Lyme disease is a condition that manifests differently for every patient. It takes on an atypical form depending on the stage or the person’s immune system. As such, studies by John Aucott at the Johns Hopkins School of Medicine show that only 61% of patients receive the correct early Lyme disease diagnosis.
The 39% that do not receive the early diagnosis are often misdiagnosed with illnesses such as the flu, rheumatoid arthritis, MS and more. Doctors miss the blind spots, which leads to the worsening of the symptoms. This article will discuss some real Lyme misdiagnosis stories and what can happen if the infection is not caught on time.
Lyme disease is commonly misdiagnosed as viral conditions such as the summer flu or stress. This is most common when the patient does not remember being bitten by a tick and doesn’t have the classic, tell-tale bullseye rash.
Studies by the CDC confirm that around 20-30% of patients do not even have a rash after being infected with the Borrelia bacteria.
Many patients infected with Lyme disease frequently get flu-like symptoms that have nothing to do with the flu. This is quite common, and the CDC has already publicized that 70-80 out of 100 patients will get systemic symptoms before the rash.
For example, patients could report to the ER or their doctor with symptoms such as:
These early Lyme symptoms are common with the summer flu, especially in this combination. As a result, doctors will require no further investigation and will prescribe rest and antivirals. Since there’s no rash, there’s supposedly no reason to suspect Lyme.
When the doctor dismisses the symptoms, patients miss that window of opportunity to treat early Lyme. When caught early, doxycycline is enough to snuff out the Borrelia burgdorferi bacteria. If not, the infection spreads and becomes disseminated or late-stage, chronic Lyme disease.
The symptoms of Lyme disease overlap with various conditions such as chronic fatigue syndrome, multiple sclerosis, and fibromyalgia. Doctors treat the patients for everything but Lyme, causing the chronic illness to worsen.
Many patients with Lyme disease do not realize that they were infected and are diagnosed with other diseases. The absence of a rash makes matters worse, causing patients to spend years with labels such as early MS, CFS, and fibromyalgia.
Patients frequently receive the diagnoses below after consultations:
Doctors misattribute systemic Lyme symptoms to anything but Lyme because the symptoms overlap. Since there is no rash or reason to suspect otherwise, they don’t send a deeper investigation.
According to data by LymeDisease.org, an average of 13-15% of Lyme disease patients are misdiagnosed with MS. Similarly, up to 23-40% of patients originally got a CSF diagnosis, whereas 2% are diagnosed with a neurological disease.
Symptoms steadily worsen with a diagnosis by exclusion. The immune system also takes a great hit as the Borrelia bacteria keeps going rampant. This causes chronic Lyme symptoms such as headaches, dizziness, tinnitus, dysautonomia, digestive problems, extreme fatigue, mood disturbances, and more.
Patients spend years with incorrect diagnoses, such as MS or CFS, or being gaslit that it’s just in their heads. This leads to a delay in treatment and potential complications because the patients did not receive the proper care on time.
Below are some notable case studies where patients suffered after they were wrongfully diagnosed with another condition.
A 42-year-old woman treated by Dr. Susan Cucchiara was diagnosed with Multiple Sclerosis (MS). She was treated for this condition for ten years, but she wasn’t getting any better. At some point, she developed a series of symptoms such as:
This patient was previously bitten by ticks on her head but did not receive formal treatment. Lyme can mimic autoimmune diseases, so Dr. Cucchiara ran a series of lab tests. We recorded the clinical symptoms as well and discovered the following additional symptoms:
One thing we did was support the patient with thyroid nutrients and talked about foods that cause more inflammation to the thyroid gland. The patient also received hormone-balancing treatments based on minerals, vitamins, and herbs such as chaste tree berry.
We offered her natural immune support to help the body overcome the infection. This included vitamin A, vitamin C, lysine, monolaurin, olive leaf, and medicinal mushrooms. Many of these have antiviral properties, which help reduce the viral load.
To help the body release toxic waste, byproducts from lyme bacteria and heavy metals, Dr. Cucchiara recommended bio-therapeutic drainage. The patient was then recommended a series of herbs to kill the Lyme, since the body was already stronger.
The woman started feeling gradually better. After 6 months of treatment, her symptoms improved by 80% and she regained her quality of life.
A 28-year-old female came into our office with a positive ANA test and a negative Western Blot IgG/IgM with bands. False negatives are common, especially in the early stages of the infection, or if the person was bit many years prior.
The patient presented with severe wrist pain. She had no idea what caused the pain and went to numerous doctors because of it. Some even suggested surgery to address the problem.
Dr. Cucchiara took into account the fact that she was born and raised in Long Island, an endemic area for Lyme disease. The joint pain is a classic Lyme symptom, and the positive ANA strengthens the diagnosis. Sometimes a stand alone positive ANA may indicate lyme disease. We decided to do an out of pocket speciality test called iGeneX that is more extensive and sensitive to detecting Lyme Disease and it was positive.
