April 12, 2005

PICC Line

March 10, 2005. Just came back from my Lyme God meeting, which was at the 6-month point of IV treatment for the lyme. Seems we have a grip on the lyme but now we must address the 2 other ailments I'm plagued with. Babesiosis and severe yeast infection.

The babesia is a parasite infection similar to malaria! Unbelievable. The yeast is not what one may think of yeast infections. This is in my brain, which is making me feel like shit. Combined with the babesia, which attacks my red blood cells and basically also makes me feel like shit. So it's time for the next round on IV treatment. 500mg of Zithromax daily combined with 750mg of Mepron, YUK !!! Just switched to Malarone pills yesterday. Also 2 million units of Nystatin for the yeast and Toprol 50mg for my heart. I will get more into that in a moment so don't go away yet. Combined with the Effexor, Diflucan, Minocycline, Ambien, Carbatrol, Provigil, etc. Daily doses of course. Lets get to the good stuff.

March 15, 2005 I had an appointment to get my first infusion of Zithromax, which needed to be done in a hospital in case of an allergic reaction. I went to the hospital that put the PICC line in back in Sept.2004. I arrived at the facility, checked in, and then waited. I was called in 10 minutes later. Now my wife arrives and we were speaking to the doctor as he was preparing. I immediately told him that my PICC line was horribly done and I was having alot of problems with it in relation to my heart which I never had prior to the line being put in, and I wanted it fixed while I was there! " Ya-Ya, "O.K. we'll get an X-ray before you leave to see the placement of the line," he said.

Infusion activate. The button is pushed and the fluid flows into my body. "Ring, Ring" the phone screams out. I remember listening to his 30-minute conversation and it was driving me NUTS. He would burst out in laughter that would pierce my ears. I would say 10 or so minutes into the infusion, my heart really started flipping out and the nausea and irritability kicked in, with my right hand now holding up my head as I rapidly declined. But hey, the doc was having a grand ole time on the phone and didn't notice. Thirty minutes or so into it he came over to me and for the first time asked how I was doing. I told him my heart, my heart. Quick check with the stethoscope yielded PANIC!

At this point I went into shock, hyperventilating, convulsing,..... the whole nine yards baby, which I must say was quite a joy for my wife to witness. Trauma, Life in the E.R., well it seemed like that sitcom, can't recall alot but it was real bad, that much I do recall. I got transferred to another hospital that night, one that wouldn't kill me. Apparently what happened that dreadful day and night, was the PICC line that I mentioned prior was located in the right ventricle of my heart at which time the meds entered. Now after 6 months of this line being there with all the infusions over that time, kind of messed things up a little bit. The Zithromax entered the scene which is a very irritating drug, and fried my Perkinsy Tissues which are responsible for creating the electrical signal for my heart contraction. Bottom line, I SHOULD NOT HAVE SURVIVED THIS !!

But I did and I know why. I now know what my purpose is in life. To help others with this disease, as I have been doing all along. I ended up getting a new PICC line put in from a much better hospital, and the funny thing is the PICC line they removed was 65 centimeters long. The new one, 53 centimeters. Hmmmm, seems much smaller to me. The old line had 9 cm sticking out of my arm. BIG NO NO. Max. amount should be 3cm. Now I have to go to a special cardiologist to deal with the mess.

O.K., when will I get my first infusion done? First attempt failed, second attempt at the other hospital failed. They would not take the chance. I'm a marked man. March 22, 2005, third attempt, now at my local hospital with my doctors, 7:30 am. What a killer that was to get out of bed for. But I did and my father-in-law drove me so closure can be made and I can begin my daily infusions for the next 3 months at home.

Not so fast young man. I get there, register, am sent to the room and meet the nurse. The room is located in the ER. I told the nurse my history, gave my med list, etc. After 30 minutes sitting in the room she returned to tell me they would not infuse me because the other hospital, (the one that killed me) said I had an allergic reaction to the drug. WRONG!! You've got to be kidding me, I said to the nurse. I realized I would not get anywhere flipping out on her, so I politely said goodbye and left. Out to the cold I go waiting, for I did not drive there. Thank God for cell phones. I picked mine out of my pocket and calmly dialed my doctor's office. After demanding to speak with him, which only took 5 seconds, he picked up. I cannot write what I said because, well think about it. WHEN AM I GETTING MY INFUSION IS ALL I WANT TO HEAR OUT OF YOUR MOUTH RIGHT NOW, WELL JAMES, NO NO WHEN, WHEN, IF YOU LET ME SPEAK, OK GO AHEAD. Blah Blah.

I sat and waited 1 1/2 hours in the parking lot freezing my ass off. Then I had a thought as I was sitting on a curb staring down at all the sand from the winter's maintenance, and it was then I realized. I am just a mere spec of sand in the beaches of the world. Well I got my infusion the next day same place same time. DONE!

Next day I dragged myself to the first Lyme Disease meeting held at the town hall. It consisted of a panel of doctors and politicians there to hear the peoples stories. The doctors spoke first which was nothing but a bunch a crap. My hand was raised and I was the first one called upon to address the panel. I have never done anything like this before, but I approached the table, had a seat, and began to speak.

I SHOCKED THE WORLD THAT DAY. I spoke for about 30 minutes not about myself, but about the fact that people who are misdiagnosed are being killed by their treatments. That opened all their eyes. Just so happened the biggest news channel was there to cover it. I was a star that day. It was a very magical moment for me. Needless to say, I made the news that night and a lot of newspapers. The best part of it is I probably saved someone's life. My mission continues. Praise The Lord Jesus Christ for he is real .

