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Todd's Story

This is a letter I wrote to everyone I knew in 1995, when I was first diagnosed.
It serves as my story . . .

Holiday 95

Against the advice of a few friends I am inclined to write this unusual Holiday greeting. Many of you know I've been quite ill for an extended period of time. The good news is, that at the time of this writing, I have experienced significant progress. My full recovery, at least physically, is just weeks away. This message, previously published in two local papers, has helped two individuals. It is this reason, which has helped me accept my recent fate with a better attitude, that makes it necessary to continue the message by telling a tale that, possibly, could help someone close to me.

Christmas and Chanukah are a time of sharing . . . with family and with friends. It is a time when we relax and enjoy life. And it is a time when we reflect and are amazed at all that we have and realize we believe in ourselves, our families, our friends and life. These beliefs guide us to improve ourselves and our lives. And sometimes, out of necessity and desire, one has to believe in something so strongly, overcome non-believers and tremendous odds, that life reaches, even when life is threatened, a pinnacle.

There was a movie a few years ago . . . I don't remember the name of it . . . and I didn't even see it . . . but I remember in the trailer a hostile Alec Baldwin, playing a doctor, claiming he was god. I think I found that doctor he was playing. Actually, I found six of them. Over the past year, as I continued to complain of increasing problems with my body and mind, they determined I had a psychological problem. Not an easy thing to swallow. I'll admit, it was a possibility. But to dismiss all other possibilities was arrogant, heartless and almost fatal. When I was offered drugs for depression, by the doctor I had respected most, I saw death.

My body deteriorated to such a point, that at times, I preferred death. But there was something physically wrong with me. And if the doctors couldn't figure out what was wrong, I would. And I did. I have Lyme Disease. And I have it bad. But my story is not just disheartening, it is also invigorating. It shows that we are each capable of anything . . . except maybe flying or hitting the lottery. It shows that knowledge is king. It shows that when one has this knowledge, darkness fades. My doctors pushed me deep into that darkness the last couple of years. First, I was diagnosed with a thyroid problem. This diagnosis was correct. The treatment I was given, though, could have killed me.

So I hit the books to figure out the proper treatment. With the help of my test results and copies of all doctors' notes, I determined that my thyroid problem was slight and that the dosage of medication I was prescribed was way too much. This problem, after a few months, was corrected. During this time, though, it became apparent, at least to me, that I had an additional problem. I was told I was crazy. So, since I had already figured out how to deal with my thyroid problem, I didn't think it was such a great leap to become a diagnostician.

The symptoms are: tremendous lethargy, pericarditis (a virus in the outer lining of the heart which causes heart-attack like pains), heart palpitations, numbness in extremities, breathlessness, headaches, blurred vision, facial twitching, irritability, etc. Like Remington Steele on a case, I took these symptoms and compared them with the major symptoms of every disease known to humans (my main sources here were The American Medical Association Family Medical Guide and Mayo Clinic Family Health Book). The field was narrowed to twenty-five possibilities, which included one psychological disorder. I was keeping an open mind. More involved research on these specific diseases allowed me to eliminate them, one at a time. Finally, the symptoms, and the orderly fashion of their progression led me to Lyme Disease.

I never saw a tick, which is the size of a poppy seed, on my body. And I never had the bullseye rash or chronic rashes that accompanies the onset of Lyme. But I found, that in at least one-third of the cases, this does not occur. So I told my doctors I had Lyme. They thought I was completely bonkers at this point. At my insistence, though, they ran a test. It came back negative. I insisted the test was wrong. In fact, I knew that Lyme testing was not accurate. I was told I was crazy. But I wasn't. And I was getting worse. I developed tremendous pain in my joints and my headaches became more severe. I also started becoming confused and forgetful. The bacteria was spreading in my central nervous system, rapidly. And I knew I needed intravenous antibiotic treatment. If these doctors wouldn't help me, I would consult other doctors.

I hired (they work for me) eight new doctors. Linda Hanner, author of Lyme Disease: My Search for a Diagnosis, and others, had jumped from doctor to doctor for years before getting a diagnosis. I could not afford that time . . . my first six doctors already had stolen too much of it. Eight new and better doctors, at once, seemed appropriate. One was a cardiologist at New York Hospital. I needed him to confirm that pericarditis (the virus in the outer lining of my heart) was a symptom of Lyme. Every doctor I had been to vigorously insisted that only myocarditis (a virus in the heart muscle itself) was a symptom.

