I know that I should be writing more often to document all that is going on, but I’ve just been too sick and my brain has once again turned to mush.
I thought I was lucky. After finishing my first 3 weeks of dosing, I had my “off” week. I was really sick for the first 3 days of the week, but by the last 2 days I was actually doing pretty good. I had the best day that I had had in months. And then I went back to the doctor…month 2 of antibiotics are kicking my ass.
The weekend before my appointment I received a phone call from my clinic asking if I would be interested in participating in a new study to help identify why Lyme (and its co infections) affect people differently. They are looking at genes to help identify factors as to why some patients become so ill and why some are difficult to treat. Out of all the patients in the clinic they selected only 20. So I’m one of the 20 in the study and one of only 20% of their patients requiring IV therapy. This makes me realize how sick I am. My next visit is with the head of the clinic, “The Wizard of Oz” as some call him. In a strange way I’m looking forward to it. He had come in during my first two appointments, so I have met him. This man is a leader in Lyme and has helped people around the world. This just further proves to me that I am in the absolute best hands that I can be in to give me the greatest chance for the best recovery I can have.
Back to the appointment. My original appointment was at 1040am. We’d miss traffic both to and from. But because of the research study, they wanted us there by 9. The drive down was horrible. We hit a TON of traffic due to an overturned tractor trailer on the main highway in the state. Despite the traffic, we made it there by 940. They took me back for the study (explained the study detail, took some blood and gave me 2 components needed to be done at home.) We were late for our appointment but the doctor was running behind so it all worked out. Speaking with doctor she was impressed at the progress already made, said they don’t usually see till months in. My mom noted the improvement in my cognitive function. I was riding high on the horse, till the horse threw me off and trampled me.
I got my new meds. Originally I had thought I’d only be doing one or two new meds a month. This month there are 6! I’m still on the IV meds that I was on the first month and they added a new antibiotic for the babesia (Babesiosis in the name for the infection.) I did my test dose in the office. The nurse said that the most common side affects are a metallic taste in your mouth all the time and headache. The doctor had explained that babesia treatment can be rough (a slew of symptoms but the decline in cognitive function was the one I was most worried about.) I still thought “I got this.” I also figured based on last month that I’d be sick on the days after I dosed. Boy, was I in for a surprise!!!
Before I go any further, let me explain that my appointment days are very hard on me. It’s roughly a 2 hour drive there with no traffic, I miss my naps, my anxiety is high, my nerves are on edge and I dread the ride home. All that being said, its makes me start the occasional jerk/twitch/spasm which usually gets more frequent throughout the day.
After my dose I had the metallic tasted in my mouth, nothing else. We checked out, got loaded in the car and started the drive home…and then it all began. We were not even on the road for 15 minutes on the road and I noticed my jerk/twitch/spasms getting worse. I knew that I got worse the longer the day wore on but this was pretty quick decline. It kept going…this was a herx and it would be the most intense by far. My mom guesstimates that by about 45 min into the drive is when things really got bad to watch. I was jerking limbs, full body spasms, stuttering and stammering and near tears. I honestly felt like I was suffering from a seizure, a stroke and Parkinson’s all at the same time. Keep in mind I’m in the front seat of the car. My mom said she could feel the car moving from the herx. I can only imagine what I looked like to her. It had to be incredibly hard for her: not being able to help her child, watching the road and trying to watch me to make sure I was ok.
The major part of the herx lasted about 3 hours. My mom took a short video of it when we got home and I was collapsed out the floor. I know what I went through, but even I couldn’t believe what I looked like, it was like watching someone else in your own body. While I was on the floor (being out of the car and spread out) I continued to herx but then I started trying to control my body, the mind is a powerful thing. I tried to clear my mind, quite difficult when your flapping around like a fish. I started to pray and meditate. I then started on my body. First my breathing, then extremities (one by one), then my trunk.
I’m no guru by any means but through this journey I have delved deeper into spirituality which I think it helping. I have talks with my body “I know that you are worn out but you to keep fighting” (no I’m not crazy); I work on feeling my body (mentally); I work on connecting my body and my brain. I’m fighting with everything I have; I am utilizing the Universe and praying to God. Never bring a knife to a gunfight!
The last week has been very difficult. Everyday sucks, I’m sick all the time. I don’t every other day to recoup. My brain is turning to mush again. But that’s Babesia-literally a parasite dying inside me. Babesia is often compared to Malaria, very similar symptoms. So now not only is the Lyme bacteria being killed, so are the Babesia parasites. And this is only month 2!
I’m hanging in there. I’ve been a little more cranky than normal and have had some severe emotional days. But what else can I do? I try to be mindful of others and be aware of my words and actions. I apologize to those whose texts/emails/phone calls who have gone unanswered or at best, severely delayed. There are days I don’t check my phone at all. Mostly though, it’s from being too fatigued. Knowing I’m too tired to have a conversation or that my brain is not working and I can’t understand things. This blog itself, its taken hours. I did it early in the morning and delayed my meds to be able to do it. Thank you Spell check!
I hope to blog again soon, as soon as I get a brief moment of clarity.
I want to send a special note to some people. Stacy, thank you for your love and support and I’m sorry that I haven’t replied or blogged;) I think of you often and as always are in my prayers. Kara, thank you for all that you’ve done and continue to do. I love you very much! You are my “golden girl” till the end! Maria – thanks for the car ride and the cold stone. It was huge pick me up. I love talking with you. You’re so interesting and unique and I love you too!