‘I felt like I was dying. I’ve never been so sick in all my life.’: Woman shares 20-year undiagnosed, untreated Lyme Disease journey

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“The year was 1994. I just got married to a very charismatic and funny guy. Bob and I found a great house to rent in the middle of the forest, in a town called Mahopac, NY, about an hour north of NYC in the suburbs.

I was always a hard worker. In my younger years, I worked 50 hours a week as a waitress and I was in very good shape due to the physical grind of the job. I have a degree in psychology and dreamed of one day becoming a social worker or therapist. I was lucky enough to land a job at our local community hospital working in the medical records department and I also continued working part-time as a waitress. I was no slacker; I was a very hard worker with a good work ethic.

One night after showering, I felt a bump on my scalp that was itchy. I asked Bob to look and see what it was. It ended up being a fully engorged tick attached to my scalp. Bob yanked it out with a pair of tweezers and flushed it down the toilet. Back in 1994, we knew very little about Lyme Disease. I went about my busy life, but after a short time, I vividly recall sitting at my desk at the hospital and feeling a twitch in my eye as well as a feeling like bugs were crawling all over my legs. I was completely freaked out and I knew right away something was very wrong.

Sign promoting lyme disease support for those with it
Courtesy of Sue Gray-Weimann

I made an appointment with a neurologist I knew personally through the hospital. I told this doctor about my known tick bite and my now neurological symptoms. The doctor told me he didn’t think it was anything to worry about, but he would run the test to check for Lyme. Back in 1994, it wasn’t common knowledge about how faulty the testing is for Lyme and other tick borne illnesses. The doctor called me a few weeks later and told me the Lyme test was negative and I should move on with my life. He never prescribed a preventative dose of doxycycline, which would have saved me from the devastation that was about to take over my life. To this day, I blame this doctor for ruining my life.

As the years went by, I kept working two jobs up until I was nine months pregnant with our first son. Over the years, I began to develop symptoms I thought were odd, but I didn’t go to a doctor to be re-evaluated until several years later. Bob and I went on to have two wonderful sons, Robby and Ethan. It was now 2004. After the birth of Ethan, my symptoms started to escalate. I had a lot of anxiety, insomnia, brain fog, strange neurological twitches, and a band of numbness that formed across the small of my back. 

woman with lyme disease takes a selfie looking tired
Courtesy of Sue Gray-Weimann

I also had, out of absolutely nowhere, severe episodes of rage. It was absolutely terrifying because I had no control over it. Bob and I would fight daily and I asked for a divorce. Bob refused to leave at first, but I would tell him every day to ‘get out.’

I started seeing a psychiatrist in 2006, who immediately ordered an MRI of my brain. I was stunned to find out I was either dealing with Multiple Sclerosis or Lyme disease. After getting two to three other opinions, I was diagnosed on October 15, 2007 with Multiple Sclerosis. I was so scared and devastated. This is when Bob finally left me and our two young boys, ages three and seven.

Mother with Lyme disease lays in bed with her son helping him do his homework
Courtesy of Sue Gray-Weimann

I treated the MS for seven years under the care of a prestigious New York City neurologist and MS specialist. Over the course of the seven years, I would constantly complain to my doctor about depression, anxiety, and rage. This doctor would tell me repeatedly to follow up with my psychiatrist, never looking for answers.

At this point, I had been divorced for a few years and was very lonely. I decided I would make a dating profile and I posted it on a dating website. Before long, I was dating and fell in love with my current husband, Kevin. It was now 2013.

