Lyme disease is often referred to as the Great Imitator. Depending on which system the organism invades the visible symptoms can be different from patient to patient. The individual could receive various diagnoses without consideration of an underlying cause for the appropriate treatment options.
72% of participants reported being diagnosed with another condition prior to Lyme diagnosis.
Below are some of the examples of the diagnosis the patients receive prior to if at all, they receive accurate diagnoses. Keep in mind this is a small portion of the actual list:
Nervous System (Mental and Neurodegenerative Diseases)
Bipolar disorder (BD), schizophrenia, depression, obsessive-compulsive disorder (OCD), general anxiety disorder (GAD), sensory processing disorder (SPD). Amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), vascular dementia (VaD), Alzheimers’s disease (AD), Parkinson’s disease dementia (PDD)
Musculoskeletal System
Osteoarthritis, rheumatoid arthritis (RA), transverse myelitis (TM), lumbar disc herniation, fibromyalgia, muscular dystrophy.
Circulatory System
Heart block, supraventricular tachycardia (SVT), myocarditis, cardiomyopathy, bradycardia, vasculitis, hypertension, postural orthostatic tachycardia syndrome (POTS).
Digestive System
Malabsorption syndrome, Crohn’s disease, irritable bowel syndrome (IBS), inflammatory bowel disease (IBD), gastroenteritis, cholecystitis, eosinophilic esophagitis (EoE), small intestinal bacterial overgrowth (SIBO), nonalcoholic fatty liver disease (NAFLD).
Endocrine System
Hashimoto’s thyroiditis, Graves’ disease, hypoglycemia, Cushing’s disease.
Immune System/Mitochondrial Functions (Multi-System)
Lupus, eosinophilic esophagitis (EoE), mast cell activation syndrome (MCAS), myasthenia gravis (MG), Sjogren’s syndrome, mitochondrial myopathies (in non-hereditary cases), inflammatory bowel disease (IBD), Guillain-Barre syndrome (GBS), multiple sclerosis (MS), Graves’ disease, Hashimoto’s thyroiditis, Vasculitis.
LymeDisease.org conducted and published a peer-reviewed patient-powered registry, MyLymeData, similar to researcher-generated patient registries. In their study, it showed it took patients a minimum of 3 years to be diagnosed and seeing a minimum of 5 or more clinicians before diagnosis. The same study states these diagnostic delays occurred despite the fact that 45% of participants reported early symptoms of Lyme disease within days to weeks of exposure. Causes of identified diagnostic delays included false negative lab tests (37%) or positive test results that were dismissed as”false-positives” (13%). Keep in mind many patients do not recall a bite as ticks are as small as a poppy seed, so they are at the mercy of the clinicians they see for direction. 72% of participants reported being diagnosed with another condition prior to Lyme diagnosis. Untreated Lyme disease in return becomes chronic and more difficult to treat.
“Causes of identified diagnostic delays included false negative lab tests (37%) or positive test results that were dismissed as”false-positives” (13%).”
You might wonder if the symptoms are the same, what does it matter what name the disease gets. It makes a huge difference in treatment. Some of these diseases are treated with steroids only, which surpasses the immune system leaving an opportunistic environment for the borreliosis to thrive. Some of these diseases get symptom managing drugs such as pain killers, antidepressants and so on allowing the infection to continue to do damage to the body. It also locks the patient into a restrictive diagnosis where the rest of the symptoms are ignored by the specialist since it does not fit the original diagnoses. Overall the patient continues to suffer from multi-systemic, multi-symptomatic issues while getting little to no support from the medical community or their own friends and family. Sometimes they even get accused of being a hypochondriac, coupled with the low quality of life leading to suicide attempts. Lyme disease community has the highest suicide rates comparing to other chronic illnesses.
Dr. All Miller, retired Mayo Clinic rheumatologist, explains concisely how a patient receives misdiagnosis in this video. He discovered the connection between ALS and Lyme disease when his daughter-in-law got diagnosed with ALS. In the video, he explains why the current two-tier testing available misses positive results when in fact the patient is infected. Please watch this 6-minute long video to better understand the predicament the Lyme community faces. CDC reports, every year almost 400,000 people get infected with Lyme disease in the United States alone. This is with the default testing methodology in place currently. The ILADS trained, medical professionals estimate those numbers to be in the millions when the undiagnosed/misdiagnosed patients are taken into consideration.
In conclusion, Lyme disease is a silent pandemic. While prevention is important, early and accurate diagnosis is of the utmost importance.
Sources:
- Removing the Mask of Average Treatment Effects in Chronic Lyme Disease Research Using Big Data and Subgroup Analysis
- Suicide and Lyme and associated diseases
- Dr. Al Miller Lyme Disease Part 1
- About 1200 Suicides in the US Each Year Result from Lyme & Associated Diseases
- Chronic Invisible Illness and Suicide
If you like this article, please share with your friends and family. If you would like me to add any diseases/disorders to the list above, please leave a comment below. Share your story on how you were diagnosed on Twitter with the #GreatImitator hashtag and don’t forget to tag me @ExtraLymey, so I can share your stories.