In March 2013, everything changed dramatically for a once energetic and larger-than-life young man in Flower Mound.
Even though we don’t hear as much about it here in Texas, Lyme disease is the most common insect-transmitted disease in America– even more than West Nile virus. By far the greatest number of Lyme disease cases, over 20,000 a year, are seen in the upper Midwest and northeastern states. But, Texas sees dozens of cases every year, mostly within the Golden Triangle region between Houston, Dallas and Austin.
Most chronic Lyme sufferers are ill for months, years or even decades before they come to understand the root-cause of their disease. Most sufferers consult with a multitude of doctors, only to have to figure it out for themselves.
Such was the case of Josh Felt, the eldest of five children in the Australian family, which moved to Texas in 2009; his sophomore year at Marcus High School in Flower Mound.
His father, Robert, said the family all adjusted to its new home and Josh was active and involved at Marcus, where he was on the Cross Country running team.
“He went to Brigham Young University in Provo, Utah, for his freshman year,” said Felt. “He was bitten by a tick while he was doing missionary work in Virginia during his sophomore year. He didn’t think anything about it, so he didn’t say anything; until he got ‘flu’ symptoms– but no fever– that didn’t go away. That was in March 2013.”
Early detection and treatment is critical and aggressive treatment is needed at every stage. Today, chronic Lyme disease has reached pandemic proportions, with a grossly under-reported 300,000 cases in the U.S. alone.
Chronic Lyme disease is a neurological, bacteria driven, multisystem, immunosuppressive, post-sepsis illness.
Initial symptoms include fever, headache, fatigue and skin rash. Other symptoms can include brain fog, headaches, fevers, joint pain, nerve pain, shakiness, instability, dizziness, vision and auditory disturbances, hallucinations, seizures and paralysis. Left undiagnosed and untreated, the disease can spread to the joints, the nervous system and heart, which can be comparable in intensity and effect to that caused by congestive heart failure.
“In 2014, Josh tried to go back to school, but he was so weak and tired and couldn’t even remember what he’d read, that we went there to drive him home,” said Felt.
What followed for Josh, over the next two years, was all-too similar to the majority of Lyme disease victims– lack of a diagnosis. Lyme disease is frequently less-tested-for in Texas than in other parts of the country, where it is better known and is more common.
“We quickly found out that, especially here in Texas, medical centers and doctors have declared specialists and testing related to Lyme Disease to be uninsured and out-of-network, so everything falls on us,” said Felt. “We have four other children and college to fund.”
To help fund Josh’s battle, his Australian aunt suggested starting a GoFundMe page: www.gofundme.com/Joshuas_fight_against_Lyme_disease
In 80 countries and on every continent—chronic Lyme disease sufferers are being told that their debilitating, destructive, multi-systemic illness is nothing more than a small nuisance condition that is really just “all in their head.” It is primarily a neurological disease, wreaking havoc on the brain and nervous system.
Felt added that after failing to find an accurate diagnosis here, Josh visited other doctors around the country and found that Johns Hopkins Hospital had started a Lyme research center recently, but was still some time away from having a formal treatment program.
There have been so many Lyme sufferers misdiagnosed as bipolar or schizophrenic and then institutionalized when, in actual fact, the patient who has been committed to a psych ward is suffering from Lyme encephalitis.
“Josh had spent a week in a mental-assessment program and the verdict was that he was not mentally ill,” said Felt. Although that was a good elimination, it was not a diagnosis.
Lyme disease patients can, and most often do, experience anxiety, depression, panic attacks, rage, attention problems, short-term memory loss, personality changes, mood swings and learning disabilities. They can also experience detachment, dissociation, depersonalization, psychotic episodes and obsessive-compulsive disorder.
As with any cognitive impairment, chronic Lyme sufferers may have trouble keeping track of their daily tasks, they may lose things easily– including words and objects– they may have trouble retrieving information, forget appointments and struggle with holding a conversation.
In November 2015, Josh and his parents flew to San Francisco for a meeting with Dr. Raphael Stricker, MD, a physician affiliated with the International Lyme and Associated Diseases Society (ILADS). Special blood tests were taken that were specific to Lyme.
“After two and a half years, we finally had a correct diagnosis of Lyme disease,” said Felt. Lyme treatment for Joshua started in December 2015.
Included in Josh’s diagnosis was the fact that the disease had impacted his immune system to such an extent, that a “re-boot” of his body’s “defense system” to attack the disease through radio wave hyperthermia is the Felts’ choice of treatment.
Hyperthermia increases the body temperature to induce a fever. For centuries, fever therapy has been known to have a significant healing effect and stimulates the immune system. This is a treatment that America and other countries are currently investigating.
Josh’s treatment will be done at St. George Clinic in Bad Aibling, Germany.
May is Lyme Disease Awareness month and the start of summer travel season is a good time to protect yourself from ticks that transmit the disease. May, June and July are peak months for ticks.
The tick that carries Lyme disease is well-established in Texas and its range appears to be expanding. Lyme disease, caused by Borrelia burgdorferi, is transmitted by the bite of an infected black-legged tick, commonly known as a deer tick. It was first identified in Texas in 1984.
Ticks live where yards border wooded areas, or anywhere shaded with leaves and high humidity.
Avoiding tick habitats can be difficult, but when you go on a hike, bike ride, or walk try to remain in the center of a trail to minimize your exposure. Avoid sitting on the ground, woodpiles or fallen logs, where ticks love to live.
Additionally, pets can bring ticks into the home, placing household members at risk.
Wear tick-repellent clothing. Insect Shield Repellent Apparel is EPA registered to repel ticks and other potentially dangerous insects. The repellency is odorless, invisible and long-lasting.
Check yourself, children and pets and carefully remove any ticks. Ticks are easier to find on light-colored clothing.
To safely remove attached ticks, first disinfect the area with an alcohol swab. Next, using pointy tweezers, grab the tick head as close to the skin as possible and pull straight out. Remember to disinfect the bite site again after removing the tick.
A typical Lyme disease rash might appear that sometimes clears in the center, forming a bull’s-eye pattern. The rash expands slowly over days and can spread to 12 inches across. It is typically not itchy or painful.
Learn more at www.cdc.gov/lyme.