2. Does anyone get panic attacks? A few days ago I was sitting quietly at the beach with my husband and a good book. This is my favorite thing to do. From out of the blue I had a sudden NEED to get home....Fast. I felt like I was going to jump out of my skin. Every time I've thought about leaving the house since that day, I panic and want to lock the doors.

3. Does taking all this medication cause extreme fatigue or is the Lyme solely to blame? I stopped the Lexapro and Ambien because I was too tired to lift my arms when taking this stuff but I'm still tired all the time.

4. What makes a doctor qualified as a LLMD?
Thanks everyone. I am helped so very much reading the posts here.
In your pain, frustration, fatigue and general feeling of lousiness, you manage to reach out to others and offer help and humor.
Lidia

But, if you follow this link to Tincup's, Links for new LymeNet Members you'll have many answers to your question. Just didnt' want you to have to sit around waiting for an answer.
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Ok, I'll give it a try.

Simply,

1. YES, and you can expect to most like get worse.
2. YES, many, many posters have experienced this.
3. Fatigue and pain are the number one and number two complaints to my LLMD, his top two symptoms of LD from his patients...he sees hundreds and hundreds of LD patients.
SOUNDS LIKE A HERX YOU ARE DISCRIBING!!! Herxes are intense Lyme symptoms that you have had and new Lyme symptoms that you have never experienced before.

I thought you were supposed to wean it off Ambien...that could lend to you have headaches.

If you stay around you'll see every symptom known to Lyme patients and yours will probably be no different. This from my experience of reading this board about every day for 2.5 years.

4. A Lyme Literate Medical Doctor is who how generally only treats Lyme and co-infections. Just because a doctor says that he knows about LD, doesn't necessarily mean that the does. Usually, more likely than not, he is a members of ILADS (do a google with that as the keyword)

He is known in the Lyme Community....we have thousands of members here all over the USA, Europe, Australia, Canada, Mexico, etc.

Without seeing one who only treats LD, you are surely risking your treatment and chance to get better or well. Believe me, I've done it myself, tried to wing it with my PCP, only to get myself into big trouble and harder to treat.

Thousands before have learned this, not seeing a real LLMD, will lead to no good for you.

Just wanted to reply to #2 and your last statement.

Panic attacks- had a few several yrs ago pre-lyme (before knowing I had it, surely had it 3 yrs ago) Notice the post on panic attacks on Medical I think. Should have put the link here, sorry.

About your last statement- I feel the same way. If you are having a bad day, someone here can always make your heart feel warm or you might even end up with a smile on your face.
Great place for loading up on knowledge!!
Also full of support, no matter what the question or statement may be.

An MD who knows that the CDC makes mistakes and is not an infallable institution.

An MD who knows that a textbook or book of any type is not the only opinion.

1. Has anyone ever taken themselves off meds for a while?

Yes. And I became worse.

2. Does anyone get panic attacks?

I haven't had panic attacks in a long time. But, before being dx, I was given antidepressants....3 different kinds. With the last one, I started getting panic attacks...I was breathing in a little brown bag to get my breath. I haven't had them since taking myself off of the antidepressants.

Heat also has a negative affect. I need to limit myself on how much sun I get. And I can only be out in it on my strong days for very short periods of time.

3. Does taking all this medication cause extreme fatigue or is the Lyme solely to blame?

I have wondered this myself. Sure wish I had the answers. Sure would like my energy and strength back.

4. What makes a doctor qualified as a LLMD?

I feel they need to be a member of ILADS. This is a group of doctors that started up a few years ago. There were only 100 at first. When I listened to the hearing in Sacramento, someone mentioned that there were now 200 members in the US. It is growing, but I feel it will be those with lyme who let the docs know about the organization if the docs are open to it.

I found listening to the hearing in Sacramento very informative for me.

It is at www.calchannel.com

1. Click on webcast
2. Type in Feb in the archives
3. Scroll down to Feb 25, Health and Human Services
4. Click on watch
5. There is a 9 min. lead in

There also is a vet who put out a report called "Lyme Disease: The disease of ignorance."

He put in this report what I learned in bits and pieces. The problem I have had is most docs being willing to relearn or learn.

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