Lyme Disease Symptoms, Causes, & Diagnosis | Goop

Understanding Lyme Disease

Lyme disease is a bacterial infection that results when a tick infected with Borrelia burgdorferi—or a related species—bites a person and remains attached long enough to transmit the bacteria. If not treated with an antibiotic, symptoms increase in severity, eventually affecting the nervous system and the heart.

Even though Lyme disease is the most common tick-borne infectious disease in the US, we have a long way to go to figure out how to prevent it and how to deal with its long-term consequences. We don’t know why a chronic condition persists in some people despite treatment. Patient activists have contributed greatly to the current understanding of Lyme disease: They have lobbied, protested, written, and funded research, pushing the medical establishment to recognize the full extent of post-treatment Lyme disease syndrome (PTLDS). They’ve also pushed insurance companies to pay for extended treatments and have supported research on better diagnostic tests and treatments.

Primary Symptoms of Lyme Disease

Stage 1: In early or stage 1 Lyme disease, there may or may not be a rash at the site of the tick bite. The rash may or may not be a bull’s-eye shape. Additional symptoms that may occur in the first thirty days after a bite include fever, headache, fatigue, muscle and joint aches, and other flulike symptoms. (If you have diarrhea or upper respiratory symptoms, such as a stuffy nose, this points toward an infection other than Lyme.)

Stage 2: Days to months after a tick bite, if the infection isn’t treated, it can spread through the body, causing skin rashes in multiple places and symptoms including muscle and joint pain, mood and sleep changes, memory problems, and heart palpitations. This stage is called early disseminated or stage 2 Lyme disease. At this stage, the bacteria can go to and damage many places in the body. Headache, a stiff neck, nausea, vomiting, light sensitivity, or fever could indicate meningitis, which is an inflammation of the membranes covering the brain. Inflammation of nerves can cause weakness and drooping on one or both sides of the face, numbness, tingling, and sharp, burning pains. Lyme can affect the heart in a serious way, causing shortness of breath, palpitations, and chest pain.

Stage 3: Your immune system may be able to fight off Lyme disease completely even without antibiotics. Alternatively, Lyme may hide from the immune system, and months later, it can return and progress further into stage 3, late Lyme disease. There may be severe swelling and pain in large joints that can come and go or be constant. Nerves and the brain can be affected as in earlier stages. Symptoms may include irritability, depression, poor memory, slowness of thinking, and difficulty retrieving words. With symptoms of Lyme being so diverse and poorly understood, many people rightly wonder if their particular spectrum of medical issues is due to undiagnosed or incompletely treated Lyme (Centers for Disease Control and Prevention [CDC], 2019f).

Post-treatment Lyme disease syndrome or chronic Lyme disease: When muscle aches and pains and other symptoms persist after antibiotic treatment, it is referred to as post-treatment Lyme disease syndrome or chronic Lyme disease. In the past, persistent symptoms were typically dismissed by the medical establishment, but it is now recognized that 5 to 20 percent of patients do have chronic and significant symptoms and that in some cases the fatigue and physical impairment are comparable to that experienced by patients with multiple sclerosis and congestive heart failure, respectively (CDC, 2019g; Fallon & Sotsky, 2018; Stone, Tourand, & Brissette, 2017).

Causes of Lyme Disease and Related Health Concerns

Lyme disease is caused by infection from the bacterium Borrelia burgdorferi and other Borrelia species. You may hear Lyme bacteria described as spirochetes, which tells you that they are spiral-shaped. Borrelia bacteria live in mice and black-legged deer ticks (Ixodes scapularis or Ixodes pacificus). Borrelia bacteria are spread to humans when a tick bites and remains attached long enough to transmit the bacteria. Of course, not all Ixodes ticks carry borrelia bacteria. For example, in the Lyme-endemic area of Block Island, Rhode Island, 23 percent of Ixodes ticks were B. burgdorferi carriers (Burke et al., 2005). To make the situation more complex, ticks can also harbor other disease-causing bacteria and viruses (CDC, 2019j).

How Lyme Disease Is Diagnosed

One thing that makes Lyme disease so frustrating is that its diagnosis is not simple. You may be asked if you saw a tick, and if not, your concerns may be dismissed. On the other hand, if you saw a tick and removed it right away, your concerns may also be dismissed because many experts believe the tick has to remain attached for at least thirty-six hours to transmit the bacteria. But if a tick has already partially fed elsewhere, it may be able to infect you in less than thirty-six hours (Eisen, 2018). Be aware that there are other tick-borne diseases, and some can be transmitted in as little as fifteen minutes, as discussed in the conventional treatments section of this article.

The Bull’s-Eye Rash

If Lyme infection always resulted in a perfect bull’s-eye rash (the erythema migrans rash) and other conditions never caused a similar rash, diagnosis would be easier—but this isn’t the case. The CDC shows some useful photos of Lyme and other rashes for reference. Similar-looking rashes may be caused by insect bites, brown recluse spider bites, ringworm, bacterial cellulitis, hives, contact dermatitis, herpes simplex, and Southern tick-associated rash illness (STARI). STARI also occurs following a tick bite, but the infectious organism is not known (CDC, 2018a, 2019a).

