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Post by LymeEnigma on Aug 31, 2007 12:06:49 GMT -8
We've all had differing experiences in our treatment. I personally took zithromax combined with plaquenil for six months, finding a huge decrease in symptoms over the first few months, and then hitting a plateau. Life is still rough, but nowhere near the hell it was before treatment. I just went off the zithromax, hoping a combination of cat's claw and pau d'arco might keep my symptoms at the standstill they've been holding for the last two or three months. I'm not convinced that this disease is fully treatable, given its nature, and I personally believe that maintaining an extended remission is the most realistic goal, taking into consideration the autoimmune response some of us also experience, which does also need to be managed.
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Post by LymeEnigma on Sept 20, 2007 11:40:12 GMT -8
For those who have been treated successfully with long-term antibiotics: - How long, in total, was your treatment?
- What antibiotics/combinations did you use?
- Do you feel that you are "cured," or simply in remission?
- Do you have any post-Lyme sequelae (joint involvement, fibromyalgia, nerve damage)?
- If you have permanent nerve damage: did you at any time in your treatment take Flagyl or a similar med?
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Post by cobweb2 on Dec 3, 2007 6:31:38 GMT -8
Dx'd by rash; 28 days of doxy fully treated me. (0 votes, 0%)
Dx'd early; still sick after 28 days of doxy. (1 vote, 14.2%)
Dx'd late; antibiotics help, but haven't cured me. (4 votes, 57.1%)
Dx'd late; currently in remission on long-term abx (0 votes, 0%) Was on long-term abx; no long-term benefit. (1 vote, 14.2%)
Was on long-term abx;
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I couldn't answer any of these-but with a little bit of tweaking...
Dx'd early; by rash and blood work, still sick after 21 days Ceftin.
Dx'd again, 2 years later, antibiotics helped, don't know if I'm cured,
have been on longterm antibiotics-close to remission I hope.
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All that said- I just submitted my vote as "DX'd late, long term antibioitcs, not cured"
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Post by cobweb2 on Dec 3, 2007 7:00:11 GMT -8
I'm not sure what constitutes remission?
My cognitive skills seem better-most of the time. Haven't had what I would call a real cement head recently. Although my brain seems to shut down when I read Chaucer!
My anger seems to be under control.
The physical pain, mostly in right legs still fluctuates from 2-9 on scale of ten. (oops-some people have two left feet- I have two right legs-ha)
Total body ache comes and goes on less frequent basis.
What I have regained -is ability to catch myself when off balance. This is a biggie-because it is one of the primary reasons I was deemed "unsafe" in a classroom of handicapped kids.
If I lost my balance I would just go straight to the floor. Pulled down a wheelchair with me once- fortunately there was no kid in it.
So I would report better reflexes now. I can catch myself-either by foot action or automatic protective reflexes. Still take a dive once in a while-but not as often.
The other reasons for my being put out to pasture were -short term memory loss, sort of became a loose cannon emotionally, inability to follow through on paper work, fatigue, diagnoses of complex partial seizures.
I don't think I will ever return to the classroom-but that's okay- I look forward to working either at a bookstore or the library parttime-someday soon.
I believe and have experience significant relapse within treatment when in stressful situations-such as moving.
Cobby
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Post by LymeEnigma on Dec 4, 2007 8:56:18 GMT -8
Are you experiencing another relapse as a result of this recent move, Cobby? I hope not. I think you bring up a good question: what constitutes remission? I wish I knew.... Just the other day I was telling Haku that, if my symptoms stayed right where they were, I think I could live with that, and then comes yesterday....
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Post by cobweb2 on Jan 4, 2008 17:31:34 GMT -8
Of course I just noticed I never answered this.
Did I relapse during the move? Good question- I was still in treatment. I do think it was hard to maintain an emotional balance which depleted my ration of spoons .
But now that I did the right thing and have accomplished the total move, which included making sure my old apartment was empty and clean I feel a great relief .
Where I am now feels right-sort of-even though I don't know anyone here. But things take time.
I don't know if I relapsed, but I do feel more capable of recovery now.
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Post by LymeEnigma on Jan 5, 2008 9:46:56 GMT -8
I don't know if I relapsed, but I do feel more capable of recovery now. That sounds promising.
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Post by cobweb2 on Jan 5, 2008 10:34:57 GMT -8
I think I read somewhere Lady E that you said "if This is how far my recovery goes I'm good with it" total paraphrase i know, but I feel the same way- ready to stop everything but immune support and herbals and long baths- and humidifiers!
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Post by LymeEnigma on Jan 5, 2008 21:10:23 GMT -8
Sounds VERY promising.
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