Ticked off at Lyme disease
LINDA KOEHLER/TIMES NEWS Kristina Corbo, center, has been battling debilitating effects of Lyme disease for six years. With the help of her parents, Lenny and Linda Corbo of Reeders, they are hoping she will find the help she needs after seeing a Lyme disease specialist next week.
Kristina Corbo, 22 of Reeders woke up one March morning in 2005 dizzy, off balance and nauseous.
"I thought I had the flu," the pretty young brunette says.
She wishes that was all it was because the last six years have been "horrible!"
Her symptoms lasted about a week. All went away except for the dizziness. Her doctor referred her to an ear, nose and throat specialist because the dizziness had become so severe. He found nothing wrong with her.
She went to see a cardiologist to see if it was heart-related. He found nothing wrong with her.
Rheumatoid arthritis was ruled out and one doctor told her if she felt dizzy she should increase her salt intake.
She learned to live with the dizziness and intermittent joint pain, managing to graduate from Pocono Mountain High School then Northampton Community College, while working part-time at Brodheadsville Family Practice where her mother, Linda Corbo, is an LPN and the practice's administrator.
In May 2010, the Corbos took a vacation to North Carolina. On the plane ride home, her dizziness increased and the pressure in her head felt like it was going to explode. She took a Dramamine but it didn't help. When she got off the plane in Philadelphia, she needed help as she walked into walls, was off balance and very nauseous. It was a long ride home to Reeders. Her mom immediately called her boss, Dr. Bill Martucci. He thought the pressure in the plane brought on her increased symptoms and prescribed Antwret for the dizziness. The next morning Kristina felt like she had weights tied to her feet up to her knees. As the day wore on, the heaviness progressed to the rest of her body and she felt like that for about a week and a half.
She saw an ear, nose, throat specialist who prescribed a nasal spray and an anti-anxiety medication. He thought she was having panic attacks. She saw two more ear, nose, throat specialists who couldn't help her.
"Finally, I told my mom I wanted to go to the ER."
She was admitted to St. Luke's in Bethlehem for three days. They did MRIs of her brain, ears, eyes, neck and spine. They did a lot of blood tests, CAT scans, xrays and "every specialist on call came in to see me. No one had any answers."
Kristina was then referred to Dr. Mahesh Chhabria at Pocono Neurology Association in East Stroudsburg. He tested her for multiple sclerosis and myasthenia gravis, both of which he ruled out.
"He was the first doctor to say my symptoms sounded like Lyme disease," she says.
During Kristina's five-year ordeal, Lyme disease had been discussed by Kristina's mom and her bosses, Dr. Bill and Dr. Donald Hiementz, even though she doesn't know when she was bit by a tick. But when she had Lyme titers (tests) done, the results always came back negative.
Dr. Chhabria and Dr. Bill agreed to prescribe Doxycycline. Within six weeks, the tests proved positive for Lyme disease.
"When we got the report, we both sank to the floor together and cried. The relief was so great that we finally had an answer to what was wrong," says Linda. "It was months of torture to see her in so much pain."
"It was heartbreaking," says her dad, Lenny Corbo.
Kristina went through another three-week round of Doxycycline, but after feeling only about 50 percent better from the first round, it was decided to insert a picc line in her arm, feeding a 45-inch long tube to her heart where she then received Rocephin (an antibiotic) every day for 45 days from Dec. 19-Jan. 19, 2011. She had been feeling somewhat better but the same day the picc line was removed, she was back to feeling, "horrible!" Three days later, she was back on Doxycycline again and has been ever since.
A friend of hers also has Lyme disease.
"She's worse than me. Hers has advanced to where she now has brain lesions. But she told me about the doctor that is helping her and we learned he is one of the country's foremost infectious disease doctors. He is Dr. Brian Scully at New York Presbyterian Hospital/Columbia University Medical Center. I had to wait three months to get in to see him but I have an appointment May 25," says Kristina.
Diagnosis of late-stage Lyme disease is often complicated by nonspecific symptoms. One expert called Lyme the new "great imitator."
