Are Your “Mystery Symptoms” Really Lyme Disease?

If you’re exhausted, have joint or muscle pain that’s migrating throughout your body, memory issues, headaches, and/or suffer from an “atypical” condition—you might have Lyme disease and not know it.

After practicing medicine for more than a decade, I’ve come to the conclusion that many people are walking around with undiagnosed Lyme disease. Often, they hop from doctor to doctor with symptoms that seem to come and go quite mysteriously—yet few doctors have Lyme disease on their radar.

In some cases, after ruling out other diagnoses, doctors will tell patients it’s “all in their head” and send them to the pharmacy with a prescription for an antidepressant. This type of experience can be devastating for patients and leave them thinking that perhaps all their strange, rare and peculiar symptoms are not real.

I can’t tell you how many patients have shown up in my office after years of feeling poorly and frustrated that no one has diagnosed them correctly. Yet, once we reach a Lyme disease diagnosis and get the symptoms under control, they literally get their life back. The trick is identifying when Lyme disease is present and problematic, which can be tough to do even for physicians who have worked with many complex chronic disease patients, including those suffering from Lyme disease.

Lyme Disease is the “Great Masquerader”

Lyme disease is a master of disguises. In fact, it was originally discovered by mimicking a chronic arthritic like condition. In the early 1970s, there was a group of children in Lyme, CT who developed symptoms of juvenile rheumatoid arthritis, and doctors were baffled with the cause of their illness.

What researchers later discovered is that the real problem is that they had been bitten by black-legged ticks that were carrying the Borrelia burgdorferi bacteria. That spiral-shaped bacteria made itself at home in their bodies with a strong affinity for the joints, causing Lyme disease.

In its early stages, Lyme disease looks a lot like the flu with signs and symptoms that can include:

• Rash (erythema migrans)
• Headaches
• Sore throat
• Chills
• Fever
• Fatigue
• Stiff neck
• Swollen lymph nodes (lymphadenopathy)

If not properly diagnosed and treated, those Lyme disease-causing bacteria can burrow down into other organs and tissues throughout the body, causing signs and symptoms including:

• Chronic fatigue
• Muscle aches
• Joint pain and/or swelling
• Neurological issues
• Memory issues
• Lightheadedness
• Fainting
• Pain that disrupts sleep
• Gastrointestinal upset
• Chest pain or palpitations
• Headaches
• A stiff neck
• Paresthesias (pins and needle sensations, burning, itching)
• Visual disturbances
• Sensitivity to light and sounds
• Anxiety
• Depression

Since these chronic Lyme disease symptoms resemble those of 300 other diseases, many doctors don’t suspect Lyme. Instead, patients are told they have multiple sclerosis (MS), ALS, fibromyalgia, chronic fatigue syndrome, depression, heart problems, arthritis, neurological disease and more.  And, frankly, patients can concurrently have some of the conditions listed above and suffer from Lyme disease, which makes reaching a diagnosis even more challenging.

Diagnosing Lyme disease: You Can’t Count on a Rash

The first problem in diagnosing Lyme disease is that most doctors are trained to look for the pathognomonic “bullseye rash”—called the erythema migrans (EM) rash which is red in the center and surrounded by concentric rings. Yet, only 70-80% of patients develop that classic rash. To complicate matters even more, sometimes patients present with a red irritated rash, which is often misdiagnosed since people don’t realize they were bitten by a tick.

A single EM rash or multiple EM rashes can appear anywhere from 3-30 days after the tick bite, most commonly at 7 days. Over time, a rash can grow to up to 12 inches and feel warm to the touch and is usually not painful or itchy. It can take many weeks for the rash to disappear.

Reaching a Diagnosis

If a patient has a telltale bullseye rash and lives in an endemic region where Lyme disease is present, that’s enough for a doctor to suspect Lyme disease and administer immediate treatment with antibiotics.

Yet, even with a rash, some doctors don’t suspect Lyme. I’ve heard from many patients who were bitten by a tick, yet told by their doctor that, “Lyme disease does not exist in California.” Left untreated, months later they developed an unexplained chronic illness.

