Lyme disease is very complicated.
It is elusive and frustrating. It seems to have a diabolical mind of its own. It can present different problems in different parts of the body on different days.
And it is expensive. It will make you broke.
A local family is discovering this in a journey that has led them to reach out for help.
Imani May Young is 16.
She is the daughter of the popular local chef, David Vincent Young, and his ex-wife, massage therapist Janet Young.
Imani was once was full of energy but now spends much of her time in bed at her mother’s home in the Old South apartments near the bridge to Hilton Head Island. She has not been to school in two years — about as long as it took the Lyme disease to be diagnosed.
She was bitten by a tick, her parents said, but also over time by a dog and fleas.
The Centers for Disease Control and Prevention says most cases of Lyme disease can be treated successfully with antibiotics during the first few weeks of infection.
That has not been the case for Imani.
Her parents believe Imani has “chronic Lyme disease.” But Janet Young said not everyone believes there is such a thing, and it gets political.
What she knows for sure is what she sees with Imani.
“She is dealing daily with severe and painful neurological symptoms and major organ issues and tremors, silent seizures, interstitial cystitis, painful skin rashes, Bells palsy of the gut, and insomnia,” she said.
On Friday morning, Janet Young said, “I am quite sleep-deprived. Imani was up all night as the disease was attacking her vagus nerve.”
She said, “There is a lot of shaking and tremors in this disease.”
They have reached out to the community for help, through a Go Fund Me page, called Heal Imani.
Janet Young tries to weave her work schedule around Imani’s needs. She cannot be left at home alone. An older daughter from a previous marriage has come down from North Carolina to help.
David Young visits his daughter, but he works full-time. He recently left Ruby Lee’s to become sous chef at the new Skull Creek Dockside restaurant. He has operated two of his own restaurants — Roast Fish & Cornbread and Burnin’ Down South. When he worked as the Sea Shack, he wrote a cookbook influenced by his upbringing in a Gullah culture on a much more rural Hilton Head than today’s version. His family has been here for 175 years, he said.
David and Janet met in Wisconsin, where she is from and where he studied culinary arts.
Janet said insurance does not cover much of the medical care they have sought. Sometimes that means plunking down $1,600 out of pocket. Another place was $3,000. It can cost $850 to walk through a doctor’s door, then more for tests. She said few doctors are experts in diagnosing or treating Lyme disease.
“We finally got her to a specialist in Connecticut in March,” Janet Young said. “He diagnosed her with the Lyme as well as late stage Babesia and Bartonella. He prescribed antibiotics. The antibiotics are not clearing her infections. Babesia can cause heart failure. We need to get her to a Lyme treatment center.”
That can cost $25,000.
“With that we would know she would get her life back, and that is what we want to happen,” Janet Young said.
As it is, recovery could take eight to 10 years, she said. It’s hard to say.
As the primary caregiver, she survives on healing energy.
“I’m a Reiki master,” she said.
A web site says, “Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing. It is administered by ‘laying on hands’ and is based on the idea that an unseen ‘life force energy’ flows through us and is what causes us to be alive.”
“That’s how I got her to sleep last night,” Janet said last week. “It calms the body. It is the only thing that has been able to keep me going.”
She and David wanted me to tell you about Imani.
He said: “I’m just a dad trying to do whatever I can to help my daughter.”