Lyme Disease: I Took All The Right Meds, So Why Didn’t I Get Better?

lympe disease case

Lyme Disease Specialist in Northern Virginia

In the fall of 2010, Miranda had just graduated with a PhD in sociology and was seeking employment while teaching and maintaining an active social life. Her days were busy but unfulfilling, until she was hit with extreme fatigue.

Blaming the new fatigue on her busy schedule, Miranda booked a weekend retreat at a local spiritual center.

After a few days of rest and relaxation, Miranda headed home, settled back into her surroundings and prepared to readjust to her busy life.

That night, after showering she noticed a large bullseye-shaped rash staring back at her in the mirror, bright red on her left hip. Later she developed an alternating fever with joint aches, experiencing pain akin to shards of glass in her hands and feet and experiencing blurred vision.

A quick internet search confirmed that the bullseye rash was a sign of Lyme disease. Administered early, antibiotics would eliminate the bacteria completely and prevent any long-term to a person’s brain, joints or nervous system.

But Miranda would soon learn that antibiotics don’t work for everyone.

The Research-Based Doctor

After taking a photo of the rash and sending it to her doctor, Miranda was prescribed 10 days doxycycline and scheduled for the next available appointment.

By midweek she returned to work, still a bit tired and achy but believing that the antibiotics seemed to be taking care of the infection effectively.

By Thanksgiving, Miranda had completed the course of doxycycline and was celebrating with her husband and parents. Standing at the kitchen sink, she noticed a throbbing in her hip and knee joints accompanied by a sudden cold feeling. Later, a splitting headache and vision changes gripped Miranda over dessert.

She and her husband Jon headed to the nearest Urgent Care center, where she was offered a test for Lyme disease. Declining, Miranda and her husband drove quickly back home to her primary doctor who had prescribed the course of doxycycline.

Fortunately, he could see her the next day.

Her primary doctor explained that Lyme disease occurred mostly in the northeastern states but that she may be suffering from a similar tick-transmitted illness known as STARI (southern tick-associated rash illness).

He assured Miranda that he would test her for Lyme disease and other tick-related illnesses.

The doctor then explained that his main concern was that Miranda may not have Lyme disease at all, because 10 days of an antibiotic course should have eliminated it.

She knew that the doctor was quoting her guidelines from the Infectious Disease Society of America, but her internet research had yielded conflicting results regarding the length of time and dosage antibiotics should be administered in the treatment of Lyme disease and related illnesses.

Anxious and confused, Miranda requested her doctor extend the course of antibiotics. He granted her request, extending the course for 20 days.

Hoping for answers about her condition through testing, Miranda was disappointed to learn that she tested negative for Lyme disease, negative for Rocky Mountain fever and negative for ehrlichiosis, a related infection.

Still experiencing symptoms, Miranda was fatigued and struggled to concentrate. Her headaches and joint pain made her feel aged far beyond her 35 years.

During the follow-up visit, Miranda’s doctor assured her that she absolutely didn’t have Lyme disease, but that her rash was unmistakable and he would figure out what she was suffering from.

Doctor 2

Scared and looking for an answer, Miranda reached out among her personal and professional contacts and scoured the internet to find stories of Lyme disease unresponsive to treatment, like her own.

Although some factors varied, the success stories all shared one common denominator: treatment by a Lyme Literate Medical doctor (LLMD). These were physicians from varying specialties dedicated to diagnosing and spotting cases of Lyme disease and other tick-related illness that might go unnoticed and escape detection.

Her internet search yielded the only LLMD in her area, an LLMD practicing allopathic medicine who didn’t accept insurance and charged $400 for the first visit. Discouraged by the cost, Miranda turned to her husband who reminded her that she’d been sick for months.

At her first visit, the new doctor prescribed two months of antibiotics. Discouraged and shocked, Miranda reluctantly agreed, tired and desperate to regain her former health.

The new doctor warned Miranda that she would feel much worse before her symptoms improved, explaining that toxic gas is released when bacteria are killed by the antibiotics causing very unpleasant side effects as bad as the illness itself. Still, the doctor assured her that only a two-month course of antibiotics would cure the infection.

Miranda agreed, beginning the two-month course and soon experiencing extreme fatigue, light sensitivity and daily nausea.

