Neuroborreliosis is technical term for Lyme disease infection that spreads to the brain and central nervous system. Borrellia Burdorferi bacteria (Lyme) is a spirochete and is a sister to the more commonly known STD syphilis. In high school they teach our youngsters about sexually transmitted diseases highlighting the horrific cascade of medical consequences including blindness and insanity. While this is a very wise maneuver, what leaves me in a state of complete wonderment, is why they don’t teach our children the consequences of getting bit by a tick.
I realize there is a subsection of young teens engaging in sexual activities, but ALL of our children are at risk for getting Lyme unless they never go outdoors, have no pets and/or you examine every nook and cranny of their bodies from head to toe nightly which if you are above the age of 7 would be just downright creepy.
But I digress. Neurological lyme is misery. It is maddening– literally. I can say from first hand experience that it can change your personality, your entire existence profoundly – and not for the good. In the days before I became a complete mental train wreck, I worked at a corporate job that included some fair amount of responsibility. I led projects with a huge number of logistics and moving parts and multi-tasked my ass off. I used to hop a plane weekly so I attributed my fatigue to the stress of my job.
As I reflect, I can see how my brain deteriorated. When I think about the last decade of my life it’s like watching a three hour greek tragedy in my head. It was gradual. In ten years I went from being a vibrant, social, work-aholic to the current version of me, which I despise. Anger outbursts, and complete lack of filter are two of the worst qualities that surfaced during the earlier stages of my collapse. Emotional instability and the inability to make any decisions never mind good ones followed. Eventually it came to the uncontrolled anxiety, depression and neuropathy that effected my muscles resulting in tremors, twitching, numbness, weakness and stabbing pains.
There were times when I was certain that I was being followed by a sadistic ghost carrying an ice pick. It would skulk around behind me and every so often, sneak up and jab the ice pick in my brain, ear canal, eye socket or leg. It also had the ability to enter my body and possess me like satan, causing me to roll my head back and forth uncontrollably for varied amounts of time. One day it would be five minutes: Another day for what felt like hours, but was probably only 1⁄2 hour. Reflecting back on some of my worst moments, I’m confident Linda Blair’s character in the Exorcist and I could have been BFFs. Granted, I couldn’t move an armoir with my mind, but there were plenty of times I wanted to throw the PC monitor out the second story window because of some erroneous internet outage, or cryptic error message. I learned to stay off the internet and out of e-mail on the days I was had“flares”.
A flares is the technical term for when you have a sudden worsening of symptoms, usually because there was a rapid die off of bacteria. The bacteria cause symptoms, but the dying of the bacteria, causes them to worsen. There is a technical term for that too: A herxheimer reaction. Dying bacteria release endotoxins. That shouldn’t come as a surprise. Think of how bad road kill decay smells. I’m pretty sure I have a bambi sized amount of bacteria swimming around my organs. The endotoxins released during the dying process make the hostess (me) very ill. If you kill off a slew of bacteria too quickly, you can actually kill the person along with the bugs. Imagine if you had a small beetle roaming in your garden and you spayed it with a pesticide and it temporarily became Godzilla in bug form until it finally died and disintegrated. That’s a herx. Flares are cyclical. You can only kill bacteria in the state of replication, so you have to wait for the drugs to work. If you are as lucky as I am, you have multiple infections with reproductive cycles that vary any where from 2 to 28 days. I host microscopic orgies on an ongoing basis and therefore live in a fairly constant state of flare. Woot woot for me.
Perhaps all this would be tolerable if escaping with a good book, or watching a good movie was possible. Reading became too monumental of a task because I couldn’t comprehend what I was reading. Following a plot line any more sophisticated than Tele Tubbies was out of the question. The thought of opening an e-mail sent me diving for the blankets. Noise and light may as well have been a jackhammer in my head and needles in my eyes. Thankfully, the salvation is that these symptoms come and go and fluctuate both in number and intensity compliments of the above mentioned herxheimer process. It is a box of chocolates kind of illness. You never know what you are gonna get, but the exception is the surprise centers always suck. There is no caramel center. It is more like dog shit center, or brussel sprouts. There are days when having neurological lyme is like living in a coma without the benefit of actually being unconscious. I lived through the hell for the days that were lousy, but bearable.
