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Is my LLMD treating too aggressively?


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I'm second-guessing my LLMD on a public forum. Okay, so not the greatest move. But I'm desperate for feedback and really want to know if your kids were treated this aggressively.

 

For 6 months DS8 has been on amoxicillin, azithromycin, nystatin, and some bactrim (never got up to full dose of bactrim b/c it makes him agitated and "ragey"). For the last 3 months we have added in diflucan. He's made AMAZING and dramatic improvement from pretty much non-functional and should have been in the hospital, to the best we have EVER seen him function in his entire life. He's back to attending school full-time, caught up academically, made friends, etc. The difference is literally night and day. BUT, we are starting to see old behaviours creep back up. Things are not as good as they were a month ago. The 3 kids had sore throats and streppy breath over the holidays despite all being on multiple antibiotics for lyme. And DS8 got the scarlet fever rash AGAIN, despite being on all these meds. (!!!???) So I'm thinking strep is the reason for the backslide. But I have no idea what to do about that.

 

LLMD wants to add 3 more meds and I'm freaking out and second guessing this. If I follow instructions DS8 will be on amoxicillin, azithromycin, nystatin, diflucan, plaquenil, probenecid AND rifampin. My family doc thinks we've jumped completely off the deep end and is begging us not to do this and to seek a second opinion. I'm reading the lists of possible side effects on all these meds and going into a panic state. How much can 1 little body tolerate? But if we don't do this next step in treatment will he ever recover from lyme?

 

I'm freaking out here and need reassurance to continue, or confirmation that this is too much. Any thoughts? Did any of your kids take these particular meds or this many meds?

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That's basically the protocol I was on except flagyl (not refampin) and I don't know what probenecid is. I'll have to look that up. The plaquenil is great stuff for getting the abx down deep into the cells. But my LLMD's didn't prescribe it for my daughters. I don't know why so I don't know if there is an age/size issue?

 

My girls were on amoxicillin, azithromycin, nystatin, diflucan, flagyl. Is rifampin a cyst buster? Since we've started seeing a natural doc, I've stopped some of the meds for other supplements but that was after a full year on the LLMD meds.

 

Susan

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I'm second-guessing my LLMD on a public forum. Okay, so not the greatest move. But I'm desperate for feedback and really want to know if your kids were treated this aggressively.

 

For 6 months DS8 has been on amoxicillin, azithromycin, nystatin, and some bactrim (never got up to full dose of bactrim b/c it makes him agitated and "ragey"). For the last 3 months we have added in diflucan. He's made AMAZING and dramatic improvement from pretty much non-functional and should have been in the hospital, to the best we have EVER seen him function in his entire life. He's back to attending school full-time, caught up academically, made friends, etc. The difference is literally night and day. BUT, we are starting to see old behaviours creep back up. Things are not as good as they were a month ago. The 3 kids had sore throats and streppy breath over the holidays despite all being on multiple antibiotics for lyme. And DS8 got the scarlet fever rash AGAIN, despite being on all these meds. (!!!???) So I'm thinking strep is the reason for the backslide. But I have no idea what to do about that.

 

LLMD wants to add 3 more meds and I'm freaking out and second guessing this. If I follow instructions DS8 will be on amoxicillin, azithromycin, nystatin, diflucan, plaquenil, probenecid AND rifampin. My family doc thinks we've jumped completely off the deep end and is begging us not to do this and to seek a second opinion. I'm reading the lists of possible side effects on all these meds and going into a panic state. How much can 1 little body tolerate? But if we don't do this next step in treatment will he ever recover from lyme?

 

I'm freaking out here and need reassurance to continue, or confirmation that this is too much. Any thoughts? Did any of your kids take these particular meds or this many meds?

 

 

Unfortunately, I think the only way to really get down deep to the Lyme and co-infections is to throw the book at it. If you don't treat aggressiveily (think about what you said about his amazing recovery), you may actually do more harm. You're dealing with more than just infection here.....you're dealing with multiple infections and an autoimmune response.

