THIS INFORMATION CAME FROM  http://www.lyme.org/faces.html

David L. Amole
Berks County, Pennsylvania

Hi, my name is David Amole and I have had Lyme disease off and on for 14 months out of an 18 month period. In April of 1996, I didn't feel good for two weeks and had severe headaches, nausea, felt dizzy, and my joints ached. I went to the doctor and he said that I was just probably tired and stressed. The day after I went to the doctor I took a shower and in the mirror I saw a "bullseye" on my buttocks cheek. At the time I was relieved because I thought I "only had Lyme disease". Boy was I wrong.

That doctor gave me antibiotics that I was deathly allergic to, but I figured that out on my own because he figured it was the Lyme making me that sick. He gave me a different antibiotic but it was the same base medicine and made me sick again so I switched doctors. The new doctor put me on antibiotics for a month and said that the Lyme disease was "now you see it, now you don't" so I didn't feel good and I was waiting for the symptoms to go away on their own. I didn't feel good throughout the winter of 1996 but I just thought that was the way it was with Lyme. Then in March 1997 that I got all of the beginning symptoms back again. Headaches, nausea, dizziness, neck hurt so bad I couldn't move my head, knees hurt so bad I could hardly walk, I missed a lot of work AGAIN, called the second doctor I went to the First doctor and he said he would give me a blood test. Blood test showed positive for Active Lyme Disease. He put me on an antibiotic immediately. I told the doctor that I wanted to see a specialist. I saw Dr. ****, a specialist, but before he could see me I was on antibiotics for 10 days and he wanted his own blood tests. His blood test came back negative because I was on an antibiotic for 10 days previously. He said I didn't have Lyme disease and wanted to test me for MS. The test really showed a false negative.

By that time we were on-line with ALDF and AOLyme and the Lyme Disease Coalition and had information saying being on antibiotics before the blood test would make it come up a false negative. I still had all of the symptoms plus somedays my vision was good and some days it wasn't. The ALDF referred us to Dr. **** in Easton, PA. It's 120 miles round trip to Dr. **** but he is very good with Lyme disease and didn't treat me like I was crazy in the head. He understood all of my symptoms and problems because the patients he deals with and he personally knows a doctor with Lyme disease. I am presently on ceftin 500MG twice daily which is $348 after insurance co-pays. I have had numerous blood tests, antibiotic prescriptions, doctor visits which insurance is not willing to pay for. They deemed some of them unecessary. I have been on antibiotics for 6 months so far this year, missed a lot of work, thank God my wife and I run our own business at home, I developed muscle twitches, on medication for that and am also being treated for severe depression. I asked Dr. **** how people who work in factories or people who are not in their own business with Lyme disease get through dealing with the disease. He said he saw people lose their jobs, lose their homes and lose their families because no one understands the disease. As far as my situation with my job and my wife, I think one of the big things that is helping us is that fortunately through our business we have a computer that is on-line and through that we got Dr. ****'s name and talk to many, many other people in my situation over the internet.

We don't know what's in store for the future. Dr. **** said it could reoccur yearly for a minimum of 5 years, not at all or reoccur forever. We don't know what permanent damage, if any, is possible over the years. I can't do my normal daily routines anymore. We have to get people to mow the grass, plow the snow, paint the house, etc. because I am not able to do the things I used to before I got the Lyme disease. My body won't allow me to. All I know is that Lyme disease is a horrible disease and is not "in my head". I used to have a happy, active lifestyle but that is no more. I haven't found an eye doctor that understands Lyme disease yet. I have "floaters" and "blurry spots" that affect my vision but the eye doctors never give me a solid answer about it. I think it's because they don't understand Lyme disease.

Lyme disease has definately changed my life .. and definately not for the better.

Marie Ciasullo
Fairfield County, Connecticut

I have chronic Lyme disease, with full neurological involvement. We believe I first contracted Lyme disease when pregnant with our third child. Unfortunately, I was misdiagnosed and mistreated with Lyme. Not only do I suffer daily these consequences but so does my innocent baby son, who was born with congenital Lyme disease.

Despite treatment, length, expensive and invasive treatment, I have constant battles with Lyme disease. I have abnormal brain circulation, cognitive deficits, and nearly constant pain and fatigue.

I have three children with severe, late-stage chronic Lyme disease. I watch my babies suffer and worry about their future. I'm afraid to cry for them because my tears would never stop. I am trying to teach them strength and to help them find peace.

I have little or no energy to share with my husband, the only Lyme-free member of our family. He and I live on the edge of financial disaster--due to Lyme disease.

My parents both have Lyme; two of my sisters have Lyme; one brother, one sister-in-law and one brother-in-law also have Lyme. Oh, and five nieces and nephews. We have all been diagnosed at different places, in different labs. This is so strange and so scary and oh-so sad.

Steven Ciasullo
Fairfield County, Connecticut

Steven did not have a tick bite. Steven did not play outdoors. Steven does not have a pet. Steven contracted Lyme before he was even born.

Sadly, Steven was not diagnosed until he was 18 months old. He had also been nursed by his mother who also, unknowingly, had Lyme disease.

This wonderful little pre-schooler now has chronic Lyme disease. Steven is so accustomed to constant pain, that he knows no other way of being. He does not know that it is not normal to have neck pain, back pain, hip pain, stomach pain, fatigue and weakness. He knows sometimes he can stand on one foot; sometimes he cannot. He willingly swallows his ongoing medications.

Since he was 18 months old, Steven has had massive oral antibiotics, horribly painful bicillin injections, and pain, pain, pain. He can be okay one day, pasty and limp the next. His sleep can be massively disturbed, and he arises the next day more exhausted than the one before. Some nights he sleeps soundly for 11 or 12 hours, only to fall asleep again two hours later. He watches his mother "do her IV", and helps to take care of his big brother and sister.