It was six months into my relationship with Kevin when I started feeling really rundown. The band of numbness in my back suddenly became a horrific source of nerve pain. After discussing this with my MS doctor, he admitted me to the hospital and gave me five days of IV steroids, which I now know is a big no-no for Lyme disease. The Lyme ‘exploded’ out of me, for a lack of better words. Bloodwork was done and my MS doctor had to call me with egg all over his face to tell me the news. ‘You have Lyme disease; you better find a specialist.’ I was so angry at him. I called his superior doctor who ran the treatment center and I remember cursing him out over the phone and then crying endlessly.

woman with lyme disease wears a lyme warrior hoodie
Courtesy of Sue Gray-Weimann

I was eventually diagnosed with Lyme as well as multiple coinfections in April of 2014. Kevin and I had already made plans to get married and blend our families in August of that year. I started IV antibiotics daily and did two to three bags of different medications every day. I felt like I was dying. I have never felt so sick in all of my life. I had to abruptly stop treatment to pack up my house and move from New York to Sandy Hook, Connecticut. I was so sick my family had to do all of the work as I lay on the couch pointing to what I wanted to keep or throw out.

The stress of moving my children and I into Kevin’s home with his two teenagers was way more than I could handle. Stress is one of the main reasons our bodies can’t heal. I would come to learn this over the years.

mother with lyme disease stands with her two sons, and support system
Courtesy of Sue Gray-Weimann

The next three years were a blur of trying different Lyme literate doctors, none of whom accept medical insurance. The bills were piling up fast and none of the treatments were working for me. I was told I am a very complex case and I fall into the 3% of people who doctors find extremely difficult to treat. That has left me struggling every day with a very long list of symptoms. I have no other choice but to live with these symptoms on a daily basis: crippling fatigue, insomnia, balance issues, cognitive issues, severe nerve pain, bladder pain, hearing problems, vision problems, trouble controlling my emotions, anxiety and depression, and suicidal ideation at times. I could go on and on, but I won’t. Chronic neurological Lyme disease is a devastating disease. It has literally stolen everything from me, but it hasn’t taken away my will to live and to fight to find a cure. 

My marriage to Kevin was almost doomed from the start. We are still married, but it’s not going well at all. He had no idea, nor did I, what we were getting into with me having a chronic case of neurological Lyme disease that went undiagnosed and untreated for 20 years. Sadly, this is very common in the Lyme community, and many other people have similar stories to mine. Slowly over time, I lost every friend I ever had because they can’t understand just how sick I truly am.

Chronic Lyme patients look fine on the outside, although I really do look very tired and I am not nearly as attractive as I used to be. I lost so much weight I was down to 100 pounds at one point, and I stand at 5’5″ tall. I have a picture of myself at 100 pounds, and it scared me so much I forced myself to gain weight.

woman with chronic lyme sits at kitchen table with dog and cat nearby
Courtesy of Sue Gray-Weimann

My Lyme journey has been a very lonely one. The only real support I get is from the Lyme groups I belong to on Facebook. I thank God every day for those wonderful people! I have had to learn to be grateful for the positive things in my life. My boys have brought me so much pride and joy. Robby is graduating from college in a few weeks with a BS degree in media and Ethan is now a junior in high school. Ethan and I enjoy watching the New York Rangers play hockey; it has been the thing I look forward to every day. I have a rescue dog and cat who bring me comfort each and every day.

Mother's two sons pose for a photo at a hockey game
Courtesy of Sue Gray-Weimann
woman with lyme lays on couch cuddled up with her dog
Courtesy of Sue Gray-Weimann

Chronic Lyme disease and the many co-infections, such as Bartonella and Babesia, are no joke. These tick-borne diseases need more mainstream attention. They are not being talked about enough. I live in an endemic area of the United States up in the Northeast. However, Lyme is in all 50 states and in many countries throughout the world.

It took me years of my own research and advocating for myself to finally understand what is actually going on in my body. Lyme is a systemic infection that is persistent and very hard to eradicate.

Please educate yourselves on the topic; you probably know someone who has it but they just don’t know about it yet. The testing still misses 60% of the cases by providing false negative results.

I never knew how strong I was until I had no choice but to become a warrior! I am still fighting and searching for my cure. I still have a glimmer of hope, and that is everything in this fight.”

woman with chronic lyme disease wears a shirt supporting those who have been diagnosed
Courtesy of Sue Gray-Weimann

This story was submitted to Love What Matters  by Sue Gray-Weimann of Sandy Hook, CT. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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