Can Lyme Disease Cause PTSD?

Yes, yes it can!

I awoke with a start to the sound of the front door rattling dramatically. Glancing at the clock by our bedside, I see the red numbers, 2:32, glaring back at me. Is someone breaking in? Are they already in the house? Staring frightened into the darkness for a minute, I await the appearance of a dark shadow in the doorway of our bedroom. Nothing. My eyes are heavy with sleep so I lay my head back down. The wariness of my days’ battle outweighs my fear of an intruder.

As soon as my eyes close I hear it again, only louder and more aggressive. My heart is racing out of control as I whisper to Will, “Honey, wake up. I think someone is breaking in.” He reluctantly rolls over, accustomed at this point to my overreactions. “I don’t hear anything. I’m sure it’s nothing.” But before he can get the word ‘nothing’ out of his mouth the door rattles and bangs in its jamb and then the bed starts rocking. My husband leaps out of the bed with an unusual agility and runs to our bedroom door. He’s shouting at me, “It’s an earthquake, get in the doorway!”

In that moment, my weakened state arrests me. I’m frozen with fear. My whole body begins to quake along with the bed I’m still sitting on. My heart races in a way that makes my limbs feel cold and numb. I know that I can’t stand up and move quickly. At this stage of my Lyme disease treatment, every time I stand up my head spins with dizziness and I feel momentarily faint. I can’t run, I can barely walk. I’m reminded of a nature video where the wounded animal becomes the easy prey of a wolf or a tiger. Finally, fear urges me out of bed and I stumble as though I’m in the Fun House at the carnival to where Will is waiting for me with open arms and stunned eyes.

My vulnerability on that night echoes in my mind. It is an extreme example of the trauma that Lyme warriors face on a daily basis and a pertinent anecdote showing how Lyme disease can cause PTSD. On that night, once I reached the relative safety of the doorway, I collapsed to the ground, curled into a tiny ball and wept tears of dread. My body, already in a constant state of flight or fight, was too vulnerable and weak to withstand such a shocking experience.

Yes, Lyme disease can cause PTSD

There is a reason why those in treatment for Lyme disease are called Lyme Warriors and refer to their months, or years, in treatment as a battle. The things I experienced during my battle were traumatic, on a daily and constantly recurring basis. Almost immediately upon starting treatment my body no longer felt like it belonged to me. The sheer number of symptoms, that included nearly every organ in my body, were incredibly overwhelming.

After the morning, a few weeks into my treatment, when I discovered that my tongue had turned black overnight, I stopped looking at myself in the mirror. The woman staring back at me terrified me. Her skin was ashen and appeared papery thin. Off and on I was getting a rash on my face, neck and chest. My eyes were devoid of life, instead reflecting a dark cave. I dreaded taking a shower, not only because the exertion was more than my feeble body could muster, but because I was losing so much hair.

Why does Lyme disease cause PTSD?

Post traumatic stress disorder (PTSD) is defined as “a psychiatric disorder that may occur in people who have experienced or witnessed a traumatic event such as a natural disaster, a serious accident, a terrorist act, war/combat, or rape or who have been threatened with death, sexual violence or serious injury.” (I added the bold to highlight what happens during Lyme treatment.) According to this definition it only takes one traumatic event to cause PTSD. As a Lyme warrior, I experienced traumatic event after traumatic event, for the better part of two years.

There is a powerlessness that surrounds your every day. Your body is under an intense amount of stress as it fights off the bacteria invading your body. Due to brain fog and memory loss you find it hard to trust your own thoughts. Lyme rage and hormonal dysfunction can take over your emotions, leaving you to feel emotionally inept.

I was unable to shower without my husband present. My driving privileges and ability to handle a knife in the kitchen were rescinded for a stretch of time. I was too weak to walk more than a hundred feet or so, let alone up a flight of stairs or, a sudden need to run to safety due to an earthquake in the middle of the night.

Worst of all, it felt like it would never end. I stared out my window for months, watching the seasons change from the confines of our tiny condo. When the bikes were dusted off in the spring and the skis came out of the closet in winter, I feared I would never be able to enjoy such activities again.

How did you know you had PTSD?

I didn’t realize I was suffering from PTSD until my symptoms began to subside and I was re-entering life. When I began having flashbacks of those dread-filled days, I knew something was wrong. I would be walking along the path with my dog on a beautiful day when I was suddenly that weak and feeble woman again, struggling to make it home. Or, I would be at the grocery store, sound of mind, when suddenly I was having a panic attack. The fog that surrounded me that day I got lost and had to call my husband to help me navigate the aisles, left me breathless and sweaty. I began to feel agoraphobic and emotionally unstable again, senselessly snapping at my husband. I had finally beaten the monster ravaging my corporeal only to be assaulted by a new beast attacking my mind.

How do I get help with PTSD?

As soon as I noticed the flashbacks I sought out help from my Lyme-literate doctor. She recommended to me a therapist who specialized in PTSD patients and EMDR therapy. I had tremendous results with EMDR therapy and I highly recommend it. It became apparent almost immediately that my chronic PTSD hadn’t actually started with Lyme disease. It had been caused by the years of chronic illness prior to my diagnosis. I had felt so unheard and invalidated for decades as I struggled through life. EMDR allowed me to process though fears, feelings of vulnerability and finally, I achieved validation.

Honestly, I have come to believe that psychotherapy should be a part of your Lyme disease treatment protocol. There are so many bizarre and inexplicable symptoms that come along with the process, that I think this is a necessary component. I also believe having a peer mentor is an invaluable tool. I encourage you to remember this often overlooked reality of Lyme disease. Be your own health advocate and reach out for help. You can look into the peer mentor program here and also read more about my journey through EMDR therapy here. Stay strong Lyme warriors and don’t forget to reach out for help. There’s nothing more courageous than admitting you’re vulnerable.