Tuesday, August 23, 2011

Hell on Earth

In March of this year, my doctor decided it was time to pull out the big guns and instructed me to take a very high dose of a medicine to treat my Lyme disease co-infection Babesia. She apologized profusely and warned me that such a high dose was going to be bad. That was the understatement of the year...

Several months later, I am only just now comfortable talking about what really happened when I took the medicine that--although I didn't know it at the time--would give me my life back. It was the most traumatic thing I've ever been through and I've never been more sure that I was going to die (obviously, I was wrong, thank goodness!). I had no way of knowing whether the medicine would help, or worse--do irreversible damage to my incredibly frail body.

Below is the post that I wrote a few days after my ordeal. I knew I needed to write it down in order to heal, but I never planned to let anyone see it. Now, here I am, five months later--publishing my rock bottom.

[When I woke up on Thursday (March 31st), I felt really great. That was the day that I was to start my new medicine. Mentally, I felt strong and optimistic--I was ready! So, I took my first pill and waited nervously. It kicked in after an hour or so and Herxed me right away, but it didn't last that long. I paused, regrouped, and decided to go for it--pill number two, down the hatch!

Pill number two was tougher--the Herxing was bad--and after that, the rest of the day just started to blur together in a clump of misery. It was a very tough day and my Lyme symptoms were having a heyday, but all in all I made it through four out of five of the pills that I was supposed to take. That was my breaking point--my body let me know in no uncertain terms that that was all it could handle. To this day, I honestly believe that five pills would have overdosed me.

I took my last pill (the fourth one) on Thursday at 5 o'clock. Around an hour later, I was stricken by the strongest vertigo I've ever experienced. Around 11 P.M. on Thursday night, my dear exhausted body FINALLY collapsed into a fitful slumber. There is simply no way I can put into words the hell that my mind and body went through on Thursday. However, Thursday paled in comparison to Friday. Four hours after falling asleep, at 3 A.M., day two began.

I assumed that by the second day the dizziness would have worn off, but not so. In fact, it was worse. Any time I moved, I became so dizzy that I would dry heave. I couldn't even sit up, but as long as I laid completely still, the dizziness was, for lack of a better word, tolerable. Any time I had to go to the bathroom, I had to crawl. As I sat on the toilet, I had to hold the wall on one side and the sink on the other side to keep from falling because the room was spinning like it was being sucked up by a tornado.

As the sun started coming up on Friday morning, I was beginning to doubt everything. I was starting to believe that I was feeling sick because of probably nearly overdosing my scrawny body with such a strong drug. And that is when the MEGA Herxing started. If you've never seen a Herx before, it can be quite scary. Some are big, some are small. Some last a few minutes, some can drag on for weeks. I have had many Herxes before--of all different kinds, but nothing even remotely close to what I experienced yesterday.

My body was slammed with full-body jolts that left me terrified, shaking, and physically/mentally exhausted beyond comprehension. As soon as I relaxed, my body would start convulsing and jerking all over again. That was the first time I'd experienced that bad of a die-off reaction. I don't know how I made it through a whole day of that and the best way I can describe it is that it was hell on earth. I made it through with the help of a guardian angel of a friend who stayed by my side for two days.

I can write about the experience, but what I can't put into words is the agony that my body went through--especially the mental anguish the treatment caused my brain to endure. Being too weak to talk or sit up is truly terrifying. Lyme disease takes you so close to the brink of death. It dangles you off the edge of a cliff so you are literally staring death in the face. If you want to live, you will have to fight harder than anything you ever imagined possible. And if you don't want to live--too bad; quitting is not an option.]

I don't write this story for pity. I write for healing. I write for acknowledgement  Most of all, I write this story as a voice for others who are going through the hell of Lyme disease. If our stories are never told, then no one will know how badly we need a cure for this disease! But in order for that to happen, we have to make our voices heard, even though sometimes that means telling the stories that are the hardest to tell. I am one of the lucky ones--after my ordeal, I was able to function again and now, five months later, I am functioning at about 80% of what I used to before I got sick.

"Alone we can do so little; together we can do so much!" ~Helen Keller

(I've been struggling to hit the publish post button on this post for days. Here I go...Gulp!)


  1. Great post! Thanks for sharing, I know how hard it was for you! And so glad you are so much better now!

  2. You're so strong Alyson! Thank you for sharing your Hell with us. It is terrible what we go through and hopefully people will stand up and pay attention. Thank you for being a strong voice in the fight!

  3. Thank you for sharing your story about that evil (but ultimately blessed) drug!

  4. You are awesome my daughter!!

  5. Thank you for being brave enough to share the hell you went through. I know it was even worse than your description because people really cannot describe the horrors of feeling like you are going to die, being afraid to die, and at times begging God to let you die..ANYTHING but feel what you are feeling. I remember this summer laying by my husband in bed and thinking I am so glad I don't have to die alone because I was sure I was dying.
    I am so glad you are feeling so much better! It is amazing how quickly you have come back...your body is strong! I have a framed poster that is on my living room wall that says it all...It is of women from around the world in their native dress...and says, "Many strong and beautiful women".......You are. WE are...

  6. Wow sounds like flagyl. The bugs hate it and you can hear their screams as they die! Glad you made it through. Herxing is hell.

  7. It sounds horrible. Like Renee said, you can't really describe Lyme OR Herx. There are no words to describe the hopeless despair, pain, and panic.
    I'm dying to know two things; what was the medicine that you had to take five times a day, and how many days did you have to take it? OK, more than two things; how long did the herxing last? You said your friend was with you for two days, who took care of you after that?
    You know, I've often wondered how many Lymies suffer from Post Traumatic Stress Disorder (PTSD); these experiences are truly traumatic.

  8. Renee, you are right. It's that feeling of being at death's door that is just impossible to put into words. It's amazing what our bodies can bounce back from!

    Maria, no, it wasn't Flagyl--it was an anti-malarial pill.

    Shadow, shoot me an email at adventuresinlymeland@gmail.com and I will tell you what the medicine was. To answer your other question, my friend that was with me was there to help with the kids, but he is a massage therapist, and that is why I am still standing here. I was literally going out of my mind with pain and fear and was begging to die. He was able to calm my mind with cranial saccral. My husband was home for the weekend the next two days. I had to have full time help with the kids for a while, but I didn't have help for myself. You are right about PTSD. That was the most traumatic experience of my life.