Well it's been some time since I wrote, actually I did continue the story but I forgot to publish it so I lost it. But yet another obstacle in the way. I did go to see my Lyme specialist on August 20, 2004. I actually met with his Nurse Practioner, Tom, what a great guy he is ! Funny, but serious. He told me he could understand why all the prior doctors thought I was healthy, he told me I was built like a " Brick Shit House". Ha, that made me laugh, but is true..ha ha ha. Anyways, he listened to my story and understood everything. He also put the symptoms in words relating to Lyme Disease. Such as the lightheadedness was caused by the bacteria attacking my heart and slowing it down, called " Heart Block. " It was great to be dealing with someone who knew what the hell was going on with me. He then drew some blood to test me for co-infections which are common with Lyme Disease. The test's were also for another type of Lyme test called Western Blot IgG and IgM. Tom also sent me to Brigham and Womens Hospital in Boston for a SPECT test, which is a test to see the vessels in my brain by injecting me with radioactive fluid which will show the blood flow in my brain. When I left I felt so relieved knowing I was in good hands. Three weeks has past so off to the specialist again, this time to meet with the " big guy " Dr. Raxlen himself. I felt as if I was meeting the President of the United States, I was in awe. What a great guy he is. He went over my case and all my results. It turns out that my Western Blot test came back extremely high, for example only 2 bands showing, result in positive for Lyme, I had seven bands. Dr. Raxlen said that the amount reflected the time I have been infected which he concluded was more than 3 years. My SPECT test also showed that the disease has nested in my Ganglia of my brain, which is why I have so many neurological symptoms. He was interested in the fact that all his patients from my neck of the woods all have the neurological disease, which is the worst one to have. Diagnosis, Neuroborreliosis. Time to go on I.V. therapy. Went to the hospital Sept. 17, 2004 to have the Picc line put in, which is a permanant I.V. line that goes in my arm up into my chest above my heart. I give myself IV Rocephin ( Ceftriaxion ) every night plus take 400 mg of Doxycyclene plus 23 other pills a day to repair my brain and immune system. Dr. Raxlen tells me that all they can do is kill as much as the infection as possible then put the rest in remission. I will be on this picc line for about 6 months. It's really not that bad except for the fact that I have 2 IV lines hanging out of my arm, I get alot of looks from people. Taking a shower is a challenge, need to cover it up. But this is what it takes to get me better. I'm on week 2 of it so far so good. It will take about 2 months to feel better, so they say. I will write more as things progress.
It all began November 2001; I had lower back pain and went to the doctor. He told me I had arthritis in my back so an MRI was scheduled. Results were negative for disc injury some swelling but nothing out of the ordinary. I then began physical therapy at which time the Therapist noticed my leg muscles were extremely weak. Weak? I said. I've been a Machinist for 20 years lifting a lot of weight also played hockey most of my childhood, how could they be weak? Anyways, therapy continued for 2 months. Back pain seemed to diminish.
Let me go back a few months to about August 2000. I felt a pimple like bump in my armpit, so I examined it in the mirror and much to my surprise it had little legs. OH MY GOD, I said, What the heck is that? I tried to grab whatever it was as tiny as it was and pulled it off my skin. I then realized it was a Tick. I had a telephone conversation with my Mother that day after the episode she told me "make sure you don't get Lyme Disease." Lyme Disease what are you crazy? I said. Now back to the story. Shortly after my physical therapy ended I started to get a sever earache. Hurt the whole side of my face right down my neck. Once again I went to the doctor. He asked what was wrong and I told him I thought I had an ear infection. After he examined me he told me I had TMJ. What in the world is TMJ? He asked if I grind my teeth and my response was I don't think so. He gave me some painkillers and said it would pass in a few days.
After a long cold winter spring was here. Let the golfing begin! Of course I just got into the game and joined a Country Club. After my first round as a member I pulled something in my chest, felt like a spear stuck in it. No golf 4 weeks. Managed to enjoy the rest of the season. Once again Old Man Winter has reared its ugly head, infact so ugly I could not get out of bed every day it was a struggle. I was told it was the "Winter Blues." OK lets back track, Tick in my arm pit, Arthritis in my back, weak legs TMJ in my jaw, pulled muscles in my chest, now Winter Blues. Wow what a year this has been, bring on the Spring!