Antibody and Western Blot Tests

Diagnosis typically includes testing for antibodies your body has made in response to Lyme bacteria. If antibiotic treatment is started early, the body may never develop antibodies. Somewhere between a few days and six weeks after a tick bite, blood tests called ELISA, EIA, and IFA can pick up antibodies: The IgM type of antibody is made first and then the IgG type. Antibodies can stick around for months or years, though, so they don’t tell you much about when you were infected or whether you are still infected. And unfortunately, the antibodies won’t protect you if you get another bite from a borrelia-carrying tick in the future (CDC, 2019i).

Antibody tests are not infallible, and they may come up with both false positive and false negative results. If an antibody test result is positive, standard practice is to do a Western blot or immunoblot test to rule out a false positive result and be more certain that borrelia bacteria are present. The antibody test followed by the Western blot is called a standard two-tiered test (STTT) (CDC, 2019e; Fallon & Sotsky, 2018).

The bigger problem is that the antibody tests frequently give negative results in people who are infected with borrelia, which would be called a false negative. According to the CDC, even weeks after a tick bite (stage 1), antibody tests will pick up only around 40 percent of cases. Even after months and progression to stage 2 disease with heart and nerve symptoms, only around 65 percent may be detected. It isn’t until stage 3, with arthritis, that most cases are detected with antibody tests (CDC, 2017).

There appear to be two ways to get better results by stage 2 that are not yet standard practice. One is to do two EIA tests, and the other is to use a test called VlsE or C6. Based on research in children with clinical symptoms of Lyme disease, researchers have suggested that when the STTT is negative but children have Lyme symptoms, additional tests should be carried out (Maulden et al., 2019).

IGeneX is a company that specializes in testing for Lyme and other tick-borne diseases, such as babesiosis and relapsing fever. It has developed an immunoblot test panel to pick up not only the most common Lyme-causing bacterium in the US, B. burgdorferi, but also all of the species that cause Lyme around the world (Liu et al., 2018). In addition to B. burgdorferi, a bacterium called B. mayonii appears to cause Lyme in the Midwest (CDC, 2019b). Lyme can manifest somewhat differently in Europe and Asia, where it’s primarily caused by the species B. garinii and B. afzelli, instead of B. burgdorferi. Infections from these different species of bacteria may present with different symptoms, and some species are more easily detected by existing tests than others.

To better detect Lyme very early after a tick bite, IGeneX has developed the IgX spot test that picks up white blood cells reacting to the infection. The company also recommends using PCR to detect DNA from all of these bacteria. (This is described nicely on the website Living with Lyme in an interview with the president of IGeneX, Jyotsna Shah, PhD.)

DNA and Culture Tests

Although antibody tests are flawed and it is tempting to use additional diagnostic tests such as PCR or culture tests, these tests have not been validated, and they can give incorrect or misleading results. PCR (polymerase chain reaction) is a very sensitive way to detect DNA; however, in early stages of infection, PCR tests for B. burgdorferi DNA on skin samples detect only around 60 percent of infections. PCR tests on blood samples are very insensitive. In late-stage infection, PCR testing of synovial fluid and cerebrospinal fluid is more useful, and it can accurately identify Lyme cases (CDC, 2017). If symptoms suggest infection of the central nervous system, then a spinal tap should be done and both DNA and antibodies should be measured and compared to levels in the blood drawn on the same day (Fallon & Sotsky, 2018). Scientists are developing different kinds of PCR tests that may be more accurate, like T2 magnetic resonance (Snyder et al., 2017).

Culture tests are not a great option—on skin and blood samples, they detect only about half of early-stage Lyme infections and no late-stage infections (CDC, 2017).

Measuring Brain Fog

Significant cognitive impairment is known to occur in Lyme disease, including problems with memory, finding words, fine motor control, and mental processing speed. Comprehensive testing by a professional can take hours and is expensive, but it can help you identify symptoms and determine whether they are responding to treatment. Shorter neurocognitive tests are available online, but they won’t be as complete or informative as a professional evaluation (Columbia University Lyme and Tick-Borne Diseases Research Center, 2018).

Ruling Out Other Diseases

The varied symptoms of Lyme disease and PTLDS may wax and wane. Sharp pains, joint pains, muscle aches, chest discomfort, abnormal heart rhythm, fatigue, malaise, recurrent rashes, memory lapses, difficulty concentrating, and other symptoms may come and go. Before diagnosing PTLDS, your doctor will want to rule out other diseases that could have similar symptoms, including fibromyalgia, chronic fatigue syndrome, lupus, and other tick-borne infections (see the conventional treatments section) (Fallon & Sotsky, 2018).

Diet and Supplements for Lyme Disease

There is no evidence that specific nutritional strategies are helpful in Lyme disease, but it would seem wise to support the immune system as much as possible to help the body fight the infection. Not every tick bite results in a Lyme infection. You might have immunity to tick saliva from previous exposure, and your immune cells may be able to mount a response on the spot that keeps the tick from being able to transmit bacteria. Unfortunately, ticks have evolved devious mechanisms to suppress immune responses in human skin so that they can feed unhindered (Kotál et al., 2015).

