I have been in treatment 3.5 years w/a quite severe and very painful case. I am worn out from all the medications, really, this is getting to the point enough is enough.
I have yet to find a combo that makes me feel better to the point of being near symptom-free. Anytime I switch abx, the herxing goes on just as bad as it was when I started.
I have noticed when I cut down or nearly stop abx, many symptoms subside. I wonder if stopping altogether (which I have yet to do) would make me feel better to a liveable point.
I have a lyme-friend who stopped treatment still symptomatic and felt much better, but it took a few months she said for her body to adjust and detox. Now she is very active, although she is not symptom-free she said she can live w/what remains.
Also, my sister and her husband, who had a severe case of Lyme abandon treatment over a year ago because he hated herxing and felt awful, but they eat right, supplement and they are doing great compared to me.
I am beginning to think if I continue on abx I might never feel better ON them.
I know we are all told stay on them until symptom free + 2 months, I preach it myself. But I often wonder if LD is kept active by abx and if left alone (as family and my friend have done) it may go dormant.
What do ya think? Any opinions?
Posted by MariaA (Member # 9128) on :
I've been noticing that when I take an antibiotic break, I suddenly see improvements (I tend to relapse in about a week or two and I have a good idea of why that is at this point).
I think the improvements are seen then because that's when I see my 'baseline' functioning. The rest of the time there's some kind of immune activation going on that causes my symptoms. Bear in mind that these symptoms that I have while on my antibiotics are 'bearable' levels of brainfog-type symptoms and joint pain, which are relatively minor compared with my symptoms when I'm having a full-blown relapse and much more is wrong.
Posted by map1131 (Member # 2022) on :
IMO, you can stop the abx and see improvement. But you can't ignore the bad guys because they will conquer and divide. They like to multiply.
There are many treatment protocols you can turn to and still attack/kill the bacteria. Abx certainly isn't the cure all fix all that some believe it is.
Don't be afraid to go into another direction.
Pam
Posted by feelfit (Member # 12770) on :
Lymebytes,
Was just speaking about this last night with someone very knowledgable......
For myself, I have taken abx breaks and do not feel any differently....just as bad off as on....I so far have been a non-responder...
Sorry to get off track...back to my converstation! Have you considered the approach that Dr. B and Pam Weintraub used?
going off of all tx until you feel like death? and then bomb it again? Repeat 3 times?
Sometimes when we are not seeing any response..we have to again think outside of the box!
Whatever you decide, good luck friend...I know that we've been rowing the same boat for years!
big Hug, Feelfit
Posted by sutherngrl (Member # 16270) on :
Feelfit you said you're a "non-responder". Sometimes thats exactly how I feel. I am a little better than when I started 21 months ago; but if things are still improving, its so slow that I cannot measure it.
I have taken antibiotic breaks and I only feel better briefly if at all. But it almost seems like any improvement I get, comes shortly after starting back on antibiotics, about three months later, then it all levels off again.
This is making me think......Maybe the on/off/repeat, is the way to get rid of this thing.
Hard to know what works! Its always different for everyone.
Posted by canefan17 (Member # 22149) on :
I continue to treat when I take abx breaks.
Garlic, humaworm, etc
I will constantly have something in my body fighting Lyme.
You can guarantee that lol
Posted by sutherngrl (Member # 16270) on :
I agree with Canefan17. Always be doing something to better your health.
Posted by lymebytes (Member # 11830) on :
Thanks for input, so much appreciated.
See, I never have taken a TOTAL abx break, I have gone down to small doses and it seems I feel better, then eventually after about 2 weeks, it seems I feel about the same as I did on higher doses. I wonder if I went off completely if/when the crash may occur.
What a mess, high, low even natural stuff like Samento is hard. I hear ya Feelfit, I had to laugh, yes we have been rowing the same boat for years. I want off this boat already!
If really significant improvement was seen on any abx or anything natural - I'd be stunned!
My LLMd said, "We just have to keep trying different combo's 'til we hit the right one for you." That could take forever.
Thanks guys/girls, really like to hear comments on this.
Posted by beths (Member # 18864) on :
How about pulsing? I take abx 10 days on, 3 weeks off..in between I detox, take some herbs and fight yeast. I feel pretty good most of the time.
I must warn you I felt pretty bad the first few days off..then better and better. I think when we go off, our bodies are flooded with toxins.
Posted by Dawn in VA (Member # 9693) on :
Not for me personally. I only take long-ish holidays (was actually in remission for 8 months w/out ABX), but I start popping those pills whenever I relapse or symptoms are on the rise.
I have noticed bad things happen when I do not treat while being symptomatic.
Posted by lymebytes (Member # 11830) on :
Both interesting posts and food for thought. Thanks for your responses.