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Former stew bites back at Lyme disease

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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.

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Former Stew Chantelle Lewis at work on M/Y Dona Amelia prior to becoming infected with Lyme disease in 2012.

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.

Former Stew Chantelle Lewis at work on M/Y Dona Amelia prior to becoming infected with Lyme disease in 2012.

Former Stew Chantelle Lewis at work on M/Y Dona Amelia prior to becoming infected with Lyme disease in 2012.

“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.”

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Former Stew Chantelle Lewis at work on M/Y Dona Amelia prior to becoming infected with Lyme disease in 2012.

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 dorie@the-triton.com.

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4 thoughts on “Former stew bites back at Lyme disease

  1. Michael Verdon

    My daughter has had chronic Lyme disease for 12 years–she got bit when she was seven and it went misdiagnosed as arthritis, chronic fatigue, etc. The insurance portion of this is a nightmare as is the lack of recognition by most health agencies who follow the CDC guidelines. The CDC guidelines, by the way, were devised by a panel of Lyme experts, several of whom benefit financially from the testing done, and misses about 40% of the actual cases. Most of these doctors will not admit that there is “chronic” Lyme, so do not actively treat the disease. They rely on laboratory studies which have been proven to be misleading, rather than clinical results. We’ve taken our daughter for treatment all over the world, including a special Lyme clinic in Germany. It’s a heartbreaking and very insidious disease and my heart goes out to Chantelle. I hope the IV antibiotics are helping. I do know a number of people who have seen big results from these, though our daughter wasn’t one of them. The best thing for her was a raw vegan diet, with no sugar, no gluten, and as much exercise as she could handle. That brought her from being bedridden for six years to feeling well enough to attend high school in the last year, though she still isn’t back to health. She just tries really hard. Please give Chantelle my contact info if she wants it. I know of some other clinics and treatments she can try. We’ve done almost all of them. Michael

