SOS: Sharing our Stories 
The Anna Duffy Story

by Laura Zeller

Anna Duffy’s Lyme disease story begins like many others. However, her particular struggle with rapid onset neurological symptoms, and her attempts to attain a correct diagnosis highlight the importance of getting prompt treatment.

While camping in a local Missouri state park, Anna discovered an attached and engorged deer tick on the back of her left knee. Following the advice of her friends, Anna burned the tick off with a match. Anna had no idea it was the wrong way to remove a tick. When she discovered a second tick attached on her big toe, Anna incorrectly removed it by slathering it with rubbing alcohol.

Within a week of returning home, Anna discovered circular red rashes on both her knee and her big toe. At the time, Anna did not connect the tick bites with the rashes that appeared. Instead, she attributed them to bug bites, applied hydrocortisone cream, and thought nothing more of it. Anna has since come to realize that her lack of education about proper tick-removal likely contributed to the severity of her coming illness.

Anna’s symptom display began with insomnia. Anna explains that she had been feeling unusually drained, and increasingly anxious, both of which she attributed to the stress of a recent relationship breakup. Even after two or three nights without sleep, Anna was often only able to take naps of a few minutes before waking again. When she did sleep for a slightly longer interval, she experienced violent, horrific nightmares filled with strong sensations of evil and dark images of death. Anna says she would wake up feeling shaken and sweaty. She described feeling as if continuous current of electricity had been jolted through her brain.

In the first few weeks after her tick bites, she felt like she had the flu. Weak and shaky, she felt feverish in the evenings, yet her temperature appeared normal. She felt tired all the time, not surprising considering her lack of sleep. Anna had a headache, but she described it as “weird.” It consisted of a constant “buzzing sensation” that would flare up horribly when she exerted herself physically in any way. After exercise, Anna experienced post-exertion malaise that lasted for days, along with dizziness and nausea.

When another red rash appeared on Anna’s leg, she looked at the rash with a growing sense of unease. It was definitely time for a trip to her family doctor. After examining Anna, her doctor explained. “This is not the kind of rash we worry about. This is a black fly or spider bite. What you are experiencing is a perfectly normal response to emotional stress. Insomnia does not occur with Lyme disease unless you have been infected for two or more years.”

Instead of treating Anna for early Lyme disease, her doctor prescribed the sleep-aid Ambien® to help her return to a normal sleep pattern. Thankful that she did not contract Lyme disease, Anna left the doctor’s office and cried tears of relief. She wanted to believe the doctor was right.

A few days later, after accompanying her nephew Matthew on a school outing, Anna knew in her heart that something was wrong. During the trip, Anna became horribly nauseated by the St. Louis summer heat. The light from the sun hurt her eyes, and the noise of the children talking and laughing felt deafeningly loud. Weak and dizzy, Anna drove herself back to her doctor. At Anna’s insistence, and for her peace of mind, her doctor ordered a Western Blot test, and prescribed a single dose of Doxycycline. Relieved, Anna struggled to continue with life as usual.

Unfortunately for Anna, the dose of antibiotic prescribed to her was grossly inadequate. Anna took the antibiotic as prescribed by her doctor at the (incorrect) dose of two 100 mg pills of Doxycycline. After that, Anna slept through the night thanks to the Ambien®. However, after sleeping through the night, Anna woke up un-refreshed and exhausted. Anna began having sharp muscle pain and twitching throughout the day which interfered with her ability to work. During the night, strong twitches in her neck would literally jerk her awake when she was on the brink of sleep. Sometimes Anna would drift off, only to be woken up by “electric shock” sensations that made the inside of her head feel like it was buzzing and vibrating.

After a dreadful week of suffering, Anna’s doctor called and told her that she was “in the clear for Lyme disease,” because her Western Blot test had come back negative. By this time, Anna had done some research on the Internet. She asked her doctor to consider that the test result might be a false negative. She begged her doctor to prescribe another course of antibiotics at a higher dose. Anna’s doctor refused to prescribe further treatment, and explained this to her in the gentlest way possible. Still, Anna felt that her doctor was not listening to her, and instead treated her like a patient on the verge of a nervous breakdown.

