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 on April 12, 2005 12:55 PM
I am so proud of you for standing up. Way to go Jamie! I remember going to a simular meeting in the area I live and got the same line of crap from the CDC.
Lizzie
Posted by: Lizzie at May 20, 2005 4:56 PM
Hi Jamie,
I hope this message finds you feeling better. I found a new blog site developed by a man who has lyme. It is very new and he would really like to get other lymies to share there stories. lymeblog.com
God bless you!
Posted by: Lizzie at June 20, 2005 4:39 PM
Wow Jamie, what a story. I see that the last posts are from 2005 so i'm writing from the future - March 2007 to be exact.
How are you doing? Has your health improved considerably? I'd love to get an email from you or comments on my site (www.itsaboutlyme.com) and perhaps I could interview you.
I became violently sick in April/May 2000 and have slid downhill ever since. By the time I finally saw a LLMD in January 2007, I finally was diagnosed with late/chronic lyme. This stuff has devastated my life physically and emotionally and i'm in excruciating pain 24/7/365 in my neck and have a host (around 30-40 symptoms) of other lyme related problems. This disease is a BEAST that people really need to know about - even now, 2 yrs later, it is still so poorly understood by 99% of the population... those of us with Lyme know an entirely different story.
God bless you and keep it up! My treatment started in early February after IGeneX results came back (Western Blot positive for LD by both CDC's ridiculously restrictive surveillance standards as well as others) and am on Benicar low-dose and Minocycline 50mg every other day... this is going to be a long, slow road, but I, too, know that my becoming a Christian in January 2000 was perfectly timed so I have walked with my Lord through this mess and that is what has kept me alive. Praise God.
Take care and write me sometime if you want or comment on my site. I am looking forward to meeting more LD sufferers out there on the 'net.
Posted by: LymeGuy at March 6, 2007 10:02 AM
Wow read your story and am dying to know what happened since. I too have a similar tale along with babesia and am being treated for that now after 5 years ago being treated for lymes. You are a great writer, need to hear more. Laura
Posted by: Laura Gauss at July 9, 2007 1:07 PM
I am sitting here looking at my bottle of pills that read Malarone 62.5-25MG PED. My system is so messed up that my doctor only tries pediatric doses on me. I am trying to gather my courage to try one of these pills but am terrified ... terrified that my symptoms will get worse if I Herx and terrified that I won't get better -- and believe me when I say that my symptoms are horrifying right now. I hope you read this and are able to respond to me -- I promise to not take up much of your time but hearing from someone who understands this thing would provide an incredible amount of comfort. Your story was sadly very familiar to me. Hope you are doing better now... ~wendy vogt
Posted by: wendy vogt at February 11, 2008 12:55 PM
Thanks Jackie! I hope you could use the notion which the kids have a very terrific time.
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