Lifestyle Support for Lyme Disease

Lyme disease can become a chronic condition that seriously impacts the lives of patients, family members, and caregivers. We do not yet understand the causes of PTLDS, and treatment options are limited. Patients have been integral in forming networks to provide education, resources, and support.

Support Groups for Lyme Disease

The Global Lyme Alliance is a 501(c)(3) foundation that supports research and education on Lyme disease. It provides a variety of resources to support patients, family members, and caregivers affected by Lyme disease. Its Lyme Symptom Tracker app helps Lyme disease patients track their symptoms and share their data, especially with their physician.

The Global Lyme Alliance’s peer mentor program connects those affected by Lyme disease with others who have dealt with the same kinds of challenges in order to provide emotional support and to share strategies and information. You can search for a support group in your vicinity using the Global Lyme Alliance’s database. LymeDisease.org also provides information about support groups in your area, as does the Lyme Disease Network.

The Lyme Disease Association has provided patient support for twenty-nine years. It funds research and education on Lyme disease and provides referrals to experienced doctors.

Exercise

Symptoms of PTLDS can include severe fatigue, muscle pain, and inability to recover from exercise. A very small clinical trial evaluated whether low-intensity resistance training could be tolerated in people with persistent symptoms. The training regimen was one set of five exercises three times a week for four weeks. Patients reported feeling more energetic and healthier at the completion of the study. There was no control group, but this was considered evidence that larger, controlled trials would be feasible and could be useful to develop exercise guidelines for this chronic condition (D’Adamo, McMillin, Chen, Lucas, & Berman, 2015).

The Swiss Society for Infectious Diseases and the Swiss Society for Neurology published guidelines for the treatment of persistent Lyme disease that recommend low-impact aerobic exercise (Nemeth et al., 2016).

Preventing Lyme Disease

In the absence of a vaccine, strategies to prevent Lyme disease focus on avoiding ticks, protecting skin with clothing and repellents, and checking for and removing ticks after possible exposure.

Tick Awareness

Avoiding tick bites is important whether or not you have been previously infected with borrelia. The presence of antibodies to Lyme-causing bacteria is not protective against subsequent infections, and repeated infections have been documented (Nadelman & Wormser, 2007). While there may be more Lyme disease on the east and west coasts of the US, Lyme has been diagnosed in all fifty states. Ixodes ticks feed on deer and increases in deer populations are thought to be contributing to increases in Lyme disease. Ticks are found in tall grasses and low-growing plants, and even under leaves on the ground; only extreme heat or cold deters them.

Is there any way to know if you are planning a picnic in a hotbed of tick activity? If you’ve ever wandered into a large family of ticks and spent hours picking them off you and your pets, you know that they are not randomly and uniformly spread out in nature. We have Waze to see where traffic accidents are happening, and now there is a tick-spotting app. Thirteen-year-old Olivia Goodreau founded the LivLyme Foundation and created an app called TickTracker.

Protecting Yourself From Ticks

There are a number of evidence-based ways to ward off ticks:

1. • Tuck pants into socks.

2. • Use tick repellents on skin, socks, and gear.

3. • BioUD is a tick repellent recommended by the CDC that contains 2-undecanone from wild tomato essential oil. In one study BioUD worked as well as DEET in repelling ticks, while permethrin treatment was not as effective. Volunteers walked around a field for fifteen minutes with socks treated with one of these or with nothing and then counted ticks (Bissinger et al., 2011).

4. • Mixed essential oils are also recommended by the CDC—rosemary, lemongrass, cedar, peppermint, thyme, and geraniol—for use on skin and lawns.

5. • Other repellents listed by the CDC include DEET, picaridin, IR3535, oil of lemon eucalyptus (OLE), and para-menthane-diol (PMD).

6. • The CDC also recommends spraying clothing with permethrin or purchasing permethrin-embedded gear (CDC, 2018b).

Check for Ticks

After being outside, check the usual places ticks hide out (under arms, groin, neck, scalp), have someone check your back, and take a thorough shower. Remember that Lyme ticks are tiny—the size of a sesame seed. Wash your clothes and dry them at a high heat. In one study it took an hour at high heat in a dryer to kill ticks that were hiding out in clothing. Washing clothes in hot water doesn’t appear to be sufficient, so don’t wear your favorite cashmere to a picnic (Carroll, 2003).

Check your pets, too. Dogs and cats can bring ticks into the home, and they can get Lyme disease. There is no evidence that the infection can be passed from pets to humans (CDC, 2019c).

What To Do If You Find A Tick

If you find a tick, use fine tweezers, grasp it close to the skin, try not to squeeze the tick body—which would help inject its contents into its victim—and pull straight out. Twisting the tick while removing is not recommended. Clean the skin and your hands with soap and water or rubbing alcohol (CDC, 2019d).

