thank you, deeply, for sharing your story.

you will make it.

your spirit shines through this screen, as bright as that light from which you emerged back into this crazy, whirling world.

hold onto your hope.

I barely know how to begin to respond to your story.

The burdens you have been given are overwhelming, yet you also shine with the radiance of your gifts.

What a hand you have been dealt in this life!

Your warmth, insight, intelligence, humor and strength are amazing. Somehow you have both a sense of being grounded along with a transcendence about your situation.

And as far as "negativity" and depression about your illness and the way you have been treated, that is a very SANE and REASONABLE response. You've experienced tremendous losses; grief and anger are normal.

You wouldn't be so mad if there wasn't so much at stake!!!

In spite of all that, your gratitude pours through in your determination to keep going, thanking the board for being here, a desire to know what you are to learn from all this, your courage to share with authenticity, and a sense that you have a contribution to make.

Thank you so much for sharing your feelings about yourself and your experiences with this illness with such stunning clarity.

Sometimes I imagine us all as band of refugees, heading for a "promised land" together. Some forge ahead, some fall behind, new people join.

Everyone has adventures, wisdom and gifts to share. I feel privileged to be continuing my journey on Lymenet with you.

I have panic attacks now, I have mini seizures sometimes, and i have pain...most of the time I"m good..but on a bad day like today, i'm in constant state of anxiety..like I'm 'right on the edge'..jumpy and like i'm going to lose it! I started getting like this from the doxy..just five days worth..

so yes, a med can make you feel this way...some meds just dont' agree with us...you need to watch your own body and keep open the lines of communication with your llmd..

After seeing lisa's response, I realized that in answer to your question about brain problems: Yes!

My son, JC has neuro/cog lyme. He has not yet recovered from his initial herx on rocephin which caused intense psychiatric symptoms.

We continue to work closely with our pediatric llmd and a psych llmd with additional antibiotics and psychotropics to manage his illness.

Re: doxy, I'm sorry; no experience.

Insomnia is a big factor in Lyme; any type of herx could bring this on or exacerbate it.

I can also give you the name of our pediatric llmd who has much experience with gestational lyme.

Wishing you nothing but the best.

love,
andie, JC & Julie

I was bit by a tick July 2004. I've been on Doxy for 4 months now and am tolerating it surprisingly well. I usually react badly to any medication. I ALWAYS take it after a meal and with 2 full glasses of water. The blue capsules made me naseous but the tablets (Mutual brand) do not. I try to take the Doxy 12 hours apart 8am & 8 pm but sometimes take the evening dose a little earlier to make sure I have a full meal with it. I avoid dairy products especially near Doxy time. I've also been on an anti yeast diet since starting Doxy. The diet has made a huge difference.

I was in a complete fog the first month. The second month I began having short periods where I could think clearly. Each month the foggy periods are getting shorter and now I am starting to feel normal or close to mormal for larger parts of each day. It helps to write down how I feel so I can realize that some of my symptoms are getting better, rather than focusing only on the symptoms that remain.

My sleep pattern changed alot especially in the first month. I don't know if this was due to the Lyme, Doxy or both. Normally I am a night person and basically useless in the morning. Now the only predictably good/clear time I have is when I wake up, which I do earlier and easier than before. In the first month I would get very fatigued within an hour or 2 of getting up and then would be in and out of a fog until around 10pm when my focus would return. I would then stay up trying to answer emails and do what I had not been able to do all day.

Sleeping became much more difficult. I would toss and turn and take blankets on and off all night as I would go from freezing directly to too hot & sweating. I never seemed to reach a happy in between temperature. I would get up to pee every hour and then would toss and turn some more. When I would get up my ankles were so stiff that I would hobble to the bathroom. The soles of my feet burned and I was itchy. Oddly at 7 or 8 am I would feel OK and would get up for my good hour of the day.

I would try to do the most important things first thing in the morning while I could. This was usually making a list of the things I had forgotten to do, doing the dishes and most importantly cooking healthy food to get me through the day. Much of the rest of the day was devoted to laying on the sofa staring into space, reading emails over and over unable to remember what I had just read and trying to do simple tasks without forgetting what I was doing.

Now after 4 months I am sleeping better and on a really good night only get up 1 or 2 times. I still add and subtract blankets but not as frequently. My ankles are only stiff occaisionally. I still make sure to do what I need to do in the am and tend to melt down in the afternoon.

Well I hope this helps. Writing it has made me realize how much I have improved. I was in such a fog in the beginning that I don't think I realized just how bad I felt.

Oh yeah, Doxy made me very sun sensitive so I never go out with out a hat, scarf & sunglasses. People love my new style and think I have become fashion concsious (not), most have no idea it is out of medical necessity. I got wide brimmed straw hats and big cotton scarfs for the summer. Now that it is cold I wear a wide brimmed wool hat, head band and fleece scarf or neck gaiter. I have to be very careful about the sun even if I'm only out for a few minutes.

Be good to yourself,
"Hats and Scarfs"

For all those that responded back to me I felt honored.

I've been so out of it I haven't been able to respond back until now.

I wanted to say thankyou for all of your kind words. Your responses brought tears to my eyes.
My older son walked in to see me crying and asked me why I was crying and I just couldn't explain why.

Even now I can't tell you. I won't be able to figure it out until I come out of this fog. The best I can come up with is: Empathy.

Another day of doing nothing. Paid one bill. My A-type personality has turned into a Z-type.

Still, I keep trying to tell myself... be grateful.

Your family might not realize that the longer you have had untreated lyme, the sicker you are and the longer the treatment needs to be. But you're headed in the right direction.

My family's been good, but i have always worried about how much will be too much. I relied heavily on the board for support during my worst moments and tried to spare my family somewhat. Not that they would not support me, just my choice. Besides, they have little frame of reference, but folks here do.

Re your herx, are you on an anti-yeast diet? Taking the supplements Dr. B recommends? I also use a lot of detox and immune support tea, even when not on abx. Some people make their own (Tincup has a good recipe) but I buy Yogi brand.

I'm thinking of you, stay in touch,