LymeNet Flash: Huge Back Slide

This is topic Huge Back Slide - Chronic Lymie in forum Medical Questions at LymeNet Flash.

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Posted by Visual Afterimage Man (Member # 10435) on :

Hey guys....

I got some dissapointing news the other day. I have been feeling pretty poor lately. Almost as if I hadn't done any treatment at all.

Doc called and said that my CD57 is now a 44. Last October it was at 155. He doesn't know why the big back slide.

Also, I am vitimin D deficient. He started me on Vitimin D, (5,000 IU per day) and said to get back on Flagyl.

I was making pretty good progress as I tailed off Flagyl back in November and moved to a 30 day run of Levoquin to address any bart issues I am having.

Since I complain of major vision issues, he suspected Bart could be whats keeping me from moving over the hump and on to healthy freedom.

I'm wondering if the month and a half of time I took off of Lyme meds caused me to have a big backslide. My understanding is that Levoquin isn't very effective for Lyme.

So now I'm ramping back up to 1,500 mg of Flagyl per day. [Frown]

I'm also on 5000 IU of vitamin D.

I feel sooooo poorly. I'm actually not feeling any worse on the flagyl than before I started the flagyl. Maybe thats soon to come? I'm only on day 4 since restarting flagyl.

Any advice?

I'm really considering going to see a psych. I'm so discouraged and fatigued. I'm having one of those moments of (am I going to live the rest of my life feeling like this).

When should one start yelling for IV abx? I've been on orals since Nov 2006.

Thanks for any replies.

Posted by sfcharm (Member # 9392) on :

Sorry to hear you're doing so poorly. It's the nature of this disease. I thought I'd share with you about my IV Rocephin experience.

I'm 19 months treating lyme and just finished six full months on Rocephin. I'm hoping to go one year on IV Rocephin. I did a year of orals and would say I got back to 70% of where I was prelyme.

I was told up front that I'd never be cured but that we were working towards managing the lyme. Do you do any excercise? I honestly feel that besides the antibiotics it's the next necessary part of getting well. It usually is an indicator to me how my day will go.

You should probably have a discussion with your Dr. about going the IV route. I don't regret it and everyday I"m on it I'm feeling better.

Barb