August 18, 2004
A Twist of Lyme
August 18, 2004
A Twist of Lyme
It all began November 200. 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've been a machinist for 20 years lifting a lot of weight. I also played hockey most of my childhood. How could they be weak? Anyway, 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 severe 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 for 4 weeks. Managed to enjoy the rest of the season. Once again Old Man Winter has reared its ugly head, so ugly I could not get out of bed every day. It was a struggle. I was told it was the "Winter Blues." O.K., lets backtrack... tick in my armpit, 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 prio to that I noticed I was getting lightheaded 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. 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, but even then I still had to pull over to snap out of it. While I was driving I started to lose 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 babysitter. 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 lie down. A couple hours later I started to come around a bit.
Needless to say, I went to the doctor 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 itself....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 had 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 and 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 lots 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 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 of 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 and she cried but I needed to tell her I was O.K. 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 and 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 and 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 or 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 the 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, and a mask is 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!
Posted by Jamie on August 18, 2004 10:27 AM
DATE: 9/30/2004 08:49:10 PM
Your story just has me in tears! I used to work in the medical field in Respiratory Therapy many years ago and left because of the arrogance that had me near to cussing a doctor out at children's hospital. I knew I needed a different profession. I pray you may be healed in spite of seriously inept medical care!
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Posted by: Ijellorca's Eyes at February 13, 2005 08:12 PM
I was diagnosed with Lymes Disease February 1990 72 hours before giving birth. I am the first and only known case of Lymes Disease while with child. The concernes were serious, as they had no knowledge of the affects to the unborn child. It took Tulare County Infectious Control in California, San Francisco Infectious Control, Pediatrician, Dermatologist, Obstratrician....and 5 months of topical antibiotics and lots of labs to conclude I had contracted Lymes Disease in my first trimester. The course of care.....imperative to commence 5,000 mg of amoxicillin x3 for 21 days. They would not induce labor until I had been on the meds for 72 hours prior to inducement. Many, many physicians and nursing staff asked to see the Lymes while I was in the Hospital, as they had only read case studies and not the real thing. I find that under extreme duress the Lymes re-activates, antibiotics to follow. It does not appear that they ever cleared it from my body and perhaps will never.
Posted by: Lynn at March 22, 2005 06:57 PM
I have Lyme too - tick bite was in Sept 2003 but didn't know what it was - thought it was an allergic reaction to a spider bite or something. By Nov was a complete wreck and unable to work. Had the EEG etc testing including 2 sleep studies because they suspected narcolepsy. No answers.
Started haiving all over extreme pain in Feb and jerking of my whole body that would be set off by the slightest sound or even change in light intensity such as a flicker onthe tv screen.
My primary care doc was getting tired of me and sent me to a doc who had an interest in fibromyalgia. That doc did diagnose me with fibro but suggested that I might have Lyme. We pursued that with test and he showed me pix of bullsyes rashes. THAT was my spider bite. I described how it started, progressed and faded. He said it was classic.
I've been on various antibiotics, etc since and am just now (18 months after the bite) starting to have some improvement. I do have fibro - which was caused by chronic lyme.
Posted by: Pam at May 11, 2005 10:30 AM