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Regular Member

Date Joined Apr 2008
Total Posts : 37
   Posted 10/25/2008 7:26 PM (GMT -6)   
Hi all
I'm new to the lyme forum, not lyme. I found out I have lyme in July 08.
I'm not sure when I got lyme...started to get really bad in Sept. 07.  I've had on and off joint pain in my back and neck for years, but I also did physical labor for a job and figured it was from that. My hands hurt a little too, once in awhile. Nothing that wasn't livable.
I think my worst symptom by far was unrelenting anxiety attacks. They only happened twice and caused insomnia. Has this happened to anyone else? 
My main symptoms are in my head. I've been on rocephin for 3 weeks now and since starting it I've gotten headaches and severe stabbing pains in my feet a few times. Mostly I have severe brain fog and weakness. I can't do much of anything. I feel like I have ADD and I used to be a fast thinker. And busy all the time. Now I can't move off the chair.
I tried other abx before the rocephin and they didn't do anything.
I'm not even sure if I herx or not.
I see an LLMD and had an Igenex test done that was IGM positive. My co-infections came out negative. The bands that were pos. were 41+, 31++, 34, 45+.  I think 34 was IND.
My CD57 was 12 and C4A was almost 50.000. Anyone know anything about these tests? My doc doesn't communicate much and I'm wondering how bad I really am. I know I'm bad....but can I recover?
My story is a long one and I was really knocked  down before I found out I had lyme. I was never sick before and all this new information about what you should and should not do has my head spinning. I'm overwhelmed.
Now after reading everyone's stories I'm terrified that this will be lifelong. Like I may never get better. I'm already losing everything I can't imagine losing any more.
Does anyone just have brain problems and weakness?  Sometimes I wonder if lyme is what I really have. Of course my regular docs don't think I do. Not surprising.
Lyme also triggered Celiac disease and many alllergies.and I lost most of my hair. I can't grasp how unhealthy I've become.
Shouldn't I feel worse or better or be herxing?  I'm self pay for IV and want to be doing the right thing. My LLMD is a good one, he just doesn't give me much information. I always feel rushed.
I'm desperate to hear that people do get better even if they're bad to begin with. Maybe they just don't post on forums. There has to be some hope. I'm losing mine fast.
Does it sound like my problem is lyme?? I guess I just expect to have more typical symptoms. 
I'd love some opinions....thanks

Regular Member

Date Joined Sep 2008
Total Posts : 285
   Posted 10/25/2008 9:58 PM (GMT -6)   
I've felt desperate at many times too.. I'm not sure how long I've had lyme for but I do know that there are success stories out there.. I've seen many online.. Alot of people get better and go on w/their lives and thats why you won't see them on the lyme disease success stories... on lyme net, there is a link dedicated to success stories actually.. and many of them had lyme for years before treatment

Regular Member

Date Joined Oct 2008
Total Posts : 56
   Posted 10/26/2008 12:10 AM (GMT -6)   
Welcome to this wonderful, supportive and informative sight! You are NOT alone.  As you follow the blogs and read every one's story you will see bit's and pieces of your life (ups and downs) that are similar to your life.
When I first developed Lymes, there wasn't the Internet and blogs.  Doing research was so difficult and no one knew what Lyme's was in my area.  BUT that isn't the case now.!! You can gain a sense of empowerment by learning about your illness.   I find the more I know the more control I have and that helps me to counterbalance all the things I can't control. 
My celiac dx was also trigger with my Lyme's dx.  I was having awful flareups with my undiagnosed celiac and no one knew that it was celiac dx.  I'm always getting the "well you have lymes dx and what do you expect" or "with your history of lymes it could be anything" ... WELCOME to the world of great imitators! 
I'll write more later the fog in closing in my mind.
Welcome again!
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