Impossible Dream? Part 2

continued from Part 1

Clinical Trials

In early December 2017, I received a call from Dr. Regillo’ s office. The subject of the call was to inform me that I have been selected for two different clinical trials. Upon receiving the call, I was immediately uplifted with hope. Then the reality of having to decide about something completely foreign to me overcame me.

One of the clinical trials is testing the ability of ORECEA, a brand name for doxycycline an antibiotic, to retard the spread of dry ARMD. The protocol calls for the oral administration of 40 mg of ORACEA daily. My layman’s understanding of doxycycline is that it is a high-octane antibiotic used to treat difficult infections. I have never been prescribed doxycycline. My only contact with it is my wife was prescribed doxycycline for Lyme’s disease.

I believe that American medicine uses antibiotics too freely in many situations where their use is unjustified. I believe that unnecessary use impairs the ability of antibiotics to work in situations where they are really needed. I also realized that I needed to set that preconception aside and decide about the future of my eyesight based on the facts in front of me.

My first step in the evaluation process was to consider the pros and cons of the ORACEA trial. While the trial would designate my left eye as my study eye, oral administration of the drug would affect both eyes. Since one of my priorities is to preserve the vision in my right eye, a trial that benefited both eyes is a very significant positive. On the other side, I had significant concerns about my ability to tolerate the daily administration of doxycycline for an extended period.

My first outreach was to my internist. I asked him several questions about the implications of taking doxycycline over an extended period and about my ability to tolerate the drug. My internist indicated that long-term administration of doxycycline was an acceptable protocol for the treatment of acne. He did note the potential side effects.

My second outreach was to a college friend who is a practicing ophthalmologist in West Virginia. His opinion was the long-term effects of doxycycline are not a problem until they are. He said that ophthalmologists use doxycycline to treat certain diseases of the eye.

I have decided to decline the opportunity to participate in the ORECEA trial. I believe that doing something every day for two years requires a commitment that I just don’t have. If I’m going to do something every day for two years, I must believe in what I’m doing. With ORECEA, I just don’t believe that it is a potential solution for me. So I will wait for the next opportunity. I am hoping for an opportunity to participate in a stem cell trial. I believe in a cure founded in regenerative medicine. Maybe I’m dreaming the impossible dream but that is my dream.

Note: Bob and Sue both made independent, PERSONAL decisions to wait for the stem cell trials. While they both believe regenerative medicine is for them, it may not be for you. It is important for each of you considering clinical trials to be aware of benefits and risks and how these fit with you and your life. The ORACEA/doxycycline trials would not have gotten this far if they had not demonstrated benefits. Be sure to chose wisely for YOU.


Bob O’Connell is 59 years old. Bob was diagnosed with macular dystrophy in both eyes in 2005 at the age of 47. As the disease progressed, his diagnosis was later changed to macular degeneration. In 2013, his diagnosis was changed to geographic atrophy in both eyes. Bob’s mother was diagnosed with dry type macular degeneration in 2010 at the age of 86. Professionally, Bob is trained as an electrical engineer. Currently, he works for a private equity firm in Dallas that builds large electricity generating stations. Bob lives and works from a home office in suburban Philadelphia. Bob is married and has one son who attends Penn State University. Bob and his family like to travel. Last year’s vacation was a bus tour of western Europe. Bob enjoys music especially blues.

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