Former Stew Chantelle Lewis casually monitors the intravenous fluid dripping into a port in her arm. Her days are filled with medications, doctors and hospitals.
Her life wasn’t always like this. Three years ago she was second stew on M/Y Dona Amelia, a 70m yacht. Now her job is managing Lyme disease and subsequent illnesses she believes she contracted from a tick bite during her yachting career.
“You know, you really don’t think anything bad will happen to you,” Lewis, 30, said by Skype from a hotel room in California during a recent visit to the United States from her home in the UK. She comes to the U.S. for treatments.
“I had my shots and was aware of similar things through STCW, we learned about malaria and inoculations,” Lewis said as she picked up a tray of pill bottles to count out her next dose. But she never heard of Lyme disease.
Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics, according to the U.S. Centers for Disease Control and Prevention (CDC). Initial symptoms usually include a red, bulls-eye shaped rash, fatigue, chills, fever, headache, muscle and joint aches and swollen lymph nodes.
Lewis doesn’t recall a bite or rash but said the bite area is numbed by the tick and 30 percent of people don’t have the rash. Lewis doesn’t know when or where she was bitten but believes it was in the Caribbean in 2012. She logged many miles onboard, including trips to Antigua, Barbuda, St. Martin, Anguilla, Portugal, Valencia, the Balearic Islands, as well as three Atlantic crossings.
“When I got sick I thought it must be hormones or in my head,” Lewis said. “I fell ill just as I was leaving to do the crossing to Portugal. I had a week in bed with what felt like a bad case of the flu. I struggled to even sit up in my bunk. It felt like I slept solidly for a week.”
She continued to exhibit symptoms for more than a year while her doctors in the UK searched for a cause. According to the CDC, the untreated infection can spread to joints, heart and nervous system.
Animated for the Skype interview, Lewis can’t hide that she is tired. Former Chief Stew Emma Wilson said it’s the opposite of how Lewis was on the yacht.
“She had amazing energy onboard,” Wilson said. “We used to call her, “Eveready battery”.”
Wilson, who retired from M/Y Dona Amelia to have a baby, said Lewis was a natural.
“Chantelle told me, with this big energetic smile, that she loved cleaning so much she got excited when she heard dirt being sucked up a vacuum cleaner,” Wilson said. “I hired her instantly. She flew up the ranks until she was my second stew and it would not have been long until she would have been chief stew.”
She just has that type of personality, said the captain.
“She was always positive,” Capt. Daan de Witt said. “She was loved and respected by guests, good with children. That’s basically Chantelle in a nutshell.”
Lewis offhandedly checked her fluids as she also recalled those days.
“I would get told to stop working,” Lewis said.
Lewis now directs what little energy she has toward healing.
She is surprised at the level the disease has damaged her body and changed her life. Although needles are now normal, she recalled the first time she administered her own IV fluids.
“I remember that I sat in tears and fear,” Lewis said. “I was panicked to do it because if I got air in the lines I could kill myself. It was horrible. I thought I couldn’t cope. It doesn’t bother me now, but I realize I don’t have a choice.”
Frequent IVs through her veins caused them to “blow,” or become unusable. She had a semi-permanent port installed to run fluids into the vein directly to her heart. This helps the administration but brings a constant risk of infection. Lewis must keep the entire process flushed and sterile.
“The clinic taught me to mix my own medications,” Lewis said as she pointed to her current fluid antibiotic. In the morning she wakes up to take pills an hour before she can eat. She keeps a giant pouch by her bed and sorts pills out once a week. She takes about 50 a day.
“Then I put six different drops in water to drink, then, after one hour, I eat,” Lewis said. “Then I hook up to drip and mix my morning and evening meds.
“This is like a mini pharmacy and it feels like a full time administration job,” she said as she held up a spreadsheet. “But I’m very organized, like these charts to see how many IVs for each day. People say, ‘you must watch Netflix all the time,’ but I can’t. I’m ordering, updating the doctor, filling in my charts, keeping a log … Some days, I pass out and have to go to the emergency room.”
