My name is Kara Tyson. I am 34 years old. I have had Lyme disease for over 2 years. In April of 1999 I was hiking on Monte Sano Mountain (a state park in North AL). 3 days after the hike I developed a red round rash with what looked like a blister in the middle. By the 4th day I was limping and had shooting pains throughout my left leg.
I was treated with steroids for a possible spider bite and the rash went away. 6 weeks later I started losing bladder control. Tests for a bladder infection were negative.
I was sent to my OB/GYN since my symptoms were those of a prolapsed uterus. The doctor prescribed Codeine that I took 24 hours a day just to endure the pain. Every time I took Zithromax I regained bladder control. After many tests my doctor recommended that I see a urologist.
The urologist visit was of no use to me. The urologist said that what I was describing didn’t make any sense. He agreed to do some tests but could not see me for another month.
I began to spiral downward with no bladder control, a constant fever, falling asleep at work. Pains in my right leg, neck, and back. I could not sleep at night. I could not wake up during the day.
I sought medical attention (this time from a local clinic run by a local hospital). I was told that I was “depressed” and that I was in “denial” that I was depressed.
I am a former burn patient. I lost my children in a house fire in 1995. I spent nearly a month at the UAB Burn Center being treated for burns over 60% of my body. I thought that the Dr. would see that I was a very strong person not easily overcome by illness. Unfortunately, what was written in my file was that I was in need of psychological counseling. This Dr. had only known me for 10 min. I told him that I got better when I took Zithromax. I was told that I was only having a “placebo effect”.
I was now in pain and scared. My pain medication was running out. Since I was “depressed” who would give me antibiotics? Getting anti-depressants is easy in our society. Getting antibiotics is not. I was to the point that I would steal, beg, or borrow what I needed. I would have combed through garbage if I had to.
I woke up every morning wishing that I was back in the burn center because at least I would know that the pain would stop eventually, and at least at the burn center someone would try to help me. Every day they scrubbed my burns with a steel brush. Every hour they turned off my respirator and as I gagged they poured water down my throat to suck out soot from my lungs. I would have gladly traded the experiences. The physical pain of Lyme disease cannot even be measured against even this agony.
I did a search on the Internet. 2 diseases came up on my search engine. Prostrate Cancer & Lyme disease. I knew that the first disease was not my problem. The 2nd I almost dismissed. I then realized that right before my rash I had what appeared to be a “scab” in the same place.
Again, I sought medical attention (from the same clinic) to be tested for Lyme disease. I didn’t know anything about the tests. Or what to ask for. I was given a simple ELISA. It came back negative. The receptionist told me that this was the only test for Lyme disease and that since it was negative I didn’t have the disease. She told me that their office has never had a positive test for Lyme disease.
I returned to the initial medical office where I was bitten by the “spider” to let them know that I thought I had Lyme disease. The nurse was very rude to me and rolled her eyes and said, “Did you see a tick?” I said no that I had not seen a tick or a spider. When the nurse left the room she shut the door with a smirk on her face. I could hear her through the door saying to the receptionist, “She thinks she has Lyme disease. Can you believe that one?”
In August (4 months after the bite) the Lyme disease newsgroup recommended a Dr. 5 ½ hours away. I went to him. I was positive on the Western Blot. I was also positive on over 8 urine tests. I had had a false negative on the ELISA due to steroid treatment before the test.
I thought treatment would be so easy. It isn’t. It is the start of a long journey. I have spent thousands of dollars out of pocket with no end in sight. I started selling my furniture and belongings to help pay for the medication. My parents spent over $10,000 on a car so that I could drive for treatment. For the first 2 years I spent 36% of my annual income because as a burn patient I was unable to get health insurance.
Since my diagnosis I have learned that in Nov. of 1991 the United States Army released a memo acknowledging Lyme disease in my area. The memo was released to Army personnel and signed by Michael R. Collyer, Major. MS Chief, Entomological Science Division. This was aprx. 8 years before I was infected yet I had never heard of Lyme disease. The Conclusion of the memo was that “installation personnel should continue to practice protective measures”. What about the public?
I have also learned that there is a bias in the medical community towards this disease. When I did not have health insurance my prescriptions ran aprx. $500-700 a month. My income was $15,000 a year. Many pharmaceutical companies offer special programs for those who do not have insurance. However, there is no consistency on income. I met all the qualifications for Zithromax. My Dr. filled out all the paperwork. I was rejected for the program because I was NOT HIV positive! If I had AIDS I could have gone to any local clinic and gotten my medication at a discount or even for free.
My greatest fear is not whether or not I will be cured. I do not know if that is possible. I accept this reality. My fear is that my Dr. will face charges from an insurance company and no one will treat me for this disease. Where will I go?
I was treated with steroids for a possible spider bite and the rash went away. 6 weeks later I started losing bladder control. Tests for a bladder infection were negative.
I was sent to my OB/GYN since my symptoms were those of a prolapsed uterus. The doctor prescribed Codeine that I took 24 hours a day just to endure the pain. Every time I took Zithromax I regained bladder control. After many tests my doctor recommended that I see a urologist.
The urologist visit was of no use to me. The urologist said that what I was describing didn’t make any sense. He agreed to do some tests but could not see me for another month.