You can have a tick tested for pathogens at TickCheck or TickEncounter or other labs. The Bay Area Lyme Foundation offers advice on when, how, and where to have a tick tested. Even if it is not known whether the tick carries any pathogens, if it is an Ixodes tick and was attached for long enough to transmit pathogens (thirty-six hours), preventative treatment with antibiotics may be warranted, so call your doctor. There are varying opinions as to what that treatment should consist of, from a single dose of doxycycline to twenty days of doxycycline (Cameron, Johnson, & Maloney, n.d.; Wormser et al., 2006).

Conventional Treatment Options for Lyme Disease

If you were bitten by a tick and you have either a rash or flulike symptoms, you will likely be prescribed antibiotics, which are usually effective in treating the infection. On the other hand, there is not yet a clear understanding of or treatment for PTLDS. It is not generally accepted that antibiotics are helpful in PTLDS.

Antibiotic Treatment

Antibiotics are used to treat B. burgdorferi, B. mayonii, and some (but not all) of the other tick-borne pathogens discussed below. The Infectious Diseases Society of America provides evidence-based treatment guidelines for a probable tick bite, a laboratory diagnosis of Lyme disease, and everything in between. For someone with the characteristic Lyme rash, the 2020 clinical practice recommendation is for a ten-day course of doxycycline, a fourteen-day course of amoxicillin or cefuroxime, or azithromycin for five to ten days.

The International Lyme and Associated Diseases Society (ILADS) has published guidelines that are less conservative, recommending four to six weeks of doxycycline, amoxicillin, or cefuroxime or a minimum of twenty-one days of azithromycin, and extending or re-treating if necessary. When patients have more-advanced disease and they’ve had arthritis for a longer period of time, it’s been reported that longer antibiotic treatment can be successful (Chason, Monaghan, Wang, Cheng, & DeBiasi, 2018).

Even after antibiotic treatment, in a disputed percentage of cases, symptoms may not improve or there may be a recurrence (Lantos, 2011). If a patient still feels sick after their first round of antibiotics, why not routinely extend the treatment for a couple of months or try a different antibiotic? On the one hand, some practitioners have reported that successful treatment may require up to three separate courses of therapy. On the other hand, several controlled studies have demonstrated minimal health benefits and some serious side effects of long-term retreatment with antibiotics, both intravenous and oral (NIAID, 2018a). It seems clear that long-term treatment with antibiotics does not work for most people and is not a magic bullet for Lyme-associated illnesses. Medical doctors who provide treatments that are not standard practice, such as long-term antibiotic treatment without evidence of infection, have been investigated by state medical boards and could lose their licenses (Fallon & Sotsky, 2018). Doctors not only run the risk of underdiagnosis and undertreatment; they also run the risk of overdiagnosis and overtreatment. Aggressive treatment for chronic Lyme disease is associated with adverse effects, including intestinal C. difficile infections (Marzec et al., 2017).

What might cause the persistence of symptoms after antibiotic treatment? One possibility is that the initial infection caused an immune disorder, chronic inflammation, or autoimmunity. Another possibility is that because ticks can carry multiple pathogens, the person was infected not only with borrelia, but also with another bacteria or virus that was resistant to the antibiotic. There are still unanswered questions and controversy around what causes chronic symptoms. Scientists recently reported that even after extensive antibiotic treatment, they could detect live B. burgdorferi in blood and genital secretions (Middelveen et al., 2018), but this needs to be verified by other research. These scientists suggest that B. burgdorferi may be able to evade antibiotics by going inside body cells or by going into a tissue that antibiotics are excluded from. Bacteria could be growing in a layer of protective secretions (a biofilm) that keeps out antibiotics and immune cells (Di Domenico et al., 2018). It seems likely that all of the above possibilities could be true depending on the individual and the unique strain of infectious pathogen they are dealing with. None of these possibilities supports the use of extended antibiotic treatment.

It could be a mistake to focus only on Lyme disease, ignoring other possible reasons for continued illness. The Lyme Disease Diagnostic Center in New York State uses two weeks of oral doxycycline as standard treatment, upgrading to intravenous ceftriaxone for Lyme meningitis. The doctors there attribute ongoing symptoms, such as fever, encephalopathy, and myelitis, to coinfection with other tick-borne disease, particularly with Powassan virus (Wormser, McKenna, & Nowakowski, 2018).

Other Tick-Borne Infections

Ticks can carry multiple infectious bacteria and viruses, some of which will be killed by the standard antibiotic treatment for Lyme disease, and some of which will not. Recently in Suffolk County, New York, 57 percent of adult deer ticks were found to be carriers of B. burgdorferi, and 22 percent also carried strains of Babesia or Anaplasma (Sanchez-Vicente, Tagliafierro, Coleman, Benach, & Tokarz, 2019).

Anaplasmosis, ehrlichiosis, Rocky Mountain spotted fever, relapsing fever, tularemia, Q fever, and infection with Borrelia miyamotoi and Borrelia mayonii can be treated with antibiotics, such as doxycycline. Doxycycline will not kill the babesia parasite, which is endemic in the Northeast and northern Midwest. Babesia infects red blood cells, causing fever and chills and a host of symptoms overlapping with Lyme. Testing for and treatment of babesiosis may be crucial after a tick bite (CDC, 2019h). Ticks can also carry viruses, including the Powassan virus and the tick-borne encephalitis virus, and of course antibiotics are not effective against viruses (Fallon & Sotsky, 2018).

