Lyme Disease Diagnoses Play Hard to Get

A chronic Lyme disease diagnosis will change your life. But sometimes, the biggest battle is just getting the diagnosis in the first place.

In part one of PW Contributor Alexis Rosen’s story, she recounts the extreme difficulty a patient must go through in order to get a Lyme disease diagnosis. This is partially because it mimics so many other conditions, and at the same time, it is not like any other.

“Growing up, I spent my early years living on a ranch and later living near a lake where I got the chance to experience the most wonderful childhood filled with hiking with dogs, riding horses through trails, petting the neighbor’s cows and, unfortunately, ticks.”

“I recall doing routine tick checks after family hikes, and sure enough on a person or an animal, a tick would appear. Oddly, throughout this time, I had suffered some unusual ailments such as being diagnosed with Tourette’s syndrome at seven, interstitial cystitis as a teen and a kidney disease.

After high school, I went to college in Northern California and spent my spare time going on hikes in Santa Cruz, wandering the lush lawns at U.C. Davis and exploring the outdoors. Later on in my 20s, I moved back to SoCal, settling my roots in Los Angeles where I currently reside. After moving back, I’d make sure to visit a few times a year.”

“I was diagnosed with Lyme at the age of 27, and I would say I was on my last leg, because at this point I was limping so badly I needed a wheelchair.”

“Before I got to the point where I was in the office, crying because my body had turned into this foreign monster, I went through what I would consider the worst and hardest stage of Lyme disease: getting a diagnosis.

This stage took me around eight months, which as appalling as it sounds, is insanely fast. Almost everyone else I meet has had to live with the Lyme for many, many years.

I initially took a break from my job in October 2014 when I was 26. I was getting married in a few months and the wedding stress had clearly started to get to me, at least I thought, because I was so tired. I was always someone who would read extra, do extra for my clients at work, and spent my time pursuing my passion working with children as a therapist. As time went on, I began to believe I wasn’t handling the high pressure of work as well as my coworkers and I kept forgetting to do certain everyday tasks. After agonizing about it and speaking to my fiancé, we agreed I could use time to regroup.

Alexis and her husband
Alexis and her husband

As with every bride, I was trying super hard to get into shape before the big day. However, I was frustrated- no matter how much I worked out and ate well, I kept seeming to gain weight and could not get enough sleep no matter how many hours I spent in bed.
By February 2015, I began to have a nagging pain behind my knee that would come and go. As weeks passed, the pain began spreading from behind my knee to all of the way around it and to the other knee. I began to limp around trying not to bear any weight on my left knee because of the agonizing pain.

One night as I was visiting my parent’s, my mom looked at me and asked what happened to my legs.”

“I looked down and my knees were not only swollen, but also red; the blue veins in my ankle looked ready to burst.”

“I phoned my husband and let him know I was going to the Urgent care at Scripps in San Diego. The doctors tested me for blood clots and then prescribed a strong anti-inflammatory and pain meds and referral for further testing. I went back to the hospital in San Diego as they had some of the top medical experts in the field of modern medicine.

The doctors ordered a few MRIs, X-rays, CTs and ultrasound. My scans came back mostly negative aside from an enlarged and fatty liver the doctor didn’t seem overly concerned about. I was sent to an internist who spent a lot of time asking me about my diet, as I was gaining weight at a rapid pace of a few pounds per week.

I got a call from the hospital while I was at a movie with my husband and they told me my ammonia levels had doubled to a dangerous rate and that my blood was “off.” I was sent  to the internist who then referred me to an endocrinologist and then to another internist at the hospital.

This time I was asked about my physical activity levels; at that time I needed to be in a wheelchair because my joints were too inflamed to move at all. I recall the moment I began to lose faith in the medical system when I was asked from my wheelchair if I had 1) tried yoga or 2) talked about the stress of just getting married with my therapist.

After this, I pursued doctors in Los Angeles without any luck and with the feeling something was very wrong and begun to take over my body. I went to see pain management, cardiology, nephrology, rheumatoid and an endocrinologist who specialized in weight loss, which was great because I was now significantly overweight.”

“This relationship ended after multiple blood tests and procedures left her with tears in her eyes, telling me that she had absolutely no idea what was going on.”

“I kept telling my doctors the same thing over and over again: it feels like something came into my body and is taking over. I didn’t know what it was, but that was not my body doing all these things- something was hijacking it. My lymph nodes had become tender and swollen, I had developed multiple abscesses on the back of my head, a wasp sting landed me in the hospital, and my whole body was out of control.

One day during a visit to see my pain management doctor, the P.A told me to check out the film “Under Our Skin” because my symptoms sure seemed an awful lot like Lyme. I went home and Googled Lyme disease. How nice, my doctor had to give me hope of a diagnosis that’s a “made-up” and rare disease, according to the CDC. I hopped on YouTube later to look at the documentary, expecting a bunch of messed up people who made something up. After ten minuets, I had to turn off my phone. I was crying too much. Those people in the documentary sounded an awful lot like me.

I had been extremely lucky to be working with an amazing acupuncturist who informed me of a chiropractor who had a knack for understanding illnesses others might not. I made an appointment with Dr. Stites and tried so hard to keep my hopes in check, that someone might have a clue what was wrong with me. Dr. Stites took a long look at me as I gingerly made my way into his office and later informed me that I was to send off blood work to Igenix to confirm what he knew by just looking at me.

“I am so sorry, you have Lyme disease. You have a long recovery in front of you, but you can get better.” Through this Lyme literate chiropractor, I was referred to my current Lyme specialist and began treatment immediately. This was about six months ago. I had some positive blood markers, however according to CDC standards, I was not positive. It was hard convincing my family that Lyme was indeed real and it was awful.

After seven specialists, dozens of MRIs, an X-ray, blood tests and other testing, referrals to seek mental health services, and after three pain management doctors, I received my diagnosis. I began to experience both relief for a diagnosis and worry after fully understanding what a monster Lyme disease is.” Again, my chiropractor offered sage wisdom:

‘This will be both the best day and the worst day for you.'”

“Thankfully, I had an amazing advantage throughout this experience; I had managed to connect with two Lyme positive people. I will never forget speaking to the first young woman over the phone – our stories, although perhaps different in symptoms, were remarkably the same. I will never forget crying after our phone call because she was the only other person who shared my experience. She gave me excellent advice:

Do your own research, become your own expert, prepare yourself for an extremely long hard road ahead and most importantly, know it will get better.”

Stay tuned for Part 2 of Alexis’ journey at the same time Monday, about next steps and the outlook ahead!


Jessica Gladwell

Jessica Gladwell

Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

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