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Where to begin, lets go back too my years as a child, I’m forty-two and have been affected with Lyme since I was about thirteen years of age. Started quite fast, went down with a headache and an extreme fever. The doctors said I had a viral headache and treated it with antibiotics for a couple days the headache did go away.
Shortly afterwards, I began having trouble with my right foot, and many other places begin to hurt. Went to the doctors for my foot, barely could put any weight on it, was told I needed exploratory surgery to see what was going on, they couldn’t find a thing, skipped this.
From that day on, from the first headache, my life changed. Almost every year I would end up in the hospital with mysterious illnesses, mostly high fevers and light sensitive headaches.
I was affected in about 1975 by my symptoms, nothing really changed, would go to the hospitals every year sometimes a couple times a year, and was always told I have virus headaches.
In about 1994 my symptoms starting changing, I was driving in Europe when I noticed my feet and ankles had swollen so big, my feet wouldn’t fit in my sneakers. I went to a French Hospital and was told to put my feet up in the air so the swelling would go down, didn’t work and the swelling stayed a few days.
Then in 1996 I was walking with friends in Amsterdam, I felt like my legs were burning, but had long pants on and didn’t think of anything, went home and when I looked at my legs, from the knees down, I had a bright red rash. It burned as if my legs were dipped in boiling oil, the doctor’s in Holland couldn’t say what was going on. The rash lasted about a week, and took about four months to go completely away.
As the years passed from 1996 to 2000 I noticed I was having trouble with my legs in many ways, now the red rashes had come and gone many times. With my one leg with a 6x8 Red rash on it I went to another doctor, and was told to go see a Dermatologist, this doctor walked in the room, introduced himself, looked at my leg for about 10-seconds and told me I had Schamberg's disease, this doctor for his ten seconds billed me $400.00 and walked out?
Then in 2001 in Bulgaria a became sick with a fever that started one day, my fever rose to 104 degree’s, and lasted for almost 6-weeks! I was so I’ll I couldn’t role in bed without extreme pain, lost weight by the day. The doctors in Bulgaria tried, more then any other doctors, even coming to my house almost everyday… Think they were worried about an American dieing under their care and they brought in every specialist they could, even put me on antibiotics many types but the illness persisted. I had such a light sensitive headache that I had to have all the windows taped shut, with blankets over them, couldn’t have a shred of light otherwise I would be pounded into almost un-conciseness by the headaches and fever.
I flew home from Bulgaria to get some help, once I was back on my feet again. But no one had any answers, so I thought I would just ignore what was happening and it would go away, well, as all know that have Lyme this doesn’t just go away…
Then in 2003 this is when the Lyme started showing it’s true colors, but the Doctors from Brian to Allergists all explained to me, how I was creating all the systems myself! That all was in my head! I was starting to have so many problems in my joints that I believed I had arthritis, but the Lyme would take on a more sinister face.
In the next weeks that followed the headaches returned, started eating aspirin, sometimes a dozen or more a day. This kept the headaches at bay, but not the Lyme.
I was working at my desk about a year ago, stood up, and from this second my life has NEVER BEEN THE SAME! Something happened the Lyme attacked my nervous system and brain. My employee Tom was there and looked at me, said: [I]Lets go you’re going to the hospital.[/I] It seemed I had a stroke. My face sagged on the left side, and I didn’t really know where I was.
At the hospital they couldn’t find anything wrong and after many test such as Cat Scans, X-rays, and blood work I was told I was fine and could go home, (I didn’t feel so fine). It didn’t take long about a week later I was rushed to the hospital again with shaking attacks, and once again was told I am causing all my symptoms with my great imagination!
Well a week later my imagination was at work again and for the third time in two weeks was rushed to the hospital with shaken fits, was losing all control, but yet was still told I was causing all the symptoms! Now wait a moment, what a mind, I was powerful I guess, it most of looked this way to the doctors. My mind was causing uncontrollable shaken, red rashes, swollen joints, and headaches, muscle twitches all over my body and many other things. What has been really hard is my vision is going crazy don't know how else to say it. Like I'm living in a 3d world?
It wasn’t long before I was rushed again to the hospital but this time was different although I was shaken I could feel my heart was having all types of problems, from beating to fast to skipping beats. In the hospital hooked to a heart monitor, one of my buddies came to visit me, looked at my heart monitor and said, your heart, what’s up with that. I looked at the monitor; I was feeling really sick, like this was it for me! My heart was beating from 45 beats per minute to 150 beats per minute and was changing every few seconds. Finally I heard that sound, the same sound you hear on TV the flat line buzzer… I looked to the very old guy next to me and thought, poor guy! Looked to my wife holding her hands at her mouth, she was looking at my monitor and it was flat lined! It was me whose heart had stopped, I yelled out: [I]my heart stopped![/I]
I mean what would you do, there where no doctors or nurses, so I believed a good yell was in order, my heart did start beating again on its own, but I felt the blood in my body sit still!
This leads me too today, I’ve tested positive for Lyme after a couple of test had been negative no antibodies to be found. I was put under a long-term antibiotic treatment for a year, and about two weeks ago was removed from the antibiotics and within this time, the shaken seizures began again. My doctor put me on antibiotics again but I don’t think this is the answer, although it is buying me some time to find other ways.
I’m losing who I am, what I’m about… Everyday it seems my mind slips further away, and I am becoming a large lump of worthlessness… I want to work be productive but?
It’s strange to me, the hospitals and doctors found no help for me, tried putting me on mind altering hormones claiming my brain is releasing wrong chemicals! Man I knew I wasn't going nuts and that the doctors really didn’t have a clue…
So I have trouble working now, thinking is hard most of the day, the doctors that ran my bills up to 40,000 in just a few visits to the hospital, was left after insurance with 10,000 in bills. Can’t work to make money and yet all the doctors for years that mistreated me wont their money! And the doctor that has really helped me my insurance doesn’t except! So I pay the doctors, hospitals and the real doctor that understood it was Lyme.
In closing I am getting worse, my Lyme test after one year on antibiotics has tested for many more of the antibodies than the last time, even on the antibiotics the Lyme has managed to either get worse or appears to be heading that way. For the first time in a year I had my first shaken seizure again, I know the doctor is doing all he can - but I am not sure at this point that there is anything or anyone that can help with this?
If you know of any doctors worldwide that are Lyme experts, I would travel to meet with them. But I think if they don’t come up with something I’ve never read about or something new, I don’t see to many ways of really beating with this, more just living watching a productive person become a burden on society!
I am sensitive to many others needs, and that all at times needs a little help, if I can get this help I need, I’d live the rest of my life (as I have always done) sharing any help I can give with others.
Thanks for your time and if you’re reading this, I hope your not feeling what I’m feeling, this really tares up your emotional being, leaving you filled with anxiety attacks that make me want to end it all as fast as I can…

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