Was your tick attached to your skin for less than thirty-six hours? That might point to an infection with something other than B. burgdorferi. Anaplasma and B. miyamotoi can be transmitted within the first twenty-four hours of attachment, and the rare Powassan virus can be transferred from a tick to a human in just fifteen minutes (Ebel & Kramer, 2004; Eisen, 2018).

Multidrug Approach for PTLDS

Richard Horowitz, MD, and Phyllis Freeman, PhD, have reported the presence of multiple microorganisms including babesia, bartonella, mycoplasma, chlamydia, and brucella in patients at their specialized Lyme disease practice in Hyde Park, New York. They treated patients who had been clinically diagnosed with Lyme but had relapsed after treatment with what they call a “persister” regimen intended to disrupt entrenched or hidden forms of bacteria such as biofilms. The regimen consisted of six months of dapsone (diaminodiphenyl sulfone, DDS) plus multiple antibiotics. Patients also took at least three different probiotics (100 billion a day, including L. rhamnosis, L. acidophilus, L. paracasei, B. lactis strains BL-04 and Bi-07, and Saccharomyces boulardii).

Symptoms were judged as being less severe overall after the treatment. Horowitz and Freeman concluded that the treatment was helpful for fatigue, forgetfulness, aches and pains, and other symptoms. This was not a controlled study: It consisted of online surveys before and after treatment, which are prone to positively inflated results (Horowitz & Freeman, 2019, Horowitz & Freeman, 2020). While it is expected that practitioners will want to try new approaches and will report success with them, controlled trials are necessary to demonstrate safety and efficacy of this multidrug approach. DDS has serious side effects, and its dosing must be closely monitored.

Alternate Treatment Options for Lyme Disease

Alternative therapies for Lyme disease that we know very little about—either their possible benefits or their possible toxicities—include hyperbaric oxygen, ozone, ultraviolet light, photon therapy, cold lasers, saunas and steam rooms, Rife therapy (electromagnetic frequency treatments), magnets, heavy metal chelation, colloidal silver, supplements, urotherapy (urine ingestion), hormones, and bleach. Some of these therapies could be valuable—we just don’t know, although they don’t all have an obvious rationale behind them. What we do know about ozone, urine ingestion, ultraviolet light, hormones, and bleach is that they can be toxic. Be sure to work with an experienced, well-qualified practitioner, and be aware of possible side effects and risks. One study in mice and one clinical case hint that hyperbaric oxygen may be worth further investigation (Huang et al., 2014; Lantos et al., 2015).

Traditional Medicine, Herbalists, and Holisitic Healers to Support the Immune System

Holistic approaches often require dedication, guidance, and working closely with an experienced practitioner. Functional, holistic-minded practitioners (MDs, DOs, and NDs) may use herbs, nutrition, mindfulness training and meditation, and exercise to support the entire body and its ability to heal itself.

Traditional Chinese medicine degrees include LAc (licensed acupuncturist), OMD (doctor of Oriental medicine), or DipCH (NCCA) (diplomate of Chinese herbology from the National Commission for the Certification of Acupuncturists). Traditional Ayurvedic medicine from India is accredited in the United States by the American Association of Ayurvedic Professionals of North America and the National Ayurvedic Medical Association. There are several certifications that designate an herbalist. The American Herbalists Guild provides a listing of registered herbalists, whose certification is designated RH (AHG).

You can get some idea of the complexity of an herbal approach to Lyme from this article by David Winston, RH (AHG), who is a clinical herbalist, an educator, an author, and the founder of Herbalist & Alchemist, a manufacturer of herbal therapeutics. The article describes complex herbal remedies used in conjunction with antibiotics to help enhance the body’s immune response, decrease inflammation, and inhibit bacterial replication, as well as additional herbs for relief of specific Lyme symptoms. This is the kind of expertise you want, especially for treating serious illnesses such as Lyme disease: David Winston is a founding member of the American Herbalists Guild. He also serves in advisory roles for the American Botanical Council and for two of the most respected reference books on herbs, the Botanical Safety Handbook and Herbs of Commerce. (He does not do personal consultations.)

Low-Dose Immunotherapy

Low-dose immunotherapy (LDI) is based on the premise that many chronic symptoms are due to your body’s immune system overreacting to infections, not to the infection itself. In an ideal world, the immune system would gear up to fight infections only as much as needed. But in the real world, sometimes the immune system “overreacts” and causes undesirable symptoms, as with allergies and autoimmune diseases. Similar to allergy shots, LDI exposes you to substances that your immune system is overreacting to in an attempt to induce tolerance. As with homeopathy, the doses of bacteria or other allergens are extremely low. There are numerous practitioners offering LDI, however published evidence of its efficacy is lacking (American College for Advancement in Medicine, 2017).

