I just wanted to say hi. I have been a LONG time lurker, so I feel like I know half of you. I have been lurking for over a year. I thought I would introduce myself. I am a 28 year old female from FL. I got sick last February (2008). Endless ear infections, eye infections, headaches. Then, it seemed to go straight neuro. I have a lot of nerve pain and horribly tight muscles in my neck. I have burning feet, burning face, burning neck skin. I have lost so much weight which is really sad because I was already very thin to begin with. I have horrible insomnia.
Last week, I slept 6 hours in 6 days. It was living hell. I have horrible lower back pain and pelvic pain, however, I have had both of those things longer than I think that I have had Lyme....but who knows, that might have actually been my first Lyme symptoms. However, I hope not because I had a baby after the back pain and pelvic pain started. My little boy is 3 and he is as healthy as a horse and smarter than a whip. I am blessed in that sense, but of course I always worry about
him, with Lyme you always tend to notice every little thing and wonder if it's Lyme.
I have left eye pressure that drives me nuts and worries me even more. When I first got sick, I had MRI's of my brain, neck, and back...everything came back fine except for the lower back had arthritis and lots of other problems. I had every blood test under the sun. I've been tested for autoimmune diseases, thyroid, HIV, etc. I've had CT scans of my pelvic area, and many, many ultrasounds of my ovaries due to lots of pain in those areas. All unremarkable. No one ever suggested testing me for Lyme, but last year in April when I was searching the internet for my symptoms, I came across Lyme disease and so much of it fit. When I read it could cause rib pain, it hit me like a ton of bricks because rib pain seemed to be such a strange complaint.
I also had surgery to remove a lymph node because I was so worried about
it. It came back as a benign inflammation but I still have so many swollen lymph nodes (particularly in the groin area) and that are actually very painful. I still worry about
them but they say they ruled out anything bad - but sometimes I don't believe them. I live in a constant state of worry. My hair started coming out in fairly large quantities and I started sweating at night this year. I have only had 2 menstrual cycles this year. I kind of relate it to not eating but 2-3 meals in an entire week, not sleeping, worrying, etc. I am in really bad health and the pain I live in is unimaginable. I also have bad bone pain that flares ever month. It will disappear for a month and come back like clockwork. All of my other symptoms are always there.
I went to the doctor and asked for a Lyme test. I had a positive ELISA and then a positive WB from Labcorp. I was on Doxy for 3 months (last year, in April-Jul) and then I found an llmd. I was on i.v Rocephin and Flagyl for a month. I felt like that could have been the way to go but I felt like I would have needed it for a year. A month was not long enough. I had the IGenex test which came back IGM positive and IGG positive. Positive band 31 as well, I also had the confirmation test that confirms it was from Lyme and not viruses - I guess that's what it was....all I know is that it cost me a lot more money! lol.
Even with the positive tests, I still worry that I don't have Lyme. I think we all do that at times, it seems. I tested positive for Bartonella as well. We tried treating the Bart with Levaquin but it ripped my tendons up and they had to pull me off of it. We were going to do Rifampin but that also made me very ill. I couldn't take care of my son. I ended up having a very BIG disagreement with my llmd which left me very angry, so I left him. My savings was drained anyway, so I don't know how much longer I could have paid for him anyway.
Well, that's me. I just wanted to say hello and I hope to post more here. I was on a different Lyme board but I have always found this one to be friendlier. I hope you don't mind if I join!
P.S. I never saw a tick, ever. I didn't get a bull's eye rash. There was a ton of mosquitoes where I lived and always feared that I got it from them. I had a husband who had Lyme (with the bull's eye rash) as a child but he was cured with 1 round of abx. He is healthy as a horse today. When I went on Doxy initially, I ended up getting bull's eye rashes on my upper body. Isn't that weird?
Post Edited (im_so_sick) : 7/5/2009 6:14:49 PM (GMT-6)