Unrecognized epidemic creates problems for many

Gazette.Net
It is hardly ever talked about, and most who have the disease don't even realize it, even if they have been tested. Lyme Disease is a major medical problem in the US, according to the Lyme Disease Association of Pennsylvania.

The problem with Lyme Disease is that the testing for it is not very reliable. Many will have the test done and it will come back negative. Doctors will then treat the patient for something else, and the problems will only get consistently worse.

Fortunately for Carrie Ortiz of Mount Airy, her test had come back positive when she was tested. She was treated with antibiotics for several weeks. More testing was done, and the unreliability of the testing was showing.

"My tests were coming back with some positive and some negative," said Ortiz.

Ortiz was diagnosed about five years ago, and has actually had symptoms for about six years now.

"A negative blood test does not completely exclude the disease," said Dr. Nathan Wei, a rheumatologist in Frederick. "And a positive test alone does not confirm the disease."

According to Johns Hopkins University Arthritis Center, Lyme Disease is a bacterial infection usually contracted from a tick bite. The symptoms are very similar to the flu and if untreated can cause severe damage or even death.

The most common symptom is a bull's eye rash that will develop around the initial spot of the bite.

Sometimes symptoms will show up right away, sometimes they will begin slowly and other times they will take weeks to show up. One sign that should be taken with precaution is flu-like symptoms in any season besides winter.

Ellie Bonde of Mount Airy had noticed a bull's eye mark across her shoulder and after 48 hours the mark was gone completely. Fortunately she went to the doctor the same day she noticed it. The mark was so obvious, no testing was done, and it was verified by both a dermatologist and doctor that she had Lyme Disease. She was immediately put on 100 milligrams of Doxycycline twice a day for three weeks.

"I was really lucky to have it in a place where I could see it," said Bonde of her bull's eye.

Bonde keeps a chart of all symptoms she is developing to give to her doctor. This is recommended by Johns Hopkins for people who are experiencing similar symptoms.

An infected deer tick must be attached for 24 for 48 hours before it can transmit Lyme Disease, according to Dr. Wei.

The problem with testing is not all doctors are as knowledgeable as they need to be to treat the disease. According to Dr. Wei, Lyme Disease is a form of arthritis because it affects the joints and muscles. The symptoms of Lyme are very similar to those of rheumatoid arthritis.

"Lyme Disease is one of over 100 different types of arthritis," said Dr. Wei.

One Lyme patient, who has asked not to be named, was treated for rheumatoid arthritis for about 10 years before it was proven that he was actually suffering from Lyme Disease. The body and muscles aches along with the fatigue he was suffering are some of the same beginning signs of rheumatoid.

Along with the disease, other diseases referred to as "co-infections" can be carried with it. Some of the common co-infections are Ehrlichiosis, Babesiosis, Bartonella, and Rocky Mountain Spotted Fever.

The patient who has asked not to be named is also suffering from Babesiosis along with the disease.

His treatment for his infections is a little different than the treatment Ortiz is receiving. He has what is referred to as a pick-line in his arm. It runs to his chest to send the antibiotics through his body. The worst part is that the tube must stay in all the time because his testing is done five times a week and it is impossible to keep taking the tube in and out.

When Ortiz was diagnosed, she had trouble finding a doctor in the Maryland area that was knowledgeable enough to treat her correctly. Both she and her husband have the disease. Together, they make a 12-hour round trip to Hermitage, Pa., where they receive treatment once a month. They are coming up on their 14th month of treatment. Although they are doing much better than they were last year, they both still have symptoms.

"The bacteria changes shape to hide from the antibiotics," said Ortiz. This makes it hard for it to be treated because the antibiotics won't recognize the disease and won't be able to fight it.

Although there are more doctors in the area now who specialize in the disease, Ortiz pays for all of her treatment out of pocket because insurance doesn't cover all the procedures and testing that need to be done. It would cost them more than $1,000 to be re-tested by a new doctor in the area and it would have to be out of pocket.

The problem with many doctors who aren't specialized in the field is that "they try to follow the Center for Disease Control (CDC) guidelines and won't think out of the box," said Ortiz.

"The disease is not recognized as the epidemic it is," added Ortiz.

"Since Lyme Disease may look like many other types of arthritis, the diagnosis is not always an easy one to make," Dr. Wei said. "Over-diagnosis is probably more common than under diagnosis."

Ortiz and her husband have developed a support group in Mount Airy at the Mt. Airy Bible Church. They meet on Friday, sometimes Saturday depending on the calendar, once a month.

It is a place for people to come and just talk to each other and know that they aren't the only ones out there feeling this way.

"With the way we were feeling, we figured people needed support," said Ortiz.

Some visitors to the group may not have the disease, but know someone with it or have information on it to share with those at the meetings.

The important matter for people to realize is that many are walking around with Lyme Disease and not getting properly treated because their doctor may not use a reliable test. The best test to use to find an answer is the Western Blot Test, which is recommended by Johns Hopkins. It is important to find a lab that makes a special effort to focus their testing on tick-borne diseases and have the procedures available to make the tests more reliable.

If a tick is found, it is possible to save the tick in either a plastic bag or a bottle and take it along to the doctors, according to the Lyme Disease Association of Pennsylvania. There is testing that can be done for a price, but it is a precaution that may be worth the money.