The patient went for treatment at a Lyme center, where she received the following:
The patient returned to us, where she received post-treatment support. This included nutritional support, continued lab monitoring, and immune system rebuilding.
The patient got better, and the correct diagnosis helped her avoid multi-organ system dysfunction.
7-year-old Karissa showed up in the ER in early 2020 with fever, swollen lymph nodes, fatigue, a rash, and significant weight loss. She was sent under suspicion of Kawasaki disease, but the nurse practitioner dismissed it as simple constipation.
Karissa continued experiencing these symptoms months after her ER visit. She appeared to get better at some point until the symptoms worsened at the age of 8. She was admitted to the hospital and hooked up to IV fluids and feeding tubes, but no one knew what was wrong with her.
Karissa was sleeping 22 hours a day and made no progress until her parents turned to alternative healthcare. They ran a Lyme test on her, which turned out positive. Her parents never reported seeing a tick on her or a bullseye rash, so they had no reason to take the usual steps after a tick bite.
Standard tests looked for antibodies. However, with Karissa’s immune system compromised, she could not develop enough antibodies for a test. However, months of intravenous minerals, vitamins, and amino acids helped her body fight the Borrelia bacteria and get her diagnosis.
Karissa eventually recovered, but the delayed treatment for pediatric Lyme caused her to lose 25% of her weight. Conventional medicine believed that her problem was psychological, but parental advocacy helped her recover from a 9-month illness.
Lyme is frequently misdiagnosed because it mimics a variety of illnesses, and the symptoms change with time. Testing is also inaccurate, especially if you don’t do it at the right time.
Below are the main reasons why doctors think your Lyme disease is something else:
Data by the Global Lyme Alliance on Lyme disease testing suggests that 50% of ELISA screening tests are false negative. This happens because the body does not have enough antibodies to show up on the test.
Conventional medicine rarely performs antibody testing again beyond that point. The system overlooks the current symptoms, and the doctors have to guess what other condition it may be. Time-constrained consultations and medical bias frequently lead to superficial labeling.
Some patients don’t even get tested at all, since they don’t show typical symptoms such as the bullseye rash. If they are not aware that they were bitten by a tick, they could accept the diagnostic error and receive the wrong treatment. This could lead to the condition gradually worsening.
Patients should advocate for themselves or their children by asking for a second opinion or insisting that they have their rights respected. Testing should be performed accurately, and symptoms should not be dismissed as something simple.
Early clinical assessments are essential to prevent dissemination.
Patient advocacy is important in the early stages of infection, especially if you suspect a Lyme infection. This is particularly important if you recall a tick bite or a strange bug bite in the northeastern region of the United States.
According to surveys at multiple universities, including the UC Davis Medical Center and Stanford Medical School, 67% of patients ask for Lyme treatment. This happens when doctors do not believe it is Lyme, as it is not as common or doesn’t present with the usual symptom timeline.
Patients should keep a symptom timeline so that doctors can reevaluate the condition as it progresses. If the doctors refuse to see your side of the story, it’s best to ask for a second opinion. Lyme disease specialists and naturopathic doctors are a suitable choice, as they look at the disease as a whole.
Consider asking for co-infection panels. Studies led by David Xi at the University College Dublin suggest that an average of 30-40% Lyme patients have co-existing tick-borne infections. This frequently leads to atypical symptoms, causing diagnosis difficulties.
In my experience…
Dr. Sparks and I come across many patients who are given diagnoses and they are still not getting better. Our patients usually know that something else is wrong and that someone is missing something. We encourage you to use your gut instinct and reach out to Naturopathic Physicians, like those at Naturally Sue Wellness, so we can help you figure out the missing piece. Oftentimes, our patients do have a tick borne illness of some sort, especially those on the East Coast. Do not think you are in the clear if you live on the West Coast, because I do have patients in California with Lyme too. Just because an area like the East Coast may be more likely to be infested with ticks, it is not impossible for them to also be present in other states.
Yes, Lyme tests can be wrong for years, especially if you didn’t develop sufficient antibodies or they fade over time. This is more common in chronic Lyme cases that did not get their diagnosis on time. The antibodies decline gradually, and when you finally get the test, it’s negative. Immunocompromised individuals could also receive repeated negative tests, despite contracting Lyme.
You should follow treatment if the test was negative, but the clinical evaluation and risk assessment were positive. False negatives are frequent, especially in the early stages of Lyme infection. It’s better to get treated based on the symptoms first and repeat the test after a few weeks. After all, Lyme is truly a clinical diagnosis.
Seek re-evaluation if you were treated for something other than Borrelia but still suspect Lyme disease. This condition requires a special treatment approach, and unrelated therapy frequently leads to disease progression. If the doctor insists you don’t have Lyme because the test came out negative, get a second opinion.
Yes, Lyme specialists and Lyme literate naturopaths like those at Naturally Sue Wellness offer symptom-based diagnosis and integrative care that you rarely get in conventional medicine. These specialists don’t look just at the test results, but at risk factors and symptoms as well. They can help diagnose Lyme, even if the disease doesn’t present in its typical form.
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