This is my first post to the Forum, having recently learnt that my mother’s doctors are considering ADEM as the diagnosis for her nervous system inflammation and scattered symptoms. I will give a brief chronological recap of her history and then I have a question for you. She is 60 years old, lives in Sweden, and her medical history is clean of any major issues except for those noted below.
Last summer, my mother sought treatment for a variety of pain and mental symptoms that came and went over more than a month. Eventually, after being dismissed repeatedly by her general physician, she was diagnosed with Lyme. She had had multiple tick bites earlier in the summer—as is typical for summer in her area—but had not seen the “bull’s eye” mark, which is common but not necessary for a Lyme infection. She received antibiotics and apparently recovered within a couple of weeks.
However, she continued to experience strange symptoms that the doctor could not reconcile. She felt that it was very similar to the strange symptoms she experienced prior to getting the Lyme diagnosis and wondered whether it was a recurrence or chronic effects of Lyme.
About three weeks ago, she experienced an acute escalation in symptoms. She went from being able to routinely walk the dog for 6+ miles per day to experience such pain and fatigue that she could not move from her bed to the bathroom without assistance. At this point, she sought urgent care and was finally given a referral to a neurologist. The neurologist’s initial assessment was that it was a likely brain tumor and was given a terrible prognosis, but following an MRI they discovered significant inflammation of the brain and spine and revised the diagnosis to MS or ADEM.
From the beginning, my mother and father suspected advanced Lyme disease due to the similarity of initial symptoms to those preceding her treatment for the disease. However, doctors were largely dismissive of this layman’s theory, due to procedure guidance in our country that conclude that Lyme, once properly treated, cannot recur. Following the MRI, however, they took a spinal tap. They discovered elevated levels of white blood cells (I believe) which are consistent with, but not clear evidence of, Lyme disease. They, of course, also found Lyme antibodies which would be expected in any patient with a previous Lyme infection.
She has now received protocol treatment for ADEM—cortisone and dialysis—and she is waiting for a post-treatment MRI. I hope that she responds to the treatment and that the doctors are correct that she is experiencing monophasic ADEM.
I wonder if anyone else has experience of the intersection of ADEM and Lyme? There are at least four hypotheses that I can think of:
1) There is no connection between her Lyme symptoms last year and the ADEM symptoms this year. Pure coincidence.
2) Last year’s Lyme infection was actually the first occurrence of multiphasic ADEM or MS, but was misdiagnosed and mistreated with antibiotics, but faded without treatment until it recurred this spring.
3) Lyme disease, or residual effects of the disease, triggered ADEM but is otherwise unrelated.
4) Her current condition is not ADEM but an advanced form of incorrectly treated Lyme disease.
Does anyone have any thoughts? Did you experience symptoms for multiple months before being diagnosed with ADEM? Were you misdiagnosed with Lyme disease and/or have you heard of people with a similar history who were misdiagnosed with ADEM?
Thank you so much for sharing your hard-won expertise in this painful area of medicine.