Dr. Gregory Bach, D.O. of Hamburg, specializes in the treatment of Lyme and other tick-borne diseases and served as an adviser to President George W. Bush on Lyme disease. He says that Lyme disease is the number one infectious disease in the country, surpassing AIDS, and Pennsylvania has the highest reported incidents in the country.
Twenty years ago, his wife, Debbie, lost 80 percent of her hearing and 50 percent of her eyesight.
"It was a living nightmare. We didn't have anywhere to go," he says of his wife's illness. Finally he heard about Dr. John Drulle in New Jersey who diagnosed her with Lyme disease and began treating the symptoms. She regained her eyesight and has between 35-40 percent of her hearing back. Today she is a prominent and successful dog trainer that teaches helper and companion dogs for the handicapped.
Dr. Bach began training with Dr. Drulle so he could help others like his wife. Dr. Drulle died from a heart attack at the age of 56, due to his Lyme disease.
Dr. Bach says that the disease may be misdiagnosed as multiple sclerosis, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, lupus, Crohn's disease or other autoimmune and neurodegenerative diseases.
"Just because you get a negative test for Lyme, it doesn't mean you don't have it," Dr. Bach says.
Because symptoms so closely resemble the flu and usually go away without treatment, scientists estimate as many as nine out of every ten cases go unreported.
Lyme disease is not contagious from an affected person to someone else. Early symptoms may include fever, headache, fatigue, depression, and a characteristic circular skin rash called erythema migrans. It looks like a bullseye. Left untreated, later symptoms may involve the joints, heart, and central nervous system. In most cases, the infection and its symptoms are eliminated by antibiotics, especially if the illness is treated early. Delayed or inadequate treatment can lead to the more serious symptoms, which can be disabling and difficult to treat.
Doris Krechel of Kunkletown began experiencing tremendous pain in her knees back in November 2009.
"I was taking a lot of Advil but by Christmas I was hurting in my thighs and I had so much pain I started limping. I'd have so much pain while sitting, I'd have to put my hands under my legs to lift them up to get moving. My kids noticed and asked me what was wrong," she says. "There were days I crawled up the stairs I had so much pain."
Finally, she went to see an orthopedic doctor and x-rays were taken. He couldn't find anything but wanted her to have blood work done, which was on Tuesday, Jan. 27. His diagnosis was rheumatoid arthritis.
That following Saturday morning Doris received a phone call from her family doctor, Dr. Frank Romascavage of Brodheadsville, who ordered blood work and eventually admitted her to the hospital.
"At this point, no one mentioned Lyme disease. They're treating me for low hemoglobin and low iron. I was told it was a good thing I came in when I did because I was headed for a heart attack," she says. Doris spent three days and two nights in the hospital.
She can't recall any encounter with a tick and she never had a bull's-eye or rash. Her symptoms included her heart pounding fast, shortness of breath, no ambition, doing less and less but not really aware because her legs hurt so much.
Dr. Romascavage began treating her for Lyme disease and it took months before she could say she didn't have as much pain as before. She now takes an over-the counter arthritis pain relief when she feels pain.
She and her husband, Henry, attended a Lyme disease seminar in Maryland where she heard words that devastated her.
"They said there is no cure. I can't believe I'm going to have to accept the fact that I'll never feel better again. It's very depressing," she says.
Lyme disease can affect the heart causing inflammation of the heart muscle, as in the case of Doris, and Dylon Borger.
For Dylon Borger, a student at Penn State main campus majoring in forest land management and being an outdoor type of guy who loves to hunt and fish, it's a pretty common occurrence to find ticks on his clothing and skin.
By the end of a very hot month of June 2010, he was experiencing dizziness but attributed it to heat exhaustion. When he had another bout of dizziness, he thought it was from the fumes of the tractor as he was helping to bale hay.
On Thursday night, July 8, he was swimming at the home of his girlfriend's parents' home and they pointed out he had some suspicious spots everywhere, mostly on his upper body. Friday morning, July 9, he showed them to his mom, Pam Borger.
She took one look and said, "Oh my God, Dylon, you have Lyme disease." She had been through this once before with his younger sister.
