Despite 20 bull's-eye rashes, his doc insisted it couldn't possibly be Lyme disease.
http://www.pennlive.com/bodyandmind/index.ssf/2013/01/when_lyme_disease_symptoms_sti.html
When Lyme disease symptoms stick around
View full sizeEric Huck “I had been hiking on the Appalachian Trail, near Fuller and Laurel lakes. Two days later, I realized I had a tick embedded in my knee and in my groin. They were engorged,” said Huck, an avid hiker and bicyclist who lives in Fairview Twp.
Huck enlisted the aid of a neighbor to remove the ticks and went to his family doctor, who prescribed 10 days of doxycycline, the standard antibiotic for Lyme disease, as a preventive measure.
Huck thought that was the end of it — until mid-August of that year when he became suddenly and severely sick.
“I had a high fever, an excruciating headache; my neck was stiff and I sweated through the sheets. My body ached so that it felt like someone had taken a baseball bat to my legs,” he said.
Several days later, 20 bull’s-eye rashes — a hallmark symptom of Lyme disease — broke out over Huck’s body. He went back to his family doctor, who insisted it could not be Lyme disease because of the doxycycline Huck had taken. Instead, he diagnosed it as rosacea and sent Huck home with medication for that skin condition.
Over the next week, Huck got sicker and sicker.
He went to see an infectious disease doctor, who immediately diagnosed Lyme disease and put him on 30 days of doxycycline. Finally, his persistent fever and headaches began to ease, but the effect was temporary and Huck said he began feeling ill again.
He went back to his doctors but, he said, “I didn’t really feel like they were listening to me.”
At the height of his disease, he had joint pain in his elbows, shoulders and knees. He had such fatigue that even walking was sometimes a challenge.
“It affected my ability to concentrate. Some days I could only manage a half day of work,” recalled Huck, who owns an investment firm in Mechanicsburg.
Looking back, Huck said he now knows he was dealing with persistent Lyme disease — also called post Lyme disease treatment syndrome.
“I began researching this and reading that the Lyme bacteria — Borrelia burgdorferi — can hide, change shapes, go dormant and create a biofilm to encase itself in order to survive in the body,” he said. “It’s the great imitator. It’s misdiagnosed as Alzheimer’s, autism, arthritis, Parkinson’s, chronic fatigue, MS.”
The existence of persistent Lyme — and whether it should be treated with long-term antibiotics — has been a source of controversy. Patients who say they have it and their “Lyme literate” medical doctors are at odds with those who set protocol for treatment of Lyme disease, such as the Infectious Diseases Society of America and the Centers for Disease Control and Prevention.
A review panel convened in 2010 to examine 2006 IDSA guidelines for treatment of Lyme found that “there is no convincing evidence for the existence of chronic Lyme infection and that long-term antibiotic treatment of chronic Lyme disease is unproven and unwarranted.”
The International Lyme and Associated Diseases Society, a medical society focused on accurate diagnosis and appropriate treatment for Lyme, says the IDSA failed to take into account peer-reviewed, published evidence confirming persistent Lyme disease.
Dr. John Goldman, infectious disease specialist with PinnacleHealth System in Harrisburg, said he sees about 10 patients a month who have lingering symptoms of Lyme disease.
“It’s clearly a real syndrome, but it’s more an effect of having had an infection rather than having an active infection,” he said. “They are frustrated with being sick, with having a chronic illness. Most often, they are tired, achy; they don’t have the energy they used to have; rarely they report a ‘brain fog,’” he said.
Goldman said he looks for signs of another disease such as lupus, and if not, he treats patients much like he treats fibromyalgia — with anti-inflammatory drugs, muscle relaxants and amitriptyline to help them sleep. He also encourages gradual return to exercise and complementary therapies such as massage, acupuncture and yoga, if they help.
“I typically see people very slowly getting better over time,” Goldman said.