March rolled around and prior I noticed I was getting light headed a lot and my hearing was pulsating at times. HMMM must be the stress of being a business owner. Well, I had to go to my Daughter's cheerleading competition at which she was 6 years old at the time. The music was so loud but I dealt with it the best I could. After the competition ended I drove my son home with me and my Wife drove my daughter home. I decided to stop at the food mart to buy some drinks for the house. When I got out of my truck I felt the most intense head rush coming on. I did all I could not to pass out. I had to hold myself up in the store for a few minutes. All I could think about was how I was going to get my son and I home safely. I waited until I felt I could drive even then I still had to pull over to snap out of it. While I was driving I started to loose vision in my right eye. At that point I pretty much clicked my heals and thought, "There's no place like home." I arrived safely at home. My youngest daughter greeted me at the door with the baby sitter. At that point I still did not feel well so I asked the sitter to stay until my wife got home it was then that I lost all vision in my right eye. I felt I was going to die, maybe popped something in my brain. I went up to bed to lye down. A couple hours later I started to come around a bit.
Needless to say, I went to the Doctors the next morning and explained the head rushes and vision problem. He felt I was having Brain Seizures. Great! Seizures what else could possibly happen to me. Had yet another MRI, which came back negative of course. Then had an EEG. That was an experience in its self, wires glued to my head, strobe lights flashing in my eyes WOW! I don't mean to bore you with all these details but it is for a reason, as you will see. Now the fun begins. After the EEG my Wife, myself, along with my 3 beautiful children and three other families went on our planned Disney Cruise, fun fun fun !!! I have not gotten my results back prior to departing. April 2004 having a grand ole time on the cruise except for the fact that I was very emotional. I mean I cried at breakfast for no reason. I looked at my wife and wondered what was going on with me. Must be the stress right?
Next evening at dinner all the action in the dining room started to get to me. I felt the head rushes coming on then the tears fell from my eyes. OK just another night, time to go to bed. In the meantime my friends started to notice that something was not right with me so I explained to them that the loud commotion and lot's of people were making me dizzy, they understood. The next day passed into the evening so back to the dining room again. The waiters were dancing, singing, clapping all around me. I felt like I was going to collapse. I couldn't handle all of the commotion so I left from the table peacefully and the dizziness came on like a ton of bricks. I made it to the bathroom to wash my face with cold water to try to snap out of it. I needed to get some fresh air so out to the deck I go at which point I found a nice padded lounge chair Baboom! I fell right onto it. All dressed up and couldn't move a muscle although I could hear fine. At this point I had no sense of time but I knew I had to let my wife know where I was and what was happening to me. It was then I found my opportunity after all the people walking by me commenting how I was passed out probably drunk yeah I heard all of them. I noticed I heard a women sitting next to me smoking. I thought to myself, I need to get her attention somehow but I felt paralyzed. I managed to lift my left index finger and moan and she noticed it. I got her! She asked me if I was Ok. I could not respond. "Are you drunk? Have you been drinking?" she said. NO! Need Help! She then realized this was the real deal. She said, "OK, I will get help." "Get my wife," I moaned, "What's her name"? I moaned the waiters name and dining room name and that was it. She went off on a mission, as I lay there helpless. Well, help came all right. Next thing I felt was a hand of one the wives who was with us. OH what a comfortable feeling that was to have contact with someone I knew. I grabbed onto her hand and wouldn't let go. Then I lifted up and gasped wide-eyed then back down I went. Ship's Doctor arrived, plucked me from the chair and placed me in a wheelchair. Off I went face covered with a blanket so my children would not see my tongue hanging out of my mouth. Nice ha? Ouch! The needle prick OOHH the medication hits my blood stream Ahhh. Now my wife arrives. I don't know which was worse, her seeing me like this or the actual event itself. I cried she cried but I needed to tell her I was ok. Doctor felt I had a panic attack. After a while they brought me back to my room. The next morning we called my doctor from the ship. I still did not feel well. He spoke with me for 5 seconds and asked me to put my wife back on the phone. He told her to bring me back to the sick bay for he felt I was having another seizure. Off we went tongue hanging and all. More seizure med's stabilized me. Two days left until home. Finally arrived back home of course the next morning went to see the doctor again. He felt I was having brain seizures so he ordered more tests. I returned back to work and lasted two days then Wham! It happened again. The call to 911 was made ambulance, police, fire department, all arrived. I must say they were extremely fast to respond and took real good care of me, my hat's off to them Thank You!! In the hospital for a week checked me head to toe. Conclusion, "we don't know what's wrong with you." Every test came back negative. Date June 2004, after a great round of golf I went into the clubhouse to collect my winnings. I noticed I had a stiff neck and felt very weak. It came on strong. I went home into bed with a temp of 103. I stayed in the fetal position for 3 days then the headache came on. In fact headache is an understatement it was more like an axe was buried into my brain, OH MY GOD the pain. I could not even open my eyes nor think. Fever 103 still. My wife had taken my children out so I could rest. I called my doctor and was able to go in. I called my Dad for I could not even walk, so he would drive me.