Over the next few weeks, Anna started feeling a fatigue so profound that she could barely stand in the shower. Getting dressed felt like running a marathon. Anna did not have the appetite to eat, or the strength to prepare food. She lost fifteen pounds and grew weak and malnourished. Getting ready for work was a job in itself. In the mornings, exhausted from improper sleep, Anna could barely raise her arms above her head to dry her hair. She began wearing the same outfit to work all week, too tired to be bothered with laundry.

After dragging herself to work, she became too tired to sit upright at her desk during the day. The responsibilities of Anna’s job as an Administrative Assistant were so overwhelming, she often spent a good portion of her work day lying on the bathroom floor. Small details that had been second nature to her began to cause confusion. She was filing things in the wrong places and her co-workers had to help her hunt down all her misplaced documents. Labels Anna put on envelopes were found upside down, and out of order. Anna could no longer handle her job responsibilities, especially ones which required extended periods of concentration.

Towards the end of her work day, Anna would often made frantic phone calls to her mother, (whom she moved back in with because she was so sick) and asked her to drive her home. Driving was a nightmare for Anna because the noise and heat from traffic made her feel even sicker. Anna was afraid she might pass out while she was driving.

Anna also experienced frightening pains in her chest. Anna felt like an old lady. Instead of walking upright, Anna staggered, and shuffled slowly. She would clutch the area at her heart, and was uncomfortable even sitting upright to eat dinner. Anna felt heart palpitations, first as if her heart was racing incredibly fast, then abruptly slowing down and skipping beats. Much to her surprise, each time her doctor listened to her heart, it sounded perfectly fine.

Anna soon began experiencing the worst anxiety and depression in her life. Frightening panic attacks came out of the blue and would often last two to three hours. Random negative thoughts would begin to race through her mind, spiraling out of control and making her believe at her lowest point that her life was no longer worth living.

Anna began having “brain fog” on a daily basis. She explains this as an almost indescribably awful feeling that she thought of as “brain freeze”. It was as if her brain had slowed down at its core like an overloaded computer. It was impossible to think and function properly in that confused state. Anna felt frustrated and lost. She wrote her name and address on a large piece of paper and kept it in her purse, thinking if she passed out somewhere, at least people would know her identity. Anna wrote goodbye letters to friends and family because she thought she might die.

Realizing that her first doctor couldn’t, and wouldn’t help her, Anna decided to see a second physician, whom she learned had recently treated a friend of her mother’s for Ehrlichiosis. After listening to Anna’s growing list of symptoms, her doctor stated “There is no Lyme Disease in Missouri. What you have sounds like Fibromyalgia. I could diagnose you with that but it would be too horrible.” She continued, “I would say that you have cascading stress-related trauma as a result of a tick-bite."

Anna insisted upon further Lyme disease treatment, and begged for more antibiotics. Anna’s new doctor left her in his office while he went to look up Lyme disease treatment. Thankfully, when he returned, he agreed to prescribe Anna one month of Doxycycline at 200 mg/day. Anna’s doctor was unassumingly following outdated and incorrect treatment guidelines published by the Infectious Disease Society of America (IDSA). Her family doctor had also previously prescribed “the standard treatment” which was two pills of 100 mg Doxycycline. According to the IDSA, this treatment would easily treat Anna’s symptoms.

Neither doctor was willing to officially diagnose Anna with Lyme disease because her Western blot test came back negative. Despite her new doctor’s opinion, her begging for antibiotics had paid off, and she left the office with a prescription in hand.