Huck said people with persistent Lyme often feel like outcasts. “The medical community doesn’t understand us; the insurance companies won’t pay for treatment and it’s hard to explain to our family and friends,” he said.
Gail Sheffer, board member of the York Lyme Disease Support Group, said Huck’s experience is common. “I’ve met people all over the state who go years trying to find out what’s wrong with them. A lot of people are misdiagnosed,” she said.
Sheffer, a Wellsville resident, said she went five months before getting a correct diagnosis in 2003. She got better but relapsed four years later, after a bout with the common cold. She has been on antibiotics since then.
“On my best days, I’m 80 percent of what I used to be. On my very worst days, I have excruciating headaches and I’ll be on the couch,” Sheffer said. “I’m fully convinced long-term antibiotics work. I don’t want to think about how bad I’d be without them.”
Finally, after connecting with other Lyme disease sufferers in the area, Huck found Dr. Norton Fishman in Rockville, Md., who describes himself as a “Lyme literate” integrative medicine doctor. He’s been a primary care internal medicine doctor for 45 years, but now devotes 80 percent of his practice to Lyme disease, he said. Many of his patients are from the midstate.
“I was treating patients for chronic fatigue and fibromyalgia when what they really had was a continuing infectious process called Lyme disease,” said Fishman, who became convinced that persistent Lyme disease existed and could be helped by long-term antibiotics, along with nutritional remedies, after many of his patients sought and found relief from a Lyme literate doctor in New York.
“The problem is that most people say, ‘you’re post infection.’ No, this is a continuing infection that’s indolent. There have been many studies that show these organisms are persistent in spite of medication,” said Fishman, who likens his care of Lyme patients to “detective work” because each person’s genetic makeup, exposure to multiple bacteria and response to treatment is different.
Fishman, who said he stopped participating with insurance carriers because his office visits required more than the 15-minute slots allotted for reimbursement, said most doctors don’t test adequately for all the bacteria that could come with a tick bite and they don’t realize that antibiotics other than doxycycline must be prescribed to treat the other infections delivered by the tick.
Huck tested positive for co-infectors and began taking other long-term antibiotics, herbal supplements and natural antibacterial and antiviral remedies.
“I have slowly been getting better for the past three years,” he said, attributing at least some of that to long-term antibiotics.
The Infectious Diseases Society of America, however, warns that inappropriate use of antibiotics, especially when given intravenously, has been shown to lead to deadly blood infections and serious drug reactions.
Goldman agrees, “You certainly don’t deny that people are suffering or that Lyme disease is affecting their life in a great way, but what we can say is that giving prolonged courses of antibiotics doesn’t help and could be dangerous.”
However, Fishman said, “The long-term use of statins and cardiac medications have side effects too. You have to measure whether the effects of the disease merit the treatment. I keep doing this because I see people who are sick, sometimes for years, are getting better.”
Fishman also prescribes lifestyle and nutrition changes for patients with persistent Lyme disease. “Find out if you are allergic to some foods you are eating and how to eat to support the immune system,” he said.
Recently, Huck traveled to Germany to receive a month of photon light therapy, which is not approved in the U.S. “It uses a quantum mechanics principle to put light photons into the body to boost immunity,” he said. The therapy, which is standard treatment for Lyme disease in Germany, is said to detoxify the body of bacteria and viruses and promote repair of damaged cells.
“I’m about as plain vanilla of a person as you can get. I’m very research and evidence based,” said Huck, explaining that swerving away from conventional medicine protocol is not normally in his nature. “But when your health gets away from you and you keep hitting walls, you’ll do something crazy for a better quality of life.”
So far, Huck feels the best he’s felt since being bitten. “I’m even thinking of trying to ride a stationary bike. I am light years better than I was, but I am not symptom-free,” said Huck, who estimates he has spent $75,000 out of pocket on Lyme disease treatment. “I’m a little nervous to say this, but I’m praying I’ve turned a corner. This disease has altered my life so much.”
- WRITTEN BY CAROLYN KIMMEL, For The Patriot-News