It didn't make sense to me. I figured it was the same virus. The cardiologist concurred. Another doctor was an endocrinologist at Montefiore in the Bronx. He had written a book I read . . . a very good book. He confirmed that my thyroid, which now actually did blossom from a slight problem to a severe problem, could be affected by a serious illness . . . any serious illness. My local endocrinologist had said my thyroid was just getting worse . . . it happens. But I had been on too much thyroid medication before, and I didn't want to half-hazardly move in that direction again.

The trip to the Bronx was invaluable. A third doctor was a local internist who, while I was waiting weeks to get in to see the Lyme specialists, said he would, at least, give me some antibiotics, in pill form, to hold me over. Unfortunately, he wound up on a tangent and rescinded his offer. So, through family and friends, I procured some antibiotics. I knew it wouldn't be enough. But I thought I could stall the progression of the bacteria. I was in so much pain, I don't think I could have gotten worse, but who knows.

The Lyme specialists I found were all either published on the disease, recommended by the Lyme Disease Foundation (1-800-886-LYME), a non-profit organization, or recommended by The Lyme Care Center (1-800-TICK-BITE), a for-profit home-care facility. These doctors took me to Great Neck, Westchester, The City and Boston (via phone). Each specialist tested me for Lyme. Each received positive results back. Each diagnosed me with Lyme.

The tests these doctors ordered were much better than the test my original doctors did. And each of these new, better doctors, did several tests and sent them to multiple labs. This process is used because these tests aren't accurate. False negatives are very common. Fortunately, although possible, false positives are much less common. And to further validate that Lyme was the culprit, one of my doctors, with my encouragement, was busy eliminating, through scores of tests, all other possibilities.

I really do not know when I was bitten. I originally thought that the symptoms dated back to the summer of '94. It's probable, however, that it dates to summer '93. The first symptoms are flu-like. There can be some lack of energy and a chronic cough. If my case did start in summer '93, I was first diagnosed with bronchitis, treated, and had no further problems until March '94. I was treated, once more, for bronchitis and had no problems again for several months. In November '94 I was diagnosed with possible asthma and pleurisy. The treatment, at this time, didn't really help. This is when the disease took control of my body.

This is when my life started to fall apart completely. The Lyme lingered, and was so slight, through February '95, that I really didn't know how sick I was. At the time I thought I was healthy. Looking back I see it as a time of trickery. The sly bacteria slowly progressed and then, wham . . . I couldn't get out of bed. I think it's necessary, especially in the northeast, that adequate Lyme testing is performed for any patient with flu-like symptoms. If Lyme is caught early, three to four weeks of biaxin, tetracycline or amoxacillin, orally, will kick it. At my stage, it is months (ten weeks completed) of intravenous treatment (rocephin or vibramycin preferred) followed by two to three months of pills.

Since I have no intentions of avoiding the outdoors in the future, the possibility of my getting Lyme again exists. I am inclined, because I feel this disease is past epidemic proportions, to take antibiotics for three weeks any time I might get the flu, or a flu-like illness, in the future. Most doctors would want to castrate me for saying that. But I'm not going through this again. Lyme ticks not only travel with deer, but also thirty different animals, fifty birds and seven reptiles.

It has been diagnosed in forty-three states. Some of the biggest hot spots are not in wooded areas but by water. Cape Cod, Martha's Vineyard, Fire Island and Key West have had severe outbreaks for years. Currently there is no way to prevent getting bitten, unless you wear a body suit and spray yourself with foul smelling repellent every half-hour. A doctor in Westchester is close to finding a vaccine. This vaccine is available for your pet. It will be some time before it's available for humans.

I am pulling through this. Being 100% is still far off, although I'm closer than I have been in a year. My body is a different shape and has different characteristics than it did a year ago. Some things will subside, on their own, in time, like my facial swelling and redness. Some things I will have to work hard at to fix, like my weight gain and loss of muscle definition. And one thing will be permanent, my hair loss . . . which was caused by prescription of incorrect medication (prednisone, a steroid). But death, which for months was preferable to living, has been stared down. And life has returned. And my motto for life, spoken most eloquently by Robin Williams, my captain, will soon, again be, carpe diem.

I've found that the person most affected by a crisis is, perhaps, the smartest and best person to deal with and solve that crisis. And with the help of family and friends almost anything can be achieved. I am in the process of being cured, fully. I look forward to living again. Seize the moment. Good Health to all. Enjoy the warmth of the Season.

Todd Summer 700 Front Street, #1306 San Diego, CA 92101

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