Corey May: Mystery complicates Lyme disease treatment

On Sept. 22, 2015, I received a kidney transplant at Allegheny General Hospital. Ever since, I have done everything within my power to be grateful for and reverent to my new kidney, which has served me well — until now. It is under attack.

Even with total clothing cover, I got bit by a nymph deer tick, the size of a pinhead. Today, Lyme disease had turned my health upside down. This is only partially because of the antibiotic resistance to the coinfections of bacteria, viruses, fungi and parasites that ticks carry; it is also because of the lack of doctors in the Pittsburgh area qualified to treat the complications.

Lyme disease is serious and debilitating, yet its mystery prevents accurate statistics, and proficient health care, even at the lowest standard of care for patients. In many people, the effects of the bite do not manifest for years, and many do not even know that they were bit because ticks are so small. Most do not know that you can test negative for Lyme, but still have its adjoined coinfections.

Thankfully, when I got bit, I saved the tick and put it in a baggie. I’m not sure why I did that, but I’m very thankful that I did. The information that can be gained from the tick analysis can guide your treatment and save you from years of pain.

Knowing what you are dealing with is the first line of defense. This is because doctors and universities studying Lyme disease and coinfections have learned from research in infectious disease and genetics that each tick carries invaders that are genetically significant and cause different symptoms. Knowing this weaponizes doctors with the necessary bioscience to plan a course of treatment with specific parameters that allow antibiotics to work. If this process is neglected, the infected person can be left to years of antibiotics that will never work.

Having this base knowledge, I set out to find a Lyme specialist in Pittsburgh, and one who could also deal with the kidney function decline. I couldn’t find one in Pittsburgh. My search for experts led me to clinics and doctors in the western United States, where the tick infection rate is very low. To understand what Pittsburgh was lacking, I researched and called doctors who were Lyme specialists.

Current, standard research is based on the need to understand why standard of care treatment is ineffective. The solution and treatment involve extensive and expensive lab work to determine which of the many infections a person has, and how to kill it off at the cellular level. (The goal is to destroy a biofilm that protects the virus and denies antibiotic entrance into the cell.) Beyond that, much of the treatment is affordable: antibiotics, herbs, vitamins and easily available medicines. Without targeting the correct medicines, antibiotics are being dumped into the body aimlessly.

Doctors who do “specialize” in Lyme come in all sorts. Most special clinics will not take insurance and require cash payments. I’ve seen $3,000 to $45,000 spent a month for treatment in the western clinics. Complicate this problem with a kidney transplant and the coinciding rejection medicines, which are already absorption-sensitive, and it becomes a daunting task for a lay person to get his or her best chances of survival. Even in Pittsburgh, one of the greatest medical cities in the world, you are left alone to figure out a myriad infection like Lyme disease.

Corey May is a Wexford-based writer and producer.