My journey through Lyme Disease- Healing my body and mind.

My Illness

sleeping on the couch_1toesies


I was bit by a tick in a Lyme-endemic area in Italy in 2004 and got a full-body red rash and a flu-like illness. I was not treated at the time and within two weeks was fully recovered. Following my recovery from the rash and flu-like illness, I returned to a very busy and active life in the United States. I continued mostly symptom free until 2009.

In 2009, I went through a stressful time in my personal life and at the same time, began intense training for mountain bike racing. In addition to the emotional and physical stress, I was traveling a ton for work and working long hours in the field away from home. In the winter of 2009, my symptoms began to appear. At first, it was a noticeable fatigue that made exercise and work more difficult, but not impossible. Then, I began to have contantly sore joints and muscles, no matter how much time I took off of the bike or the gym. Eventually, my fatigue became so bad, that I would be so exhausted from light exercise that I would not have enough energy to take a shower or go to work. A 3 mile run would put me in bed all day.

I gave up CrossFit and running, but stubbornly held on to riding my bike. I ignored my symptoms and continued mountain biking. I come from a family that does not give up easily when it comes to physical endeavors. Finally, in the winter of 2010, I was so dizzy, lightheaded, and weak that I was forced to stop riding my mountain bike. I could not cognitively keep up with the trail in front of me. It wasn’t safe. I took up lighter activities such as walking and yoga, but gradually, I was too weak to do either one of those. Going for a walk around the block would sometimes cause such a flare in symptoms that I would feel like  I needed to lay down on the sidewalk. So, all physical activity was stopped.

I continued to get sicker and had to quit doing field work, because I no longer had the energy. Eventually, it became difficult to even work in the office. I had so much congnitive dysfunction (short-term memory loss and confusion) that I would stare at my computer for hours trying to figure out what I was supposed to be doing. Sometimes I would get confused and forget where I was going just trying to walk a couple of blocks to get my lunch. If I was feeling exceptionally bad, I would have trouble speaking (word-finding, stuttering, unable to finish sentences).

After seeing 7 doctors, including general doctors and specialists, getting multiple MRI’s, a CT Scan, a nerve-conduction study, Echocardiogram, 48-hour heart-rate monitor, TONS of bloodwork, etc., I was diagnosed with the following:

  • Autoimmune thyroiditis
  • Inflamed nerves (no explanation other than that)
  • Post-viral infection syndrome
  • Endometriosis
  • Raynaud’s Syndrome
  • New heart murmur (mitral valve prolapse)
  • Adrenal Insufficiency
  • Chronic Fatigue
  • Fibromyalgia
  • Depression

I took the depression possibility very seriously and got evaluated by 3 therapists, who all said that I was not clinically depressed and did not recommend I take antidepressants. I was put on thyroid medication and I hoped that was going to do the trick. However, my symptoms continued to progress.

At the culmination of my illness, I had all of the following symptoms:

  • Overwhelming fatigue
  • Exercise intolerance
  • Migrating joint pain (knees, elbows, shoulders, back)
  • Sore and achy muscles
  • Raised and sore muscle knots
  • Unstable blood sugar
  • Dizziness
  • Brain fog (mental confusion)
  • Difficulty speaking- struggle to complete sentences, word-finding, slight stuttering
  • Mystery round skin rash on my leg, close to my ankle (consequently, where I got bit by the tick)
  • Migraine headaches that were sometimes difficult to sleep through
  • Inflamed and painful nerves on the left side of my skull and jaw
  • Ringing in left ear
  • TMJ pain
  • Sharp stinging pain in my left eye
  • Left eye would randomly close slower than the right one
  • Sharp pain in my salivary gland on the left side when I would begin eating
  • Muscle/eye twitches- electric shock kind of feeling that would make them twitch
  • Clumsiness/poor fine-motor skills
  • Tingling, numbness, and weakness in left foot
  • Weakness in left leg, unable to go up on toes of left foot
  • Chest pain
  • Heart palpitations
  • Lightheadedness
  • Severe abdominal pain (passed out a couple of times due to pain)
  • Night sweats
  • Swollen, red, and painful toes (especially on left foot) with red dots on bottom of toes
  • Nausea, poor appetite
  • New food allergies: gluten, soy, eggs, dairy
  • Extremely painful menstruation (diagnosed as endometriosis)
  • Cervical dysplasia
  • Hypothyroidism
  • Very cold hands and feet
  • Swollen and painful lymph nodes
  • Recurrent bladder infections (had not had a single one my entire life prior to this)
  • Air hunger- feeling like I can’t breathe or get enough oxygen
  • Involuntary twitching of my head
  • A feeling of vibrating in my head and body

I felt like my body was falling apart and no one was able to help me. I could no longer do ANY physical activity (including yoga) and did not have the energy or focus to socialize. My life was crumbling and I had no answers. It was suggested that I get tested for several infectious diseases. My Western Blot blood test came back positive for Lyme Disease in April 2011. Then, it all came back to me. Italy. The tick bite. The rash. The flu. Finally! Some answers!

After my diagnosis, I started treatment with my doctor in May 2011.

6 responses to “My Illness

  1. Jax Norris says:

    I had no idea you were going through all of this! I mean, I knew you had Lymes, but I had NO IDEA it had affected you like this!! My God, Lyndsey!! I owe you so much thanks for helping set me on the path I’m on now – the time you took to talk to a stranger about an off-the-wall guy you knew…I love you so much! We don’t talk often and that’s truly sad – but I think of you all the time!! My life – the life I LOVE – wouldn’t be the same had we not crossed paths when we did! Keep Going – we’re ALL pulling for you!!

    • lilneeds says:

      Thanks, Jax. I am so glad that your life turned out to be a happy one. I still remember that phone conversation with you clearly. I hope to make the trek to North Carolina in a couple of years. I would love to meet your children some day! XOXO

  2. Thank you Lyndsey for writing this post. It so clearly outlines what is have to Chronic Lyme Disease.

  3. Kelly Ruffcorn says:

    Thank you for sharing your story! Could you tell me the doctor you saw to get treatment for your Lyme? I would be so grateful!

  4. Suze says:

    Thank you, so much for writing this Lindsay. I could not work out why when I went under my infra red ( all night ) I became so ill so quickly. I kept thinking, it can’t be the infra red, surely. No one gets ill under infra red….do they? I track my symptoms every day, hour by hour, food diary’s again, hour by hour. I couldn’t fathom the flare up 3 months ago…now I know, it was the infra red. That’s when I bought it, to help make me well…so I thought, mitochondrial maintenance and all that. I am allergic to so many foods now, I’m scared to eat. Today, I broke down and asked God, the universe, anyone…. instead of showing me through experience, show me what’s going wrong another way. I ate my tea tonight, just veg and a tiny bit of meat, and immediately felt so tired I could barely make it upstairs, I just needed to lie down desperately. I woke up and thought – the only thing I hadn’t written in my journal was the infra red….. but it couldn’t be that, could it? People don’t get sick from infra red? I googled it, expecting nothing. Then your blog came up. Thank you so much. I could weep with relief, I really could. My journey has been exhausting and I’ve felt so bloody alone. Thank you again. Xx suze


Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: