Love in the time of Borrelia pt.2
With the summer season officially over and the Cantina closed, I was finally able to take it easy. I was still having to take over the counter pain meds however, for the pain in my right arm, shoulder and neck and my scalp felt really tight and I had numbness and itchiness on my upper chest. But as it was the middle of August and still warm out, and a week before Einar was to start school. I had promised at the beginning of the summer to take Einar to Kneipbyn and Sommarland, so on that first Monday we headed there. On the next day we also to managed meet up with some friends in Bursgvik.
However, on the drive back from Bursgvik I began to have chest pains. Coupled with the neck and arm pains I thought "OMG I'm having a heart attack". Not wanting to overreact however, I waited until the next day and drove with Erik to the ER. 8 hours later and the EKG didn't show any heart issues, however my blood pressure was extremely elevated (likely from the extreme pain). The good thing to come out of the ER visit however, was that I got to speak to an Orthopedic surgeon and described the radiating pain issues. He did some palpitate tests which showed some nervous system response issues and also believed there might be cervical herniations present. He prescribed a nerve medicine to help with the pain, although it would take 6 to 10 days to become effective and scheduled an MRI, which wouldn't be until early September.
I was again hopeful, there was at least a plan, but over the next week things continued to get worse. I was able to sleep for only 30 minutes at a time, and then had to change positions. Erik was super supportive of course telling me to "just walk it off", 😒which I tried to do, spending much of the sleepless night walking around the house hoping for some relief. By the 5th day however I began to see issues with lifting my right arm, I wasn't able to lift it over my head or wash my hair without the support of my other arm. The nerve pain was not working at all and now I was sleep deprived and depressed thinking I'm going to be disabled and in pain for the rest of my life. I decided to call the Orthopedic surgeon. I mentioned my latest symptom with my arm and also asked for a stronger pain medicine so that I could at least sleep. He was concerned enough and managed to get the MRI appointment moved up to the next week. With a new pain medicine, I was finally able to sleep for around 4 hours and although my arm continued to worsen, I was hopeful the MRI would identify the problem and then we could find a solution.
Then, at 0500 on Sunday August 28th, two days before the MRI, I woke up feeling funny, it seemed like my left eye was not blinking. I thought maybe it was in my head, but then got up to look in the mirror and indeed, my left eye was not blinking. I immediately woke Erik up and said, "we've got to go the ER". He was frustrated now though having watched me decline over the past two weeks, with no real progress by the doctors to find out the source of the problem and so wanted to accompany me. With both of us going though, it means that Einar also would be going. So, we packed up the iPad, games, snacks and water and headed to the ER at 0630.
We got into a room pretty quickly and the nurses took blood and we waited for the doctor. The on-call doctor, who was an infectious disease specialist, though was perplexed. The baseline blood didn't show any major issues, I mentioned the possible cervical herniations and the scheduled MRI, but these didn't explain the left facial paralysis (by this time my mouth also wasn't moving) or arm issues, there was something else going on. He consulted with the head infectious disease doctor, who came in later to evaluate me. With the facial paralysis as a hallmark symptom of Borrelia (Lyme disease) as well as radiating pain, they were confident in a diagnosis of Neuroboreliosis. Although I don't recall getting a tick bite or having a "bulls' eye" bite ring. They took a spinal fluid sample to verify the diagnosis, but this would take 2 weeks to analyze so they also prescribed antibiotics and steroids (to hopefully prevent long term damage from the facial paralysis).
The doctor couldn't officially state why my arm functionality was reduced, but the hypothesis was that the Neuroboreliosis was causing severe enough inflammation of the nervous system and with a possible pre-existing cervical herniation the nerve was pinched enough to reduce the arm functions.
After about 2 days on the antibiotic, I began to have reduced pain and could finally start to sleep. It would however be months before I would regain some functionality in my arm and begin to lift it more normally. It can take however, from 9 to 12 months for full facial movement to return and then there is still a 10% chance that there will be remaining damage.
When the MRI results came back in October it was immediately clear what had happened. It also wasn't just 1 cervical herniation but 3, and also one in the Thoracic! Since I still have pain, weakness and fatigue in my arm and back I retook the MRI in March. There appears to be some reduction in the inflammation of the spinal column, but the diagnosis is cervical spinal stenosis, so likely a permanent issue. I am hoping to avoid surgery however, but now I have to be much more diligent of my limitations in lifting and repetitive movements effecting my head, neck and arm.
I seem to have survived the battle with Borrelia and am even more sympathetic to anyone suffering with severe chronic pain. I was in uncharted waters and felt at times very much alone. Without a clear reason for my condition and with ever increasing pain and decreasing functionality I had very little hope and didn't know how to explain what I was going through. So outside of Erik, my friends and most of my family had no idea what I was suffering with. It is absolutely amazing to me how something so little could create so much damage.