  2. Chuck Bortell

    The Triton is to be commended for covering the story of Stew Chantelle Lewis, the crew member with Lyme disease [page A6, June issue]. These matters are important because other crew could become entrapped in similar scenarios, and not just with Lyme disease.
    The namesake for Lyme disease is the U.S. colonial village of Old Lyme, Conn., which is near the confluence of the Connecticut River and Long Island Sound. However, the disease is not limited to that area. The entire northeast woodlands of the U.S. are high-density infectious cauldrons for contracting the disease.
    One does not have to be an adventurer to contract the disease. The virus appears to be carried primarily in the blood of deer. There are zillions of deer in the northeast U.S. Why? There is sufficient human population to ward off the predators of deer but, in the “yuppie” northeast, there is little recreational harvest of deer. Thus, there is a population-explosion of deer, which are proximate to humans. Frequently, deer even invite themselves onto the porch of the homes.
    Lyme disease is inflicted by ticks, which take the opportunity for under-way replenishment aboard the deer. Then the ticks alight from the deer and seek the warm-blood opportunities of humans or household pets, continuing the chain of infliction.
    Ms. Lewis’ case is complicated by the failures to diagnose Lyme disease and its delayed, yet continuing deleterious physical impacts, as well as it being masked under an erroneous presumption that the condition was something akin to a routine flu. Crew, and captains in particular, need additional training with these protracted medical risks.
    The author has no specific involvement nor inside knowledge of the facts related to Ms. Lewis’ case. Nevertheless, based upon the information in the article, it is apparent that the vessel’s management and possibly other entities caused a number of employment and insurance procedural errors. While these mistakes might seem minor, it is Ms. Lewis who is paying the agonizing price, both physically and financially.
    There are critical issues related to insurance here for the entire crew community. For example, the typical culprits for claims denial stem from pre-existing conditions. In this case, Bupa rejected the belated attempt to enroll there. Yet, if the crew coverage had been through individual plans, then protection would have remained in force.
    Thus, this first insurance point is about portability, a concept the entire crew insurance and yacht management industry refuse to address. Portability is a large and vital topic for all crew interests, but more suitable for discussion and evaluation in another forum. In the meantime, the quoted statement by agent Maria Karlsson relating to crew having individual plans is the best recommendation.
    Individual plans are preferable for portability. Then, why are most crew insured by group plans without portability? Don’t crew ever shift jobs and employers?
    Second insurance point: Ms. Lewis’ maladies emerged before she left the boat. In my opinion, one or more claims should have been filed prior to her departure from the vessel.
    Third insurance point: What were the contractual provisions related to continuation-of-coverage? For both the employer-sponsored group health plan and the vessel’s P&I cover?
    Fourth insurance point: several commentators might be well advised to review the maintenance & cure doctrine of admiralty law. Ms. Lewis’ personal situation would be far better if she were receiving or had the benefit of those vital protections. Ms. Lewis has suffered enormous physical duress and financial distress. Yet, insurance protections, to some extent, were purportedly in place. What went wrong?
    The article made some references to the locus of Ms. Lewis’ travels, which seems immaterial. The governing argument for maintenance and cure is whether she was “…a seaman in service of a vessel in navigation…” The sick-in-quarters evidence seems conclusive.
    According to the article, management officials were quoted “… Pantaenius, our boat insurance, said that the minute she signed off the boat, the cover was stopped.” That is probably true in that coverage would no longer in effect for protection of Ms. Lewis after separation. That is, future and different perils would not be covered.
    Nevertheless, her separation doesn’t affect past events. If valid, the claims would proceed to disposition in accordance with the terms of the respective contracts, and the precepts of maintenance and cure.
    So what are the lessons to be learned from this tragedy?
    1. Crew should become familiar with Lyme disease and the deceptive, debilitating, delayed nature of its symptoms. Most important: Lyme disease is often misdiagnosed.
    2. Compel the crew insurance industry to establish fair and proper procedures in determining continuity-of-coverage. Right now, the only cross-employer protection comes from an individual plan. There, the coverage can follow from boat to boat, as long as it is timely renewed and premiums remitted. That feature alone would have mitigated this crew member’s maladies and woes.
    3. Assure crew become aware of channels to obtain private and alternative guidance — a second
    opinion — regarding their potential situations, whether those seem serious or not at the time. If nothing else, the potential legal corroboration could become important.
    4. As the ship’s master, the captain is inescapably responsible. A number of captains have never read their insurance contracts, even though those documents contain directives directly affecting the discharge of the captain’s responsibilities.
    And finally, it is appalling that a young second stew was left to contend with these arcane matters herself. However, by becoming the poster child for the industry’s perilous insurance and derelict management practices, maybe there will be fewer such horrific cases in the future.

    Chuck Bortell is an insurance agent with Crew Insurance Associates and specializes in insurance for yacht crew. Contact him through surfrider@prodigy.net.

  3. Anita Warwick - Seven Seas Health

    Well put Chuck!
    Unfortunately Ms Lewis had no portability with the health insurance plan provide by her employer. Whilst most group plans for crew do not offer the ability to take the plan on to the next boat or position, many crew tend to rely on an employer’s group plan choosing not to take responsibility for their own health care. I have seen many crew left in this awful position like Ms Lewis!
    Whilst US filed and admitted plans offer COBRA (continuity) this works only when the plan still is in place. If the vessel is sold and the plan cancels so does COBRA. Also, not all vessels are eligible for US filed plans.
    An individual plan is the answer. Sometimes the owner will reimburse crew when they have their own plan. The marine plans are after all primary to the vessel’s P&I and offer protection to the owner also!
    This was a hard learnt lesson that others should learn from! The idea is to get health insurance whilst healthy – before a serious illness kicks in! But for young crew to realize that they are not infallible is a tough sell!
    My sincere best wishes to Ms Lewis!

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