How far would you go to cure your symptoms of Lyme disease?
Some people are willing to raise their body temperatures up to life-threatening levels.
It’s called “Whole Body Hyperthermia”
Every year, hundreds of people from around the world travel to a clinic in Germany in hopes the hyperthermia treatment can cure them of their Lyme.
Hillary Nelson of Boston said she paid close to $40,000 for the two-week program that's supposed to kill all the Lyme bacteria in your body.
"When something fails repeatedly, you really have to think outside the box and you have to take a leap of faith and trust your gut," said Nelson.
We met Nelson back in August a few weeks before she left for Germany. Two years ago, she was diagnosed with Lyme disease.
"When people look at me they don’t see a sick person," said Nelson.
They don't see the IV of antibiotics that she takes twice daily or the former skier who can barely walk a block.
"My worst day would be not being able to move the entire day. Brain fog, joint inflammation. Just completely disabled" she said.
Nelson says her treatments here in New England weren't working and decided it was time to take a leap of faith on something new and unconventional.
That leap took her to the Bavarian town Bad Aibling.
Klinic St Georg markets itself as a place of last resort for people suffering from Lyme disease. Patients travel from all over the world and pay tens of thousands of dollars to be treated here.
Dr. Freidrich Douwes says he discovered the whole thing by accident. An oncologist, Douwes was treating cancer patients with hyperthermia and some of those patients also had Lyme Disease. He said those patients noticed their Lyme symptoms were significantly better after the treatment.
Whole body hyperthermia is only used in clinical trials here in the United States for cancer treatment and is not an approved treatment by the FDA for Lyme disease.
According to the website cancer.gov, side effects of hyperthermia treatment include: blisters, tissue swelling, blood clots and in rare cases cause cardiovascular disorders.
Douwes says that his patients are constantly monitored by nurses through the entire process. The patients are sedated while their body is slowly heated in a tent. It takes about two hours for the core temperature to reach 107 degrees Fahrenheit. Douwes says they leave the body at that temperature for another two hours to kill off the Lyme bacteria known as borrelia.
Nelson said she slept for two days after her first hyperthermia treatment.
"I felt exhausted. Like my body had gone through a marathon," she said.
Douwes says everyone responds differently to hyperthermia treatment. Some people take longer for their symptoms to get better while some see results almost immediately. He says it takes four to six weeks on average.
Douwes claims that 70 percent of his patients see significant relief from their symptoms and many of them write letters after treatment.
"If you see the letters I get that say Dr. Douwes ‘You gave me back my life. You gave me back my life!’, can you imagine what this means for a physician?” he said.
Brandi Dean from Wellesley was one of the clinic's success stories.
"I had zero symptoms. It was the best I had felt in seven years," Dean said.
She went to Germany in 2017 for treatment after years of suffering with Lyme disease.
Dean says two weeks at Klinik St. Georg did more to relieve her symptoms than years of conventional treatments here in the U.S.
"After my first week home I woke up and I just felt so amazing. I felt like a normal person again," Dean said.
A few weeks after Nelson returned home to Boston she walked six miles. Something she hasn't done in years. She's hoping to ski again this winter.
"I'll probably cry. When I do simple things that you haven’t been able to do for two years, the appreciation you have for that is remarkable,” Nelson said.
Instead of a daily IV, she's now taking 90 supplements a day. Time will tell if her symptoms will go away for good. Nelson says the $40,000 price tag was worth feeling normal again and the only thing she regrets was not doing it sooner.
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