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Pennsylvania Mom Gets Lyme Disease, Turns Into Advocate for Other Sufferers

Jaclyn Hughes

You know that saying, “Everything happens for a reason”; well if you’re Leigh O’Connor Wolfe, you may be seriously giving that common phrase some doubt this year. Leigh happens to be anything but a wallflower; very active, incredibly kind, athletic, a giving Mother and wife, and an educated nurse. I know these characteristics about her, because I have had the privilege of knowing her for over 20 years. Naturally, when I became aware of the news that she had fallen notably ill, I was concerned.

Leigh is one of those people that adores being outside in nature. Kayaking, hiking, cycling; you name it, if it can be done out in the sunshine, she is all over it. When you love being outdoors, you tend to increase your chances of interacting with animals. Animals so tiny, that their bite could be so insignificant that you don’t even notice it, until it begins to attack your neurological system. On May 11th, after being unbelievably sick for weeks, Leigh came to the frightening conclusion that she had Lyme disease.

Leigh and her son and daughter

Leigh with her son and daughter

This is Leigh’s story of how a lovely walk in nature with her daughter threw her 2015 for quite a loop:

Leigh’s symptoms following the tick bite began in just seven days:

“My first symptom was a feeling of air hunger; that was the start of my misery. Second, horrible palpitations with rapid heart rate. I awoke in the evening with horrific chest pain which lead me to a hospital stay, emergent cardiac catherization, and several other tests. They could not find anything wrong with me, but by this time I honestly told the doctor “I feel like I’m dying.” Drama? No. Sincerely not. I really felt that way. I was discharged home to follow up with a neurologist and a diagnosis of “anxiety.” I am not an anxious person and I told them that. Regardless, they sent me home with a Klonopin prescription. I continued to feel horrible, and now my body would shake from head to toe. I thought I was having some kind of weird seizure. I also developed a rash on my back, but thought nothing of it. Neurologist told me to consider the Mayo Clinic. He didn’t know what was wrong, but did order a lumbar puncture. Luckily that was normal. I continued to feel very sick with new symptoms daily and still no answers. Night time was absolutely horrible. I would have feelings of electric jolts along my chest and back. My arms and hands would go completely numb. My chest felt paralyzed. I began to wander if I had ALS or Guillain-Barre Syndrome. I had to crawl up my stairs at this point. As a nurse, so many things ran through my mind, and I was unbelievable afraid. I felt life as I once knew it was over. I felt I would be crippled in no time. Mentally I was exhausted; I wanted to die. Nausea, vomiting, and loss of appetite now started to begin. I lost a total of 25 pounds in one month. The thought of food made me want to vomit. I was so unbelievable tired, but couldn’t sleep due to my hands going numb and feeling of air hunger. It was misery. One morning I woke up and suddenly couldn’t put two words together. I discovered exactly what brain fog was. I felt my head was in the clouds. I would sweat profusely. I cried daily wandering what was wrong with me and would I ever have my life back? It was the morning I woke up with a high fever, stiff neck, hip and knee pain when it occurred to me. “I HAVE LYME DISEASE!” After several days of bed rest and at least a dozen physicians scrambling for a diagnosis, and here it was me that figured out my own diagnosis. My Lyme titer was negative but did you know that test is actually 50% inaccurate? I found a wonderful doctor who looked at my clinical symptoms and said to me “You have a severe case of Lyme disease.” She immediately started me on Doxycycline. “


Leigh during her battle with Lyme disease

Where were you at when you were bitten?

“It’s known that ticks are very prevalent in Pennsylvania. My daughter wanted to go for a nature walk on March 29th. It was the first nice day since winter and the woods were thick with high grass. I knew ticks and Lyme were bad, but I just didn’t pay enough attention. I will now!”

lyme 111

Map of U.S. states with higher risk for Lyme Disease

Misdiagnosis is a growing problem for Lyme patients, can you describe what your diagnostic experience was like? How does the medical team work through their process of elimination to obtain that final diagnosis of Lyme disease?

