Health Team

Undetected Lyme disease nearly killed Duke researcher

Posted September 22, 2010
Updated September 23, 2010

— Dr. Neil Spector, a breast cancer researcher at Duke Comprehensive Cancer Center, was always a picture of good health, but while practicing medicine in Miami in the mid- to late 1990s, something was wrong.

"I just felt like I was running on low octane," Spector said.

He learned that his heart was beating out of rhythm, but he couldn't imagine why.

"I lived in New England for a number of years, and I used to run in the woods, and I've been to Cape Cod. Could this be Lyme disease?"

Prevalent in the Northeast and transmitted by ticks, Lyme disease is a serious health condition that can lead to complications involving the joints, heart and nervous system if left untreated.

The classic mark is a rash that looks like a ringed bull's-eye target around the tick bite, but not everyone has it. Symptoms can often be confused with other medical problems.

One test showed Spector's exposure was extremely high, but a second test was negative. His doctors said he needed a pacemaker/defibrillator implant, which should have made him feel better.

"I didn't feel better," he said. "I kept feeling pretty bad."

Dr. Neil Spector Undetected Lyme disease nearly killed Duke researcher

Then, he developed arthritis and was given an antibiotic, which cleared it up. But it raised a question.

"Now, I've got arthritis that goes away with doxycycline, which is the antibiotic you use to treat Lyme disease," Spector said. "I mean, this has to be Lyme disease. That test had to be wrong."

Spector kept pushing to be tested for Lyme disease. Another test in 1997 confirmed Spector had the disease, but it had already caused damage.

After starting work as a breast cancer researcher at Duke in 1998, his heart continued to decline.

Last July, Spector's doctor put him on a heart transplant list, and within 36 hours, a donor heart was available. The surgery was a success.

"Forty-eight hours later, I was walking three miles around the cardiology floors," Spector said.

Now, he's back to working full-time as a researcher and a heart disease volunteer with the American Heart Association.

On Saturday, he will participate in the 2010 Start! Triangle Heart Walk, which raises money to fund research and education efforts of the American Heart Association.

"I'm the captain of one of the Heart Walk teams," Spector said. "We'll be doing our share to help heart disease. That's just an incredible thrill for me."


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  • jimmycrackcorn Sep 28, 2010

    I had an itch on my lower ribcage one day and when I went to scratch I felt a tick walking up my side. I removed the tick and he wasn't embedded or anything. However a day later I had an itching again and noticed a small sore. About a day later, I had a HUGE bullseye on my side. I called the doctor and they were like "Yeah, whatever". So I went down to the clinic and told them and again they were like "Yeah, whatever". So the nurse asked to see it and when I showed her the classic bullseye rash her eyes widened and she looked shocked. I was like "See, it is a bullseye!!!" The Doc came and had the same reaction. I don't think they beleive people can get Lyme disease in NC for some reason???!!?

    They ended up putting me on Antibiotics and I don't think I have any long term affects.

  • dougdeep Sep 28, 2010

    Don't be fooled, Lyme disease is alive and well in NC. The military is taking precautions and you should too.

  • The Deadhead Sep 28, 2010

    I took doxycycline for an infection a few years back, and it caused my ears to ring (tinnitus) really bad after about 4 days on it. I told the doctor, and he did not beleive me. The doc got his blackberry out and scrolled through a few pages and then said that this drug is not toxic and therefore should not be causing my ears to ring. After stopping doxycycline, it took a good 2 weeks for the ringing to stop.

  • LongTimeComing Sep 27, 2010

    Thank you for posting this. My husband was diagnosed with ehrlichiosis a few months ago and took antibiotics for it. Recently he has been depressed, not feeling right, and apparently has also had arthritis-like aches that he didn't tell me about. He is going to get more tests because of this article. Thank you.

  • youngkm Sep 24, 2010

    It is wonderful that Dr. Spector was able to receive a heart transplant and is doing so well. It is a testimony not just to how far medicine has come within cardiology, but a testimony in how far we have NOT come as regards testing and diagnosing Lymes Disease.
    I particularly want the NC Medical Community to embrace the fact that Lymes Disease is prevalant in NC and stop denying it's not, just because CDC numbers may not be at the level they believe to support Lymes in NC. The # of those infected in NC has to be much higher than infectious disease Drs. in NC believe because so many aren't being properly diagnosed. My sister was diagnosed 7 years ago, she never was out of the state of NC but must seek treatment in another state. My niece was "potentially" diagnosed two weeks ago (her job exposes her daily to NC woods). However, there is not adequate testing unless you go through a CA co. for $1000 out of pocket. It is a devastating disease and NC needs to be PROACTIVE.
    I ask that

  • The Fox Sep 23, 2010

    Going through the early stage symptoms now. Initially had a negative test and was given a Z-Pak. Worked briefly. Later found a dead tick and then developed a circular rash/sore at the site. On Keflex now for treatment as I'm allergic to Doxy. Definitely have one of the family of bacterium. Both my doc & I were persistent & proactive. I pity all those that don't follow through.

  • aconsmith Sep 23, 2010

    Oh dear -- this is SO misleading -- how long a course of Doxy was he on for his diagnosis of Lyme? It sounds like it was short term and this would not have cured the Lyme and perhaps he still very much has Lyme despite his new heart. Please tell us more in a followup on his Lyme dx and whether the spirochetes that drilled their way into his heart have since been arrested. If so, where did this treatment take place since NC is one of the more challenging places to get treatment for Chronic Lyme? This is a stellar opportunity to educate the public on the devastating effects of this disease as well as the desperate need for long term, effective treatment.

  • pinelady110 Sep 23, 2010

    Thank You WRAL and Dr. Spector for telling your story. There are many being misdiagnosed and told their tests are neg., or they don't have enough bands to say pos., or not told retesting after taking antibiotics is required in many. If they had told you to take that one Pos. test and run to a LLMD you would not have had such damage as to require a transplant. We have Millions being misdiagnosed with all syndromes of unknown origin, not only in the US but other countries as well now that they too have figured out the guidelines placed by the CDC/IDSA that you have to have so many of this/that bands to say pos. is wrong. And that the tests are est. to be only 30-50% accurate is grossly wrong. Or that you have to have a bullseye rash, which is est. to be present in only 30-50%. Research by other countries has exploded. Good Thing. We must change everything in regards to Neuroborreliosis/Lyme to save lives of millions now misdiagnosed with everything from Chronic Fatigue to MS.

  • Ol Forrester Sep 23, 2010

    wrx44, are you saying that there should be a "societal value" factor in determing who gets transplants? Boy that sounds Republican to me.

  • wrx44 Sep 23, 2010

    Let's be realistic....some people are more valuable to society than others. Does the cancer researcher get a heart over the truck driver....if we all look at pragmatically, the answer should be yes.