Desperate, Losing Hope

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Caldonia Sun
Regular Member

Date Joined Aug 2009
Total Posts : 310
   Posted 9/10/2009 9:02 AM (GMT -7)   
I haven't posted much, mainly because my eyes are affected and it hurts to use the computer. But today I am compelled.

I was recently diagnosed with neuro lyme. I've probably had it awhile, but thought it was fibro. New tick bite in July brought it to the forefront. I started abx treatment and everything has gone steadily downhill. My doc who is LLMD wants to do IV rocephin, but because I seem to be sensiive to drugs, he wants a one time trial first.

The issue now is, riding in the car brings on head and body tremors. I haven't been out since Tuesday, but this has made sleeping even more difficult. I am so afraid to travel an hour each way for treatment. I don't know what it will do to me. Last night to lay down, I had to take antivert.

The hope I had to try to treat naturally and with abx has disappeared and I am praying to die now. I am so isolated and cannot cope.

Has anyone had the riding issue and does it resolve? Does it lead to seizures?


Regular Member

Date Joined Oct 2007
Total Posts : 259
   Posted 9/10/2009 9:14 AM (GMT -7)   
There was a point for a few months where riding in the car made me lightheaded and perhaps even a small amount of tremors. However, it resolved long before I even knew I had Lyme and long before I actually did any antibiotic or any other treatment, so I do not unfortunately have any idea what exactly caused it nor why it resolved on its own.

Veteran Member

Date Joined Mar 2009
Total Posts : 4717
   Posted 9/10/2009 10:30 AM (GMT -7)   
Caldonia Sun,

Hi hun:) I understand what you are going through. I used to have uncontrollable body shakes/tremors. It was very scary. Mine would happen anywhere. Ask your doctor for Klonopin. It is an anti-anxiety med but it is also good for settling down the tremors. They use it for seizures too. This is what I used and still use and it worked. It will also calm you down enough for your trip.

If it were me, I would go to that appointment. I know you are scared but it is very important to get this treated. I also have neuro problems and will be starting Rocephin soon. I just drove 12 hours one way to see an LLMD. Don't wait because your neuro problems may get worse. You can do this!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Regular Member

Date Joined May 2009
Total Posts : 147
   Posted 9/10/2009 1:48 PM (GMT -7)   
My LLMD. once said to me ''I know your symptoms can be frightening but they will not harm you'' - when I feel my anxiety levels rising - I think of his words.

Try not to be scared - I have had 'lyme motion sickness' - it does pass - deep breathing has helped me too.

Are you taking abx. at the moment?

You may need to change your meds. or back-off for a while.

Kiss My Lyme
Regular Member

Date Joined Aug 2009
Total Posts : 23
   Posted 9/10/2009 2:44 PM (GMT -7)   
    Hello CSun.You said "I am praying to die now"Whether literal or figurative is still troubling.However I do understand.You see I have this thing,lyme,too-too many years that is! Ten of 'em.Count em.TEN.123456789 10.After the first three of being so desperately ill 24/7/365 I couldn't take it any more either,so I asked God to take my life.She didn't.She left me to my own devices.Scary thought!What to do?Hmmmmmmmmmm.I went in.Deeeep within.Scary down here!Dark.Where's the light?I'll tell where it is.The lymelight. What? you might ask. Go ahead ask.I'llwait.
Yes,the lymelight!It looks like an invader. Smells like an invader.Tastes like an invader.Must be an invader, right? Or if not,what?     Time to get to work! This is where you come in.Go in.You can do it! I just know you can.You have more power than you have yet to discover!This is a good word.Discovery. Go in there and get to work!RE-discover.Sure,it can be scary. But the surface?Been there. Done that.Nothing new. Same thing ,only different.But going into the unknown,now thats exciting!What to do there?You decide. You're the boss.You define.Create yourself anew.Use the lymelight to see. This is a bless-ed curse;your motivation.Your  teacher.Perhaps the toughest ever.Usually they're the  best.Grow baby Grow! This is a rare opportunity for you.Dont waste it.Let this be your meditation.We're all with you!  Hang tough.Be strong.It is within. Go!              We love you. ByeByeeeeeeeeeeeee...

Kiss My Lyme
Regular Member

Date Joined Aug 2009
Total Posts : 23
   Posted 9/10/2009 2:56 PM (GMT -7)   
PS Sun ,my latest symptom? Im so weak I can almost not walk. I must use a cane. If this symptom keeps progressing as it has for the past two years Ill soon be in a wheelchair. Guess I'm not finished my lessons yet. Oh well I'll just keep plugging awayyyyyyyyyyyy...Byeeeeeeeeeeee...
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