Family speaks out about battle against babesiosis:
Millstoner contracts first case in 2005
of rare disease caused by tick
MILLSTONE -- Ed Miller, 86, recounted his bout with babesiosis as "two weeks in hell."
Babesiosis is a rare illness caused by a parasite that lives in some ticks. Deer ticks carry the parasite that causes this disease.
On July 1, Miller, who has lived with his wife, Elaine, in Millstone for the past 38 years, became ill with what doctors at CentraState Medical Center in Freehold Township would later determine to be the first case of babesiosis they would treat in 2005.
"I knew something was wrong because he reads two newspapers a day, and that day he didn't read any," Elaine said.
Feeling weak and fearing the worst, Ed, who has an extensive medical history including artery disease, congestive heart failure, diabetes and bladder cancer, told his wife to take him to the hospital. That would be the last thing he remembered for the next 14 days.
"I remember it was my decision to go to the hospital," Ed said, "and I hate having to go the hospital."
Elaine said, "When we got to the hospital, the nurse at CentraState took his pulse and it was racing," Elaine said. "It was in the 160s."
Elaine is a nurse at CentraState, and Ed is a retired research physician. She said she knew the doctors had to get her husband's heart rate under control. She also remembers Ed's blood pressure dropping really low.
"At first, the emergency-room doctor told us that the lab tests were inconclusive," Elaine said.
The first night of what would turn into a 21-day hospital stay was the worst, according to Elaine.
"During the night, his temperature spiked, and he had cold sweats," Elaine said. "His blood pressure continued to drop, and there were signs something horrible was going on."
Elaine, who was worried that her husband wouldn't make it through the night, said she thought nothing of the doctor asking her if her husband had recently traveled to Africa.
She said her husband's symptoms were similar to malaria.
"He didn't have an appetite, and he was confused," Elaine said. "His fever went up and down. He ended up in the intensive care unit (ICU) because the babesiosis compromised his renal area, but because his blood pressure was so high, they couldn't put him on dialysis."
Ed's was a rare case, Elaine said, in that the babesiosis kicked all of his pre-existing medical conditions into disarray, causing many other complications besides the usual effects the disease has.
"It was intense," Elaine said. "Everyone in the family came back from vacation to be with him."
According to research compiled by Robin Segal, CentraState's medical librarian, symptoms of babesiosis include fever that can be as high as 104 degrees Fahrenheit, chills, sweating, weakness, tiredness, headaches and a poor appetite. Some people with the illness may not have symptoms. However, sometimes the illness quickly becomes serious and can even cause death. Babesiosis can affect individuals of all ages, but most people who get it are in their 40s or 50s.
CentraState's Dr. Leslie Sojka and internist Alfred DeLuca told Elaine that the body they found on Ed's red blood cell -- which looked like a speck of pepper -- was a parasite caused by a deer tick.
"We live in the woods," Elaine said. "My husband has been bitten by ticks many times and has had Lyme disease, but it had never been like this."
Babesiosis infections have been reported in many parts of the U.S. The disease was first recognized in humans in 1969 on Nantucket Island, Mass., but it has now been recognized throughout the Northeast and in a few other parts of the country. The areas where babesiosis has been reported most often are Connecticut and on the islands off Massachusetts and New York, according to CentraState.
Last year, there were six cases of babesiosis treated at CentraState. According to the hospital, Ed's is the first case treated there this year.
Once the doctors identified Ed's illness as babesiosis, Elaine said, "The process started."
The doctors used two antibiotics to treat the illness. In Ed's case, however, he needed a team of specialists to ensure that his other already compromised internal systems would not fail, according to Elaine.
"He needed a blood transfusion because the parasite was eating away his red blood cells," Elaine said, "but because of his congestive heart failure, he couldn't receive one."
Elaine said Ed underwent total system care.
"The doctors at CentraState really pulled him out of this," Elaine said. "He had a renal team, a cardiac group watching his heart and a urologist because he was experiencing terrible bladder spasms."
"I have no memory of any of this," Ed said. "I don't even have a recollection of who came to the hospital to see me at that time."
During the eighth day of his stay in the ICU, Elaine said she felt as if he was "running out of time."
"It was just one thing after another, and as far as his kidneys were concerned, I just didn't think we had any more time," Elaine said.
It wasn't until four days later that Ed received blood and was able to leave the ICU.
"Then," Elaine said, "he went into rehab and came home on July 22.
"We are so grateful for the support we got from the staff at CentraState," she said. "It was doctoring the way it should be."
"I received excellent care at the hospital," Ed said.
The babesiosis and/or complications that arose from it caused Ed to have difficulty with his speech and expression, Elaine said.
"He was experiencing aphasia, which means that he knows what he wants to say, but just can't grab the right words," Elaine said. "Although this could have been the result of a minor stroke or an effect of something else that was going on with him, the aphasia was at its peak with the babesiosis."
According to the CentraState library, complications from babesiosis can be worse if a person has had an organ transplant or his or her spleen removed, or has HIV infection, AIDS or other problems relating to the immune system.
Despite his pre-existing medical conditions, Elaine said, Ed is "slowly getting back into shape" after his bout with babesiosis.
"We're very lucky that he pulled through," Elaine said. "He's fine now, and he doesn't remember how bad it was."
Ed said, "I know they almost lost me."
The experience was so traumatizing to Ed, Elaine and their family that the couple decided to speak about what happened.
"We want people to know," Ed said, "because people with this disease need to start treatment immediately."
Elaine said, "Living in Millstone, in this rural area, there are a lot of ticks. While I was in the hospital with Ed, I showed the nurses that I had two walking on me."
The Millers want area residents to protect themselves and their loved ones from harmful tick bites.
According to research compiled by the CentraState library, tick season is at its peak from May through September.
To prevent babesiosis, people should use insect repellent when outdoors, especially in wooded or grassy places. Products with 10 to 35 percent DEET provide good protection under most conditions, according to CentraState.
CentraState recommends making yards less attractive to ticks by mowing the lawn and pruning trees. While in the yard, individuals should wear solid, light-colored clothing, with their pants tucked into their socks.
Early detection and removal of ticks is important, as a tick must be attached to the body for at least 24 hours before it can pass on the parasite that causes babesiosis, according to CentraState.
To remove a tick, CentraState suggests using fine-point tweezers, grasping the tick's mouth close to the skin and applying steady outward pressure. It is also important not to use petroleum jelly, noxious chemicals or hot objects to remove a tick because removal can increase the chances of infection, according to CentraState.
People who live outdoors or spend a lot of time outside should check themselves and their with family members, as well as their pets, every day, according to CentraState. If a tick is found, it should be removed but saved to show the doctor just in case babesiosis develops.
Symptoms of babesiosis can take anywhere from one to 12 months to develop after a tick bite, and a shorter time for those who have weakened immune systems. Infected individuals cannot spread the disease to others, according to CentraState.
-- Jennifer Kohlhepp
The article above seems to make American Babesia a rare finding. The reason it is rare in NJ is because it is not tested for as a Lyme co-infection. Further, the lab mills commonly used are very poor and come up negative with patients that are clearly infected or "positive" with classic clinical symptoms, a positive blood cell examination with the Babesia inside the red blood cells, and two other labs reporting a "positive." Most American clinicians have never been trained in the subtle issues in diagnosing Babesia. And were never educated about mild American Babesia in medical school or during their residency.
Dr. Schaller can neither support not oppose the material printed above. You are encouraged to discuss this with your own physician and to do your own research. Currently, this is a debated issue in medicine.