Most doctors would say three weeks of antibiotics would clear up all my problems lickety split. They claim: “There is no such thing as chronic lyme.” I think they are on the Aetna payroll. I have two words for those doctors: Fuck off. Any doctor that says that has his head so far up his ass he could do his own colonoscopy. Sadly there are very few lyme literate doctors that have studied and possess a thorough understanding of lyme. There are a handful of good doctors and research professionals that have listened to their patients and uncovered the truth about lyme: it can be chronic and incurable. One thing is for certain: insurance companies don’t want you to hear the truth because they will have a sudden and overwhelimg uptick in claims. We all know that would lead to the board of directors of health insurance companies having to hold off on purchasing those mega yachts and vacation homes in Vail. Good god, we can’t have that happen. It would collapse the economy for sure. Much better to let people suffer .
Fortunately, I go to one of the doctors that is responsible and willing to help. So what does help? What returned my brain capacity back to close to normal– at least to the point I can on my best days write journal entries? Bicillin Injections.
After four or five months of a couple different drug cocktails that made me lose weight till I was 112 pounds at 5’6” and still not able to speak a full coherent sentence my doctor had a new approach.
“How do you feel about intramuscular injections?’ she probed.
“Oh, I just love them, For years I have been hoping someone would find a reason to prescribe me gigantic needles I could give myself! Thank you thank you thank you.” I did not say.
What I did say is, “uh, will it help?”
“Yes. Bicillin is one of the drugs that can penetrate the blood brain barrier and therefore will help with neurological symptoms. “
She said someone would have to give me the shot in the ass. “Keep them in the fridge and take them out and let it warm up before you inject it so it will be easier and hurt less.” She continued, “It is very thick, so push slow and it will hurt less.”
I was getting the impression there would be some pain involved in this process. God didn’t give me many gifts, but he did give me a very high tolerance for discomfort, so I didn’t start vomiting on my shoes as she described what to expect.
Lastly, she said, “ If you go to your GP, he/she can show you how to give the injection or can do it for you if there is no one else that can help.” All righty then. I was geared up and ready to go, script in hand.
Since the drive home was two hours, I waited till the next day to hit the pharmacy. I use Shoprite because I can grocery shop while I wait for drugs to be filled. I need to minimize the number of anxiety attacks I bring on by having to leave the house so that is my strategy. “ Kill two birds with one stone I always say. After picking up a few essentials that include nothing that tastes any good, I sauntered up to the pharmacy counter. The same lady I usually see was there. When she saw me, the expression on her face changed. The smile turned into straight pursed lips and the eyes dropped to the floor. “Here comes that woman that takes 10 different drugs.” I could hear her say in her head.
The thought of an injection doesn’t make me want to vomit, but when I saw the price of a one month supply of these needles (which was a total of 20) I thought I would puke on the spot. My nice lady friend bent over the counter whispering with a wince in her eyes “This will be $781.00.” It was like if she whispered the amount it wouldn’t seem so bad. No wonder her smile disappeared and eyes looked to the floor. She was probably afraid I would reach over the counter and grab her by the throat. The words “fuck me” came to mind, but the woman seemed very nice, so I settled for, Gee- that is expensive and swiped my credit card.”
Upon exiting Shoprite, I darted across the parking lot to Liquorama and bought a gallon of tequilla. Then I took a swing by my MD’s office to take a lesson in how to give an intramuscular injection. I figured if I just walked in looking sick and pathetic I might get some sympathy and quick attention. That must have been memories of the early 70s swimming in the grey matter. When I asked the nurse for help, all I got was, “These injections were prescribed by a doctor from NY in NY State. Sorry, you are on your own.” Why didn’t she just add “bitch” on to that statement so it stung a little more. The words “Fuck me” popped up again. They pop up a lot actually. I just looked at her and said, “Really?” I turned around and walked out. I drove home feeling super pissed off. My day started off foul and now, verging on complete rage, I just wanted to drive into a telephone pole. The reaction on my husband’s face when I tell him how much I just spent on shots pushed me over the edge completely. I decided it would be better for me if he just found it on the monthly statement. Fuck him. Fuck this fucking fuckish disease. When I pulled into the garage and finally released the steering wheel I saw my knuckles were white and my fingers numb.
