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For Those with Bartonella


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Our kiddie psych will treat the symptoms the infections/treatments cause and the LLMD treats the TBI. They are on board with each other. We have prn medicine now when the agitation can not be managed.(Zyprexa Zydis) This has been a lifesaver. Evan is just too darn big & strong. Gabapentin is not an unusual drug to see used in lyme patients. Namenda has been a good addition to help with the rigid/inflexible/stuck thinking (autistic traits). He takes these daily. We have had a very good relationship with our psychiatrist--would be in a world of hurt without him. Some people on the forum have had yucky results/experience with psychiatrists; some of us wouldn't know where we would be w/o ours. It's about like everything else. Dawn

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When I posted the same question a month or so ago, several people posted that they were on rifampin for bartonella. The Lyme book I have also mostly recommends rifampin. You have to be careful and check liver functions with that, though. Most people say it takes 4 months of treatment at a minimum to clear it.

Our kiddie psych will treat the symptoms the infections/treatments cause and the LLMD treats the TBI. They are on board with each other. We have prn medicine now when the agitation can not be managed.(Zyprexa Zydis) This has been a lifesaver. Evan is just too darn big & strong. Gabapentin is not an unusual drug to see used in lyme patients. Namenda has been a good addition to help with the rigid/inflexible/stuck thinking (autistic traits). He takes these daily. We have had a very good relationship with our psychiatrist--would be in a world of hurt without him. Some people on the forum have had yucky results/experience with psychiatrists; some of us wouldn't know where we would be w/o ours. It's about like everything else. Dawn

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DD has been on Rifampin/Biaxin for Bartonella for 10 weeks but we have to switch back to her previous combo of abx today. Her liver function has been elevating a little bit each month. I just hope it was enough to make a difference. Yes, we check liver and other levels every month. We have tried MANY, MANY psych meds over the years for DD's rages, tics, and OCD but nothing ever helped (Risperdal helped rages for a while but then stopped). Most made her worse. We have since sworn off psyche meds FOREVER. For us, peeling off the layers one at a time and getting to the underlying infections has been key!

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You know, it may be coincidence, but when we added milk thistle for liver support, one of DS's liver functions went from just over the borderline of high to bottom of normal in a very quick time period. And that was at the same time as an increase in abx.

 

DD has been on Rifampin/Biaxin for Bartonella for 10 weeks but we have to switch back to her previous combo of abx today. Her liver function has been elevating a little bit each month. I just hope it was enough to make a difference. Yes, we check liver and other levels every month. We have tried MANY, MANY psych meds over the years for DD's rages, tics, and OCD but nothing ever helped (Risperdal helped rages for a while but then stopped). Most made her worse. We have since sworn off psyche meds FOREVER. For us, peeling off the layers one at a time and getting to the underlying infections has been key!

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Like NancyD, we have also tried various psych meds for DS7. We felt we had no choice because he was slamming his head on the wall, breaking windows, threatening to kill himself, and was wildly aggressive, to the point that our home was no longer a safe place. So with broken hearts we agreed to various trials of meds. The only one that helped was risperdal, but that quit working after a couple of weeks. We increased as per the docs instructions, but he actually got worse, and then he ended up having severe chest pains, so we quit and they went away. No other psych med has helped at all. Low dose antibiotics were amazing at first, but we went to high dose and it was a disaster. Now he`s back on low-dose and it`s not helping much, but it must be doing something because every time we try to quit he goes berserk. So we`re in limbo...waiting to see the LLMD and hoping for a diagnosis.

 

DS goes to a juvenile mood disorders clinic at a major teaching hospital and sees the head psychiatrist. The pdoc was not open to my thoughts on PANDAS, but I provided him with plenty of information. At our last appointment he said `There is a disorder called PANDA, but that does not explain everything that`s going on here.` Well, duh, I`ve been saying that for a few months now. But I was amazed that he is now acknowledging PANDAS - where before he just rolled his eyes. Now I`m saying lyme & bart, and he`s back to rolling his eyes. So we`ve agreed to take a break and meet again in 3 months time, after we`ve been to see the LLMD. Only 6 more sleeps until we FINALLy get to see the LLMD!!!!

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Our LLMD has been treating my ds11 for Bartonella since last September. He's doing much better, but we are not there yet. I'm going to ask for KPU testing at our next appointment, because I think he has hit a plateau and has some symptoms of KPU.

 

We haven't done any psych drugs. We saw a psychiatrist for a while and she was willing to prescribe abx for PANDAS, but she didn't really know how to test or look for infections, or what abx treat which infections, so we are working with an LLMD now (since Sept. '10).