Despite following the IDSA Lyme disease treatment guidelines, Anna’s symptoms continued to worsen. After completing the month of Doxycycline, Anna’s new doctor refused to give her further antibiotic treatment, and instead prescribed anti-depressants, and suggested that Anna see a psychiatrist. Her doctor told her that together they would “get to the bottom of this,” and that Anna should consider him a “partner in wellness.”

Anna had no time to wait for the doctor to get to the bottom of things. She needed more than subtle assurances to feel that her doctor cared for her. Anna knew she was in big trouble! She knew the cause of her illness was physiological, not psychological. She felt bad enough physically to think she might be dying. Neglected by her doctors, Anna felt backed into a corner, and was forced to seek treatment on her own.

Through research on the Internet, Anna was able to locate a Lyme Literate Medical Doctor (LLMD). Even in her frightened state, she insisted on seeing him even though she had actually been accused of “doctor shopping.” and the LLMD had a four-month wait for a consultation. Desperate to feel better, and armed with the correct and updated Lyme disease treatment guidelines from the International Lyme and Associated Diseases Society (ILADS), Anna felt forced to “treat” herself while waiting out the few months to see her future LLMD. She took 400 mg of Doxycycline per day, and although treating yourself is never advised, Anna feels that she probably saved herself from a lifetime of disability because she acted quickly.

When Anna finally saw her LLMD, she was officially diagnosed with Lyme disease. She was diagnosed clinically, based on her history of tick bites and resulting symptoms. Anna began a long-term course of antibiotic treatment. She was finally placed on adequate doses of a combination of antibiotics. Once she began treatment, she had some powerful Herxheimer reactions, a clinical clue that the antibiotics were working well. Anna’s herxing brought on severe pain and alarming outbursts of anger. Anna felt overwhelmed with dark and depressing thoughts, and wondered if she would ever feel normal again.

Luckily, Anna’s symptoms did gradually decrease. She cycled her way through a battery of drugs including Flagyl®, Zithromax ®, Biaxin ® and Plaquenil ®. Despite the initial delay in treatment, Anna fortunately experienced a steady improvement in all of her symptoms. She has been symptom free for three months and she is off of antibiotics completely. In her own words, Anna explains, “I consider myself almost 100% recovered after only ten months of treatment. My insomnia and the profound fatigue that disabled me for nearly one year have almost completely resolved.”

Although near fully recovered, the medical struggle that tormented Anna has left a lasting impression on her. “The trauma of the illness and the ordeal that I went through trying to get help from the medical profession remains with me. I will probably never trust any doctor in the same way as I did before. I consider myself extremely lucky that I was able to find the information I needed so that I could be treated relatively quickly. I believe that if I had listened to those first two doctors, I would still be sick, in pain and debilitated to this day.”

Although Anna fought hard to acquire her correct diagnosis and treatment, she was lucky when it comes to Lyme. Many thousands of Lyme patients end up permanently disabled after suffering for years before receiving proper care. The majority of chronic Lyme disease patients typically see anywhere from 5-40 doctors before receiving a correct diagnosis and adequate treatment. Anna’s case highlights what can go wrong if inadequate Lyme disease treatment is given. It also demonstrates the serious flaws in the IDSA guidelines.

Anna followed all the rules. She went to her doctor with a tick bite, and received the “standard treatment” for Lyme. Anna did everything “right” yet still ended up very ill. Anna believes the IDSA should be held accountable for their irresponsible and unprofessional guidelines that have resulted in the miseducation of many thousands of family doctors across the United States, and the world.

If a tick bites you, seek immediate treatment, and make sure your doctor follows the correct guidelines; those published by ILADS. There is no substitute to receiving care from one of the world’s top Lyme Literate Medical Doctors (LLMD’s). Do not settle for inadequate treatment if you are still sick and suffering. It is your right to seek out the best possible care, and always strive to achieve optimum health.

References

http://www.ilads.org

St. Louis now has its own support group of people who can be easily contacted for help and information about finding a Lyme-literate physician in the region. The website is http://www.stllymefoundation.org