Testing Can Be a Challenge

Since most Lyme disease cases are less clear-cut and symptoms are often missed, testing can help support a diagnosis. However, I would like to emphasize that a Lyme diagnosis is a clinical diagnosis that should not entirely rely on lab testing, as false negatives and low sensitivity are common.

As with other tests looking at immune system function, the conventional testing methods that are currently available for Lyme disease can be inaccurate and misleading, plus confusing to interpret.  For example, if you are bit by a tick and contract Lyme and get tested immediately, the result will likely be negative because it takes many weeks for antibodies to be produced against Lyme and then show up in the bloodstream. Or, if you have taken antibiotics in the early stage of the disease, antibody levels may be undetectable.

The CDC recommends a two-step testing process for Lyme disease. The first test is an ELISA test that looks for antibodies against Lyme. If this is positive then a second test, a Western Blot, is run looking for IgM and IgG antibodies against certain antigens associated with Borrelia burgdorferi. 

The challenge, however, is that these tests can have high false-negative and low sensitivity rates, which can cause doctors to rule out Lyme disease even when it’s present. That’s because the Lyme bacteria are very stealth and adept at evading your immune system, and in fact, are known to be immunosuppressive. Additionally, these tests are only looking at whether a patient has been exposed to Lyme disease, but does not indicate whether there is an active infection leading to symptom development.

Given these limitations, laboratory testing can’t be the sole variable in diagnosing Lyme disease. If you have symptoms, live in an endemic area and recall a tick bite, yet your test results came back negative, I recommend seeing a Lyme literate doctor which you can find through the International Lyme and Associated Diseases Society (ILADS).

Lyme literate doctors are highly trained to recognize and test for Lyme disease. Plus, many of them will order more specialized and sensitive testing, to help rule in or out Lyme or other co-infections like anaplasma, ehrlichia, babesia or bartonella.

Treatment

If Lyme disease is caught in its early acute stage, antibiotics are usually very effective, taking anywhere from 2, 4 or 6 weeks of treatment. For chronic Lyme disease, or post-treatment Lyme disease syndrome, where symptoms have been chronically or intermittently present for 6 months or more, treatment can be far more complex. It can also take a lot longer, from 6 months to 2 years or more to feel like the Lyme disease is under control.

If there is involvement with the central nervous system with neurological issues, IV antibiotics are commonly prescribed to help penetrate deeper into the central nervous system.

With chronic Lyme, it’s very important to see a Lyme literate doctor who combines the best of conventional and natural medicine. That’s because ridding your body of the Lyme bacteria is only one aspect of healing. It’s also important to use integrative medicines to support damaged tissue, help modulate the immune system and maximize detoxification pathways – all of which lead to faster and more effective healing.

Treatment of chronic Lyme disease can include long-term antibiotics, herbal medicines, IV therapies, counseling, immune supportive therapies, diet changes, lifestyle modifications (e.g. stress reduction, meditation) and usually a combination of all the above.

Left untreated, Lyme disease can progress to affect the heart, brain, joints and practically any system in the body. For example, Lyme carditis can develop—which is inflammation of the heart tissue. Neurological symptoms similar to those presenting with multiple sclerosis can also occur. It has also been shown that those suffering from chronic debilitating Lyme disease have a quality of life comparable to those with congestive heart failure.

How Do You Know If Treatment Is Working?

The first thing doctors watch for is improvement in symptoms. When battling Lyme disease, it’s not uncommon for patients to experience a herxhemier reaction, which is a “die-off” reaction of the Lyme organism causing massive inflammation.

Over time, and with proper treatment modifications, the herxheimer reaction becomes less and less and symptoms begin to improve. I have observed with Lyme treatment that there is often a “two-step forward, one-step backward” progression, where some symptoms improve but others may worsen or new symptoms appear.

I would like to emphasize that support from family, friends and community is often what gets Lyme patients through the most difficult of times. The psycho-emotional, social, financial and physical stress induced by Lyme for certain people is beyond imaginable. I must say that my Lyme patients have taught me the most in medicine about perseverance, courage and trust in their bodies and with their treatment. Lyme is a very insidious and poorly understood illness that we as doctors are still learning about on a daily basis.