute to Borrelia burgdorferi's antigenic variability and its various antibiotic resistances.

Moreover, Bb can exist in at least three distinct morphologic forms: cell wall, cystic, and intracellular. “Apparently Bb can shift among the three forms during the course of the infection and cause varying serologic responses over time, including seronegativity,” according to Burrascano. “This means that different drugs are needed to eliminate the bacteria in its various forms,” Horowitz added. Horowitz is widely respected in the medical community for his formulation of numerous—and effective—drug protocols for Lyme in its varying forms. “If a doctor treats Lyme with only amoxicillin, he’s missing the cystic and the intracellular forms,” said Horowitz. “He could also be missing co-infections. Approximately 50 percent of my patients suffer from co-infections,” describing yet another complication of Lyme disease—that it’s no longer just Lyme.

Other Tick-borne Infections
“A huge body of research and clinical experience has demonstrated the near universal phenomenon in Lyme patients of co-infection with multiple tick-borne pathogens,” notes Burrascano. Other diseases carried by the Ixodid tick include Babesiosis, Ehrlichiosis, Bartonellas, anaplasmas, mycoplasmas, and viruses. “Most doctors don’t test for co-infections around here,” commented Horowitz, as he warmed up to the subject of co-infection. Horowitz has made significant contributions to Lyme literature on the subject of Babesiosis, and he was the first physician to identify Babesia microti protozoans in upstate New York.

Babesiosis is an infection caused by the Babesia microti protozoan. It is transmitted by ticks and multiplies in red blood cells. The Babesiosis infection rate is greater than is commonly realized; perhaps half Horowitz’s cases of chronic Lyme disease include a Babesia co-infection, he estimated. What identifying signs and symptoms should one look for? “Malaria-like symptoms such as alternating fever and chills are the big giveaway in Babesiosis,” Horowitz said. Drenching night sweats, day sweats, headache, muscles aches, and fatigue are other symptoms to look for.

Ehrlichiosis may show up as a serious, acute infection with a headache, muscle aches, high fever, and looks essentially like a bad flu in summer. This is a serious problem for the elderly and the immuno-compromised. These symptoms, with a low white blood cell count, low platelet count, and a high liver function test, would lead me to suspect Erhlichiosis co-infection,” Horowitz said.

Bartonella henselae has also been identified in Ixodidae ticks. Horowitz said he suspects Bartonella in certain chronic, resistant cases with a new onset seizure disorder, eye problems, encephalopathy (foggy mind, clouded memory), swollen lymph nodes, and headache. Bartonella is difficult to diagnose as well, since an estimated 50 percent of patients have a negative titer. Horowitz recommends the PCR test for confirmation. “Since I started the antibiotic regimes for Bartonella, a certain percentage of people who were resisting treatment are getting somewhat better,” Horowitz said. “In one abstract being presented at the 16th International Lyme Conference, the average change in the self-reported scale was a twelve percent improvement in fatigue, joint pain, headache, paresthesias, memory and concentration problems, and sweats/chills. Twelve percent is a lot in this context,” Horowitz added. “They move up a notch in their overall health, which means a significant quality of life improvement.”

Better testing
“If you get the EM [erythema migrans] rash,” says Dr. Horowitz, “that is definite evidence of Lyme disease. Don’t wait for a blood test. The organism enters the blood system so quickly that you should seek treatment immediately.” Unfortunately, we can’t rely on the bull’s-eye rash to tell us if we’ve contracted Lyme. And with the epidemic status of the disease and the many factors contributing to the prevalence of misdiagnosis and complication, it’s time we demand more careful and comprehensive testing.

Next month’s Whole Living installment will focus on the treatment of Lyme disease. For questions and comments, please contact Dylana Accolla at dylana@mindspring.com.

For more information about Lyme disease

The American Lyme Disease Foundation: www.aldf.com
International Lyme and Associated Diseases: www.ilads.org
Other Web sites: www.lymeinfo.net

On the radio
Syndicated radio show host Glenn Brooks will feature a three-part series on Lyme disease prevention and treatment on June 12, 19, and 26 from 8 to 10PM on WQQQ, 103.3 FM. The show will feature his wife’s first-person account of dealing with Lyme disease, along with discussions with guest healers and practitioners who deal with Lyme disease and prevention.

If you’ve been bitten by a tick
If you have been bitten by a tick, remove it carefully with fine-tipped tweezers and cleanse the area with antiseptic. If the tick is removed quickly enough, the chances for infection are extremely small. After 4 to 6 hours, however, the tick starts burrowing into the skin, and it becomes very difficult to remove without rupturing the tick and coming into contact with the Bb bacteria if it is present. (The Centers for Disease Control estimates that infection is unlikely to occur before 36 hours of tick attachment.) Therefore, daily checks and prompt removal of ticks are recommended. If you have been infected, Dr. Horowitz would order a three-week course of antibiotics. Caught this early, co-infections are also rare.