SIRACUSA, N.Y. (WSYR-TV) – Lyme disease is complicated and complex. His vague symptoms such as fatigue, headaches and joint pain associated with flu-like symptoms make it difficult for doctors to focus. Once diagnosed, it is a battle to be treated for them.
He is a Dr. Steven Phillips in Wilton, Connecticut, who faces every day. He specialized in Lyme and spent years trying to wrap his brain in how the bacterium works. He is currently working on two drug development projects to find better ways to treat it.
I saw Dr. Phillips for almost two years. During this time, we have tried different treatment regimens, working to recover my life.
To understand the disease, Dr. Phillips says we must first understand why it is so difficult to diagnose with a blood test.
"The tests on the most commonly used Lyme antibodies are over 30 years old and there are data that only about 50% of Lyme patients tested positive for these tests and to make matters worse, it is further hindered by strict interpretative criteria", said Phillips. "The CDC says their reporting criteria, which are the criteria most chain laboratories call a positive test, fail to capture 90% of Lyme cases."
In other words, the CDC criteria used to test Lyme are only 10% sensitive in the diagnosis. So hundreds of patients get a false negative and have to be misdiagnosed or undiagnosed for years.
Let's take a look at how it attacks the body.
Lyme often comes with other co-infections, such as Babesia, Bartonella, Ehrlichia, Anaplasma and Tularemia.
Think of it this way: imagine you have a sore throat, bronchitis and flu. Every infection must be treated with a different antibiotic. The same goes for Lyme and its co-infections.
"Lyme in particular attacks the body in varying ways, partly due to differences in effort and partly due to genetic differences in the patient," explained Phillips. The immune system attacks bacteria, but bacteria often remain a step ahead.
"It's an ancient organism that has had plenty of time to develop ways to overcome the immune response of mammals and the resulting abnormal and ineffective immune response against infection causes many of the symptoms," said Phillips. "That causes doctors, usually incorrectly, to prescribe immunosuppressant drugs to patients when the disease is complex or refractory, when patients really need more antimicrobial treatments."
Phillips goes on to explain that immunosuppressants can temporarily mask the symptoms, but they can also make the disease more difficult to treat.
"There is no cook to book the treatment," Phillips said. There are many species of bacteria and parasites that can be transmitted by the same insect bite. "Because there are so many variables for each case, each must be treated on an individual basis."
Each case is different, but most require long-term treatment. "Short-term antibiotic regimens of a few weeks are notoriously ineffective, with published studies documenting a 61% failure," Phillips said.