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The Fischs' Story

Touching My Family's Lives.....

A story of Lyme disease in Michigan
by Carol A. Fisch

In the spring of 1991, I was out on sick leave from my employer, a hospital I had worked for since 1983. With an advanced degree in health care education, I was on the teaching staff as a medical technologist for a residency training program. I taught physicians laboratory skills they could use as family practice physicians.

I was waiting to get ruptured silicone breast implants out and was quite ill with many symptoms, including unexplained rashes and an elevated ANA. One sunny day I was feeling a little better, so I decided to clean out my bird feeder in our back yard. I got down on my hands and knees to do so. A few weeks later, I had on my left knee a bull's eye rash. It was very typical of the EM rash, but neither I nor my physician recognized this as Lyme disease related.

We knew it was different and felt it was a reaction to an insect bite, but didn't recognize it as a Lyme related rash. After three weeks of spreading and itching, (my immune system was already activated from the ruptured implants) my doctor treated me with Medrol packs (steroids) and the rash eventually went away. We now know that over fifty species of birds have been tested and can carry the nymphal stage of the black tick that carries the bacteria responsible for Lyme disease. At this stage, the tick is so small, it is about the size of a pin head.

Like many others with Lyme disease, my symptoms were originally dismissed, i.e. joint pain, major cognitive dysfunction, especially short-range memory, major sleep disturbances and terrible fatigue. I was told that I was under stress because of having to deal with the ruptured silicone breast implants, but when they tried me on psychotropic drugs I became worse, not better.

I went to a rheumatologist who diagnosed my problem as atypical connective tissue disease. Many of the women with ruptured silicone breast implants were showing some of the symptoms that I was having. This diagnosis was not incorrect, but another diagnosis needed to be added to this one - Lyme disease.

I kept getting worse. A medical friend suggested that I also see an infectious disease specialist, who diagnosed me with histoplasmosis, a disease also carried by birds. This infection cleared up, but I continued to feel worse. He again ran an infectious disease panel on me. This time the Elisa test for Lyme disease was positive and the Western Blot was equivocal.

I talked with scientists in California and Connecticut, where they do the most competent Lyme testing. I was positive for PCR-DNA testing. My PCR-DNA urine test was positive, indicating active Lyme disease. My rheumatologist had always felt that I was having cross-reacting antibodies because of my activated immune system, and therefore that the Elisa and Western Blot were probably false positive (there were some significant bands showing up).

With the positive PCR-DNA, there was no longer any question that we were dealing with Lyme disease. This was four years after the EM rash on my knee. The infectious disease doctor tried to treat me for the Lyme disease, but because of hepatic (liver) and kidney function and an inability to detoxify (about 50% of normal), I was not able to tolerate the antibiotic therapy very well. Because of the chemical exposures, I have multiple chemical sensitivities and am allergic to latex and silicone IV tubing.

I have Toluene, Formaldehyde and Benzene in my body. These agents are cancer-causing and many women with this exposure have come down with multiple myeloma, an incurable bone marrow cancer. My body is continually trying to detoxify the residual silicone and chemicals from my body, and when antibiotics are added for the Lyme disease, my system can't handle them for very long. I will be forever grateful to both doctors who cared about me and wanted to see me get better.

My endocrine system (hormones) has been affected by the chemicals and the Lyme disease. The pituitary gland in my brain is basically not doing its job sending out signals to the other glands to produce the needed hormones. Therefore, my heart, adrenals, thyroid, and ovaries are not functioning normally. If the Lyme disease could have been caught and treated sooner, I might not be disabled and on disability - rather, I might be back working at a profession that I love.

I am most thankful to have found a wonderful doctor in Saginaw, Michigan, who understands this disease. He has family members with Lyme, and he is willing to be educated on the other medical issues that I face, i.e. toxic chemical exposure and the resulting atypical connective tissue disease. We are not able to treat me as aggressively as we would like, but I thank God I have found a physician who understands Lyme disease and the devastation that it causes. My children have not been as lucky.

I have a daughter in Tennessee who was bitten while mowing her yard. She recognized the EM rash as probable Lyme, but couldn't get a doctor in her state to treat her for the recommended time frame. She had a positive Elisa and a Western Blot that was CDC positive. She eventually ended up in Missouri, being treated by a caring physician who has Lyme in his family.

She has been treated for long periods of time, but when she goes off antibiotics she regresses. My daughter has a husband and two children and a great deal of faith in God. I believe that is why she copes as well as she does with this disease.

