This morning I saw my primary care doctor. What a disappointing experience. I must have been following some blind optimism, believing that having a seropositive Lyme diagnosis was going to open up some new level of healthcare. Like now I have this definitive proof so they have to take it seriously, right? Apparently not so much.
As you've seen, I take a lot of care to make sure I get my symptoms logged on a daily basis. I do it for myself, so I can see what's getting worse/improving but I also do it so I have a record to discuss with my doctor. For a week before my appointment I painstakingly went through the whole log and made a condensed list of symptoms so we could reference it more easily during my visit. I was actually looking forward to the appointment, hoping I would be leaving with some sort of treatment plan or idea of how to move forward.
The thing I've been most concerned about the past few days has been frequent lightheadedness; in the past three days I've been on the verge of passing out several times. It's concerning. So I started with that, moved into increased heart rate, shortness of breath, right side neck pain and stiffness and buzzing sensations in different parts of my body... and then the doctor stopped me. "Have you ever been examined for an anxiety disorder?". Wait. What? I thought we were past this. I felt the blood rushing to my face. I told her this had been discussed and dismissed when I first started having symptoms. Lyme symptoms. She went on, saying that I seemed to be displaying a lot of anxiety. My eyes wanted to cry. I was super pissed. But I kept telling myself that if I let myself do tears it would just make her think she was onto something.
Medication for anxiety and seeing a psychiatrist were her suggestions. My answer was a resolute NO, thank you. "Then I really don't know how to help you. The IV antibiotic should have taken care of any trace of the Lyme, and I don't see anything physically wrong with you." We agreed to strongly disagree. There was no further offer of any resources, she just told me to contact her if I needed my records sent anywhere. It was far from the information sharing and brainstorming session that I had envisioned. I kind of thought maybe she would have taken it upon herself to look up some small amount of information about Lyme Disease in the two months since I had seen her, but no such luck.
Luckily I had a lunch date scheduled with a friend I adore, so my disappointment and bitterness were tempered by an emotionally intelligent companion and a delicious "Warrior Wrap" at The Red Fern.
I'm moving on. It felt like a horrible setback in the moment, but with some distance from the situation, I'm more determined than disappointed. Now I feel even more sympathy for all of those with Lyme who can't even get a proper diagnosis. Hopefully I can somehow scrape together the money to see a Lyme Literate MD who has a proven track record and will help me figure out how to care for my continuously deteriorating body. I wish the same for all Lyme patients everywhere.