5 Conditions Doctors Tested Me for Instead of Lyme Disease
According to the Center for Disease Control, approximately 300,000 people are diagnosed with Lyme disease each year. Lyme disease is more prevalent than ever before. Despite its frequency, it is incredibly difficult to even receive testing for the disease. Controversy has surrounded Lyme disease because the Infectious Disease Society of America (IDSA) questions its existence – even though a plethora of studies have determined its presence and its profound effects on the human body.
The only case in which IDSA recognizes Lyme disease is if an Erythema migrans rash is present in combination with flu-like symptoms. If a patient does not present these classic symptoms, IDSA states that the patient clearly does not have Lyme disease. Doctors following IDSA guidelines focus on whether or not an Erythema migrans rash and flu-like symptoms are present, but many Lyme patients do not develop a rash during their illness. Most of the time, if a patient does not display these symptoms, they will not be tested for Lyme disease.
IDSA has used scare tactics to prevent doctors from treating those with Lyme disease and has even revoked medical licenses of those who do. Due to IDSA’s actions, many doctors are terrified to even test patients for Lyme if they do not demonstrate the traditional symptoms, and medical students are not accurately taught how Lyme disease can present itself. As a result, patients who truly have Lyme disease are tested for or misdiagnosed with conditions that Lyme disease mimics.
I vividly remember every time I asked a doctor to test me for Lyme disease. They ignored my request by bombarding me with questions, such as “Were you ever bitten by a tick? Do you recall a bullseye-shaped rash?” All I could think about was telling them that the illness is more complicated than a rash and a tick bite. I was also offended that they did not take my concern about Lyme disease seriously. After all, I am the patient and the one experiencing the illness. I know my body better than anyone. I would not have minded the questions if my symptoms did not fit the description of Lyme disease, but they did. They were just unaware of all the symptoms of the disease. They then continued to tell me that they would test for Lyme if everything else was ruled out.
I have been tested for the following conditions below due to the type of symptoms I have experienced and the tests for these conditions were negative. Even after receiving negative results for these diseases, no doctor besides my Lyme-literate doctor has tested me for Lyme disease. These diseases listed below are more familiar to doctors and are not as controversial as Lyme, so many doctors would rather diagnose patients with these diseases.
1. Multiple sclerosis: If your Lyme disease causes proximal muscle weakness like mine does, you might be tested for multiple sclerosis. However, negative blood tests and an unremarkable MRI of the brain and spinal cord make MS an unlikely culprit in my case.
2. Lupus: The reason why I was tested for lupus is because I was experiencing such a wide variety of symptoms. I had digestive complications such as nausea and vomiting, joint pain in my hips and knees, chest pain and fatigue. However, negative blood tests and a normal echocardiogram ruled out lupus.
3. Myasthenia gravis: Doctors looked into the possibility of myasthenia gravis after multiple sclerosis was ruled out. Myasthenia gravis can cause weakness in various muscles and the muscles fatigue with repetitive use. With my Lyme disease, I get more tired as the day goes on, so choosing to test for myasthenia gravis was a logical decision. However, my reflexes are normal (which they should be abnormal with myasthenia gravis) and an anti acetylcholine receptor (AChR) antibody test was negative, so myasthenia gravis was highly unlikely.
4. Wilson’s disease: After blood tests revealed I had an excess copper in my body, one doctor became concerned about Wilson’s disease. They tested for Wilson’s disease even though a link has been found between Lyme disease and copper levels. I understood why they were conducting testing for this disease since I had a lengthy history of abdominal pain and began having tremors. They conducted a 24-hour urine collection and I was also sent to an ophthalmologist so they could search my eyes for Kayser-Fleischer rings, which are caused by excess copper located in the eyes. However, the ophthalmologist saw nothing abnormal and the urine collection showed nothing that pointed to Wilson’s disease.
5. Celiac disease: Ever since I was a child, I have not tolerated foods with gluten well. A possible reason for that is I may have had Lyme disease my entire life and it has been linked to food intolerances and allergies. After eating gluten, I would always feel bloated, have nausea and sometimes vomit. When I found out I had a gluten intolerance, I transitioned to a gluten-free diet. However, even after being on a gluten-free diet for a year, I was still experiencing the same digestive troubles due to Lyme. However, I was tested for Celiac disease instead – which I will admit, made sense. After blood tests, an upper endoscopy and a biopsy of stomach and duodenum tissue, we discovered that Celiac disease was not present.
I have great respect for the doctors who have tried to provide me with answers as to why I am sick. I appreciate their effort. I just think they could have done more. I wish they would have taken the time to understand my complex illness and to learn more about Lyme disease. I wish that so many doctors would not place faith in IDSA. Many doctors need to be more open-minded and I am certain they would help more patients conquer their illnesses if they were. I know a vast number of people who are or have had an illness – some who have other illnesses besides Lyme disease – who have asked to be tested for a certain condition or for a different treatment and their doctors invalidated their thoughts and opinions.
I don’t think doctors are aware of how helpless it feels to be ignored, especially when you are desperate for answers and assistance. Hopefully, sometime in my lifetime, Lyme disease will no longer be doubted and patients will receive the care they undoubtedly deserve.
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Thinkstock photo via Ridofranz.