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Where do we go from here?


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It's now been 1 year since dd (just turned 9) has been treated for confirmed myco P and suspected Bart, (we haven't tested positive for it but is symptomatic).

 

So far, Tried just Zith, Zith & Augmentin, Zith & Bactrim, and finally Zith & Bactrim & Minocycline combo. It was the addition of the Mino that finally brought results for her. She's been on this combo since June.

 

Overall great improvement. Minimal behaviors with the exception of recent flare from a cold virus going through our house, but doing well. However, she seems a bit "stuck". Hovering quite a stretch away from baseline, she has "new ocd", and still has underlying anxiety issues and some odd behaviors now and then.

 

What now? I want to take her off some of the abx, but I'm afraid to at the same time. She's still not close enough yet, but a full year on heavy abx is starting to weigh on my mind too.

 

Wean her off? Try something new? I don't know what to do. Waiting for blood work results and will take it from there I guess, but I'm just wondering if I'm overlooking anything. We still have possible methylation issues to investigate (she has 1 MTHFR mutation) but honestly, every time I think about all of that I become overwhelmed-- it just seems so complicated, :(

Edited by beerae22
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why are you beginning to think that she should go off abx?

we had the same idea with both kids last spring after a year and a half. we learned quickly, it was a bad idea. our conservative mgh drs have no problem with our kids being on abx for few more years.

long term abx in small doses, apparently, are not considered a big deal in medical community -- as long as you give probiotics on daily basis. long term abx has been a standard procedure for rheumatic fever for decades now.

in your place, i would make sure to have a sound strategy before stopping abx.

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I would consider adding something for babesia to the mix. DD was totally asymptomatic for it and tested negative for both duncani and microti, but I saw total resolution of her lingering bart symptoms when I added the combo tincture CSA (which Buhner uses for babesia/protozon infections). This was after 2 years of combo abx for bart and another 8 months of bart herbs, with improvement lingering at 80%.

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We've been talking (her specialist and I) about transitioning her from abx to herbals. Very slowly. I am nervous to try this, because I don't want to learn the hard way, but even after a full year of abx I'm still not completely comfortable with it. (Of course, I'm much more comfortable with abx than I am with her raging and starving though). :( I'm feeling like she's stuck, and I don't know which way to turn right now. Definately not interested in going backward-- weaning probably isn't the way to go, but we're not seeing any progress lately either.

 

What is CSA? I'm fairly new to herbals.

 

Waiting to hear what her myco p and c4a levels are going to be, but just got a call re: WBC which has again dipped down low to 4.3 -- was back in range at 6.6 in September, which was actually the time span that she was doing the "best" since this started. Sigh. Any thoughts on that?

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i understand the impulse completely. if you do transition her, I would make sure to have a way of getting her back on abx just in case you need to do that. why not try herbals and abx at the same time?

abx have not only profliactic but also anti-inflammatory effects and help regulate, if I understand this one, glutamate.

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I don't know that she's ever been tested for yeast. What is the yeast test called?

 

We will definitely wean slowly while introducing herbs at the same time. Before this flare she was doing really great, and that's when the "weaning talk" began, but she's taking longer to recover from this one than I expected :( probably going to have to wait to do anything now anyway.

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I don't know that she's ever been tested for yeast. What is the yeast test called?

 

We will definitely wean slowly while introducing herbs at the same time. Before this flare she was doing really great, and that's when the "weaning talk" began, but she's taking longer to recover from this one than I expected :( probably going to have to wait to do anything now anyway.

 

When we weaned off abx, I made sure kiddo was at full doses of herbs first, and stable. Then began to wean her off abx. If you do both at the same time, you will not know what is herx reaction vs lowering abx reaction, and you could actually have both going on at the same time.

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