posted
Hi, I don't think I've posted before, although I've used lymnenet for a great deal of support and help navigating to treatment. I'm not sure what my question is, or if this is where to post it, but I'm discouraged, and I'm up here, because you guys know what I'm dealing with.
I've been sick since 1997 or so, really sick since 1999, so you know I was amazed to be diagnosed with lyme, finally, last year, and to begin treatment with doxy last January, 2009. I began to improve--don't think I herxed, don't recall--but had to stop because of sun-sensitivity in the spring, 09. At that time my LLMD put me on Amoxicillin and Plaquenil, and I just got better and better. By this winter I was able to walk 4 miles! My brain felt like the brain I'd had decades ago, just older. Nothing hurt. My major symptoms was peripheral neuropathy, and I only had minor symptoms of nerve damage left. My LLMD said that at some point he'd want to treat me with Flagyl, but wanted my neuropathy to be securely improved before doing so.
Well, in February I began declining. Maybe even a little before that. He'd stopped the Plaquenil and added Zithromax, and then Bactrim, and I had awful GI symptoms, despite probiotics and florastor. He added Augmentin; I don't know that I herxed, but my GI symptoms were awful gassy bloating and discomfort.I began to get tired. And more tired. Then the brain fog came back. Then the neuro symptoms, so I don't feel comfortable in my own skin. Now I feel demoralized and tired.
Because all the next drugs are potentially neurotoxic, my LLMD has said that I should just take a month off antibiotics altogether, do a month of diflucan for any yeast I've been growing, and next month we can decide what to do.
So I'm feeling like after the best year I'd had in 15 years, I'm regressing to where I was before, and losing the life I was looking forward to.
I'm not sure of the approach.
I'm just putting this out there....I guess I'm just asking for whatever anybody has to write back, about the treatment, suggestions, about having relapses, anything...because I'm discouraged, and being off treatment altogether is scarey also.
Thank you, LizaJan Posts: 17 | From new york | Registered: Nov 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey hey LJ..
Sorry to hear you are feeling so down and out. I understand how that feels, really I do. Many other will also have experienced those feelings too unfortunately.
I am not a doctor, but may I suggest?
Rather than... and I say this because it looks like a relapse from what you've described....
Rather than go to different and tougher, more high dollar drugs....
Why not start off with the good old "stand-by", doxy?
Then, do the other two that made you so much better?
Just a thought. But I've found that works for me.... so it may be something to consider?
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