June Part 4 – Phone Conference with Dr. K.

I received a phone call from the clinic, wanting me to change my appointment to an earlier date. I changed my appointment to a week or so earlier, and it was eating at me as I was worried about what she was going to say.

 I got my phone call, and she wanted to review how I had been feeling in the past month since I had saw her, and if there was any issues with my new medications that I had experienced. I explained to her that the Deplin (15,000 mg of folic acid) seemed to increase my verbal and physical tics. Since taking that medication, not only was I making the “Ahh” yelling noise and the hand raising, that I like to call my thriller dance, I had also began to incorporate a “shh” tic, finger snapping and clapping. The clapping probably drives me crazy the most, as not only do I clap, I do my yelling, followed by a clap. I definitely look like a crazy lady. For most of my friends, it doesn’t even phase them anymore, but I get quite a few looks from strangers. Once again, I have zero control over it.

 She recommended me to take a half dose, but it is a capsule and it is a wicked pain in the ass to divide the powder in separate doses, so I incorporate Dr S’s folic acid, as she was hoping for me to do more to get my body in the shape it needs to be, but I do I happy medium now.  I take the full Deplin one day, and the half dose being Dr. S’s the following day. It is also difficult because this one prescription per month is 150$, with insurance. It’s hard for me to wrap myself around spending that amount of money on a  vitamin supplement, even if I do need it. 

 My biggest issue with my medication was my Adivan. I hate it, to be honest with you, even though I seem to be leveling out more on it as I have been taking just one. I am going to try to up it to 2 and see how it goes. It seems with me, each medication I have ever taken has given me side effects of sorts, or do the polar opposite of what it is suppose to do. I was prescribed it in hopes that everything in my system would calm down, and in theory my tics might have calmed down a bit too. This was not the case. 

 It seemed to make me completely hyperactive and severely depressed. Like I said, it seems to be leveling out on the one, maybe two was just too much for me to start off on, but I am pretty sure the hyper activeness and depression was a bad combo. 

 I told her about how I was doing symptom wise, the increase of my tics being the biggest issue, but I still was having a lot of things going on. She sounded disappointed, as she thought all my neuro meds would have leveled out the tics more, but gave me a new pill schedule, an increase of some of these medications to see if that would make a difference. On a good note, these medications have helped me with my seizure issues, as I haven’t had any absence seizures,  “mummy”,  or “limp noodle” issues, but I still have had a lot of emotional seizures, mostly crying seizures but occasionally uncontrollable laughter… at absolutely nothing as well as my rages. 

 She told me that some of the remaining bloodwork came back, and that I had a deficiency in carnitine, not a surprise as it is commonly found in meat and dairy and I haven’t eaten a lot of either in the past several months,  and to add that to the medication protocol. Easy enough, as it was right at the local pharmacy. 

 I asked her about my SPECT scan results, as I had gotten results but it was a one page, half ass report that just had conclusions and nothing about what was actually done, but figured that maybe she was sent the full report.  Unfortunately, they sent her the same thing and she told me she was going to track down the Dr. to get a full report and try to get her hands on the actual images as well. In the conclusions it said it was ok, but like I have said, there is usually something slightly off and something might be indicative of lyme that they didn’t include because the page was literally less than a paragraph. 

I was hoping there would be something that showed up to explain my tics and all my neuro symptoms so I was beyond frustrated. I had to ask her because they didn’t have their hands on the actual test results if she thought I was crazy, or that I had some sort of conversion disorder. A conversion disorder is a disorder that causes patients to suffer from neuro symptoms or other symptoms without a known cause, although generally only lasts a short period of time, not last the period I have gone through, but you never know. 

 At this point without having an explanation, I felt like I was crazy. Like I was better than I was, but couldn’t actually be better. I was so angry as I have been living in hell  with no control of my body for the past 10 months, but didn’t have a brain test to give me a reason other than I have lyme, “off” bloodwork , and the heart issues. Dr K reassured me that she didn’t think this was the case and is absolutely convinced that they are seizures of my sensory and motor center of my brain. Like I said before, I didn’t tic during the test, so it likely wouldn’t have showed up if I wasn’t doing it. 

 After our conversation about the month, she told me what I had been waiting to hear: my treatment plan.


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