“My experience was awful. I was told that I possibly had M.S., a brain tumor, an adrenal insufficiency, a carcinoid tumor, anxiety, a Coxsackie virus, and so many others. I wish the doctors would have just said “I don’t know.” I figured it out, and then had to be my own advocate. I had to ask for doxycycline. The entire experience has made me lose faith in our medical profession”.

Leigh suggests learning to identify a tick while outdoors

Leigh suggests learning to identify a tick while outdoors is key

Do you require a specialist for your ongoing care?

“I will be following up with a Lyme Literate MD”.

What does your treatment program look like?

“It’s 60 days total of Doxycycline. I have done my homework, and from what I read, you need to compliment the antibiotic with herbal supplements. I also have been taking probiotics, grapeseed extract, turmeric, olive leaf, green tea, cat’s claw, oregano oil, milk thistle and several vitamins. I also drink a lot of lemon water which helps aid in the detox process.”

Has your experience with Lyme disease hindered your love for the outdoors, or limit how often you plan to get outside in the future?

“I have always loved the great outdoors. We loved to camp, hike, kayak, bike, and fish. I would love to say this hasn’t affected me but it has. I will continue to do everything I love but with some fear. I will be very cautious and take precautions to prevent tick bites. I plan to use lemon grass oil, eucalyptus oil as a natural method. However, if I go into the deep woods, I will be using Deet.”

Leigh outdoors again, and back on her feet!

Leigh outdoors again, and back on her feet!

What’s the mental frame of mind going through this whole ordeal? I’m guessing it’s rather frightening not knowing what’s making you ill, then learning it’s Lyme disease, and how that may take a toll emotionally speaking…

“I can honestly say those were the darkest days of my life. I was so afraid. So very sick. Depression set in for many reasons. I could not get an answer from doctors and was tired of hearing “anxiety.” I couldn’t be a good Mom anymore; I was confined to my couch. If I were to get up, I would become dizzy and so sick. Not to mention the extreme fatigue. I was off work. Financial stress came into play. It sounds dramatic, but I honestly wished to be dead. I couldn’t face going one more day feeling the way I did. It’s hard to imagine what it feels like and you’re probably thinking “but I have a family.” I knew this, but I just couldn’t help feeling that way. I was living a nightmare, a visit to hell is what I tell people it felt like.”

There appears to be a fair amount of misconceptions regarding the ailment; what tips or clarity can you provide to others?

“I will admit, I knew of Lyme and the typical aches and fatigue that go along with it. Lyme is so much more than that. It strips everything, your health, you mental well-being, your relationships. Several people in my life thought I was experiencing severe anxiety and felt I should just get up and move on. That in itself was frustrating. I thought these people knew me? I’m always up and about, I never let grass grow underneath me. I love life. I’m not a lazy person. I without a doubt fell into a dark depression. I hate to even relive it.”

Prevention is absolutely crucial where Lyme is concerned, what steps are you taking/should others be taking to safeguard against tick bites?

“I have done lots of reading regarding this. I would pull a tick off my dog weekly. I never liked to use chemicals on her, when I did she wasn’t herself. In a 4 ounce spray bottle of water, I add 20 drops of lemon grass oil, and eucalyptus oil. I spray this mixture on my family and the dog. Since I have been using it, I haven’t seen even one tick on my dog. I also use Rose Geranium Oil. One dab behind my ears and on my wrists. Literature says ticks hate the smell! If we do go into the deep woods, I will be using Deet.”

Some key symptoms of Lyme disease are:

  • Headaches
  • Fatigue
  • Rashes or a “bulls-eye” circle around the tick bite
  • Loss of facial muscular ability
  • Pain; joint stiffness, muscular pain
  • Cardiac issues; heart palpitations, racing heartbeat
  • Shaking, jolting, uncontrollable movements

There are a reported 300,000 new cases of Lyme discovered annually, so please do your research, and always be cautious outdoors on the lookout for tick bites. For additional self-help and guides on Lyme; please visit the CDC website. Thank you to Leigh for sharing her story, and we wish her all the best in a speedy recovery back to excellent health!

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