Posted by Jamie at 12:55 PM | Comments (8)

Herxheimer Reaction

I'm Alive! Date: February 26, 2005. I don't even know where to begin so I will just let it flow. I remember back in October of 2004, thinking and anticipating to feel what a Herxheimer reaction felt like. For those who don't know, a 'herx' is when the lyme bacteria is killed off in areas that are infected. Toxins are released into the blood system, the kidneys get overloaded, and you have an onset of symptoms, some worse than others.

The good news is when one has a herx you just had a die off. Well needless to say I now know what it is like to experience this. I will start by saying IT WAS THE MOST HORRIFIC MENTAL, PHYSICAL , EVERYTHING, EXPERIENCE I HAVE EVER ENDURED OR IMAGINED. I can somehow explain it by referring to a movie, "One Flew Over the Cuckoo's Nest". I felt as if I was in an institution with a bathrobe on smoking a butt tightly clinched in between my fingers shaking as it entered my lips. I was mentally cooked! I recall my wife hugging me and we were both in tears. I was so pleased with the notion of being taken to the afterlife. It all made sense to me. My life insurance would take care of my family, but what about my 3 young children? Oh, no problem, I will watch them and be with them in spirit. I was convinced. Never wanted to inflict harm to myself, just was dillusional and wanted just to be taken.

WOW! During this herx I could not function physically, or mentally. Sleep, sleep, sleep. My doctors were notified of my situation and took immediate action. I needed to stop the oral doxycycline and just do the IV Rocephin. The doxy was killing too much. Woke up a couple days after and felt like I had just come out of a BAD dream.

I was lucky to have an appointment with " the big guy " within days of the herx. He was pleased at the fact that I just had a significant die off. He put me on some more meds for my mind, such as Carbatrol, Provigil, and Diflucan for yeast. He knows how to combine medications to yield a different effect that also enhances the effect of each medication also. BRILLIANT. I was told that good times were ahead . Actually, the time period was 3 months of IV Rocephin and I should snap out of it. They hit it on the head.

December 15, 2004 I remember sitting in my garage and gazing around the room. I suddenly got up off my chair and much to my surprise, MY BRAIN WAS WORKING AGAIN! I was amazed! I kept thinking of things and focusing. Unbelievable. I could feel happiness, excitement, LOVE, etc... ALL GOOD. As time passed I felt better and better. What a feeling it was to feel good, although my feeling good is a healthy person's feeling like crap. I have truly mastered the art of living one day at a time. Tomorrow didn't matter to me. What a great way to live. All good things come to an end as they say.

February 12, 2005, back in the saddle again. I just don't' feel like I did. Can't get out of bed, head tingles, not happy, music in my head constantly, whacked out in the morning, can’t focus, just existing right now. Had a Lyme Dot urine test 2-24-05. This test will hopefully capture the bacteria in the urine due to the dead bacteria from a herx, and the fondness of the bladder for the lyme like some sort of community swimming pool for them.

March 9, 2005, going to the big guy. Results will be back from urine and next move will be determined. I would have fulfilled my six months of daily IV Rocephin. "To be, or not to be, that is the question." How much did they find? Was it alive? We shall see....................................................................Jamie ----- --------

Posted by Jamie at 12:01 PM | Comments (1366)

October 1, 2004

Tests and Treatment for Lyme Disease

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 Disease specialist on August 20, 2004. I actually met with his assistant, 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.

Anyway, 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 tests were also for another type of Lyme test called Western Blot IgG and IgM. Tom also sent me to Brigham and Women's Hospital in Boston for a SPECT test, which is a test to see the vessels in my brain by injecting me with radioactive fluid. It will show the blood flow in my brain. When I left I felt so relieved knowing I was in good hands.

Three weeks have passed 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, if 2 bands are showing the result in positive for Lyme. I had seven bands. Dr. Raxlen said that the amount reflected the time I have been infected and he concluded it was more than 4 years. My SPECT test also showed that the disease has nested in the 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 permanent IV 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 doxycycline 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 a lot of looks from people. Taking a shower is a challenge because I need to cover it up. But this is what it takes to get me better. I'm on week 2 of it and so far so good . It will take about 2 months to feel better, so they say. I will write more as things progress.

Posted by Jamie at 9:41 AM | Comments (16)

August 20, 2004

Lyme Disease Rash

In 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 so he would drive me, for I could not even walk.

My wife at this point was seeking answers for what was wrong with me. Many of the answers from friends and colleagues 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 partner's 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, a 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 won't hurt a bit." Yeah, right if you don't mind needles the size of kabob spikes 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 Disease 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 bullseye. You have Lyme." Back to the hospital we went. They brought in an infectious disease doctor and when he saw the bullseye 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 IV 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 spotlight in the hospital. Everyone wanted a peek at me for I broke out with multiple lesions all over my body and 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 IV and oral antibiotics. Needless to say that my next doctor 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 doctors are about this disease.

It is now August 2004 and I have been on doxycycline 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 about 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 at 1:10 PM | Comments (4)

August 19, 2004

Brain Seizures

March rolled around and prior 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 heels 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, that I 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. O.K. 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, and 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 went 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 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 O.K.. 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, "O.K., I will get help." "Get my wife," I moaned. "What's her name"? I moaned the waiter's 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. The 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. The 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 meds 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!! I was in the hospital for a week while they checked me head to toe. Conclusion: "We don't know what's wrong with you." Every test came back negative.

Posted by Jamie at 12:44 PM | Comments (1)