My wife at this point was seeking answers for what was wrong with me. Many of the answers from friends and colleges were Lyme Disease. Naturally when I arrived at the doctors I was asked "So, what's a matter with you now?" My reply was "I think I have Lyme Disease". "Ha, what makes you think you have that?" "Well, I live in an area prone to ticks and I golf a lot and go into the woods to find my partners golf ball." She (the nurse practitioner) began to examine me. Within 5 minutes she stated she needed to get the Doctor on call because she felt something was not right with me. He came in, checked me out, looked at the nurse, and then told me I needed to get to the ER immediately for something was very wrong with me. "We will call ahead for you so they take you right in." Off I went with my Dad. Into Triage I go, mask placed on my face for fear of Viral Meningitis, I'm now put into isolation from the rest of the world, special room so no airborne viruses will be spread, NICE!! "I JUST WANT THE HEADACHE TO GO AWAY!!!! Oh it hurt so badly! Spinal tap time "this wont hurt a bit "yeah right if you don't mind needles the size of kabob spike stuck into your spine. I guess the level was elevated but not enough to diagnose it as Viral Meningitis. Shift change, new Doctor comes in. She tells me it appeared to be a virus and they could not do anything about it so they sent me home, can you believe it? My wife asked the doctor if they checked me for Lyme and He said, prior to the shift change, "I don't feel that is necessary." Home I went.
That night I resorted to Prayer for I knew something was wrong with me. Well my prayers were answered! The next morning I managed to drag myself into the shower and when I got out I noticed an oval circle like red line on my inner thigh. Hmmm what's this? Once again my wife took my kids out of the house. She called me and I told her what I found on my leg "That's it, That's the Bulls eye, you have Lyme." Back to the hospital we went. They brought in an Infectious Disease Doctor and when he saw the Bulls eye he knew exactly what I had. Off to Cat Scan I go to see if my brain was swollen. Sure enough it was extremely swollen. Now the panic sets in. Three bags of I.V Antibiotics flow into my veins. I was told I had Encephalitis and Bacterial meningitis so I would not be going home for a while. Well now I was the spot light in the hospital, everyone wanted a peek at me for I broke out with multiple lesions all over my body, still had 103+ fever. It took about three days for me to come around, to realize all that was happening. I was sent home after a week of I.V. and Oral Antibiotics. Needless to say that my next doctor's appointment was one of a venting period. Not only do I have Lyme disease but also it's in my nervous system now, which is the third stage. "SO WHY DIDN'T YOU EVER CONSIDER LYME DISEASE?" I asked. "We messed up" was his response. That goes to show you how the doctor's are about this disease. It is now August 2004 and I have been on Doxy since. I am going to Greenwich CT this Friday to meet with Dr. Raxlen so I can begin the road to recovery. I still struggle to get out of bed every day! I have a long road ahead of me but I will get there! So, please be aware of your symptoms. Lyme Disease is the biggest epidemic in this Country. Educate yourself with this horrible disease. I leave you with a poem written by John E. Laughlin.
Today I just don't feel alive. So, what's new ??, no big surprise I look towards Heaven and wonder why? As I lay here in my bed, I try to sort the confusion in my head. I think of how this disease has almost ruined me, and others too. Sometimes it amazes me, the hell I've been put through. I feel empty and heavy, it's very strange. Tears run down my face as I deal with the pain. It's times like this that I wonder if I'll ever be the same. I would love just to feel Good!! To leap up from bed, like a normal person would. Conventional methods just haven't done the job, Now into experimental treatment, I feel I am odd. It's turned from day to night, Though I haven't won the battle, I won the daily fight. Well, tomorrow is another day, now it's time to pray. Dear God, I've had enough, my dues have been paid!
