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Doctor didn't renew abx prescription and I feel awful

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Posted 8/4/2023 10:03 PM (GMT 0)
I don't even know what my question is, I guess just curious if it's normal to feel pretty bad after stopping antibiotics for a bit.

My doctor didn't renew my refills for rifampin. She didn't want me to stop the abx but she's had a lot of stuff happen in her personal life so she just hasn't been as on top of things. I've been without it for 4 days now (I still am on clarithromycin and methylene blue).

First two days I actually felt pretty awesome, and thought maybe I should actually stop this for real. But yesterday I noticed some increased muscle twitching and neuropathy, and woke today with that being pretty bad. I've just had increasingly bad neck pain on my left side all day, flushing, going into reactions for hours after I eat (so my MCAS is flaring I guess) and just feel awful. Headband like headaches where there's pressure all around my head. I feel basically like how I did when I started.

Rifampin increases estrogen metabolism, so one thought I had is that perhaps my hormone levels are rising which always makes my MCAS flare. Which makes me sad because it means it could be the only reason the abx were helping. I thought the MCAS would get better with treatment. I don't know though. I thought I was treating bartonella. Starting to get really discouraged, I've been on abx for a year now and was really hoping to come off of them soon.
Posted 8/4/2023 10:55 PM (GMT 0)
Can you call her and ask her to renew your script?
Posted 8/5/2023 12:02 AM (GMT 0)
Yeah I'm figuring that out. I'm mostly just frustrated because if this is how bad I feel off abx, how will I get off them? I don't want to be on them much longer and had planned to stop because I was kind of plateuing anyway but now I feel completely hopeless
Posted 8/5/2023 11:03 AM (GMT 0)
treatment is typically not linear - there will be peaks and troughs along the way - and these illnesses are very up and down in their nature anyway - and during treatment or changes in treatment highs and lows are expected

it is not necessarily an indication of how it will be forever - so i would try not to read too much into a few days of extra symptoms

effective treatment is key though

i would say that coming off abx randomly in the middle of treatment is not a good indication of how you will feel after coming off abx after successful treatment.

a gap of a week or so is not going to set you back to baseline overall - many doctors do this as a matter of course for their patients - eg Dr J's protocols

so i would say just try to get through the rough patch - you are still taking 2 abx - so try not to read into it more than it is - and try to get back on full treatment as soon as you can
Posted 8/5/2023 12:35 PM (GMT 0)
Bartonella can become extremely aggressive and resistant, it is entirely possible you feel worse without an agent that was covering some of it.

I feel worse within a day or two without some kind of antimicrobials.

That being said, just get back on it.
Posted 8/5/2023 2:53 PM (GMT 0)
DerekF: You're taking doxy? Doxy/mino has an anti-inflammatory effect and suppresses the herx a bit. Sometimes I had to take a day or two off to let my immune system catch up on clearing out the dead bacteria, although this was more for lyme than bart. The bartonela die off happened a lot quicker.
Posted 8/5/2023 8:04 PM (GMT 0)
I couldn't tolerate mepron/zith so starting over again with doxy/nystatin and rebuilding from there. It never ends lol.
Posted 8/5/2023 8:06 PM (GMT 0)
I've also been noticing than detox agents are virtually worthless at this stage and that they just make me feel worse. Bart is so aggressive that it needs to be suppressed all the time now. It's insane.
Posted 8/5/2023 9:17 PM (GMT 0)
Thanks Garzie, your words were reassuring and I appreciate it. I'm on pretty low dose methylene blue, regular dose of clarithro, plus oregano but yeah hoping that it doesn't mean I'm fully back to baseline. I feel like I am, I feel almost exactly how I did to start. Problem is, I didn't really think I was in the middle of treatment. I was going to try and wean off antibiotics in a few months and stay on the methylene blue with herbs.

I did also realize I went to an osteopath the day prior, and he did some work around my hips that I haven't done before. Lots of lymph and toxin release from that, so it is possible that some of the worsening could be from that. Who knows at this point.

My white blood cell count is also low for the first time since starting abx last September. I'm so done with all this crap
Posted 8/6/2023 6:40 AM (GMT 0)
Updating - after I realized that maybe this worsening could have had something to do with my osteopath appointment releasing things from the neck and hips (because I have had a detox reaction after osteopathy before, just not nearly as strong, so it didn't occur to me) I took some glutathione around 3pm today to see if it would help, and about an hour later I started feeling better and have improved since. I have had a slightly elevated body temperature and increased sweating the last couple of days which I just put down to the summer heat. I was able to get back on rifampin last night (on a slightly lower dose than before because I didn't want to overload my body by jumping back into a full dose) but hadn't noticed anything improving until directly after taking the glutathione...so, here's hoping it was just a toxin issue?? I'll have to see if I feel better in the days to come, and maybe experiment with going off rifampin for just a few days a little down the line once this has settled to isolate the variables.

I haven't been taking glutathione as regularly because I thought I had a sulphur sensitivity, but glutathione does seem to help with herxes, so I don't know.
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