Another case of Lyme disease attributed to FND, due to negative Lyme testing
mel
Convalescent
In spite of having distinctive EM rashes, multiple tick bites, and symptoms compatible with neurological involvement, neurologists’ opinions were conflicted by an apparent lack of understanding of how delayed diagnosis and treatment affects Lyme disease outcomes adversely. Nor did they take into account a negative Lyme test does not rule out Lyme disease. Other clinicians she saw doubted her symptoms were due to Lyme infection and she was confused by this contradiction with NICE guidelines where EM rash is considered diagnostic.
She said of her FND diagnosis;
"Shortly afterwards, I had a follow-up neurology appointment. I was told that, due to the negative tests, they were going to diagnose me with Functional Neurological Disorder (FND) and that I would be discharged from neurology.
This diagnosis felt very abrupt, unclear and confusing. It also felt contradictory to the previous rationale provided by the same neurology doctor and did not explain objective findings such as POTS or the ophthalmology measurements related to my double vision."
Maja had the skills and educational background to successfully advocate for herself;
"without advocating for myself and explaining the pattern I had noticed, my symptoms may have been dismissed because initial investigations were normal. By that stage, I felt that clinicians were beginning to question whether my symptoms had an organic basis, as I had already been given a possible FND label during my admission for dysphagia."
Illustrating the danger of how easily tick borne infections can be confused with FND. Maja points out;
"Advocacy does not mean rejecting medical opinions or believing you have all the answers. For me, it has meant asking questions, requesting explanations, reviewing my medical records and ensuring that the timeline of my illness is properly understood."
"Living with complex symptoms is difficult enough. Trying to navigate uncertainty, multiple specialties and changing interpretations of your illness adds another layer of challenge."
"Patients should not have to become the person connecting the dots between appointments, investigations and different specialists, but unfortunately this is often what happens when conditions do not fit neatly into one pathway."
Once again, clinicians confusing clinical presentation with underlying cause. Symptoms that appear functional do not establish a functional cause, and negative tests don't establish FND. In this case, documented Lyme disease, POTS, possible cranial nerve involvement and incomplete investigations make that distinction particularly important. Describing how symptoms present is not the same as explaining why they occur.