I'm writing to hear other peoples experience and compare them to mine and see if there's some good news out there.
I've been on treatment for Chronic Lyme for nearly 6 months now. I tested positive (Igenex, IgM) for lyme as well as Bartonella Quintana. I've been seeing a pretty good LLMD.
I've continuously had four standard symptoms since January 2008:
Knee swelling
Joint Pain (elbows and knees)
Brain Fog
Numbness and tingling on hands, feet and face.
Things were pretty bad and getting worse when I started treatment with all symptoms going full blast all the time.
Treatment began at the end of August with 200mg Doxy twice a day.
1 month later 1000mg Biaxin twice a day was added
2 months later Biaxin was switched to 1000mg twice a day of Ceftin due to some serious Biaxin side effects (insomnia).
The Doxy-Ceftin combo continued until last month. I'm now on two weeks on 250mg Flagyl 3 times a day and then 2 weeks of 200mg twice a day Doxy combined with the Ceftin over the whole month.
The plan is to continue this pulse combo for two more months and reassess.
I'm on 2 probiotics (Florastor, Trader Joe's acidophillus), milk thistle, EFAs, cal-mags and vitamins.
Overall I'm feeling better than before treatment but I feel like my progress has slowed. There are 2-3 days/month where I feel 95-99% otherwise the fog and/or numbness is fairly active. The joint pain is almost entirely gone, the fog comes and goes but is never as intense as before treatment (though it still gets in the way). the numbness comes and goes and though its less bad than before treatment it seems to persist. Meanwhile my swollen knees have not changed at all.
So I've got a few questions.
After 6 months of treatment I feel better but I fell like things have plateaued. Based on others' experience, is this normal? Is my doc and myself doing everything we can be doing?
I've heard from others that Flagyl was a big part of their getting better but after one pulse (the plan is two more months of pulses) I don't feel that different. Is there are corner I should be expecting to turn soon?
Should I stay the course or ask for something else? Should I be considering IV abx?
Are there any good over the counter options for my neuropathy and fog that people can recommend herbal or otherwise?
Finally, I'm considering switching my job for a position with longer hours and more stress. My current work hasn't suffered so far and I think I can manage with my current set of symptoms but I don't want to backslide. Any advice?
I'd really appreciate anyone's thoughts and reflections on my situation so far. Thanks for reading this rambling post, any insights are greatly appreciated.
So regarding the Bartonella. My LLMD says she plans to treat that AFTER we've taken care of the Lyme. Meanwhile, I read over and over on this site and elsewhere that if you don't treat all the co-infections together you won't get better.
My LLMD says she plans to run a 2-3 month of course of Levaquin to get at the Bartonella once the Lyme is taken care of. She's said that Levaquin should not be combined with any other abx. What have other's experienced?
Is Levaquin (and treating Bartonella) off the table for now or should I be investigating this option to get moving off my current plateau?
Thanks in advance for sharing folks.
Posts: 48 | From Baltimore, md | Registered: Jul 2008
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