blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Me too...got improvement quickly once starting back on meds. Within 2 weeks, many bart symptoms were gone.
I took bactrim with rifampin and I was 100%. For three months I lived like I had never been sick. I thought I was done with all this. But, had to stop due to ankle pain and it all came back.
I really think many of us are dealing with the bartonella like organism. I just hope someone finds a treatment for it soon.
BTW- has anyone here been tested and know what strain of bart you supposidly have? I heard that BLO cross reacts with some strains.
Posts: 1104 | From N.California | Registered: Jan 2008
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I do think 2-3 months symptom free before stopping abx tx IMO.
quote:
I'd think at least that long, too. Good to hear it's working for you!
(If many of us are dealing with BLO, that complicates things, and I don't know what that means for tx.)
Posts: 797 | From New York | Registered: Feb 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i wasn't able to read all
i am also dealing with bart relapse
and resistance
it is much worse this time than at first
llmd switched me tobuhner herbs cuz rifampin wasn't working second ime
my lumps aare so bad i feel lik i am lying on marbles and golf balls
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
stacyb-
For some reason I had ankle pain and stiffness while taking bactrim. Not sure why, neither is my LLMD. It got progressively worse until I almost could not walk so I stopped it.
All better now since I've been on my new treatment so not to osure if it was bugs or side effects.
Posts: 1104 | From N.California | Registered: Jan 2008
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Ok gotcha on the Bactrim. Almost sounds like the issues that can happen on the Floroquins. I am allergic to Bactrim and even tried it for a challenge test at the allergist to see if I could use that med again. No luck, as a few hours later I got violently ill !!!! Either that or it was the biggest herxed I have ever had from any abx. I have taken a lot and been very aggressive with my tx so that was a shocker. I did get all red (felt like extreme sunburn) with in 3 days of taking it so that one is out for me.
Ok sorry to get off the topic
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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posted
I guess I relapse but I truly believe I never have gotten rid of my Bart. I'm going through a *relapse* right now. I changed LLMDs (seeing Dr. H in NY) and he has me on Cowden, chelation for mercury/lead and low dose naltrexone. Like CD57's case, he thinks my immune system is compromised by 6+ years of heavy abx treatment so he has backed off an intense abx regiment for now He did prescribe me Doxy.
I just went three weeks off abx - I often test myself to see how long I can go (45 days was my high). Yesterday I felt I had to reach into the cabinet for the Doxy. The symptoms started to build to a crescendo:
* Head and face tingling (major creepy crawlies) and head pressure * Waves of light anxiety starting to build * Feelings of being detached * Insomnia
Generally it will take me a few days to a week back on abx to get back to 75% (light head and facial tingling). I never seem to be able to rid myself of these symptoms. I've said this before, if I knew that the light head and face tingling wouldn't get worse, I could easily live with those symptoms. It's just that I know off abx for any length of time will not be a good option. I half wanted to just let it go and see just how bad it would get but the thought of dealing with major tick-borne illness related panic and anxiety scares me off.
So abx keep me at 75%- 80% but I never improve beyond that. I have herxed and herxed bad but I never come out the other side feeling better. In another thread someone mentioned a similar occurrence and it got me thinking that my body isn't clearing the die off properly and it just adds to the mess.
Good luck everyone and if anyone sees anything in what I described that could be helpful let me know.
Chris
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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