From Referral to Referral

A Lyme disease diagnosis

By Liz Forster; image courtesy of Abbey Lew

All goalkeepers in soccer have their personal list of goals they wished they could have stopped: a mishandled pass from a defender, a rebound from a controllable shot or a miscalculated corner kick. It’s easy to mull over the stupidity of the mistake for the rest of the game, but that only breeds more mistakes. The best way keepers can react is to remind themselves that the goal is not a reflection of their skill level and to refocus on the game. It’s one goal of hundreds in a keeper’s career; they’ll forget about it eventually. 

A goalkeeper’s game is predominately mental. The ability to resist the temptations of temper tantrums, irrational cries and defeatist attitudes separate top level keepers from any other player on the field. The players may run ten miles in a game but in that same time, keepers gain a year of mental toughness. 

During games, I was willing to sacrifice any part of myself to stop the ball from disturbing the netting behind me. I shoved the forwards standing in front of me on corner kicks, threw myself inches away from the post for a diving save and directed my players on the field like chess pieces, even if they called me a bitch behind my back. As long as my team won the game and I let in as few goals as possible, the consequences didn’t matter. At least, they didn’t until one breakaway save when I was in seventh grade. 

Twenty minutes into my first game at the Pride Tournament in Parsippany, N.J. in Oct. 2007, a forward on the opposing team had swiftly dribbled past my defenders and was accelerating towards my goal. Recognizing this threat, I employed the tactics of dealing with a breakaway my coaches had engrained in my mind; I synced the pace at which I moved away from the net with that of her moving towards me, crouched low enough for a quick diving save but high enough for a shot above the waist and locked eyes with her for an extra boost of intimidation. 

She dribbled into the 18-yard box and, on her next dribble, kicked the ball just far enough away from me to avoid a point blank save. I planted my left foot at an angle towards the ball and lurched at it. Realizing I was about to steal her chance to tie the game, she slid feet first to nick the ball over me and scored.

I didn’t look back in the net, and I didn’t kick the goal post in frustration. I couldn’t. I lay face down, gripping my right forearm, hoping that some stability would mitigate the stabbing pain in my arm after the forward had driven her knee into it. The paramedics rushed onto the field with my parents and coaches following behind. 

“It’s probably just a broken arm,” the paramedics explained. 

We drove to the hospital for an X-ray. My humerus had not broken, but had bent in a rainbow-like arch. The doctor gave me a soft cast to wear. After two weeks, I was back on the field. 

Three months later, I woke up one day for school and my right arm was nearly paralyzed, bent in a 90-degree position. I experienced constant muscle spasms in my forearm; eventually, the pain extended up my right shoulder and neck and down the right half of my back. I wore a sling at all times, couldn’t make physical contact with others due to extreme hypersensitivity and had to learn to do everything with my left hand. Try brushing your teeth with your non-dominant hand, and you’ll start to understand. 

For the next six months, I evolved into the case that no one could solve. I bounced from doctor to doctor, trying to find an answer to this debilitating ailment. Most of them timidly examined my case and left me with, at most, a referral for another type of specialist. The few that provided me with a diagnosis were wrong. I was told it was all orthopedic and needed physical therapy. I was told I had reflex sympathetic dystrophy, a neurological disease that would last the rest of my life. I was told I was making it all up in my head and should see a therapist (my dad nearly punched the doctor). 

About five months into the process, my parents and I drove two hours to the IMT Wellness Center in Bloomfield, Connecticut to consult with the late Dr. Sharon Giammatteo, a specialist in integrative manual therapy. Her facility was lined with examination tables, patients occupying nearly every one of them. Her faculty seemed as though they did nothing but lay their hands on various areas of the body. Most people would have stared in confusion thinking, “What the hell is going on?” At this point in my journey, Dr. Giammatteo and her employees were just another set of specialists who might have the answer for me. 

Dr. Giammatteo walked into the private examination room and introduced herself. “Since I started Integrated Manual Therapy, I have never not cured a patient!” My parents sank back in their chairs in relief, and I scooted to the edge of the examination table as she explained her technique in curing patients with complex cases.

Dr. Giammatteo designed Integrated Manual Therapy (IMT) 30 years ago as a holisitic method to treat “dysfunction, disease and disability.” Her therapy is rooted in the idea that the body has the potential to heal itself as it does with cuts and broken bones. For pain and dysfunction, the body needs the intervention of hands-on, manipulative techniques to promote tissue repair, normalize structure and restore function. 

Three times a week, my parents drove me to Dr. Giammatteo’s office for treatment. My specialist for the day would focus on different connectivity points than the last, but I would leave the office crying in pain due to hypersensitivity in the upper right half of my body. I yelled at my parents time and time again that I needed to leave this place, that their treatment exacerbated my pain rather than alleviating it. They ignored me, not out of neglect, but because they thought they had exhausted all other options. 