Hyperthermia Therapy

At the Klinik St. Georg in Germany, hyperthermia treatment is used to treat patients with cancer and, more recently, with Lyme disease. The doctors there claim that bringing the body temperature from 98.6°F (37°C) to 106.88°F (41.6°C) causes tumors to shrink and is also effective in treating chronic Lyme (Klinik St. Georg, 2018). The theory is that fever can have a healing effect, which makes sense, given that our bodies respond to many illnesses with a fever. We tend to think of fevers as something dangerous to be suppressed, but they likely have some benefit. The doctors practicing at this clinic claim that borrelia dies at 41.6°C (106.88°F) and that the immune system is also activated at this temperature to help fight the infection. The clinic has not published research validating its approach, so patients are relying on the practitioners’ experience. Heat exhaustion, heat stroke, and brain and organ damage can occur at body temperatures over 104°F, so treatment must be carefully monitored and controlled.

Tryptophan for Mood Support

Tryptophan is an amino acid, and like most amino acids, it’s a building block for proteins. But tryptophan is also used to make the mood-regulating neurotransmitter serotonin. Tryptophan metabolism appears to be altered in Lyme disease, as in other infections (Pegalajar-Jurado et al., 2018), and it has been suggested that tryptophan supplements could be helpful in supporting serotonin production and mood in people with Lyme disease. Taking tryptophan supplements and supplements of other building blocks for neurotransmitters, such as tyrosine and choline, has been proposed for many conditions where the brain is not working optimally. It isn’t easy to eat enough supplementary amino acids to affect brain neurotransmitters significantly because neurons tightly regulate the amount of neurotransmitters they make. But there is some evidence that the activated form of tryptophan, 5-HTP, may help support mood regulation (Turner, Loftis, & Blackwell, 2006). There is not yet evidence of efficacy in treating Lyme disease.

The Rife Machine to Kill Microbes

Can a machine generate radio frequencies that kill borrelia? In the 1920s and ’30s Royal Raymond Rife invented a microscope that he claimed could see small viruses that cause disease, and he invented a machine that he claimed used radio waves to vibrate viruses at a “mortal oscillatory rate” in order to kill them (Dr. Rife Organization, 2017). However, no one has been able to reproduce or validate these reports, and there is no documented evidence for these claims (The ALSUntangled Group, 2014).

Bee Venom

Bee venom and a peptide it contains, melittin, have antimicrobial activity against B. burgdorferi, including antibiotic-resistant forms of the bacteria. B. burdorferi can transform from the spirochete form into an antibiotic-resistant “persister” form and into biofilm forms that are hypothesized to contribute to PTLDS. Relatively high concentrations of bee venom are required to kill the bacteria in test tubes, and it’s not clear whether these concentrations could be achieved in a person. However, bee venom has been used medicinally for thousands of years and could be therapeutic in other ways. Bee venom can be extracted without killing bees and administered by intracutaneous injection, or it can be delivered the old-fashioned way.

Although there are no published data confirming bee venom’s benefits, it’s being used by people with Lyme disease who inject themselves with venom or subject themselves to multiple bee stings. The Heal Hive recommends apitherapy as part of a multifaceted approach for healing from Lyme disease under the guidance of a medical doctor. Some people use a simpler approach, holding live bees to their skin (Klinghardt, 1990; Socarras, Theophilus, Torres, Gupta, & Sapi, 2017).

New and Promising Research on Lyme Disease

Current research seeks to address big holes in our understanding of Lyme disease and PTLDS: Why do symptoms persist? Are bacteria hiding in the body? Can we detect Lyme infection earlier to better use antibiotic treatment?

Shedding, Peptidoglycan, and Arthritis

Finally, a likely explanation for some of the persistent symptoms in PTLDS. Brandon Jutras, PhD, and colleagues have found that B. burgdorferi sheds something called a peptidoglycan, and they’ve shown that this molecule persists in the joints of people with Lyme arthritis. They also found evidence that the body mounts an immune response to this foreign molecule—they found antibodies and inflammatory molecules—and that this response is likely responsible for pain and inflammation. Peptidoglycan sticking around even after the bacteria are eradicated could explain the arthritis that persists in 10 percent of cases, even after treatment with antibiotics for two to three months and no evidence of live bacteria (Jutras et al., 2019). Now we need to discover a way to break down this peptidoglycan.

Detecting Lyme In Hiding

Since borrelia flourishes in ticks, why not see if ticks can be used to find live spirochetes hiding in people? A bizarre new way to look for infection, xenodiagnosis, seems like it might be a possibility. This technique consists of placing uninfected ticks on people’s arms, letting them “feed” for a few days, removing them, and seeing if they now contain live borrelia. In a small pilot study of sixteen people with PTLDS, one tick acquired B. burgdorferi DNA from a person’s blood. That doesn’t unequivocally prove that the person was still infected because the ticks could be taking up bits of DNA from leftover dead bacteria. A confirmation would require taking that tick, putting it on a mouse, and that mouse becoming infected. This was not the case for the one positive tick—it was not infectious (Marques et al., 2014).