When Lewis’ illness began, timing for a few events made the situation worse, Wilson said.
“Chantelle left the boat as she was starting to become unwell and since the owner was selling the boat, she thought it was a good time to sort out these strange medical problems she was having,” Wilson said.
“A lot of us didn’t know how sick she was, until she was told they were not sure she was going to survive longer than six months and she had finally been diagnosed with Lyme,” Wilson said.
This has made insurance coverage complex.
“As for medical, she was covered by the boat until she left,” Wilson said. “Then she joined Bupa Insurance herself when she was in the UK. It then became the chicken and the egg. Bupa said it was a pre-existing condition, and Pantaenius, our boat insurance, said that the minute she signed off the boat, the cover was stopped.”
And to make matters worse, the NHS [National Health Service of England] doesn’t recognize Lyme disease, Wilson said.
Despite her symptoms that progressively worsened during her initial 14 months, Lewis said she did not receive treatment in the UK. She researched to find her own treatment options and found a facility in Santa Rosa, Calif. and she sees specialists in London.
Maria Karlsson, president Superyacht Insurance Group, said crew medical insurance usually covers the crew while working and during time off. Karlsson is not involved in Lewis’ case but offered conjectural insurance information.
“After the crew member leaves the yacht, the coverage from a group policy will cease,” she said. “However, if the crew member has an individual plan, he or she can take it with to the next employment or yacht.”
A yacht’s protection and indemnity insurance covers work-related accidents and illnesses, Karlsson said. But whether the yacht is liable is not clear in Lewis’ case.
There are a number of variables that affect the medical coverage of yacht crew, including crew citizenship, yacht flag and the crew’s contract, Karlsson said.
“How was she bitten, did this happen during time off?” Karlsson said. “It’s highly unlikely that she got bit by a tick onboard the yacht.”
No one knows, even the captain can only speculate.
“With regards to the disease, I’m not sure where she got it,” de Witt said. “I doubt she got in Antigua, maybe in England or Portugal, but it’s difficult to say.”
Crew are known to take advantage of the locations that yachts visit, he said.
“You can’t tell crew not to go on adventures,” de Witt said. “Crew are adventurous-type people. It’s difficult to put them in cage and say, ‘be careful’.”
“As to our management, it was the case that she was not on the boat for quite a while which made it difficult to make the boat responsible,” he said.
Lyme disease is a learning experience for everyone involved. Capt. de Witt said he did not know crew could contract such a disease.
“In 17 years in yachting, this is the first time I’ve seen this. I didn’t know much about it but now have done some research,” de Witt said. “The problem for her in England was that they didn’t know much about it and by the time they realized, it was too late.”
Even Lewis’ medical doctor and a homeopathic doctor are learning.
Now Lewis is navigating roadblocks to transfer her medical treatment back to England. Technically, she needs a nurse to go home with the lines, fluids, flushes and needles, she said.
“Companies won’t ship supplies and medicines to UK, so I need to get a P.O. box,” she said. “Even if I go home with this line, they can’t prescribe sterile water for flushing. Customs is getting tighter with the list of medications that you can’t send.”
Even though it has been years of health issues, Lewis was wistful while sharing her story.
“It feels crazy looking at these photos and realizing how life has changed,” she said. “I used to be able to work hard and play hard. Now I feel exhausted walking upstairs.”
But overall Lewis’ positive attitude keeps her hopeful about her health and keeps with her mission to educate crew and others with her online blog (www.biteback4chantelle.co.uk). Lewis also has a fundraising page to help cover her bills since she is not able to work.
“There will be life beyond Lyme Disease and I will be sure to discover it,” she wrote. “I have a lot of hope and won’t give up fighting.”
Dorie Cox is associate editor of The Triton. Comments on this story are welcome at firstname.lastname@example.org.