I began to spiral downward with no bladder control, a constant fever, falling asleep at work. Pains in my right leg, neck, and back. I could not sleep at night. I could not wake up during the day.
I sought medical attention (this time from a local clinic run by a local hospital). I was told that I was “depressed” and that I was in “denial” that I was depressed.
I am a former burn patient. I lost my children in a house fire in 1995. I spent nearly a month at the UAB Burn Center being treated for burns over 60% of my body. I thought that the Dr. would see that I was a very strong person not easily overcome by illness. Unfortunately, what was written in my file was that I was in need of psychological counseling. This Dr. had only known me for 10 min. I told him that I got better when I took Zithromax. I was told that I was only having a “placebo effect”.
I was now in pain and scared. My pain medication was running out. Since I was “depressed” who would give me antibiotics? Getting anti-depressants is easy in our society. Getting antibiotics is not. I was to the point that I would steal, beg, or borrow what I needed. I would have combed through garbage if I had to.
I woke up every morning wishing that I was back in the burn center because at least I would know that the pain would stop eventually, and at least at the burn center someone would try to help me. Every day they scrubbed my burns with a steel brush. Every hour they turned off my respirator and as I gagged they poured water down my throat to suck out soot from my lungs. I would have gladly traded the experiences. The physical pain of Lyme disease cannot even be measured against even this agony.
I did a search on the Internet. 2 diseases came up on my search engine. Prostrate Cancer & Lyme disease. I knew that the first disease was not my problem. The 2nd I almost dismissed. I then realized that right before my rash I had what appeared to be a “scab” in the same place.Again, I sought medical attention (from the same clinic) to be tested for Lyme disease. I didn’t know anything about the tests. Or what to ask for. I was given a simple ELISA. It came back negative. The receptionist told me that this was the only test for Lyme disease and that since it was negative I didn’t have the disease. She told me that their office has never had a positive test for Lyme disease.
I returned to the initial medical office where I was bitten by the “spider” to let them know that I thought I had Lyme disease. The nurse was very rude to me and rolled her eyes and said, “Did you see a tick?” I said no that I had not seen a tick or a spider. When the nurse left the room she shut the door with a smirk on her face. I could hear her through the door saying to the receptionist, “She thinks she has Lyme disease. Can you believe that one?”
In August (4 months after the bite) the Lyme disease newsgroup recommended a Dr. 5 ½ hours away. I went to him. I was positive on the Western Blot. I was also positive on over 8 urine tests. I had had a false negative on the ELISA due to steroid treatment before the test.
I thought treatment would be so easy. It isn’t. It is the start of a long journey. I have spent thousands of dollars out of pocket with no end in sight. I started selling my furniture and belongings to help pay for the medication. My parents spent over $10,000 on a car so that I could drive for treatment. For the first 2 years I spent 36% of my annual income because as a burn patient I was unable to get health insurance.
Since my diagnosis I have learned that in Nov. of 1991 the United States Army released a memo acknowledging Lyme disease in my area. The memo was released to Army personnel and signed by Michael R. Collyer, Major. MS Chief, Entomological Science Division. This was aprx. 8 years before I was infected yet I had never heard of Lyme disease. The Conclusion of the memo was that “installation personnel should continue to practice protective measures”. What about the public?
I have also learned that there is a bias in the medical community towards this disease. When I did not have health insurance my prescriptions ran aprx. $500-700 a month. My income was $15,000 a year. Many pharmaceutical companies offer special programs for those who do not have insurance. However, there is no consistency on income. I met all the qualifications for Zithromax. My Dr. filled out all the paperwork. I was rejected for the program because I was NOT HIV positive! If I had AIDS I could have gone to any local clinic and gotten my medication at a discount or even for free.
My greatest fear is not whether or not I will be cured. I do not know if that is possible. I accept this reality. My fear is that my Dr. will face charges from an insurance company and no one will treat me for this disease. Where will I go?
Postscript:
Since 2001, I have made dramatic improvement. I owe this to a physician who listened, to the makers of Zithromax, and also to my family and friends who have stood by me throughout this battle.
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I never understood the handicapped, until I had a handicapped child.
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I never understood what it was like to be heavy until I weighed 280 lbs.
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I never understood grief until my children died.
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I never understood pain until I was burned 60% in a house fire.
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I never understood perseverance until I lost 150 lbs.
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I never understood desperation until I was infected with Lyme Disease.
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I never understood gratitude until I no longer had to take medication for Lyme.
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I never understood trust until I lost my job.
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And I never understood my future until I decided to go back to school to be a nurse to work critical care burns.
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But most of all I never understood how fortunate I was to have family and friends who care.
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ABOVE ALL—ATTITUDE IS 99.9% of the battle! If you do not have the right attitude, you will not survive Lyme, you will not survive cancer.
Originally written in 2001 and updated with Postscript
Lyme Disease Support Group Of AL
Taken From Testimony Before OPMC—New York State
Reprinted on BetterHealthGuy.com with permission
Lyme Disease Support Group Of AL
Taken From Testimony Before OPMC—New York State
Reprinted on BetterHealthGuy.com with permission