A larger clinical study will follow up on these findings. Under the direction of Adriana Marques, MD, at the National Institute of Allergy and Infectious Diseases (NIAID), researchers will put clean, laboratory-bred ticks on people, let them feed, remove the ticks, and test them for B. burgdorferi. They’ll see how often they find the bacteria hiding in people who have been treated with antibiotics for Lyme.

Metabolomics for Early Detection

A new approach to detecting early Lyme disease is metabolomics: quantifying small molecule metabolites in blood. The body reacts to infection by changing its metabolism and this is reflected in changes in blood levels of amino acids, sugars, fats, and nucleotides (the building blocks of DNA). From the success of this approach, it seems safe to say that our metabolism is a sensitive indicator of specific infections. Research from Claudia Molins, PhD, and others at the CDC has demonstrated that by profiling metabolites in blood they can detect almost 90 percent of early Lyme disease within three weeks of infection. They correctly identified Lyme disease in samples that were negative with the standard double antibody testing approach (Molins et al., 2015). This approach may also be useful in distinguishing other tick-borne diseases from Lyme disease, for example STARI, which is prevalent in much of the eastern US (Molins et al., 2017).

Metabolomics to Diagnose PTLDS

The above approach used for early detection of Lyme disease can be used to diagnose PTLDS. Fitzgerald et al (2020) have demonstrated that people with PTLDS have metabolites in their blood that distinguish them from people who have fully recovered after being treated for Lyme disease.

Different Drugs for Different Bacterial Shapes

Humans apparently aren’t the only species to show our worst selves when we are under stress. B. burgdorferi, the major bacterial species responsible for Lyme disease, can change its shape when stressed, morphing from its spiral shape into round bodies or into a sticky layer of bacteria called a biofilm. In mice at least, these variants caused more-severe arthritis than the usual unstressed bacteria. They were also more resistant to antibiotics, requiring a cocktail of three antibiotics for eradication. Jie Feng, PhD, and colleagues at Johns Hopkins hypothesize that the success of antibiotic treatment in humans may depend on the variants that a tick injects into you (Feng et al., 2019).

Clinical Trials for Lyme Disease

Clinical trials are research studies intended to evaluate a medical, surgical, or behavioral intervention. They are done so that researchers can study a particular treatment that may not have a lot of data on its safety or effectiveness yet. If you’re considering signing up for a clinical trial, it’s important to note that if you’re placed in the placebo group, you won’t have access to the treatment being studied. It’s also good to understand the phase of the clinical trial: Phase 1 is the first time most drugs will be used in humans so it’s about finding a safe dose. If the drug makes it through the initial trial, it can be used in a larger phase 2 trial to see whether it works well. Then it may be compared to a known effective treatment in a phase 3 trial. If the drug is approved by the FDA, it will go on to a phase 4 trial. Phase 3 and phase 4 trials are the most likely to involve the most effective and safest up-and-coming treatments.

In general, clinical trials may yield valuable information; they may provide benefits for some people but have undesirable outcomes for others. Speak with your doctor about any clinical trial you are considering. To find studies that are currently recruiting for Lyme disease go to clinicaltrials.gov. We’ve also outlined some below.

A Vaccine Against Lyme Disease

There is currently no vaccine for Lyme disease, although there was one, LymeRix, that was approved by the FDA in 1998 and used in the US for about four years. A major reason contributing to its withdrawal from the market was that anti-Lyme vaccine groups claimed that it was causing Lyme arthritis and mounted class-action lawsuits. This claim was proven to be unfounded, but the bad publicity and poor sales led the manufacturer to discontinue the vaccine (Poland, 2011).

We finally have the possibility of a new vaccine: A phase 2 study of healthy people is currently testing a vaccine developed by Valneva Austria GmbH. Don’t worry: They aren’t testing the efficacy of the vaccine by also trying to infect people with Lyme. To see if a person has responded to the vaccine, researchers will take a blood sample and test for antibodies to the Lyme spirochete. There are several trial locations in the US, Germany, and Belgium.

Mensa Diagnostic for Early Lyme Disease

Frances Lee, MD, and John Daiss, PhD, from MicroB-Plex Inc., and Paul Auwaerter, MD, at Johns Hopkins University School of Medicine, are teaming up to test a new diagnostic designed to pick up infections much sooner than the standard blood antibody test. If you have the Lyme rash but haven’t had it for more than seven days, you may wish to see if you qualify for this trial. The standard test looks for antibodies to the Lyme bacterium in blood. It takes a while for antibodies to show up, so if you don’t have antibodies, you don’t know whether it’s just too early to see them. The MENSA (medium enriched for newly synthesized antibody) approach is to look at the antibodies that white blood cells are beginning to make—this should be a much better indicator of an active infection.

Evaluation, Treatment, and Follow-Up

Underscoring how poorly Lyme disease is understood, the NIAID has an ongoing study recruiting people with Lyme disease in order to better document how the disease progresses. Under the direction of Adriana Marques, MD, disease status and immune function will be evaluated with extensive testing. Investigators will offer standard FDA-approved treatment options—this is not a chance to try a new medication.

