It causes me dismay that as I’m writing this my fingers are having difficult connecting with the right keys on the keyboard. More and more lately I notice I have problems with things I call “fine motor” tasks. Like picking up small things, aiming my fingers at a particular target and hitting it, etc. Finding anything in my purse without looking at the same time. The tremor I developed a couple of years ago seems to interfere as well. I drop pills on the floor before I can get them into my mouth. It’s the mother fucking spirochetes, drilling deeper into my neurological system.
On the second day of Doxy it was mostly the same. On the third day of Doxy I began to notice an increase in pain and malaise.
I went to see LLMD No. 3, a Neurologist who is Lyme literate. I’m not complaining about Doc 1 and 2. I gained much from both. But I’ve known I needed a neurologist on board for a long time. Back in 2011 I saw a couple of Neuros after begging for referrals from PCPs and Orthos who continued to dismiss my health concerns as anxiety and posture related. The Neuros at that time did a basic exam and declared I was having “myofascial pain”. The Neuros at that time always treated me as if I was an over-anxious middle age woman looking for some explanation for my pain that didn’t exist. Four years later my symptoms have dramatically worsened. I have several neurological abnormalities from just a basic exam. Not to mention EMG tests showing nerve involvement at C5-C6 and an MRI showing severe nerve impingement at L4-5. But hey, I’m not resentful. At least I try not to be. I find it eats me alive much like the Spirochetes.
I’d made an appointment for my son to see the LL Neurologist as well. Shortly after I was diagnosed with Lyme my son recalled having been bitten by a tick around age 2. He had been with his other Mom at the time and when I called her to ask if it happened, she confirmed it. The memory of the event then came back to me as well. We were living in New Mexico at the time in the mountains just outside of Albuquerque. I had him tested via Igenex and he showed positive markers on several bands that are specific to Lyme. He’s had ADHD symptoms since Kindergarten and started having rage outbursts around age 3-4 shortly after he was bitten. The Neurologist confirmed my son’s diagnosis of Lyme with co-infections. I had suspected this, but it was another straw on the load of bricks I carry around on my back.
On the afternoon of the third day of Doxy, I came home and layed in my bed with microwaved warmers in a deep fetal position until my partner came home. By then I was in full herx. I had severe pain, weakness, and my brain was thick with sludge and sparking with anxiety. Several questions were circling through my brain over and over again after the Neurologist visit. She was concerned about the ridge at the base of my skull on the left side (and I have been too). She ordered an MRI to rule out some things that are too scary to mention here. She expressed concern that I wasn’t on a cyst buster after citing the research that Spiros immediately form into cysts when exposed to Doxy, thus allowing the Spiros to further elude the immune system. I already have several cysts in my body, I don’t think I can afford anymore.
She pointed out the evidence of Lyme and co-infections on both my and my son’s body and the muscle wasting up and down my left side. She observed that my face remains mostly expressionless and wanted to know if that was a “normal” thing. It was part of the Neuro exam, rather than a statement on what I do with my face. I realized the answer was yes, that my face, once full of expression, had become rather lifeless. It’s my pain face. Internally I am trying to remain upright and not tense any muscles in my shoulders neck or back that could trigger a migraine. I am holding on and struggling through. Imagine carrying a big load of bricks on the top of your head and upper neck while trying to do your day-to-day responsibilities. That is what produces my pain face.
I kept reliving the visit over and over in my head. I started remembering health events from my long distant past that seemed at the time to be “out of the blue” occasions that when strung together pave a path to the symptoms of chronic infection. I remember the tick bite on the back of my thigh but not the date or the state I was living in at the time. The remembered the way the Neuro winced when I mentioned I had breastfed my son for two years. I saw a study a few days later with evidence that Bartonella can be passed from mother to infant via breastmilk. I suspect I may have been infected before my son was born.
On the fourth day of Doxy I understood that I was sicker than I thought I was.
On the 5th day of Doxy I noticed an increase in my usual pain of 5 to a 6 or 7.
Starting at the crown of my head and extending down the right side into my jaw and down below my right ribs. This is the exact pain path as the left side. But the left side is chronic and the right side is new and intermittent. My pain level had been steadily increasing since an epidural steroid injection I had in March wore off sometime around mid-summer. I had to start taking Hydrocodone again. On the 5th day of Doxy I took three Norco total and had very little pain relief from them.
The Neuro had suggested the idea of “pulsing” the Doxy (5 days on 2 days off). I decided to take her advice.
On the 6th and 7th day of Doxy I rested.
to be continued…