Dr. S called me in because of the severe symptoms I was having as I sent him a video with the new tics and decided to change up my treatment protocol. He said, based on my symptoms, I needed to be on a bartonella treatment. I tested negative for bartonella when I was originally tested for co-infections, but I guess testing is limited to certain strains of it and once you have had it for a long time, it is harder to show up in bloodwork. The only other co infection of lyme I tested positive for was anaplasmosis. Three antibiotics scared me but I wanted to kick this in the butt.
Dr. S started me on an anti seizure medication called Gabapentin (Neurontin) to try to control some of my neuro symptoms I had been having. My head was in a foggy daze most days and my legs were giving me lots of issues. My massage therapist told me there was definitely some circulation issues going on, as from my calves to my feet were very cold compared to the rest of my body. My feet had more feeling, but my legs were numb. My hips ached and my lower back hurt.
Nighttime I was wide-awake. I would take my sleep supplements a few hours prior to bedtime, and they didn’t seem to help a whole lot. I was awake until around 2 o’clock every morning. My mind was racing in every direction, I would sweat and my joints would ache. Once I lay in bed, my chest would hurt and while I tried to settle my mind, all I could feel was my heartbeat radiating through my arm and pain throughout my muscles and joints. Many nights I would awaken with panic attacks or night terrors. Night terrors are different than nightmares. These are like once you wake up you are still in the dream and it’s very real and scary. Many nights I would awake and there would be white demons coming through the ceiling at me. Dave would try to calm me down and I would finally fall back asleep.
Getting up in the morning was nearly impossible for me. Some days, I would hold my phone, (phone alarm), which was going off for about an hour until I could actually move and function. My feet and body were stiff in the morning and I would waddle my way to the shower, which seemed to help loosen me, so that I functioned better.
I finally had a neurologist appointment and was sent to get an MRI, with and without contrast, of my spine. He gave a name to my tics, myocolnus, or myoclonic jerks. He thought that I either had a spine or brain infection causing it, or it was the Lyme. He also thought the numbness might be attributed to MS. I finally got my results back a few weeks later and was pleased to hear that everything came back relatively normal, it was not MS, so even though things are tough now, I am likely to recover and get back to myself, as there wasn’t any lesions in my brain. The MRI did show a small hemangioma on my spine, but I guess it wasn’t large enough to cause any concern.
I went and saw Dr. S again and he decided to keep me on the same antibiotics. During this time, I started visiting another doctor on the seacoast side of NH, Dr. N. She is also a naturopath. I wanted to explore IV treatment. I am still not sure about how I feel about her. She sometimes says a lot of “captain obvious things” and I think she is having as difficult time trying to figure me out as I am with her. I definitely liked Dr. S better, as he seemed to be a better listener and I have never felt like he talks down to people, but, she was willing to do the IV treatments, which I was eager to try.
My stomach got really bad during this time. Nausea. Driving would make me carsick. I would have to pull over to throw up. I tried changing my med routine and taking my pills at work. No sickness on the way to work but about 40 minutes after my pills, I would have to run to the bathroom. At least I knew my legs still worked, even though I couldn’t feel them.
Dr. N, my new doctor, was having a hard time getting the PICC line ordered. Turns out, I am her very first PICC line patient. Kind of nerve racking, but the clinic, where she works, does do IV’s treatments. Having a PICC line is basically the same thing only I could do them at home. My neurologist stepped in and helped the process. He got my line ordered at my local hospital after several weeks of communicating back and forth trying to get everything figured out.
I don’t think any of these people fully understand Lyme rage (which I will explain what this is later).
Many radiology departments in the state were unwilling to put my line in either because Dr. N was not affiliated with them, or they did not agree with why I was getting the PICC line put in. They said Lyme did not require long-term treatment so I didn’t need the PICC line. It was extremely frustrating that I seemed to be fading, getting worse and worse, and I couldn’t get what I needed.
My blood work was beginning to show some effects of my medication and the Lyme. I had high levels of cortisol and some adrenal issues going on. My liver enzymes were high, low vitamin D, and low potassium levels. I was given some more detoxifying supplements to try to get this stuff balanced out and a supplement called Relora to try to lower the cortisol levels.
My new meds and supplements. November 2012. Adding to the collection as you can see.