My son in Germany also has Lyme disease that he picked up in Germany or Austria. He doesn't have positive serology and is going through a living hell trying to get the antibiotics he needs to keep him going. He goes 150 miles away to see a humane physician who believes he has the disease. His symptoms are very neurological. He had panic attacks in his sleep and sensory overload so that he couldn't handle noises. They seemed to be magnified a hundredfold. The area in the brain responsible for the ANS can cause these symptoms if it is inflamed.

They don't have anyone like Dr. Brian Fallon there who would understand these symptoms are common among many Lyme patients. This is sad since much of the original research on the symptoms of this disease came out of Germany.

It appears some of the researchers know about the affects of the disease (he has talked with some of them), but without a positive serology a doctor will not treat you with antibiotics. This is a country with socialized medicine and without his house doctor's (primary care) okay for the diagnosis, he has to pay out of his pocket for medications.

On antibiotics and Klonopin he can function to some degree, but without them he would be dead either from the disease or from his own hand. He has trouble coping with this disease when no one seems to understand what he is going through. He has a wife and two children. It is so sad to see your children pray to live to see their children grown. Their children love them and need them so much.

My husband was diagnosed in February of this year with Lyme. He had been having symptoms for a few months. We didn't want to believe he could have Lyme, but it soon became clear that his symptoms and cycle were identical to mine. He was tested and was positive with the LUAT test. We are not sure if he caught the disease from me or if he picked it up elsewhere. There are over 312 strains of the bacteria responsible for Lyme disease and they can all cause slightly different symptoms.

My son and daughters are slightly different from mine, but my husbands are almost identical. If the organism can pass through the placenta and onto the fetus, thereby giving birth to a baby with this disease, then it only stands to reason that it could be sexually transmitted like another spirochetal disease - syphilis. There are no studies to prove this, but my doctor has quite a few cases where one partner has the disease and much later the other partner starts to show symptoms.

There are even worse horror stories. I know patients who are misdiagnosed because of ignorance on the part of the physician. They are told Lyme disease doesn't exist in their area. They do not educate themselves to the symptoms and proper treatment. That is why I, as well as my son and daughter, have what appears to be chronic Lyme disease. I have hope for my husband, but he is not really getting better and is cognitively deteriorating.

The state of Michigan is not that different from many other states - not many are willing to admit they have a Lyme disease problem. They will say it is in upper Michigan, but not in the lower half. I was bitten in my backyard in Oakland County. There are pictures of babies with the EM rash who were bitten in Wayne county and others who say they haven't been out of the lower part of Michigan. From what I have read it is in almost every state.

I can understand a state's economic reasoning for not wanting to admit to a problem with this disease, but not the humanitarian reason. We, the citizens of this state, and the tourists who visit this state deserve to be better informed and protected. Many citizens and tourists are being exposed to Lyme disease without any education to prevent them from getting the disease. Sure, tourism is important to a state, but so are the men, women, children and their animals who live in and visit this beautiful state.

Massachusetts is known for having this disease in their state. The disease was named for a town in Lyme, Connecticut, but they still have tourists flock to Martha's Vineyard and Nantucket every year. If people know there is a problem, they can take steps to prevent themselves from contracting the disease.

As you can see, Lyme disease has touched my family's lives a great deal. I hope and pray that more people, doctors, researchers, politicians and the general public wake up and educate themselves to the horrors and devastation that this disease causes. My prayer is that researchers come up with something that cures this disease and prevents it in others.

With my background and understanding of this disease, when I'm able, I give lectures and try to educate others on this disease in the hope of preventing it in others, or at least have them recognize it earlier in hopes of a better outcome than has occurred for my family and myself.

Update May, 2000, My husband had to retire from a profession that he loved in Feb. of this year. My granddaughter in Tennessee has been diagnosed with HGE and Bb and my grandson who lived in Germany with my son and his family also has the disease. They have moved back to the US not to far from the Boston area in hopes of getting treatment. Therefore, the saga goes on.

I'm a support group leader for Lyme disease here in Michigan and have become quite an activist. Writing and making trips to Lansing in our State, Going on Lyme Disease Rally's and conferences whenever I can. The LDF conference, The one we have here in Michigan, The Gettysburg Rally and the March on Washington.

It's not that I feel like doing these things, it's that I feel I have to get the word out about this disease in hopes of helping others, as well as my own family.

Sincerely Carol Fisch

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