Chronic Lyme disease has created a bizarre and sad early life for Stevie. What will be his future?

Paul Ciasullo
Fairfield County, Connecticut

Paul contracted Lyme disease when he was four and a half years old, in 1994. He had excrutiating groin pain, leg, ears and throat pain, skin sensitivity, head-aches, fatigue. After only one month of treatment, Paul seemed well.

He suffered a major relapse the following winter, endured many months of pain and fatigue. Paul seemed to gradually improve again on oral antibiotics. He relapsed again and again and again, finally being treated with excrutiatingly painful intramuscular injections of antibiotics.

Again and again, Paul seemed to improve. Now he has brain involvement and is chronically ill. He cannot plan one day to the next when he will feel well. He is a strong fighter, rarely gives in to tears and rarely succumbs to self-pity.

Paul experienced hyperbaric oxygen treatment this summer, and was incredibly brave and trusting while holding a heavy mask on his face, lying virtually still for his one and a half hour long, twice per day, treatments.

He is loving and friendly, but is sick of being sick.

Alyssa Ciasullo
Fairfield County, Connecticut

Alyssa was bitten by a deer tick in the fall of 1994. She was diagnosed with Lyme disease in March of 1995, months after she should have been diagnosed and treated. She appeared to respond well to heavy doses of oral medication, and local pediatricians believed Alyssa to be well, despite frequent colds, flu and fatigue.

She is currently enmeshed in a serious relapse. Lyme has invaded her entire neurological system. A gifted student at school, she has just been accepted as a special education student due to her brain limitations which affect her cognitive abilities. She suffers pain, fatigue or emotionally irritability on a daily basis. As a first year middle-schooler, she should be giggling and talking on the phone and having boundless energy. This is not the case. Alyssa is a very sick child. Just when she should be testing her wings, her wings have been clipped by Lyme disease.

Roger A. Doyle
Fairfield County, Connecticut

My Lyme story begins like most chronic Lyme patients. Doctor after doctor did not know what was wrong with me. All told me that even though I had many Lyme symptoms, since my test was negative, I didn't have Lyme disease and would not treat me.

Thinking UConn (University of Connecticut) Medical would be my savior, I went there. Another blood test was given and even though Dr. ***** didn't see me, he called and told me the test was negative so I didn't have Lyme.

By the time I was so ill I had to stop working. I finally found two local doctors to treat me by my symptoms. I immediately had a herxheimer reaction which is caused by the Lyme bacteria being killed off.

After calling the Lyme Disease group, I learned that many have gone through what I had and also were left untreated by UConn and other doctors who base their diagnosis on unreliable blood tests. Many of us then went on to late stage Lyme disease due to not being treated sooner.

I firmly believe that if I hadn't found Dr. ***** in Bristol, CT and Dr. ***** in East Hampton, NY, I would be crippled today. I responded to long term antibiotic treatment and have returned to work full-time. Everyone responds differently to treatment. Many of us need long term treatment because Lyme is a slow growing bacteria that is only killed when active.

We need politicians to help pass two bills-- one that would allow doctors to treat their patients anyway they see fit. Now even though long term antibiotic treatment is working for many of us, our doctors are being criticized. Secondly, politicians must also pass a bill that would force insurance companies to pay for all treatment prescribed by a doctor for as long as it is needed. Now insurance companies have doctors on retainers mandating treatment to stop after four weeks. insurance companies are interested in saving money and not looking at the fact that we are getting better with long term treatment.

Victoria Draper
Jackson County, Michigan

My name is Dawn Draper and this is our story. Our daughter Victoria was bitten by a tick in late May of 1997. We found the tick at the stem of the neck, we pulled it out with tweezers and all of the tick came out. The tick couldn't of been there longer than a couple hours. We called the family doctor who said there was nothing to worry about. A couple of weeks had passed and we started to notice a big difference in her behavior. We checked the area of the bite and noticed it was not healing and there was light red rash around the area. We were somewhat aware of Lyme disease as someone in our community has it. Fortunately for us they were willing to share their experience with us. We called their physician and were able to get an appointment for Victoria. July of 1997 was her first appointment, we see the doctor once a month which is about a 2.5 hour drive there one way. Victoria's emotional state is not well, she gets very confused, angry, along with her crying spells. On top of her Lyme disease she has developed Alopecia (Hair Loss) and Candidiasis (Chronic Yeast). Victoria doesn't understand what is happening to her, she use to be such a good natured child who had so much energy and loved life. Victoria doesn't care when people look at her when she has an outburst, or they are staring at her hair but I do. There are times when I will just break down and cry and it is her who comforts me. "It'll be alright Ma." One thing I can say is God gave her a strong spirit. When she cries out in her sleep from the pain in her legs and stomach, I do wonder if and when this will be over for her and all of us! I do believe in the P & P method, the power of prayer and patience. In reality that is all you can do until they find the right combination of drugs that will work is pray and be patient. The financial burden is also difficult: missing work, travel for treatment, the treatment itself, tests and bloodwork. We have only been doing this for a short time in comparison to most Lymes patients and to be honest I don't know how they muster up the strength to do it. In some ways I think it would be easier to deal with cancer or something else at least then you would know what you are dealing with and be able to face it head on, with Lyme disease there are so many strains of bacteria and so many other illnesses and side effects that can occur. The pain you feel watching someone you love go through so much and knowing there is nothing you can do is incredible. The stress it creates in our lives is so great. David, her dad, and I feel we are in constant turmoil and there is never a moment's peace. Thank you for listening.

Emotionally, Finacially, and Physically drained in Springport, MI,
Dawn M. Draper