Once inside I shoved the box of shots into the fridge and googled intramuscular injections. You can find you tubes of anything. I watched several as well as read a few written instruction guides and realized, I could do this myself by injecting into my thigh instead of my ass. It seemed like the way to go as I just didn’t see my husband having the capacity for this.
I went back to the fridge deciding there is no time like the present. I pulled a needle out of the nice snug compartment and examined it. “I guess it is a rather thick liquid,” I said, turning the needle to and fro. It looked kind of like body lotion. I rolled the needle between my hands to warm up the serum- as instructed -to reduce pain. Then I reached into the cabinet for a shot glass. Shot glass. “There is irony for you,’ I snorted. I poured tequilla and quaffed it back. Then I got out the lidocane that I purchased along with the injections. It numbs the area to help curb the pain. That pain thing began popping up as often as the fuck me thing. I rubbed some on the location where I would insert the needle. The instructions said to wait a half hour for the numbness to take effect. What the hell, I did another shot of tequilla for added numbing effect and headed to the bathroom to stage the event. Alcohol is a no no when you have lyme but under the circumstances, I thought a little liquid courage was warranted.
When I walked into my bathroom, sterility crossed my mind. I glanced around the bathroom I hadn’t had the energy to clean for quite some time and suddenly saw germs swarming everywhere. I wiped the counter with a few Clorox wipes and fished a roll of paper towels out of the vanity. I layed a paper towel down and set the injection with the needle part encased in its cover so it was as far away from any germ surface as possible. I washed my hands and sat down on the toilet seat. As the buzz from the tequila started taking effect, I decided Ok it is time.
I picked up the alcohol wipes necessary to sterilze the site and used two to swab the area. After I swabbed, I realized I wiped off the lidocane which was the only thing that marked where I was numb. Hmmm. Dilema number one. I knew the general area so, I assumed I would be ok. I removed the protective cap from the needle. It was the first time I got a really good look at it. “Shit” I said. This is kinda long. And wide.” Little beads of sweat started emerging on my forehead and between my boobs. “I have to jab this into my leg” I said to myself, trying to talk myself into it.
I put the needle against my skin. I held it there for a while unable to push it in. Dilema number 2. I decided one more tequilla shot and I’d be good to go. I stumbled downstairs in my underwear and took another shot, went back upstairs and repeated the hand washing and sterilization process. Ok. Here we go. Again. I just couldn’t push it in. Oh god, I thought, just fucking give yourself the fucking shot already. Fuck fuck fuck. I pushed it in. I watched as the two inches of metal disappeared into my flesh. “Huh.” I said. That didn’t hurt at all. With the needle fully in, I started to push the plunger to dispense the drug. Oh my, it was a very slow process. If felt like pushing thick cake icing through one of those little decorative cake icing tips. It felt like an eternity. When the vial was empty I drew back the needle and quickly covered the area with another alcohol wipe. Next, I applied a little band aid and voila- done.
I stood up to clean up the mess and suddenly felt like a curtain dropped over my head. It started getting dark and I realized I was about to pass out. I sat back down. Oh god. Maybe three shots was a little much. Or, I just had one of my typical blood pressure drops. I rose again, this time hanging onto the counter top. I waited for a moment as the initial blackness faded and make a dash for the bed. I crawled in and woke up the next morning. My leg throbbed. I mumbled under my breath, “I will be doing this twice a week for the next three months. Good thing I have two legs.”
Featured Song: Come Alive – Foo Fighters. (This song is playing in the background of Act I Scene I of Addy & Allie.)