Chapter Two: Tumbling Down the Rabbit's Hole

“...I know you will not understand this, and it saddens me to say, even though you may be

standing next to me, I truly am worlds away..”

I quickly surmised, after leaving college, that staying with my grandmother (my “Nonna” - it’s Italian) while I was sick, was ultimately the best place for me to be.

Once the living arrangements were settled, I contacted a well-known Lyme Specialist in Mt. Kisco, Dr. Daniel Cameron, and was immediately put on Amoxicillin. It’s funny, but at the time I was almost relieved, thinking that this nightmare was coming to a close – FINALLY. I had absolutely NO idea how naive that thought would turn out to be.

At my appointment, my doctor had neglected to mention that the bacterial infection I had was actually in the same family as Syphilis (NOT transmitted the same way!), and that those who had the great misfortune of contracting either infection experienced a phenomena called a “Herxheimer” reaction (narcissistically named after the doctor who had discovered it) when put on the correct medication. At the time, I had absolutely no idea what a Herxheimer (a dog perhaps??) was – all I knew was that within a week of taking the medicine ALL of my symptoms became, to my utter disbelief, worse than ever!!

Life was almost unbearable now, every second seemed like a millennia of excruciating, bone-crushing pain, coupled with the torment of my deteriorating mental, emotional, and physical state. The term “pathetic” was what my father’s mother had used in describing this sudden lapse from complete health to near death in such a short time span. Looking back, I’d really have to agree with her, it was absolutely pathetic.

When I told my doctor that the meds must not be working because I was worse than ever, he explained...finally, that when this type of bacteria (spirochetes) die, they release neurotoxins - Get That...Neuro-Toxin (Aka: a POISON that acts on the nervous system) which greatly exacerbate symptoms until the body is able to excrete them. Hmm - Not cool...

He said I had a very long road ahead of me and that I should try and count my progress by months, not days, as the bacteria had a life span of over four weeks, and the antibiotic only worked during certain stages of their life cycle.

As I began to realize how long it might take for me to experience health again, I became terrified I wouldn’t make it. If each second felt like years, how on earth could I survive months of feeling like this??

There was also the matter of food that was of concern at the time. I found myself trapped in a 24-hour panic attack that seemed to vibrate from my very core, and this made it nearly impossible to eat. Even the thought of food made me nauseous and I could barely keep down the medicine I needed. As a result I lost weight rapidly – 30 pounds in two months (not bad...), now weighing only 90 in total. Looking in the mirror at this time was a horrific experience, one that I avoided as often as possible...who WAS that person?? – I was so sickly looking that I didn’t even recognize myself anymore...

My Nonna started buying me “Ensure” which seemed to be agreeable to my stomach and that, as well as adding a probiotic to my regime of medicine, ultimately kept me from wasting away.

To make matters worse, my body was now completely unable to go into sleep, and given my family’s history of alcoholism and drug abuse, I refused to take any kind of sleep aid that I might become addicted to – I didn’t want to end up with another problem on my hands (logical thought - very STUPID idea). Because of this, it’s safe to say that I didn’t sleep for nearly six months. From this I can tell you with quite certainty, that sleep-deprivation really IS a fabulous form of torture.

Every now and then I would pass out from sheer exhaustion, but was immediately gripped by those "slasher" movie-like nightmares and awoke shortly afterwards, covered in sweat, and more scared and tired than ever. I also was suddenly unable to drive, even if I tried to put the photophobia and agoraphobia aside, my mind was simply incapable of processing and coordinating the necessary bodily movements needed in order to complete the task.

It was so strange to experience this since driving had always been automatic to me – a "no brainer" and now, I simply couldn’t put it together. What was happening to me?! I kept thinking that this type of hell couldn’t possibly exist or even be described in its intensity. I concluded that torture following death would be merciful in comparison – at least those experiencing the latter knew that the end was in sight.

My mind continued to deteriorate and I eventually found myself completely unable to connect with reality anymore. I became convinced that I somehow had gotten stuck in a nightmare and was in a rather desperate need of waking. That notion, purely psychotic as it may be, seemed completely logical to me at the time because I could no longer even recall how this whole thing had all begun - that part of my mind had been lost as well.

The only thing I was capable of doing during this time period was put together elaborate cardboard puzzles. I spent all day and night putting together dozens of them in a vane attempt to escape my nightmare. In some fashion I felt the act of doing so was metaphorically helping me piece together my own experience – hoping it would help me recall what on earth had happened to me.

One day about five months into antibiotic therapy, which was now 250mg of Zithromax/day, I finally lost it. The combination of all my symptoms described above had me completely broken. I could no longer get through the day without fantasizing about suicide. I didn’t really want to die, but honestly felt that there was just nothing in me left that was alive.

What scared me even more than that though, was that I was also having severely aggressive, even homicidal, thoughts as well. A kind of rage I had never known coursed through my being, and I was afraid I would be unable to control it anymore.

Every inch me KNEW that everything I was experiencing was absolutely wrong, and it literally took all my strength not to act on those terrifying impulses. Even then though, I knew it would just be a matter of time, my resistance was getting weaker, and I actually felt that I was a time bomb just waiting to go off.

At this point I literally begged my entire family to take me to the hospital and have me committed. No one would oblige me though, they kept insisting that I wasn’t crazy – that I had Lyme and I needed to hang in there just a little longer. I tried to make them understand that I no longer had any hope of getting better, and was scared of what I might do to myself, or others, if I lost control, but no one would listen to me.

My last attempt to save myself led me to calling the doctor who had diagnosed me with Lyme – the psychiatrist I had seen at college. I called her late one night and begged her to have me committed, but my last cry for help was ultimately in vain. She immediately scolded me for waking her from a precious two-hour nap after a long 24-hour shift at the hospital she worked at. Then continued on to say that I was a bright, intelligent girl and that having myself committed would only ruin my future - that I had to be strong, take control, and get through it on my own.

I bowed in defeat at her words and decided that if I could no longer control the aggression and rage that was growing stronger everyday within me, that I would rather take myself out than lose control and inflict pain on anyone else. Later, I would learn that more than 30% of people who have my condition – nearly one out of three people who suffer the late stages of this illness, try to commit suicide, and I was fastly preparing to become one of them.

It was quite easy actually...one night, I casually asked my Nonna to drive me to the pharmacy so that I could get a sleep-aid called “Simply Sleep”, and convinced her to buy two boxes, rationalizing that it was a good idea to stock up on it. After having put the numerous pills in a jar and tucking it securely underneath some clothes in a drawer, I suddenly felt comforted by the thought that I had a way out if I needed it, and decided to try and make it through another week – like I said, I really did not want to die...