My Story: Part 2 – Something is Wrong

I started my antibiotics with an open mind. I told people in my life I should be just fine in a few weeks. As days passed, I felt no improvement. The headaches were unbearable. The pain was very intense, and just for reference regarding my pain tolerance – I gave birth to a nearly 9lb baby without drugs, and would willingly do it again. It was hard to lift my head, keep my eyes open, and communicate. My brain felt very foggy, and simple tasks felt very mentally taxing.

With the severe headaches and worrisome neurological symptoms, I asked my primary care doctor about having my brain checked out. She conferred with the Infectious Disease doctor in the practice, who said that my persistent severe headaches, sudden brain fog and forgetfulness were not enough cause to suspect neurological Lyme, and that I should be fine with the routine antibiotics. No seal of approval from the ID doc meant no insurance coverage for an MRI. My doctor, being empathetic and resourceful, decided that I could and should have the MRI – she would simply omit “Lyme” from the reason for the order. Instead citing the persistent, severe headache, which at that point, had lasted a month. My MRI came back clear.

I started going to acupuncture at this time, again, with an open mind, not having any prior experience with it, but figuring it couldn’t hurt. My acupuncturist had treated many patients with Lyme and so was very familiar with what I was going through. The weekly acupuncture seemed to help a bit with the headache and the anxiety that I was feeling about the whole situation.

At the end of the 3 week course of doxycycline, I had very little improvement. I was still completely unable to go about my daily business. My primary care doctor conferred again with the Infectious Disease specialist, who said that it is normal for patients to not yet feel better at the end of the antibiotics protocol, and that I should just wait, and come back if I did not feel better in a month. To underline this point – I had been sick for over a month, and was told to just hang around and be sick for another month before I warranted additional care. Now, I had read in my own research that some patients don’t feel better until some time after the antibiotics were done, so I decided to again, keep an open mind, and hope for the best.

I continued weekly acupuncture, rest, and vitamins. I felt a little better, but still not well. If I rested for 2-3 whole days, I could feel “okay” for almost 1 whole day. Sometimes I could rally and be active for a whole day, but I would always pay the price, with more head pain, aching body, and foggy brain.

December came, and I started to feel a little better still. I got excited and thought, “This is it! It worked! I’m better!” I went about at full speed, holiday shopping and trying to catch up on some tasks I had let slide since getting sick in September. I made it through on adrenaline and hope for about 5 days, and then I CRASHED. I was not better. I was right back where I’d been for nearly 3 months.

At this point, I started to realize that I was not one of “the people who just get better.” This was hard for me to process. I had seen a lot of scary stuff in my internet research. I saw the stories of so many people who were so, so sick and couldn’t get better. I read about LLMDs (Lyme Literate Medical Doctors), and how they were hard to find, and sometimes impossible to afford. I read about the schism in the medical community – those who believe that Lyme Disease can and often does become chronic, and those who completely deny that to be true.

I decided I would try out the Infectious Disease doctor, even though he had not yet been very helpful. After all, he did say to call in a month if I wasn’t better. So I called. They gave me an appointment…for February. So I was to hang around and be sick for another month…again.

Up Next: Part 3 – The Cost of Getting Well

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