I've been doing what some of you have said...

...and getting off of the valium. Surprisingly, because I'm at home and laying down resting most of the time, my anxiety is not all that out of control. I do however find myself putting ice packs on my head when it does rear its ugly head at me...it's a weird distraction for me, but it usually works. I went from taking 10-15 mg/day and now I'm taking 2.5-5/day...

The only thing I have really noticed is that my hands are shaky.

Today I woke up so sick to my stomach; my muscles were just burning and I felt so weak, like I was going to throw up. I know this is not from the Valium. Maybe I should have made two separate posts, but it was like if I used my arms for more than a few seconds they just would become limp almost...and I had to go get something to keep by me in case I might throw up (throw up what? I have barely eaten...)

Also, I wanted to ask if anyone has problems with low heart rate. For the past week or so - ever since this new set of symptoms has come up, my 'occasional' bradycardia has become near constant. Last night I was laying down and I was barely above 50 bpm. It scares me a lot. I'm afraid my heart's just going to stop in my sleep.

Oh, and because of all of this fear...I got an earlier appt. w/my LLMD...tomorrow at 11AM. I wrote down my symptoms and decided I'm just handing him the paper and am going to do as little jumbled up talking as my fried brain has to do. I'm calling some friends to see if anyone has a wheelchair because I know that even attempting to WALK into his office with this dizziness will just set my anxiety over the edge. I don't even like to walk around my house, but I'm terrified that if I don't use my legs, the muscles will shrink and I won't be able to. I constantly sit and tense my muscles up - a weird sort of physical therapy, I suppose. I lay back, bend my knees and then lift up my mid section/bottom as many times as I can to try to keep some strength or at least show myself that I still have strength (I think it's more of the latter).

Sorry for rambling...I feel like I have a lot to talk about for some reason...mostly I'm just scared and worried that I'll be let down tomorrow or that he will say you need to see a neurologist, not an LLMD.

Okay, so my questions:

-bradycardia/slow heart rate? anyone?

-also, do those with neuro symptoms feels that it's vital to do IV abx?

-anyone nauseated/vomiting for no reason?

Thanks...

The Valium isn't the issue. I know this because I had a brief bout with these same symptoms last week, before I started tapering.

Ok Jen this is my new recomendation to you. I believe you need antibiotic IV therepy at your point. You can email me or i will be on later to talk facebook. But You need to get yourself a copy of Under our skin the Lyme documentary. You will soon find out that most MS, alzheimars, Lou gerhegs disease, parkinsons patients are actualy late stage Lyme patients. These are all diseases like sarcoidosis with unknown origin. A scientists is doing research on this. He found in 7 out of 10 alzheimers patients biopsied brains after death given to him from harvard university Lyme bacteria! Lyme was the cause of alzheimers in these 7 out of 10 brains. So theses dideases are not diseases at all they are in fact Lyme symptoms. They are the result of undiagnosed Lyme disease over 20 to 40 years. You should realize that this MAY mean that you have been infected for a long time. No MS patient parkinsons, alzs, LGD patient who has ever looked at if this was lyme has ever tested neg. And you tested pos J. You need to get yourself this movie so that you can understand the scope of the situation you are in and the level you seem to be describing to us that you are in. this may be your last call before things are ereversably. I dont want you upset. I just want to stir you up to getting treatment. Remember MS is a disease of unknown origin. I know what it is. come on girl. Yeah get that movie.

Im like grabbing my family making them watch it!!!!HAHAA they are getting mad at me. Then once the movie is over. they are like wow, and pushing it on other people themselves. I'm a mad woman. But it feels great to have a cause. Some how it makes me feel alive in this walking dead ive become.
Luv-V

Hey Jen,

From everything I've read and been told, IV Rocephin is usually the med of choice for neuro lyme. I experienced so much anxiety when I was told I would need to have a picc line inserted but trust me it really isn't bad at all. If that's what your doc suggests, please don't wait and just jump in. You'll be fine. I truly believe the more aggessive you are now the better chance you'll have of a full recovery.

I give you a lot of credit for cutting down on the valium. I'm sure it's not easy.

Please let us know how it goes tomorrow. I'll be thinking of you and sending you positive thoughts and prayers.

Good luck.