My Lyme story really began in 1983, when I was struck with a weird set of symptoms: vertigo, profound fatigue, neck weakness, and arrhythmia. I went to the usual array of specialists who could find nothing. I did feel like I was dying for six months....then, suddenly, I went into remission.

For 21 years I was healthy again... I was a runner and weight lifter. Not really a gym animal but pretty fit for my age. I had a successful career as a radionavigation engineer at the Johns Hopkins University Applied Physics Laboratory. I heard about Lyme in the 1990’s and briefly thought that is what I might have had in 1983. But I thought it was over (Thank you Jesus....)

Fast forward to 2004. I had a dizzy spell at the beginning of the year, then some horrible GERD, and rectal bleeding. Testicular pain, difficulty in urination, and neck pain followed in the fall. Then at the beginning of 2005, the cardiac symptoms returned along with irresistible fatigue. I spent weeks on the couch. I had attacks of shortness of breath and arrhythmia several hours after exertion that would not have made me blink six months before. I went to the emergency room five times thinking I was having a heart attack or a stroke. Then there were the chills. Violent shaking and a complete inability to keep warm. I would walk around the house with two blankets covering my head and shoulders and the heat turned up to 85F and I would still be shaking. I suspected Lyme but when they tested me at Howard County General, I was serum negative. My cardiologist had me wear a Holter monitor, but it only captured minor palpitations. My PCP was out with a heart operation, so he referred me to a neurologist, who found nothing. I went to two rheumatologists, who wanted to see some swollen knees (I never have had any significant joint involvement). I went to an infectious disease doc, who said, “There are some people who have Lyme and are serum negative, and some people who are serum positive but are not sick. I don’t think you have Lyme carditis. Maybe you have a virus. Call me if anything changes.” Thus I was dismissed and consigned to my fate. Needless to say, I was terrified.  I really could not work, but I thought the lack of objective symptoms meant that I could not get disability. (I would not have given me disability!)

Then in March came the chest pain in earnest. Agonizing pain that felt like there was a basketball in my chest. It was so bad one night I went to the ER at Hopkins. This was truly pathetic. I actually drove downtown at 1 AM in the morning, in agony, thinking that I would be met at the door by a smiling Ben Carson in a white lab coat who would shake my hand and say “Now we’ll get to the bottom of this!” In point of fact the Hopkins ER at 1 AM is a drunk tank catering to various types of drug overdoses and the occasional knife or gunshot wound. Finally I got to see a very sweet twenty something female intern who very sweetly said “You couldn’t have Lyme...maybe it is stress.”  At this point the pain had abated somewhat so I drove home in disgust but much wiser.

Then things began to change. In April 2005 I got to see a sympathetic family practitioner (Dr L.) in Clarksville, who gave me the Bowen test which came back (+). (This test now appears to be bogus... everyone is positive.) On this basis she referred me to Dr S. and began treating me with Biaxin during the time I was waiting for the appointment. She also sent my blood to Igenex. I was still negative ... 3 reactive bands. But I responded immediately to the Biaxin. I did well in May and actually started running again (a little). My PCP finally got back from his convalescence and when I saw him he diagnosed me with late disseminated Lyme (it was a no-brainer) and recommended I start on IV Rocephin. I was still waiting to see Dr S. and did not relish an IV, especially since I seemed to be improving a little, so I put this off (bad mistake!)  I finally got in to see Dr. S on June 9th 2005 and he put me on a three (oral) antibiotic cocktail.

I did well for a week or so, then I relapsed. Hard. The fatigue and brain fog were incredible. June 24th was my birthday, and my younger daughter who was 11 at the time asked me as I was lying in bed “Hey Dad watcha wanna do for your birthday?”.  This was the worst point in my illness. I couldn’t “do” anything. Laura figured it out after a few seconds and said “That’s OK Dad, we don’t have to do anything.”

My July 7th blood draw came back positive for Lyme from Igenex (IgM). I fell on my knees and thanked God, because this was the first piece of objective evidence that I was sick at all. The arrhythmia now (early July) became so bad that my knees would buckle and I would nearly faint. After the second near-syncope I went the the emergency room and one of the cardiologists recommended that I have an implantable loop recorder put in to catch the events, which I did on Monday July 7th at Sinai. Thank God for this man who I will call Dr. G. I had another “event” and went to the Howard County ER. When they read the recorder they expressed great concern that I might have a fatal arrhythmia at any time, scheduled me for an electrophysiology (EP) study at Johns Hopkins, and sent me home saying I should go directly to the ER if it happened again. Thus motivated, I decided to go ahead with the Rocephin. My PCP and Dr. S both wrote for it and I had the PICC line inserted on Monday August 1 at Howard County. I then began herxing -really- bad, and the arrhythmia became worse. On  Tuesday I had one that made me fly off my couch so I called the ambulance., which took me to Howard County ER. After reading the recorder they transferred me by ambulance to Hopkins for the EP test.

Well I arrived Tuesday August 2nd too late in the evening to do anything. They had me wired up to a monitor and the alarm was going off all night long. The next day, Wednesday, a young doc who looks like Brad Pitt in a white lab coat comes in, sits down by my bedside, and asks, “Now what’s this story you’re trying to concoct about Lyme disease? You know, we had to get special permission from the infectious disease department to continue your Rocephin IV.”  If I had had the strength, I would have ripped this guys head off, or died trying. (Not a very Christian attitude.) In fact I was so sick and sheepish, I was barely able to mumble a response. All the while my arrhythmia is continuing. With the 12-wire connection they had me on at Hopkins, they could now tell it was ventricular tachycardia (v-tach).

In the EP study, a catheter is inserted in the groin and threaded up through the veins to the heart. It is then walked around your heart and they try to reproduce the arrhythmia through electrical stimulation. If they find an area of “bad wiring” they can send a high level of current (we’re probably talking micro-amps) actually destroy it by shocking it to death. So the “study” can actually end up being a cure. The great and mighty Hopkins is one of two hospitals in the area that can do the EP study and people come from hundreds of miles for it. (My room-mate the first night was a young guy from Western Maryland.)

Anyway, there were a lot of people waiting for the test who were sicker than me, so they couldn’t do it till late Wednesday. My room-mate during the day was a high government official from Virginia who played yahtzee all morning with his wife. They wheeled me in to the EP area and, told me to strip naked, and gave me a rag to use as a fig leaf. Naked except for my fig leaf I was wheeled into the operating theater. The room was huge with lots of stainless steel, high intensity lights, and a huge climate control unit that could blow warm, dry air on the patient. There were about seven nurses, doctors, and EP techs getting ready to do me.  One was a big, burly guy who was talking about deer hunting in the Fall. Trying to appear nonchalant (I was terrified) I told him I would buy him a bullet. That is when it really hit me that I was going to be completely awake during the “procedure”, no sedation at all. Apparently, any general anesthesia or sedative can change the test results. So they gave me a shot to numb my groin, inserted the catheter, and walked it up to my heart. Then they began shocking my heart. From the inside. Yes it does hurt. And it is very scary. This went on for probably ten minutes which seemed like ten hours and then they were done and I was wheeled back to my room.

The next day a Dr. L who is the big EP guy came to visit. He said, “Mr. Asher, we know you are having these arrhythmias: we saw them all night. But we can’t reproduce them. You actually seem to have a very stable heart. I guess this must be your Lyme disease. In any case, we don’t think you are a candidate for sudden death, so we’re going to discharge you.”

To be continued.... (I’m tired of writing now, and really hate retelling the story!)