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Been getting worse for a month now, while ON antibiotics

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Posted 6/15/2012 4:01 AM (GMT 0)
So about 2 months ago, I hit a plateau and quit getting better. My LLND wanted to switch medications, but she a) also wanted to try to keep working with an MD who had been semi-cooperative in prescribing for me and b) try to solve some stomach issues. I tried going off antibiotics, got WAY worse right away, and had to go back on after a very short time off. And then my ND wanted me to do some other tests on my stomach, and not change anything until they came back.

So it has been a month since I got back on antibiotics after my very short time off, and I have just been getting slowly worse. My ND thinks I have untreated Babesia, and also thinks my Bartonella is back, and I still haven't switched my treatment much to get at them (except for adding Wormwood), because we're waiting for test results.

It is just getting a little nerve racking. I know that un-treated coinfections can make treatment slow, or plateau, but this is beyond that now. I'm almost back to where I was when I first got diagnosed- feeling like I'm getting plantar fascitis/really sore feet, getting carpal tunnel and other wrist problems, bad brain fog, super sore knees and hips etc. So it makes me scared that I'm not ever going to get better. I was so close to being 100% last summer, and now I feel like I might never even get back to being able to any sort of real activity. Please, someone tell me they have backslid while still on antibiotics, and then gone on to see improvement?
Posted 6/16/2012 5:12 AM (GMT 0)
"Please, someone tell me they have backslid while still on antibiotics, and then gone on to see improvement?"

I have!!!

Two months ago I was bedbound, or else crawling on my hands and knees, walking ridiculously slowly and resting between every couple steps, barely able to speak, sobbing in pain, etc. Now I'm SO MUCH BETTER - exercising every day, running errands, cleaning the house, just constantly moving around, much better energy, much better ability to think, etc. To be honest I wasn't sure if I was ever going to get better in the shape I was in - I know how scary it is!

Have you discussed the possibility of bartonella being back with your doctor? Sometimes I think we discredit our own instincts too much. And if it's any consolation, there's a pretty good chance that this whole time I've had an undiagnosed/untreated (not specifically, anyway) bartonella co-infection, and I have gotten better with that going on. Hopefully that'll help ease your nerves a bit?
Posted 6/16/2012 8:46 PM (GMT 0)
Thank you borderlyme! I am so glad you're better, but what you describe is exactly how I am feeling- I get worried I will never get better! It is so easy to start worrying that the antibiotics aren't working just because what I am currently doing isn't working.

Yes- I discused the possibility of bartonella with my ND. She thinks I have untreated babesia, and she thinks the bartonella has come back.

It is just scary to being back to almost where I was two years ago (that was when I first got diagnosed), and having brain fog and aches and pains in ways I haven't had for a long time. The first 1.5 years I was on antibiotics, I responded really well. I would get worse when I started a new antibiotic, but once I'd got over the 6 month mark, if you took an average across 2-4 months, I was pretty consistently improving. The last 6 months, I improved a bit, and then just stopped and started going downhill!

So thank you again! You have no idea how much better this makes me feel!
Posted 6/19/2012 2:15 PM (GMT 0)
Hi Zuesy,
It's well known that Lyme treatments can stall out if the co-infections aren't being addressed. Also, there are so many different strains of each of these infections that tests still can't detect that testing the blood is still not a good option. Even the CDC tells us that diagnosis should be made by symptoms (clinically). Maybe your doc's don't realize these two things? You could print out a copy of Burrascano's "Advanced Topics in Lyme Disease" where these topics are discussed and ask them to read it?

Whenever someone in treatment that was improving stalls out, there's something that's not being addressed - but there are so many different things that it could be! Things like not being able to detox, infections that need to be addressed, abx (or herbs) that need to be changed, a sudden increase in the stress levels, or even a cold that isn't hardly noticeable on top of the persons' Lyme and co-infection symptoms, etc, etc.
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