Anyone that reads my blog knows my 23 year old daughter was previously diagnosed with Borrelia miyamotoi, a relapsing fever spirochete. Very little is known about this bacteria and the studies that have been done on it are extremely limited.
My daughter originally got sick in the summer before second grade and I spent eight years searching for help as her symptoms worsened. She was finally diagnosed for the first time when she was in high school. After almost a decade of suffering and searching for answers, we found the Lyme disease doctor that was a pioneer in his time.
Now, eight years later, here we are going through this all over again. She has the most amazing team of doctors helping to control her symptoms along with the very same wonderful infectious disease doctor, who has been a godsend through it all.
There are doctors who see a symptom and treat it. Then there are the thinkers. They understand the symptoms are part of a larger problem and search for that answer while treating symptoms. Fix the larger problem and symptoms resolve. As an advocate, if you ask for help searching for the larger issue, sometimes you are seen as difficult and a know-it-all. A shit stirrer, if you will.
Most questions that were asked of these providers were derived straight from legitimate published research articles, yet seemed to be taken as a challenge to their knowledge and experience.
Anyone searching for answers for themselves or a loved one might relate to the following post. I thought it would be interesting to keep track of the abuse suffered by myself and my daughter while looking for help and to document the absurdity of it all. Maybe one day we will look back at it all and laugh.
Any physician reading this, please understand this was written from truth and frustration. Use this as a teaching tool as to what not to say and know that we all know you are human. You have bad days too. You have stresses and struggles and get sick just like the rest of us, but when we walk through that door we are sick, scared, feel alone, and we have just come from your colleague who has smirked or demeaned or gaslit us. By the time we get to you, we are exhausted and, at times, pissed off. Listen. Acknowledge. Empathize. Think before you speak. Direct us. Guide us. Support us. Don’t let us go through it alone.
The following were the issues.
These are all different specialties and hospitals’ responses.
My daughter is unable to eat without gagging and has absolutely no appetite most of the time.
“Go home and eat something.”
My daughter, sobbing (she is typically calm and collected), tries explaining to the physician that the anxiety is situational and not the cause of her sickness.
“Don’t worry, the Zoloft will kick in soon.”
I suspected my daughter developed POTS and nobody was testing her for it correctly, so I did the test at home on my own and brought in my results to all doctors.
“POTS is not a real diagnosis.”
“There is nothing to do for it anyway. My son has it and he passes out, then he’s fine.”
“This isn’t a real test. I wrote papers on this and I know what I’m talking about.” (Wagging finger in my face…. Yup… literally.)
“This is not orthostatic hypotension.” (Different disorder) You can have orthostatic hypotension with POTS, but you don’t need it for POTS diagnosis. It’s the same as saying all squares are rectangles but not all rectangles are squares.
Doctor offers to treat. When my daughter asked what specifically he would treat for…
“Just trust me and if you don’t ….” throws hands in the air and walks out of the room. Mic drop.
This one doesn’t need an intro.
“Stop reading and let me do my job.”
Daughter is convulsing on table in office.
“You’re just having a panic attack. Someone call an ambulance.”
Sitting beside my daughter in the emergency room, after being brought in by ambulance from the endocrinologist’s office.
“So endocrinology sent you to the emergency room for an endocrinology issue?” (This one I found amusing immediately)
Providing the results of the same test done at multiple locations over the period of one month with significant changes that nobody else had picked up on.
“What is she a nurse?” (As he looked at my husband with a sarcastic smirk on his face.)
Doctor is willing to treat the “symptom”. I ask why this is happening? What is this a symptom of? If we don’t fix the actual problem will this cause permanent damage?
“Didn’t your mother ever tell you to not go looking for trouble?”
In patient at hospital being examined by the attending for the first time.
“Have you ever taken an anxiety medication?”
“Yes. I have anxiety, which is appropriate for the level of stress I am going through.”
Smug smirk. “Yes, you have anxiety.”
Without any communication all tests were canceled and my daughter was discharged. Psych consult was never called.
This doctor never stood up from behind his desk for any visits. This visit was a follow up to discuss test results with no examination.
“While you’re in school in the city and you start to feel shaky or you’re about to pass out, just go into the nearest bodega and get yourself a bag of chips and a sugary soda.” This was a cardiologist.
Urgent call placed in the morning to cardiology office because heart rate was dropping into low 50s and looked as if she was going into shock.
“This is not a cardiology issue.”
“Then whose issue is it?”
“He doesn’t know.”
“Then who does know?”
“I don’t know.”
Heart rate sinus tachycardia. Chronic rate 95-158 at all times.
“Anxiety will raise your heart rate.”
During her hospital stay, we had given past medical history multiple times to everyone that had hands on her. At any point, they can retrieve visit notes to any specialist linked to this hospital my daughter had seen. Borrelia miyamotoi or tick bacterial infection or Lyme coinfection (because most doctors do not know the difference) were mentioned a multitude of times particularly since they were leaning in that direction at the time.
“Nobody ever told me that she had this other infection. I was told Lyme disease.”
I cannot begin to explain the level of anger and frustration I felt at this point. She was in the hospital and should’ve been safe. They tested her for Lyme disease. It’s like testing for Covid when you’re looking for flu. They discharged her with hypoglycemia and anxiety. She is currently being treated for Borrelia miyamotoi.
The random things we will never unhear:
One doctor just walked out of examination room mid-sentence. (Eye roll)
“Im going back to school. See you in three months.”
“Let me tell you something about your generation. Your generation sucks. You’re unable to regulate your emotions”
We would listen if you shared your own frustrations—the moments that stayed with you during your own search for answers. We are not alone in this, and perhaps by sharing our stories we can help each other, and maybe even help change the way patients are heard.
Life with Borrelia 