Post-Treatment Lyme Disease Syndrome and B. Burgdorferi

Adriana R Marques, MD, at the NIAID is also sponsoring a long-term ongoing study of people with suspected PTLDS. Subjects will include people who were infected with B. burgdorferi and were treated with antibiotics, including those who recovered well, those with chronic Lyme or chronic Lyme arthritis, and those who still harbor B. burgdorferi but are asymptomatic. The major question the researchers are hoping to answer is whether continued infection with B. burgdorferi is responsible for ongoing symptoms when the disease becomes chronic.

Comprehensive Evaluation of Postinfection Chronic Fatigue

After an infection, some people end up with chronic and even disabling fatigue with an inability to recover after exercise. This is called postinfection myalgic encephalomyelitis/chronic fatigue syndrome (PI-ME/CFS). Avindra Nath, MD, is leading this study of PI-ME/CFS at the National Institute of Neurological Disorders and Stroke, in which people will be comprehensively evaluated over a few days at the NIH in Bethesda Maryland by a neuropsychologist, a nutritionist, an occupational therapist, and other medical professionals. They’ll look at your immune system, inflammation, response to exercise, your microbiome, cognition, and may ask you to return for even more extensive evaluation. This research is aimed at trying to understand what is going on in PI-ME/CFS and is not limited to PTLDS, since this condition occurs after other infections as well.

Yoga, Meditation, and a Drug to Treat Chronic Symptoms

Brian Fallon, MD, of Columbia University Irving Medical Center and the Research Foundation for Mental Hygiene, is leading two clinical studies on treatments for symptoms of PTLDS. In one study, treatment will consist of Kundalini yoga–based techniques of breathing, stretching, and meditation. Mind-body practices like these are known to be helpful for pain, fatigue, and mental focus. A comparison group will practice other breathing and meditation techniques. This is an eight-week study that will be carried out online.

The second study will evaluate the effects of the drug disulfiram on fatigue and quality of life in people with PTLDS. In laboratory settings, disulfiram has been shown to kill dormant B. burdorferi that are resistant to antibiotics. Disulfiram is better known by its brand name, Antabuse. It is used to discourage alcohol consumption by causing an unpleasant reaction to alcohol. Our Q&A with Fallon provides additional information on these clinical studies.

Resources for Lyme Disease and Related Reading

Lyme Websites, Books, and Organizations

Private and governmental organizations provide help for people with Lyme disease and PTLDS, their caregivers, and medical professionals, including referrals to support groups and doctors, summaries of the latest research, and practical tips for Lyme prevention.

1. • The American Lyme Disease Foundation is a private foundation providing science-based educational resources for patients and physicians.

2. • The Centers for Disease Control and Prevention is a government agency responsible for health security in the US. It carries out research focusing on disease prevention and tick control, and it also provides recent and historical data on Lyme occurrence.

3. • Conquering Lyme Disease: Science Bridges the Great Divide, a book by Jennifer Sotsky, MD, and Brian Fallon, MD, MPH, the director of the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center, is an invaluable resource for Lyme patients and practitioners.

4. • The Global Lyme Alliance is a nonprofit dedicated to fighting tick-borne diseases by supporting education, research, and awareness. It provides referrals to Lyme-literate health care providers, to support groups, and to peer mentors.

5. • Familydoctor.org provides general advice from the American Academy of Family Physicians.

6. • The Lyme Disease Association is an all-volunteer organization started by patients and doctors that funds research and provides useful resources and information.

7. • The Mayo Clinic website is a resource for basic information about all aspects of Lyme disease.

8. • The National Institute of Allergy and Infectious Diseases carries out and funds the majority of infectious-disease-related research in the US. Its website provides detailed summaries of research on various aspects of Lyme disease, such as the use of antibiotics in PTLDS, and past and present efforts at vaccine development.

9. • US National Library of Medicine, Medline Plus, provides a list of links to information on multiple aspects of Lyme disease.

Selected Interviews on goop

goop has interviewed doctors with varied approaches (both Western and Eastern, conventional and alternative), as well as health advocates and patients, including:

1. • Heather Hearst, the founder of Project Lyme, a global advocacy organization focused on prevention and early detection, provides her checklist for preventing Lyme disease.

2. • Ally Hilfiger shares some tools and resources that were meaningful to her in her fight against Lyme disease.

3. • Scott Gerson, MD, PhD, the medical director of the Gerson Institute of Ayurvedic Medicine, explains his approach, including the Ayurvedic practice of panchakarma, to treating Lyme disease.

Disclaimer

This article is for informational purposes only, even if and to the extent that it features the advice of physicians and medical practitioners. This article is not, nor is it intended to be, a substitute for professional medical advice, diagnosis, or treatment and should never be relied upon for specific medical advice. The information and advice in this article is based on research published in peer-reviewed journals, on practices of traditional medicine, and on recommendations made by health practitioners, the National Institutes of Health, the Centers for Disease Control, and other established medical science organizations; this does not necessarily represent the views of goop.