 

Personally, I am currently taking azithromycin, Augmentin XR, diflucan, Rifampin, Tindimax and Ciprofloxacin (I don't know what the probenicid is. The plaquenil is a cyst buster, and I suspect the tindamax and plaquanil or in place of each other. DS16 is currently taking Cephalexin, Bactrim, Rifampin, Tindamax, and weekly shots of bicillin (for the recurrent strep.) If the weekly shots don't work, we are going to IV abx, because he & I also got massive infections over the winter...lasted 2 months (him with strep, and exposed to mycoP, and my mycoP reared it's ugly head again.)

 

So, yes, it's a lot of meds, and conventional docs don't get it, but I have found that we really don't have any choice, because we have to get this under control (we also see a holistic chiropractor, and get supplements, as well.) I don't think it's too aggressive.

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I can totally relate to your concerns. On one hand, I get how you need to be more aggressive than "conventional wisdom" and conventional medicine would suggest. After all, look at the progress you got with this path - way better than you were getting with "convention".

 

On the other hand, I also think sometimes you need to stop and do a gut check. I don't think any doctor or protocol should be followed blindly. I think you need to be comfortable with why you're using the treatments you are and if the rewards of each outweighs the risks.

I think it's very healthy to question and when called for, to look at options. Hopefully, your LLMD is open-minded and will take time to talk about it and not just push a particular agenda, dismissing your concerns.

 

I'd also ask if there are options - for example, if yeast is huge, can you do a shorter term nystatin/diflucan treatment and gradually switch over to a probiotic or natural option over time? If yeast is big, is it because metals are an issue? If so, then what's the treatment for that, because if you don't remove those, you will have a perpetual yeast battle. If the yeast is mostly due to the abx, then what about a pulsing strategy instead of a daily abx regimen? What's the best detox plan? I think it's good to ask these questions and know your options.

 

My personal experience is that when we hit a plateau or backslide, we've removed a layer and now have to find out what's causing the backslide. We seemed to always hit a wall every 2-4 months for various reasons. It was totally discouraging and made me feel like no matter how "out there" I went with treatments, it wasn't working. More than once I thought about just giving up and trying to accept that this was as good as it was going to get. But I'm too pig headed and I'd eventually be willing to dig deeper. We did eventually find what seems to be the "big" underlying issue for DS (KPU) and now everything else has gotten much easier to work on. For DD, we are still in a trial and error phase. Her answers will be different.

 

But I think if you can get comfortable with why you're using the things you are, then stay the course. If you think you need to back off of some things or find alternatives, then listen to your gut. It could be that there's a middle ground or small change in focus that's needed. Listen to your concerns and address them. That inner voice is so important.

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I don't think it sounds too aggressive as long as you are supporting the body in other ways to keep the toxicity down. Milk Thistle for liver support; probiotics for gut support. I'm sure others can chime in on other helpful supplements.

 

My son takes quite a cocktail each day. This week a typical day's meds include Minocycline, Valtrex (anti-viral), Rifampin, Diflucan, Nystatin, Mycelex (for yeast in mouth), Low-Dose Naltrexone (for immune boost), Paxil (for anxiety). It seems like a lot to me, but he has been on this protocol for many months and has shown no signs of overload. Our LLMD likes to hit the infections from all angles.

 

Hope this helps.

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Thanks for the reassurance everyone! We have an integrative MD/ND for our LLMD. The kids take even more supplements than meds, so they are well supported in terms of detox, detox and more detox, nutritional support, anti-oxidants, and immune boosting.

 

I guess right now I'm just despairing over the feeling of being stuck between a rock and a hard place. I hate the treatment protocol! But doing nothing has never been an option and we've been down so many treatment paths and spent 4 of the last 5 years going to one doctor after another - none of which had any clue. Now we are finally seeing healing. So I guess when it comes down to it I really don't have another choice. I know what I have to do, I just don't want to do it. Okay, time to stop whining and get on with it.

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