After three weeks of hell, Dr. Giammatteo asked to meet with me privately in one of the examination rooms for a formal follow-up. 

“Well,” she sighed, “I can’t tell you why my method isn’t working, but it’s not. Here’s the name of a Lyme disease specialist. She might be able to help.”

Great, another referral, I thought. 

I ignored the fact that I had already tested negative for Lyme disease. At this point, Dr. Giuseppina “Jo” Feingold was my only option. Dr. Jo specializes in children with autism, treating them with intravenous (IV) injections and hyperbaric oxygen therapy, a form of oxygen therapy that increases the percentage of oxygen in and the pressure of the air to maximize oxygen intake and flow. 

We met with Dr. Jo shortly after Dr. Giammatteo’s referral and, after describing my symptoms, she said with zero hesitation that I probably had Lyme disease. She ordered a blood test from IGeneX rather than Quest Diagnostics as my physician had when I tested negative in February. I tested positive.

I’m not as unique as I thought I was during my quest for a diagnosis. A handful of patients go months, even years searching for a diagnosis, let alone a treatment plan. Many also have no idea when they were infected, since their symptoms did not correlate with a tick bite. According to a Swiss study, only 12.5 percent of patients testing positive for Borrellia burgdorferi, the predominant bacteria causing Lyme disease, had developed symptoms. Although a shockingly low amount, Dr. James Howenstine, MD, explained that this is because the severity of a patient’s Lyme disease is correlated to the number of Lyme spirochetes present in the patient. Few spirochetes generate mild to no symptoms—leaving some patients unaware of their infection. 

Most often, symptoms arise after the patient suffers a physically traumatic event. Stresses such as an injury, accident or an infection of another disease provide the Lyme-causing bacteria known as Lyme spirochetes with the weakness needed for them to compromise the immune system and attack the stressed area. Because the area the spirochetes decide to attack depends on the area of stress, patients can experience symptoms in the musculoskeletal, neurologic or cardiovascular systems. This complicates not only how patients interpret their symptoms, but also the diagnostic process. Lyme disease is thus often times mistaken for arthritis, multiple sclerosis, sleep disorders and even psychological disorders.

The IgG Immunblot diagnostic test administered by Quest Diagnostics does not give clear or quick results. It is the most popular of Lyme diagnostic tests but tests only for antibodies to Borrellia burgdorferi. Although this strain is the most common of Lyme disease-causing bacteria, Lyme disease can also be caused by a variety of co-infections. These bacteria include but aren’t restricted to Babesia, Ehrilichia and Bartonella. As stated on the CDC website, the surveillance criteria for the IgG Immunblot test were not designed to be used as diagnostic criteria and cannot define the entire scope of Lyme disease. The test is estimated to be only 30 percent reliable.

IGeneX, on the other hand, offers patients a much more comprehensive model that tests for more strains of Lyme disease related bacteria. Many doctors refuse to use to this test, and many insurance companies deny coverage for it. Why? Beats me. 

My diagnosis took seven months, over 15 different doctors, a countless number of blood and other tests, and finally, the IGeneX test to confirm that I had Post-treatment Lyme Disease Syndrome (PTLDS). It was triggered by my bent humerus pinching my radial nerve. Maybe it was a new infection of Lyme. Maybe it was a once dormant-infection from when I had Lyme disease at the age of three. Due to the lack of extensive and, more importantly, widely-accepted research on Lyme disease, I’ll probably never know. 

After my diagnosis, I restarted on the traditional antibiotic for Lyme disease, Doxycycline, and also had IV antibiotic and hyperbaric treatments everyday. After months of clawing through a maze of doctors and useless therapies, I recovered in three weeks and was back on the field in six. 

Since then, I’ve had three or four relapses. Each one has neurological effects, but is undeniably rooted in a musculoskeletal ailment. They range in severity from insomnia-like sleep patterns to pain in my knee so severe I was again benched for an entire soccer season. 

The most recent episode followed a ski accident this past Thanksgiving break. I crashed with a friend who stopped abruptly on a groomer but stood up laughing right after the initial shock. In the beginning of April, I started complaining to my chiropractor about shooting pains in my lower back and pelvis bone. For a couple days after my adjustment, my back never bothered me. My back would reset though midway through the week, leaving me to self-medicate with PBR and Seagrams on Friday and Saturday nights. Eventually, the pain escalated, became constant and shot down the outsides of my legs and up into my shoulders. I can’t ski, the passion that replaced soccer. I can’t work out. I can’t even sit through class without struggling. 

I’m back to the referral game, bouncing from doctor to doctor to find an answer that hopefully has a more concrete solution than Lyme disease does.

When I feel this relapse and the other three brewing, I always think of the one breakaway almost eight years ago I wish I could have saved.