Eight years ago, Dylon's younger sister, Mackenzie, who was five years old at the time, had a tick on her head when Pam found it. She had a bullseye above her right eye. Pam took Mackenzie to the doctor immediately and he prescribed an antibiotic. Mackenzie had blood work done three times before the testing came back negative. She never developed any symptoms and the doctor said that was because she was put on the medication early enough.
So Dylon immediately went to see Dr. Bill Martucci, in Brodheadsville. He did blood work and it was confirmed. He prescribed Doxycycline. Dylon went golfing that same night.
Saturday morning, July 10, he got up around 8:30 a.m., went to the bathroom and then to the kitchen to take his medication. He had to sit down because he suddenly felt very weak.
He fell off the chair, and Pam called 9-1-1. Dylon broke out in a sweat but was cold.
"Then I stopped sweating and it felt like I had taken a long nap. I felt like a million bucks!" he says.
The ambulance arrived. The medics took his vitals. The EKG recorded his heart rate in the 30s but when they took them again in the ambulance on his way to Pocono Medical Center in East Stroudsburg, his heart rate had gone down into the 20s.
"But I felt fine," says Dylon.
At the hospital, he was given all kinds of tests and his heart rate was still very low.
Knowing about his recent Lyme disease diagnosis, the cardiologist told Dylon he was going to need a pacemaker. The Lyme disease was giving him a heart block. Bacteria had formed around his heart, preventing electrical impulses to get through. He was given two strong doses of antibiotics. The antibiotics were to kill the bacteria but they didn't work fast enough to bring his heart rate up. The pacemaker was taped to the outside of his right leg and wires were inserted through his views to his heart. He was not allowed to move.
Dylon was going to be staying in the hospital until his heart rate went up.
July 12 he was still in the hospital, with his leg tied to the bed so he couldn't move it. It was not how he ever thought he was going to spend his 21st birthday.
The morning of July 13, the pacemaker was removed and Dylon was told he could get out of bed.
"I was so happy," he says.
He had to sit in a chair for 30 minutes. He got up to go to the bathroom, with the help of his girlfriend, Rebecca. But he fell off the commode. Rebecca was there and caught him before he fell to the floor.
"CODE" was yelled.
"There were 20 nurses and 15 doctors in there in no time at all," recalls Pam.
His heart rate had dropped down into the teens.
Dylon woke up to hear the doctors talking about putting in another pacemaker. He didn't want that again. But the doctors said they'd put it on his shoulder with a catheter inserted in his vein on the right side of his chest to his heart so he would be able to get up and walk around.
On July 18, the wires were removed and July 19 the catheter was removed. July 20 he took a stress test. He was given an EKG and passed with flying colors. They inserted a pic line in his left arm that went to his heart so he could give himself the medication he would require and was released later that afternoon.
He took his last dose July 30, went to his specialist for blood work and was declared Lyme disease free.
"I felt like a million bucks," says Dylon of the verdict.
He took up right where he left off playing softball, jogging and working.
Today he says he still feels great. He's a senior at Penn State main campus, and works as a forest technician for Appalachian Forestry Services. He's outside all the time, providing services for forest landowners, and says he finds ticks on him all the time.
"But I take a lot more precautions now. I use multiple types of sprays to repel them and make sure I'm well covered."
Dylon and his sister, Mackenzie's Lyme disease appears to have been cured because they had the telltale bull's-eye and rash and were treated immediately, compared to Kristina and Doris, who never saw a rash but have been experiencing all the debilitating symptoms of later stage Lyme disease with no cure in sight.
Dr. Bach and Lyme Action Pa. encourages all Pennsylvanians to contact their senators to ask them to vote to pass SB 210 which would ensure that physicians, insurers, patients and governmental agencies are educated that multiple standards of care exist; insurance reimbursement be provided for treatment rendered in accordance with the standard of care chosen; Pennsylvanian government agencies provide unbiased information regarding multiple standards of care. To read it in its entirety, go on line and type in PA Senate Bill 210.
"Patients have to be their own best advocates," says Dr. Bach.