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Super sensitive to Medications and Supps.


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Psychiatrist said since she flips and gets worse with most medication and sups. that we should just keep her at low doses of things. She is currently on a very low dose of the Bactrim and Mino. Seems to be helping a bit with keeping her asleep (after she is ABLE to sleep with a ll of her horrible rituals.) Has anyone ever just done low course of abx. because of this reason? Our lyme specialist agrees with psychiatrist, but he would LOVE to see her full dose. He said a little is better than none at all thought. Thoughts?

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Psychiatrist said since she flips and gets worse with most medication and sups. that we should just keep her at low doses of things. She is currently on a very low dose of the Bactrim and Mino. Seems to be helping a bit with keeping her asleep (after she is ABLE to sleep with a ll of her horrible rituals.) Has anyone ever just done low course of abx. because of this reason? Our lyme specialist agrees with psychiatrist, but he would LOVE to see her full dose. He said a little is better than none at all thought. Thoughts?

 

DS8 reacted very badly to many medications and supplements. He did well on low dose (prophylactic) amoxcillin so we kept him on that for almost a year. But when we tried to stop it, he was right back where we started. It was just a bandaid, but not making the problem go away. He reacted badly to Omega-3, probiotics, multi vitamins. He raged non stop on Augmentin. He raged on Biaxin. He gets really ODD and aggressive on Bactrim.

 

When we started working with our LLMD she put him on high dose amoxicillin, since it was tolerated. Then we slowly added in other abx, and a pile of supplements (including Omega 3 and probiotics). I was scared, but amazingly it is working. I think it is the combination, and the order things were added that has helped him. We still can't stop abx without going back to square one, so clearly he is not healed yet. But he has improved dramatically and our LLMD says minimum 12 months and probably longer. We're only at 6 months.

 

Have your docs tried other abx? One of the possible side effects of Bactrim is psych/mood problems in children. One of my kids can tolerate it, the other 2 can't. There are other options. We've had to switch abx several times, and it continues to be a bit of trial and error. I don't know anything about mino, but I'm just wondering if a different antibiotic would be tolerated better at a higher dose?

 

Edit - I should also add that our LLMD started everything very low dose and has us wean up slowly. We go ahead AS TOLERATED, and back off and make changes when things are not tolerated.

Edited by momcap
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Are you doing anything for detox?

As you give the antibiotics and it kills bacteria and releases neurotoxins, the bad reactions or 'herx'

can be helped with detox.

Things like making sure the bowels are moving, milk thistle, ala, glutathione for liver support,

Epsom salt baths or cream rubbed in, exercise or something to produce sweat, lots of water drinking, can add lemon,

there are some herbal and homeopathic remedies to help the body drain,

etc.

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I forgot binders to mop up the junk- given 2 hours away from antibiotics and supplements-

like charcoal, bentonite capsules, etc.

And I'm sure you are giving a high quality, higher dose probiotic, too, 2 hours from antibiotics.

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Psychiatrist said since she flips and gets worse with most medication and sups. that we should just keep her at low doses of things. She is currently on a very low dose of the Bactrim and Mino. Seems to be helping a bit with keeping her asleep (after she is ABLE to sleep with a ll of her horrible rituals.) Has anyone ever just done low course of abx. because of this reason? Our lyme specialist agrees with psychiatrist, but he would LOVE to see her full dose. He said a little is better than none at all thought. Thoughts?

 

DS8 reacted very badly to many medications and supplements. He did well on low dose (prophylactic) amoxcillin so we kept him on that for almost a year. But when we tried to stop it, he was right back where we started. It was just a bandaid, but not making the problem go away. He reacted badly to Omega-3, probiotics, multi vitamins. He raged non stop on Augmentin. He raged on Biaxin. He gets really ODD and aggressive on Bactrim.

 

When we started working with our LLMD she put him on high dose amoxicillin, since it was tolerated. Then we slowly added in other abx, and a pile of supplements (including Omega 3 and probiotics). I was scared, but amazingly it is working. I think it is the combination, and the order things were added that has helped him. We still can't stop abx without going back to square one, so clearly he is not healed yet. But he has improved dramatically and our LLMD says minimum 12 months and probably longer. We're only at 6 months.

 

Have your docs tried other abx? One of the possible side effects of Bactrim is psych/mood problems in children. One of my kids can tolerate it, the other 2 can't. There are other options. We've had to switch abx several times, and it continues to be a bit of trial and error. I don't know anything about mino, but I'm just wondering if a different antibiotic would be tolerated better at a higher dose?

 

Edit - I should also add that our LLMD started everything very low dose and has us wean up slowly. We go ahead AS TOLERATED, and back off and make changes when things are not tolerated.

 

 

WHAT DOES THAT INDICATE WHEN THEY GO BACK TO SQUARE ONE? MY DS6 IS THE SAME. HE HAS BEEN ON daily dose of Azithro and if we try to lower he regresses to square one. My older son we have been able to reduce dosage no regression. Being antibiotic dependent worries me we have created new problems. Although I will say I would prefer my son on antibiotics than on antipsychotics. I am beginning to wonder about what is really plaguing my ds6.

Edited by hugs2day
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WHAT DOES THAT INDICATE WHEN THEY GO BACK TO SQUARE ONE? MY DS6 IS THE SAME. HE HAS BEEN ON daily dose of Azithro and if we try to lower he regresses to square one. My older son we have been able to reduce dosage no regression. Being antibiotic dependent worries me we have created new problems. Although I will say I would prefer my son on antibiotics than on antipsychotics. I am beginning to wonder about what is really plaguing my ds6.

 

I think that means the treatment you are using has not brought the bacterial load down to a point where the immune system (whatever state it's in) can handle it alone. When we first started (before LLMD) symptoms returned 2 days after finishing 2 months Abx (penicillin v). After treating bartonella/lyme specifically for 4 months with combination Abx (along with immune boosters like transfer factor and methylfolate/b12), and then discontinued bart Abx (but continued bart herbals),the symptoms returned after 3 months. I feel like we are getting there, but will need to bring the load down further before attempting to stop again.

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WHAT DOES THAT INDICATE WHEN THEY GO BACK TO SQUARE ONE? MY DS6 IS THE SAME. HE HAS BEEN ON daily dose of Azithro and if we try to lower he regresses to square one. My older son we have been able to reduce dosage no regression. Being antibiotic dependent worries me we have created new problems. Although I will say I would prefer my son on antibiotics than on antipsychotics. I am beginning to wonder about what is really plaguing my ds6.

 

Hugs - I have the exact same questions and fears. I don't know the answers. We even tried antipsychotics and they didn't help. DS was on risperidone and then seroquel and was no better at all - perhaps even worse. DS on antibiotics is almost completely well, but regresses immediately when the meds stop. I don't think it makes sense to be lyme driving symptoms that quickly. He has tested positive for lyme (WB IgM & IgG), but I think it may be more of an underlying infection right now, with the majority of symptoms being driven by something else. We are assuming bartonella, or some other co-infection. I would REALLY like to know exactly what is plaguing him. We spent 4.5 years going to every type of doctor under the sun. So I feel like we've explored every possible avenue available to us, and now we have to go with what is working because nothing else has worked. It's a rock and a hard place, for sure. I don't discount the dangers of long term antibiotic use. I tried to keep everything very natural and wouldn't even take a tylenol before all this happened. I even had my babies at home with a midwife so I wouldn't be tempted to take pain meds when I was in labour. Now I practically have my own pharmacy in my kitchen cupboard. Sheesh! But I won't stop looking for answers, even while we are doing abx.

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