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Tim's Story

Hello ... my name is Tim and I am 37 and married with one son who's 10 years old. This is my story -- to start at the beginning (this brings tears to my eyes). It was 1995 and I was happy. I'd just bought my first home and was a manager of a lumber yard here in NJ; I worked hard all my life and was there for 8 years by then. Everything was on track and then symptoms started to slowly appear. First, it was just blurry vision and vertigo that would last 30 seconds or so -- didn't think much about it.

I thought it was just stress, then as time went on, things started to happen at work and home. I would forget to do simple things at work; make mistakes that a new worker would make but not a manager -- like wrong count on supplies; and lumber, the wrong length. I would invert numbers left for right. Then one day (in my own home) I found myself in a room and couldn't remember how I got there, or why I was there . By now it was 1996 and things had gotten worse. My boss told me to resign as manager or be fired. Ok, so I did so after 18 months doing the job -- I thought I just couldn't handle it anymore.

Then a few weeks later I awoke from a good night's sleep to find that I couldn't move my right arm -- my muscles were tied in knots. I go to the Dr. and she gives me anti-inflammatories. They did not help and after a week she sent me to a specialist who gave me two shots of cortizone, and in a day or two things got better. I was able to return to work but things got bad from time to time. Muscle system started to flare up and I felt very stiff. The doctor tested me for Lyme problems three times over the course of the next year and a half -- tests always came back negative. So it's attributed to my job which consists of heavy lifting, and so on. Then on 2/10/97 I woke at 2 AM, coughed three times and went down.

I was feeling the worst chest pain in the world -- it almost paralyzed me. I was having trouble breathing. My wife helped me back to the bed and called for a Police ambulance thinking it was a heart attack. I was rushed to the ER and the doctor came and looked at me. He then took my blood pressure, an EKG, and blood work, but the only thing that came up was a low oxygen count. He told me to quit smoking and that I had bronchitis, and sent me home. Days went by and I still couldn't move. I had terrible stabbing pains come and go in my chest.

I go to another doctor and he's no good at all. He is just moving people through like an assembly line. Things started to get worse -- and I'm trying to work in this condition. Then my wife takes me to a Dr. in NYC -- a world famous Pulmonologist on Park Avenue. He tells me that I've got lung disease and something else he can't figure out, so he sends me to the Mt. Sanai Environmental Med's department. They look at me twice and can't find anything, but tell me it might be costcondritis, and again to quit smoking. By this time I already had gone cold turkey, but the pain was still getting worse, so they sent me to an orthopedic surgeon, who looked at me and found two fractured vertebra and four ruptured disks in my back.

He gave me pain killers and anti-inflammatories -- again I am thinking this is good they found my problem. Weeks go by and I'm still in terrible pain. Something's wrong and I am not getting better. The orthopedist throws up his hands and says "I give up. Find another doctor because I don't know what's wrong with you." As I am leaving his office a nurse comes outside from a side door and she tells me "I could lose my job for this but I think you have what my daughter has -- Lyme disease." I reply No. I've been tested, but she insists to me that it still could be; she says to go to a Lyme doctor. A week goes by and I am thinking about the problem and then it hits me with a Migraine headache so bad that I am on the kitchen floor in pain.

I give in to what the nurse told me and I open the phone book. Hey I am lucky -- there's a Lyme doctor about a mile away -- Dr. Williams. "Well, let's see, I think I'm in severe pain." I go to him and he takes blood and a history, and does a physical exam. He tells me that I'm lucky I got to him because he has found that I am mid to late third stage Lyme disease. I have been on antibiotics on and off for colds and flus over the past three years or so. I'm probably not going to test positive for Lyme he tells me, but he says "we need to start treatment right away or you will die." By this time I've lost my job and I get a letter in the mail that my health benefits are gone and that my position has been filled. "Gee thanks, just when I need my job the most."

So, I'm now going to Dr. Williams every two weeks; paying cash, and for my med's too -- this is putting a big strain on the family. I'm out on disability as of the orthopedic surgeon (by the way I forgot that part), so money is tight. I'm forced to see everything I've collected over the years (my motorcycles, dirt bikes, and four wheelers) be sold just to pay the bills; when they come to "repo" my truck, I'm just barely keeping the wolf out the door. My wife now has to take a full time job to offset me not working; temporary disability has run out and I'm waiting for SSI, but that gets turned down on the first try, and I can't wait onother six months or a year to try again.

I think "quick, get the Dr. to say light duty ready for work." This way I can get unemployment for another six to 8 weeks. Still spending money on a Dr. and meds is killing our budget. I refinance the house and take my IRA money out to pay the bills; I still know people who should have gotten paid and never did. I'm sorry to them. I can't print it and I'm still very sick but, I'm getting somewhat better. I find someone who excepts that I have Lyme and lets me start working for him towing cars. It's hard, but it's slow and only twenty or thirty hours a week, but it helps pay some bills again, and keeps me in meds.

By this time I've hired a lawyer to help fight for me as I've got all these problems from the lumber yard: the lung disease, the back problem, and yes the Lyme. So I'm now suing them for all this misery. Well, here it is 1999 and I'm still on meds, still in pain, and with all the symptoms of chronic diseminated Lyme. My Dr. is now telling me it's going to stay this way for ever; how do I go on? What's going to happen to my family? Will I survive on all these meds and for how long? Where do I go from here? I wish I knew.

But, that's still to be seen. I'm still trying to work but I'm starting to think that going for permanent disability might be better. I wish I knew what to do, but the brain fog has me so confused that I question everything I think and do now. Is it the right thing? Help me -- I'm falling in my mind. I still have some positive help from the Lyme chat support group I found here on the net at mgh, but it's just a doorway to other suffering like me. Well that's my story. I'm sure that it's going to go on, but for now, here I am where I do not know.


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