Some six months ago, I had a PSA (prostate specific antigen) test come back indicating possible cancer. Immediately, I had flashbacks to 10 years ago when my life turned into a nightmare over one of these tests. To make a long story short, back then I was advised by my doctor to sign up for a cancer research program at John Hopkins as it seemed I had an aggressive form of cancer. I lived for two to three months thinking I was likely to die soon. In the end, it was found that I didn't have cancer but rather a case of prostatitis - a fairly common infection of the male urinary tract that occurs for unknown reasons. Following a four week course of antibiotics, the problem was solved.
Following that experience, I made up my mind that if I should ever test positive with a PSA test again, I would insist on a course of antibiotics first before submitting to a biopsy or allowing the doctor to convince me that I had cancer. This time around, that's exactly what I did. Little did I realize that I had unknowingly set the stage for a whole new nightmare unfolding. In my first recent PSA test, my total PSA level was 4.9 with a free PSA level of 21%. When the free PSA level is above 10% it is usually indicating that there is something going on that is less likely to be cancer. Below 10% generally indicates the possibility of cancer is quite high.
Comfortable that the "gray area" of the total PSA and fairly safe free PSA level was pointing towards an infection, I began a four week course of Bactrim, a common antibiotic used to treat urinary tract infections. At the conclusion of the four weeks, I had another PSA test done and it's results were reassuring. My total PSA level dropped to 4.2 - moving in the right direction. So, my doctor, feeling the infection wasn't entirely cleared up, placed me on an additional two months regiment of Bactrim. I did okay on the antibiotic with the only side effects being nausea and lightheadedness.
After completing the two month regime, I had another PSA test done. It came back with some rather worrisome results. My total PSA level shot up to 5.1 while my free PSA level dropped dramatically to 6%. Recall that a free PSA level below 10% is generally indicating cancer. My concern was that perhaps an infection had masked cancer. My urologist prescribed a stronger antibiotic called Cipro, which I was to take for two weeks prior to a biopsy that had been now scheduled. This is where the nightmare really began.
After taking the first dose of Cipro, I started feeling pretty bad. Thinking it was a strong antibiotic that was to be expected. I was sadly mistaken. Within hours of taking my second dose, I started feeling horrible. I started having intense pain in my stomach then in both kidneys. Over the course of only two or three hours the pain travelled upwards into my chest. Then the real problems began. My heart beat became very irregular and my pulse shot so high I though my heart was going to leap out of my chest. I started to feel very weak and felt cold and clammy. My chest began to tighten and I started to feel pain and pressure in my mid back. It seemed certain I was having a heart attack.
Fortunately we live only five minutes from a hospital. Judy rushed me to the emergency room while I struggled to remain conscious. I was admitted immediately and placed on an EKG to assess what was going on. The EKG indicated clearly that I was having a heart attack. It showed a weak and delayed P wave, indicating possible damage to the aorta and an ischemic attack of the left ventricle. I was in bad shape according the the EKG strip. A cardiologist was immediately called in and I was placed in critical care and placed on medications to reduce ongoing heart muscle damage and dilate my blood vessels to make my heart's work easier.
Once I was stabilized somewhat, they rushed me off for CT scans of my heart and major arteries. Blood tests for cardiac enzymes common when the heart muscle dies were also sent to the lab. This is where things started getting interesting. Both the CT scans and the cardiac enzyme tests showed that there was nothing physically wrong with my heart. It was realized that somehow my heart's pulse circuitry had somehow become short-circuited. The lights came on. The Cipro antibiotic was known in some cases to affect the heart's calcium channels. In my case, I had a severe reaction that nearly caused coronary arrest. I was taken off the Cipro immediately and spent the next three days in the hospital recovering. I had a heart stress test done on the final day. The results showed I have a very healthy heart. With things back to normal, I was released and sent home.
Well, one might think this was a good ending to the story but there was more to come. Needing to be on antibiotics for the upcoming biopsy, the doctors decided to put me on Levaquin just prior to release from the hospital and watch my heart to make sure I wasn't going to react to it. After the second dose and no noted problems, I came home. Things went well so I continued to take the Levaquin over the course of the two weeks up to my biopsy.
The biopsy results concluded that I did not have cancer but rather an obstinate prostate infection. Curiously, it was the antibiotics in my system that apparently affected my free PSA levels, pushing them into a region that falsely indicated cancer. The decision was made to stay on Levaquin for two months then recheck my PSA levels to make sure the infection had cleared. So over the next four weeks I continued to take the Levaquin.
As time progressed, I started to feel run down, developed a shaking in my hands, changes of vision, problems with balance, anxiety, and muscle and joint pain from head to toe. I've never had problems with anxiety before. I was told these were fairly common side effects of Levaquin. Last Saturday, things took a turn for the worse. It was my heart again. I had developed a rather severe case of tachyarrhythmia. I immediately stopped taking the antibiotic and made an emergency appointment with my doctor. He got me in right away. He was shocked by what he discovered.
Just two months ago, my resting pulse rate was around 55-60 with a blood pressure of around 117/70. Pretty healthy for a person my age. Now, at rest my pulse was close to 100 with a BP of 195/90. My heart's rhythm was irregular, indicating circuitry issues again. I was on a race to either a stroke or heart attack, whichever was to kill me first. There were signs that other organs were likely damaged as well. I was placed on cardiac medication to slow the heart rate and dilate my blood vessels and placed on Valium to counter the anxiety. Eight different blood panels were taken and sent off to the lab for analysis. The results have not come back yet.
My doctor explained to me that I have what is medically termed fluoroquinolone toxicity, a condition where the antibiotic collects as a toxin in the heart, brain, muscles, and other organs. In severe cases, it causes death by liver, renal, or heart failure. It can also cause death by stroke. I am fortunate to be writing about it as my condition had become quite severe. The good news is in most cases, once one stops taking the antibiotic, most, if not all of the damage will reverse over two to 24 months. At the time of writing this blog, I've been off the Levaquin one week. I'm still shaky and my balance is still off, my vision is improving, I've been having "ice pick headaches", my energy levels are slightly improved and the medications have greatly improved my heart rate and blood pressure. The valium has dramatically improved my anxiety with no apparent side effects. Overall, I'm feeling a bit better but have some way to go before I feel normal again. Nonetheless, my personal outlook is quite positive.
For anyone reading my story, I would like to impart some wisdom to you. Cipro, Levaquin, and all other antibiotics in the fluoroquinolone class are dangerous, potentially deadly drugs, typically used only in last resort treatments. Many doctors don't understand how dangerous these antibiotics are and will routinely and inappropriately prescribe them as a first line treatment. If you are prescribed a fluoroquinolone antibiotic like Cipro or Levaquin make sure you ask your doctor if there isn't another non-fluoroquinolone antibiotic that is effective. If you do have to take this class of antibiotics, please ask your doctor to arrange for an EKG evaluation immediately upon starting the drug. Make sure the doctor is looking specifically for P wave or QT wave retardation. If any is noted, stop the drug immediately else it could potentially kill you.
Most people tolerate fluoroquinolone class antibiotics just fine. Up to 20% - 30% have mild to moderate side effects. Up to 1% to 2% have severe reactions with many of them suffering heart, liver, kidney and brain damage, often times resulting in sudden death. I was lucky to be married to an excellent nurse who worked in an ER early in her career else I would likely be dead myself. These are not drugs you should take casually and without certain tests to make sure you won't have a severe reaction. I hope my experience will underscore how important it is to take the black box warnings on this class of antibiotics seriously.