At her three month appointment, the physician assured Miranda that these were good signs, a sign of improvement that the bacteria were dying off.

One month later, evidence of improvement was minimal and Miranda’s symptoms continued along what the unpleasant side effects brought about by the antibiotics.

The LLMD then added Rifampin and Flagyl to her antibiotic regimen, sending Miranda into two days of dry heaving and trembling on the bathroom floor. Miranda called the doctor, begging her to remove Flagyl from the treatment course, to which she reluctantly agreed.

During her next appointment, scared and shivering, Miranda weighed in at 108 pounds from a former 122.

At the end of the visit, her doctor handed Jon a stack of prescriptions, refills for her antibiotics and a new prescription for an anti-nausea drug as well as an opioid and an antidepressant.

Discouraged, Miranda explained that opioids made her nauseous and that she was sick, not depressed.

For the next two months, Miranda would live in a pain filled, constantly wheezy and increasingly week fog. She spent most of her days in bed with pillows and comforters hiding her shrinking body.

At the height of her illness, Miranda was accepted to a position she had applied to before falling ill.

The new job would start in just six weeks, but she was too weak to climb stairs or operate her own vehicle. She begged her doctor to discontinue the prescriptions, the LLMD agreed to discontinue everything but the doxycycline.

That fall, Miranda managed to gain 10 pounds and begin her new job at the university. Functioning but unwell, she spent her days reading and rereading content that she’d written herself, failing to comprehend the words in front of her.

A concerned nurse practitioner friend referred Miranda to a new LLMD, board certified with decades of experience. His office was a five-hour drive from Miranda’s home and like her first LLMD, he didn’t accept insurance.

After being placed on a three-month waitlist, Miranda’s first appointment with her new LLMD took place in January 2012 and lasted for hours. She completed an intensive interview including verbal questions, written surveys, blood work as well as physical and cognitive testing.

Despite her troubles, the new doctor reassured Miranda that he’d been successful in treating patients from all around the country.

Miranda’s test results were mixed. Although her Lyme disease test was inconclusive, she’d tested positive for two co-infectious organisms.

The expert explained that what we refer to as Lyme disease is more accurately thought of as a set of infectious agents transmitted to humans via tick bite and that many symptoms attributed only to Lyme disease may be the result of co-infection from separate organisms that often coexist with the development of Lyme disease. These factors complicate the illness and can be difficult to detect.

Reducing her antibiotic load, her new doctor prescribed only drugs that he felt were absolutely necessary and adopted a low-and-slow approach to treatment.

He believed in practicing balanced traditional Western medicine with supplements and nutrition, promising Miranda that his job was to cure her but never to make her feel physically worse.

Under the expert’s care, Miranda slowly but steadily improved and eventually added complementary treatment practices to her recovery, including meditation and exercise. Was it a single magic trick that cured Miranda’s illness that her first two doctors had failed to possess?

No, Miranda credits her recovery to her new doctor’s experience, reliance on multiple forms of evidence and his patient-centered approach along with a combination of therapies.

Two-and-a-half years after her first appointment, Miranda was given permission to begin tapering off of her medications, her doctor only recommending that she remain on her immune-boosting supplements for another nine-to-12 months.

She had her life back!

Looking Ahead

The incidence of Lyme disease has doubled in the United States since 1991.

Improved awareness of Lyme disease is critical to addressing this public health concern. Advances in testing and research must also be achieved, but there is a crisis of patient care that must be addressed, especially for patients with late-stage Lyme disease that is non-responsive to antibiotic treatment (an estimated 10 to 20 percent of cases according to data gathered by the CDC).

Dangerous, non-certified LLMD practitioners prey on sick and weary Lyme disease patients with no regulations enforcing the care they are receiving. Board certified LLMDs, on the other hand, provide excellent treatment and a caring approach. Board certification must be mandated.

Lyme disease must be redefined and its parameters expanded, encompassing related tick bite illnesses to more easily diagnose patients like Miranda and other sufferers who have slipped through the cracks of detection.

Until tick-related illnesses are taken seriously as a public health concern, unnecessary suffering by the victims of this disease will continue.

For more information on Lyme disease and receiving treatment from a trusted and reputable integrative health and wellness center, contact Gentle Wellness Center in Fairfax, Virginia today.