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Yes, love Milk Thistle! But unfortunately you cannot take Milk Thistle with Rifampin. The first thing I did this morning after taking DD off Rifampin was put her back on Milk Thistle.

 

You know, it may be coincidence, but when we added milk thistle for liver support, one of DS's liver functions went from just over the borderline of high to bottom of normal in a very quick time period. And that was at the same time as an increase in abx.

 

DD has been on Rifampin/Biaxin for Bartonella for 10 weeks but we have to switch back to her previous combo of abx today. Her liver function has been elevating a little bit each month. I just hope it was enough to make a difference. Yes, we check liver and other levels every month. We have tried MANY, MANY psych meds over the years for DD's rages, tics, and OCD but nothing ever helped (Risperdal helped rages for a while but then stopped). Most made her worse. We have since sworn off psyche meds FOREVER. For us, peeling off the layers one at a time and getting to the underlying infections has been key!

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Yes, love Milk Thistle! But unfortunately you cannot take Milk Thistle with Rifampin. The first thing I did this morning after taking DD off Rifampin was put her back on Milk Thistle.

 

You know, it may be coincidence, but when we added milk thistle for liver support, one of DS's liver functions went from just over the borderline of high to bottom of normal in a very quick time period. And that was at the same time as an increase in abx.

 

DD has been on Rifampin/Biaxin for Bartonella for 10 weeks but we have to switch back to her previous combo of abx today. Her liver function has been elevating a little bit each month. I just hope it was enough to make a difference. Yes, we check liver and other levels every month. We have tried MANY, MANY psych meds over the years for DD's rages, tics, and OCD but nothing ever helped (Risperdal helped rages for a while but then stopped). Most made her worse. We have since sworn off psyche meds FOREVER. For us, peeling off the layers one at a time and getting to the underlying infections has been key!

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What is the interaction between rifampin and milk thistle? If milk thistle is no good, is there a good liver-protecting substitute?

 

Thanks.

 

Yes, love Milk Thistle! But unfortunately you cannot take Milk Thistle with Rifampin. The first thing I did this morning after taking DD off Rifampin was put her back on Milk Thistle.

 

You know, it may be coincidence, but when we added milk thistle for liver support, one of DS's liver functions went from just over the borderline of high to bottom of normal in a very quick time period. And that was at the same time as an increase in abx.

 

DD has been on Rifampin/Biaxin for Bartonella for 10 weeks but we have to switch back to her previous combo of abx today. Her liver function has been elevating a little bit each month. I just hope it was enough to make a difference. Yes, we check liver and other levels every month. We have tried MANY, MANY psych meds over the years for DD's rages, tics, and OCD but nothing ever helped (Risperdal helped rages for a while but then stopped). Most made her worse. We have since sworn off psyche meds FOREVER. For us, peeling off the layers one at a time and getting to the underlying infections has been key!

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From what I understand (and someone else may be able to explain it better), Rifampin is a protease inhibitor and is processed by the CYP3A4 liver enzyme. If milk thistle is taken by someone using protease inhibitors or non-nukes, it has the potential to raise levels of these drugs, causing unpleasant or even dangerous side effects.

 

As an alternative we were using curcumin. There may be other alternatives though. Perhaps others can comment.

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Also, as another thought, you may want to check Glutathione levels. Many of our children have very low levels. 

 

Glutathione is a very important antioxidant that plays a central role in protecting the body's cells from free radical damage. It is composed of the amino acids cysteine, glutamine, and glycine and is concentrated in the liver, although it carries out its work throughout the body. Glutathione is involved in protecting cells from environmental toxins, drugs, and alcohol as well as toxins produced by the body itself as a result of normal metabolism. The depletion of Glutathione leads to cell death. 

 

One of the most beneficial treatments my daughter had several years ago was monthly Glutathione IVs over a two-year period. Her Glutathione levels were very low and she had severe colitis. She was on a highly restricted diet and was sensitive to just about everything. The diet was merely a bandaid. The monthly IVs healed her gut completely and she can now eat most everything except for dyes and additives. 

 

I don't think Glutathione supplements help much -- the IVs are by far the most potent. Next, I believe, would be the transdermal Glutathione. Some kids do okay with the transdermal. My daughter never liked using it. 

 

Also, NAC is a precursor to Glutathione. It helps to stimulate the synthesis of Glutathione and can detoxify the liver. My DD takes high levels of NAC. 

 

From what I understand (and someone else may be able to explain it better), Rifampin is a protease inhibitor and is processed by the CYP3A4 liver enzyme. If milk thistle is taken by someone using protease inhibitors or non-nukes, it has the potential to raise levels of these drugs, causing unpleasant or even dangerous side effects.

 

As an alternative we were using curcumin. There may be other alternatives though. Perhaps others can comment.

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