Okay, so as my signature states...I started treatment in June. I did a Flagyl pulse immediately along with the Biaxin. No change. One month later, on my second Flagyl pulse, I noticed great improvement about three days after finishing the Flagyl. Some of the improvements lasted almost one month; others subsided slowly over the following two weeks. I had to stop Biaxin due to heart problems and could not jump right on anything else due to stomach problems.
Just before completely stopping the Biaxin, I slowed down a bit due to the stomach issues. I was taking one a day instead of two on occasion...and there was one or two days where I didn't take anything because the GI problems were so bad that I thought I would just throw up the medications anyway. During this time, according to my treatment/symptom log, I notice that my symptoms began to vary in intensity, some balance issues surfaced again which had been gone for almost two weeks...some other strange neuro stuff came up and would go away randomly. I finally completely ended the Biaxin and the balance stuff became worse within two days...I started 3000mg of Amoxil which I only took three doses of because of the severe stomach pain it gave me. So, I decided that just because I couldn't tolerate the Amoxil, I would still continue the Flagyl pulse. The usual things came up...slurred speech, muscle 'weirdness', etc...but by day 6 of the pulse, I felt exactly how I did before I started treatment in June. My balance is now TERRIBLE once again...muscle weakness has returned...the only thing I can say is not completely terrible is the fog.
I am now on day 3 without any medications at all...and I really just feel terrible. It is almost like I am herxing but I'm not on anything! I have read that Flagyl alone will not do anything but break up cysts. It will not kill the spirochetes that have been freed from the cyst form. So maybe I really messed things up by letting a bunch of bacteria run rampant in my body when they could stayed quiet and calm up in their little ball!
What I'm wondering is...does this sound typical of lyme treatment/symptom relief/return of symptoms/etc?
Part of me says yes because I saw great improvement for a few days after that second Flagyl pulse...and another part of me wonders if it would have just happened anyhow.
You all know I am skeptical of this diagnosis. During those few days I thought...wow...this must really be what's wrong...and the treatment is working! And now that I am down again, I am questioning everything.
I know that I cannot stop. I know I have to keep going even if it's just to see what happens. We all know the result of doing nothing, so when I think about that...I know I have to keep fighting. I'm currently trying to get my stomach back into shape so I can try meds again. I have calls in to find out if my PICC can be covered...even though I'm so nervous about the gall bladder issues that come along with IV Rocephin. I found myself saying earlier...is the possibility of losing an organ really worth the possibility of some symptom relief? LOL. I hope the Actigall works and I will not have to get my GB removed like many have.
Okay, I'm rambling...but if you've read this and have any insight...feel free to share. I do hope I get to a point where I can tolerate the Amoxil again and long enough to try it throughout my next Flagyl pulse so I can see if I can kill anything and get any relief.
Thanks a lot,
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
"Breathe. Let Go. And remind yourself that this very moment is the only one you know you have for sure."