Saturday, May 19, 2012


"Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen." -Winston Churchill

This is an extremely difficult post for me to write, and for some people it may be equally hard to read. I knew I needed to write this post for myself, but I really wrestled with the decision on whether to publish it or to keep it private.

The main reason I keep this blog is to help my family and friends understand my disease, and--because the vast majority of my illness goes on behind closed doors--even some of my closest friends have never seen the wrath of this disease on my body. If I don't feel well, I stay home. Since May is Lyme disease awareness month, I've decided to publish it.

A few weeks ago, my heart started pounding. No big deal, I thought, as I took some deep breaths. Then my throat started going numb. Suddenly, my insides felt like they were on fire, and I felt heat spreading slowly throughout my body like a wave. I felt dizzy and nauseated and thought I was going to pass out. My heart galloped like I've never felt before for around 20 minutes.

I was fully conscious, but I felt completely out of it and trying to form words was incredibly difficult. Next my body started shaking and my muscles started jerking and convulsing. I was so scared and all I could think was that I was having a seizure. After the episode was over, I was left with a dizzy/lop-sided feeling and absolutely no energy for ten hours. I could only get up to go to the bathroom.

I got in touch with my doctor and she felt that my autonomic nervous system was going haywire from too much die-off. (As the Lyme bacteria are killed, they release a toxin into your body faster than your body can process it, causing a huge increase in Lyme symptoms and making you feel temporarily like hell; this is called a Herx reaction, and it is a "good" thing because it means the bacteria is dying.)

The next few days were rough. My anxiety came back. I started having panic attacks. My joint pain came back. My memory started slipping again, and I started going downhill really fast. I stopped my new medicine and I went back to two shots a week instead of just one (we were in the process of weaning from three Bicillin injections a week down to one a week).

Then, last week, I had another episode--this one even worse. First, I started experiencing visual disturbances, similar to those I get from migraines. I was seeing spots and my eyes would not focus. Suddenly, I felt like passing out. I laid down and noticed that my left arm felt completely wet. I touched it and it was, of course, not wet. Next it felt like someone was putting Icy Hot all over my arms and legs.

Then I started shaking and my muscles started jerking and convulsing to varying degrees, which lasted for a hellish 45 minutes. At one point my left arm clawed up and started flailing. At the same time, I felt what I can only describe as a bubble in my right ear moving slowly across to the right side of my brain.

The whole time, I felt a bizarre zen-like calmness, which was completely unnerving, since my body was freaking out and should have been coursing with adrenaline. I will take calm over panic any day, but it was alarming.

We now think both episodes were likely seizures. Seizures are actually a fairly common symptom of  Lyme disease. My doctor wants me to wear a heart monitor for 30 days and to have an EEG to test for seizures. There have been other times during my treatment that I suspected I may have been having seizures, most notably during treatment of my co-infection, Babesia. This is a video of what I looked like during the episode (please note, this is NOT ME in the video).

The experience was deeply traumatizing. Losing control over your body is absolutely terrifying. It's hard for me not to dwell on the fact that it may happen again, especially when going out in public. Going from over 90% better last month to having seizures this month is heartbreaking.

But I don't want to live a half-life where I dwell on what ifs. I'm trying hard to reach out and grab life by the horns and not let it pass me by, because when you have a chronic illness, it's so easy to just let life slip through your fingers. I'm just taking it a day at a time.

It's been ten days since the last seizure and I haven't had another one. I finished my last Bicillin shot last week, took a week off of treatment and started my next protocol yesterday. I'm back to oral antibiotics, although in all honestly, really I'd rather have a shot three times a week than pop so many pills everyday. But those pills are what keep me functioning, so reminding myself of that makes it a little easier to swallow them down.

The most difficult part of this disease is knowing that it could have been prevented. When caught and treated right away, Lyme disease can be cured; untreated for too long and you can end up fighting for your life. When I think back on the decades of countless doctors I saw over the years since my first tick bite as a child, not a single one of them was able to recognize Lyme disease, causing a treatable disease to turn into what could likely be a life-long battle. 

What I want more than anything is to see a change that starts with education. Recognizing the early symptoms of Lyme disease is crucial in keeping the disease in its treatable stage. Please take a moment to read this article about the top ten tips to prevent chronic Lyme disease. 

Wednesday, May 9, 2012

Just A Passing Phase

Whenever my Lyme disease doctor utters the words, "It's time to change your treatment protocol," it's translated in my brain as, "The shit's about to hit the fan!" I have been in treatment long enough that I have come to recognize a distinct pattern in my behavior when it's time to make the switch to a new treatment.

The first thing that happens to me is that I go into a strange mourning period, known as The Morticia Addams Phase of my treatment. This is the time to find me dressed in head-to-toe black clothing, banishing all smiling from the entire household, and sunk into a miserable, deep depression (usually involving particularly large quantities of ice cream.)

I always need to take a few days to grieve when I have to begin a new treatment protocol. Letting go of what is working for my body and accepting that things are going to be unpleasant for a while is a very difficult thing to face. It means the end of whatever particular form of torture--whoops, I mean treatment--was bringing me relief from the myriad symptoms of Lyme disease.

After my mourning period is over, I morph into The Alice Brady Phase of my treatment. With a sudden burst of energy from out of nowhere that can be likened to a heavily pregnant woman overcome by intense nesting urges, I suddenly fly into a cleaning frenzy as I start prepping my household for the Great Lyme-quake that's about to hit the house once I pop those new pills into my mouth.

If you were to get up for a midnight snack, you might bump into me organizing the Tupperware cabinet, frantically chasing dust bunnies, or lining up bags of unwanted items in the attic for Goodwill. With the threat of me being down for the count for an unknown period of time, this is likely the last time the house will see a sponge or a broom for a very long time.

The burst of energy is usually short-lived. Enter The Cowardly Lion Phase of my treatment. This is the part where I forget all about my strength and bravery and all of the hardships I've successfully overcome since my battle with Lyme disease began. The what-ifs come raining down on my head and knock me out with fear. How sick will I have to get before I start feeling better? How am I going to get through this? What if I can't handle the pain? What if a dodo bird walks down our street and I'm too exhausted to grab my camera and take the photo that would have turned me into a millionaire?

Like a death sentence, The Cowardly Lion Phase of treatment usually has me counting down the hours, minutes and seconds until it's time to begin the new treatment protocol. I'd like to say that at the last minute, I discover my courage and face those new pills like a true champ. Sorry, but no. However, sometime after I'm knee-deep in a nasty Herx, I enter into the final phase of treatment.

(Drum roll please......)

Last, but not least, the hardest, yet most rewarding part of treatment: The Santa Claus Phase of treatment. With the beginning of a new treatment comes the most severe pain involved in battling this debilitating disease, and in these moments I am profoundly affected by the help and generosity of others. Like Santa Claus, I find myself wanting to share the joy with others. This is the part of treatment where life is often covered in a beautiful, soft blanket of snow. With The Santa Claus Phase of treatment comes the hope of a cure and the magical beauty that is this crazy, painful, messy beautiful thing called life.