I know this is long, but I think the content is worth reading. The following is not just a story of how I feel about my situation. It is backed up by lab reports and complete medical records along with pictures of my actual Lyme rash and various other symptomatic photos. I have spent 2 years researching on this subject and the information I have obtained in the hopes of helping others and making a change in the way the medical society looks at the current symptom protocol.

After reading this, I hope that you will see why I believe it is very important that we must pass legislation that will allow physician's to treat Lyme without jeopardy to their practice and see to it they are able to treat adequately through the power of law. I have a complete, verbatim copy of the California legislation that was recently passed and signed into law. This is a law that we desperately need put into effect in Wisconsin. You may read the California legislation here: California legislation

I have lived for 15 years in an area which I refer to as "deer tick haven" and it is literally infested. I have lived with this dreaded disease for so many years I don't know what normal living is even about. After obtaining and reviewing my medical records for the last 15 years including all lab work and test results, right down to my dental records, Lyme disease was suspected already as far back as 1991. I had 3 rashes under my breast and the doctor looked at it and said I had ringworm.

Had the doctors at that time been educated and aware of the clinical aspects of this disease, I could have been easily as well as inexpensively treated and spared the years of horrible suffering that I have gone through. I have spent years going to doctor after doctor with the same symptoms, only to be tested and told over and over again that I was depressed or having anxiety attacks. Some of my symptoms were: headaches, sinus problems, vertigo, carpel tunnel, aching joints, heart palpitations, arrhythmia, edema, intolerance, sleeping problems and many more. I had all the testing done on everything imaginable, all of which came back normal so I was given medications for depression and anxiety. Of course, my condition continued to worsen month by month, year by year until I was to the point that I could not walk alone because I had no equilibrium. I would awaken at night with cramping, sometimes up to 10 times a night. My arms and hands would go numb to the point that I would have to pick up one hand with the other and it felt lifeless, as though I was touching something that was dead. I had to have the help of a friend to grocery shop, carry in and put away the groceries, Christmas shop, clean my home, you name it...she did it and to this day, she still does what should be my every day responsibilities that I can no longer do.

I have a service dog that is near completion of training for certification. It is simply impossible to be reliant on others, so in my case a dog is necessary. The expense and time involved in have a service dog trained is very costly and complex.

For 3 years prior to finding my current physician, a Rheumatologist had been treating me for RA, even though based on lab reports, I tested negative for RA. I did not have the classic symptoms of the disease. Based upon a clinical diagnosis made by her, she gave me drugs that worsened my condition. I was injected with as much cortisone as was legally possible to give within a year's period of time. She had me to the point of taking some medications that have such severe side effects, it is recommended that this form of therapy should be discussed between patient and doctor to determine which is more beneficial - the benefits of the drug has on RA, or not taking it due to the severity of the side effects. I questioned her on taking this as I had never seen a positive test and as I mentioned earlier, I did not have the classic symptoms of RA. Never once did she test me for Lyme or even discuss the possibility of having it.

I was at a point in my life that deep inside I knew that the longevity of my life would not be long. I felt I had nowhere to turn. I spent 2 weeks planning my will as I felt I would not have much more time to live. Something inside told me not to give up and I decided to see an orthopedic surgeon in hope he could find some answer to the horrible pain I was enduring. When I told him my story and symptoms, he said to me "I can't tell you right now what you do have, but I can tell you what you don't have and that is RA." After obtaining my medical records from him, on his progress notes he had written "possible rheumatic fever/Lyme disease".

That was the beginning of finding the road to getting help. Through fate, I was put in contact with my current physician. Little did I know that this visit would be the beginning of the challenge of my life...finding a literate doctor and one who would listen as he did, seemed virtually impossible. I finally felt hope, something I hadn't had and had nearly given up on. My current doctor, who is very literate about Lyme, listened to me and never once made me feel like I was wasting his time or a "hypochondriac".

My case is very complicated due to the time period I was infected until I was diagnosed and began treatment. He started the antibiotic treatment and within weeks to months, many of the symptoms dissipated. I had 33 of the symptoms of late stage Lyme. I had a Lyme serology taken. This test was ordered by an orthopedic surgeon that I had seen when the cortisone was not helping. The lab technician informed me that if the test were taken after 6 months of having the tick bite, it would have come back negative. It states right on the lab report "It is critical that the results be viewed in light of clinical presentation". I told him that it was years and that I was also treated with many RA drugs. After all these years of suffering, I am finally being treated using pulse therapy to eradicate the Lyme. Each treatment is documented from minute to minute, describing response to the medication.

I continue to experience a great deal of pain and will probably do so for the rest of my life. That is the unknown. Although my symptoms have lessened, many of them mentioned above continue to occur. The joint pain is excruciating. I can't imagine being able to get down on my hands and knees and wash a floor. I can't even bend down to get things out of the bottom of my cupboards or refridgerator. I wonder what it would be like to sleep through the night without being awakened by pain and having to rely on medication to get 4 hours of sleep. The fatigue is something that only another Lyme patient could understand. I would what it would be like to not have every move I make take all the strength I have to do it. What would it be like to be able to do what the average person considers an every day chore and does with ease? For me, doing a simple task can have me on the couch for days, trying to recover from the pain it caused.

In October of 2004, while already in treatment for Lyme, I was reinfected not once but twice. I had 2 tiny little spots that one would probably not even notice. They were deer ticks. This tick bite was different than others I have heard of. There was immediate, excruciating pain. There were 5 out of the 10 people in our group that had bored in ticks that day. There were probably 50 or more other people at the camp that weekend...how many of the others also had ticks as we did? Five of us literally sat around and did nothing because of the pain. I had the typical bull's-eye rash and have pictures of it. It's a shame one has to feel they need to take photos to prove to a doctor they had a tick and also this rash. But without this proof, this information is just simply discounted and ignored by the physician.

My husband has been breaking out with rashes for a period of time now, he's seen a local doctor twice. He was also told it looked like ringworm but was asked if he'd been tested for Lyme. He said no both times and they never ran a test. He was just told to watch it. He was finally seen by my doctor and tested positive on the serology.

My daughter came to me last week with the same rash, only worse. She is so sick. I have the tick we removed from her and pictures of her rash as well. Her doctor glanced at her rash and said it was also ringworm.

I lost my job in October, 2002. I have suffered not only physically but also mentally and financially as well. I have been keeping a journal on my treatment. It documents my treatment, my reactions to medication, what I experience and how long my reactions last. I have photographs in the beginning stages of treatment and current photos that can prove my doctor is on the right course of treatment and has found the right combination of antibiotics.

I have seen specialists in every area of medicine including ENT, Opthamologists and Oral Surgeons, all of which have ruled out any underlying diseases. All reports have come back normal. My reason for keeping this journal is that some day a doctor can read it and possibly help someone else with the information in it. If what I have documented can help one other Lyme patient not have to go through what I have throughout my life, then everything that I am doing will be worth the effort I am putting into doing this.

I have made it my goal in life to do everything and anything I can to help others infected with this disease. Then and only then will my years of pain and suffering not have been in vain. Unfortunately, I am only one person, without the power to change things on my own. I need the help of individuals with the knowledge and credentials to substantiate and be at my side to support me. I am more than willing to offer any written material I possess or even myself for a case study if it would be beneficial.

Dawn L. Birling
Waupaca, WI