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.
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 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. 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. My wife 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 P wave and severely retarded QT 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
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 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 albeit my QT wave was still severely retarded. With
things now stable, I was released and sent home.
You 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 reaction,
I came home. 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. 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. There were signs that other organs were likely experiencing damage
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.
[Edit: The blood panels did indicate several key levels at the edge of normal
marins]
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 failure, kidney failure, sudden cardiac
arrest or 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 a few weeks 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 bothersome 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 issues
with the P or QT waves. If any are 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 or brain damage, sometimes resulting in sudden
death in severe cases. 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. 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.
[Edit September 25, 2010: In early June, an 18 core biopsy was performed on my prostate
and cancer was found. I've since had a radical prostatectomy using Da Vinci
robotic surgery. The cancer was caught in early stage, low grade, well confined,
with an excellent post-operative pathology report. While there remains an abnormal
prostate antigen level post surgery, it it believed that it could be from prostate
tissue left in as part of the nerve sparing procedure. It could also be indicating
a spread of the cancer and unfortunately, there are no reliable tests that can rule
it in or out. Only time and a series of testing will shed light on this issue. At
this time I am seeing an oncologist and on hormone therapy and a vegitarian diet
to reduce my antigen levels pending further investigation of the cause. As a meat
eater, this has been quite an adjustment but I have to admit that my energy levels
have really taken a very positive jump and I sleep much better at night.]
[Edit September 25, 2010: It has been some months since the writing of this blog
post. I have nearly fully recovered from the effects of the Cipro and Levaquine.
My QTc wave has reurned to normal ranges. The vision problems, headaches, and hand
shaking has resolved. I'm still on antiarrhythmic heart medication but my doctor
and I are discussing discontinuing its use. Recent blood panels are normal. My blood
pressure is still borderline high (138 / 79) but it is most likely due to all of
the down-time from surgery and resulting loss of my normal exercise regiment. I'm
hoping that as I ease back into a daily rigerous exercise plan, my blood pressure
will return to normal.]
[Edit April 25, 2011: I'm off the antiarrhythmic heart medication now. My blood
pressure at rest is back to normal (127/72), my QTc wave is normal, and my heart
rhythm is normal. I started an exercise program but tweaked my knee while lifting
a heavy object and turning on it. Arrgghhh! So, I'm resting my knee for a few days
with hopes of resuming my exercise progam. Anyway, I'm finally feeling great and
back in the game. It has been a long trial (over a year) but my rebound was complete.
There are no lingering symptoms from my fluoroquinolone poisoning thank goodness!
I since purchased a medical bracelet to warn doctors of my sensitivity to fluoroquinolone
class antibiotics in the event I should be admitted to the emergency room in the
future.