October 01, 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 on October 1, 2004 09:41 AM
Hi Jamie - I just wanted you to know that I read your blog. You have a fascinating story. It sounds like you have beeen through hell but you have found some good guidance and I wish you well! Write on! Laureen
Posted by: Laureen at October 2, 2004 12:05 PM
Hey,I hope you're doing okay. I have it too, so I know what you're going through. You will probably have to stay on oral antibiotics for a long, long time after you stop the IV.It's a long road and a hard one, but don't give up on it. The results would be terrible. I hope this is a good Thanksgiving for you.
Posted by: MaxedOutMama at November 23, 2004 05:26 PM
My heart goes out to you Jamie. Lyme really sucks I know, I have been dealing with it for four years. Hang in there and be sure to get plenty of rest, try not to stress too much, I know its hard but it can delay healing.
Take good care sweetheart
Lizzie
Posted by: Lizzie at May 20, 2005 04:52 PM
I have just started my first blog. (Anna Wilmoth's Images) I was looking at other blogs to see what is out there. I didn't want to write such boring stuff that no one would return to read it. I was caught by your title, A Twist of Lyme. I thought ... how clever! My son in New Jersey has Lymes and I was going to send your site to him. Then I started skim reading....then I went back and read every word. You have to admit there were lots of words. What a story! I am been in situations where the doctors wouldn't listen. There is nothing more annoying , especially when you are in pain and they are not... They can be real casual about it all. I do wish you all the best and just know we are out here reading what you are saying and we are learning from it. I took a long time to say that, didn't I?
Posted by: Annalea at August 5, 2005 11:01 AM
Hello, I have a friend with chronic neurological lyme disease. It has been a very trying time for her as well as all of you I am sure. I was wondering if anyone has had experience with Dr. Raxlen in Connecticut? I am trying to show her some light at the end of the tunnel. Any positive feedback about the doctor or the relief of symptoms would be so appreciated. Thank you so much.
Posted by: Adri at February 1, 2006 11:18 AM
just wondering, your bullseye took over a year to comeout?
Posted by: charlene at April 27, 2006 03:48 PM
Help!!! I can't find a doctor in my area who is well versed in Lyme Treatment.
I live in upstate NY. Albany, Troy, Rensselaer, Lathm area.
thank you
Patty
Posted by: Patty Shaver at October 2, 2006 05:36 AM
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