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. 


  1. alyson
    I am so sorry you are going through is horrible and so scary. I truly hope things improve quickly for you and you find yourself back at the 90% place you were before.

  2. Alyson, I don't know what to say. Seizures are so scary. I hope your new protocol will help and you never have to experience one again!

  3. Love you Alyson and thanks for sharing. Hope this is just another passing phase. As always, you are in my thoughts and prayers.

  4. Good work sharing this with the public, I think it helps people learn more. I am proud of you!!! Hang in there girl, love ya!!

  5. How absolutely terrifying! You've got me in tears over here. I am so sorry that that this has happened to you, but I thank you from the bottom of my heart for having the courage to hare it with everyone, because people really do know what Lyme & related diseases can do to those of us who are afflicted! May God bless, protect and heal you, and may you find all of the strength and comfort you need.

  6. My heart goes out to you. I spent four years battling Lyme but I am healthy now, almost two years from my last relapse. Hang in there.

  7. I'm sorry you have been expeirencing seizures, Alyson. I think sharing was a good choice. It's good to know what is happening with others in the land of lyme. I hope your new protocol will help and your seizures are over with. Many hugs to you. I DO love seeing pictures of you outside and smiling. :) Hang in there. XOXOXO

  8. Alyson,

    What you're going through is both scary and debilitating and I wish you only the best. I'm sorry you have to go through this. As someone who has gone through what you're currently experiencing I hope I can share some insights and hope. I had Lyme for about 40 years before the diagnosis so it inhabited every part of me. At times I had paralysis, stroke type symptoms, heart beating out of my chest for almost a year, significant memory and thought problems, and every imaginable symptom in almost every part of my body. Do your best to push through the treatments and cleanse the toxins. You are correct that you've got to get past the blood brain barrier to recover. You also may need to eliminate the cystic form of the spirochete (metronidazle). Fortunately there is another side to get to where the days get better, and there is a time when it's time to say good bye to antibiotics and focus on cleansing toxins and physically rehabilitating. I can't say that I'm in perfect health but so many of the lyme symptoms that troubled me throughout my life are gone. Your days can get so much better and I pray that they do. If you're taking supplements be careful how they mix with your antibiotics. You are wonderful to be sharing your experiences because it is true that Lyme so often is a disease that receives little sympathy, yet the patients truly do go through so much. You deserve praise for you efforts. Sometimes though when working so hard to recover there may be value in taking stretches of time where you do your best to put lyme out of your mind and try not to dwell in the lyme world. It's not easy but at least in my case I found it helped in my recovery. Good Luck and God bless you. You can get to feeling better and I hope you get there soon.