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HopeinHIM

6 year old went bonkers as soon as we started Zith

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Hi,

My little niece is struggling. Dr T says her Cox socci is very high so he started her on Valtrex. It calmed her 60%. She has become progressively more fragile since the PANS diagnoses 6 months ago. Anxiety attacks and emotional deregulation. Cortisol levels are very high as well. Lyme's Doc G in PA doesn't think its Lyme's related based on her history and Igenx test and so she is only been on Valtrex. Yes!! She is Somewhat calmer on but how long can she stay on this stuff?? AND she is NOT completelt stable yet!! Dr T started her on Zith (at mom's request bc my son has Lymes/PANS) on Sunday and she almost immediately went extremely anxious. Could not calm herself down. This reaction was on half dose too. Was trying to stay slow and low but wow she responded. Dr T says just remove it. My question: What does this mean??? It must be indicative of something here. Does this point to her PANS being Not just Viral cause. Too soon to be a herx reaction. Correct? Parents removed her from Zith and she is back to 70% OK but still so fragile. Mom cant leave her side most of day and has to keep busy all the time with her. This is very difficult for the family . I am afraid this is beginning of PANS and want to find the trigger. Thank you for any advice.

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My son had a terrifying herx when he started Azith (in addition to Augmentin that he was already on) at age 4. We hung on and stuck with it and after a few weeks things evened out. The combo turned out to be a wonderful part of his treatment in getting him to recovery. Interestingly, a couple of specialists have told me that when a herx is very evident, it often indicate Lyme or another tick born infection. I have never fully accepted the Lyme DX, as my son was classic Strep:PANDAS...but whatever was going on, that herx was the start of his recovery.

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It definitely seems like a herx response.

 

Is it possible that your niece has gestational Lyme?

 

I only had a few minor symptoms of Lyme prior to our first son's birth.... The reason I mention it, children with gestational Lyme often their bodies don't recognize the bacteria as foreign and therefore don't make antibodies. These children can be serologically negative when antibodies are tested even via Igenex. This was true for two of our children and we went to great length to do alternative testing to confirm Lyme. The Dot Blot test via Igenex looks for the antigen of Lyme (like DNA) in the urine verses antibodies and this is how we confirmed Lyme for 2 of our children. The healthiest of all our children actually makes antibodies for Lyme and was IND for Lyme, Positive for Bartonella and Positive for Babesia via antibody testing.

 

Did they test for co-infection testing when testing for Lyme? Like our younger son, sometimes co-infections will be positive while Lyme results are negative or IND. I would keep looking for infection. All our children had high titers for 3 different stains of Coxsackies and were only helped mildly by anti-virals. Thankfully, their viral titers are now normal. You can give anti-virals ongoing. It took about 3 years for viral titers to normalize.

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It definitely seems like a herx response.

 

Is it possible that your niece has gestational Lyme?

 

I only had a few minor symptoms of Lyme prior to our first son's birth.... The reason I mention it, children with gestational Lyme often their bodies don't recognize the bacteria as foreign and therefore don't make antibodies. These children can be serologically negative when antibodies are tested even via Igenex. This was true for two of our children and we went to great length to do alternative testing to confirm Lyme. The Dot Blot test via Igenex looks for the antigen of Lyme (like DNA) in the urine verses antibodies and this is how we confirmed Lyme for 2 of our children. The healthiest of all our children actually makes antibodies for Lyme and was IND for Lyme, Positive for Bartonella and Positive for Babesia via antibody testing.

 

Did they test for co-infection testing when testing for Lyme? Like our younger son, sometimes co-infections will be positive while Lyme results are negative or IND. I would keep looking for infection. All our children had high titers for 3 different stains of Coxsackies and were only helped mildly by anti-virals. Thankfully, their viral titers are now normal. You can give anti-virals ongoing. It took about 3 years for viral titers to normalize.

Thank you!

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A herx response to an antibiotic indicates bacterial infection.

 

Tick borne infections produce immune dysregulation and suppression, resulting in poor antibody response to other infections (viral and bacterial) and allowing opportunistic infections of all sort to flourish. This suppression also results in the negative antibody titers often observed in tests.

 

I agree with sf_mom. Keep looking for infection.

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My daughter reacted immediately to augmentin and then zithro with rages and herxing. It's what brought me to this board and to the wisdom that you all have shared with me. Detox, detox, detox is what you told me. What about Advil? 20 mg per pound of weight 3-4 times per day for 10 days. See if that helps. Advil really helped my dd through the worst of her herxing. Also CBD hemp oil has become a lifesaver for us.

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Stephen Buhner recommends Japanese knotweed or kudzu for brain inflammation. We used knotweed thoughout abx treatment, at double dosage sometimes if raging/herxing became too bad.

 

I have actually seen 2 ml of Japanese knotweed tincture (WoodLandEssence) change DD (then 11) from a raging defiant nasty kid into a smiling helpful one within 20 minutes. Amazing stuff.

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rowingmom, the knotweed is also an anti-microbial, so would it not also produce a herx reaction? I've been tempted to try it for inflammation based on your (and others) good experiences with it, but my son is so sensitive, he'd probably herx on it.

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HopeinHIM,

 

I had mentioned this study on another thread recently.

 

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0101257
Antibiotic Treatment Attenuates Behavioral and Neurochemical Changes Induced by Exposure of Rats to Group A Streptococcal Antigen

 

The report of the type of reaction your neice had used to be chalked up to the dye in zithromax by some parents. It was said that it could be ordered dye free. Some parents said that helped. In addition to all of the other remarks for you to consider here, the above study points out something that I think is worth mentioning/discussing with Dr. T.

 

Under
Treatment with ampicillin (you can read about the details in the study) about 3/4 of the way through

 

Interestingly, the present study found that ampicillin treatment to control rats led to increased TH levels in the PFC, and tended to increase TH level in the striatum and D1 and D2 levels in the PFC.

 

 

Both the control rats and the GAS rats were given various adjuvants such as complete Freunds adjuvant, heat killed mycobacteria h37RA, heat killed B pertussis and boosted later 2 +4 weeks. I think the control rats (no GAS antigen ) would have had a permeable BBB as did the GAS group. The control group had an increase in TH (tyrosine hydroxylase=precursor to DOPA) and D1 and D2 in the prefrontal cortex. I find that quite interesting and wonder if that could be a clue for some children who react negatively?

 

In this study they used ampicillin ( B-lactam). Zithromax is a Macrolide, so I don't now if that would make a difference or not. For that matter the rats/kids might make a difference too, but still interesting!

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HopeinHIM,

 

I had mentioned this study on another thread recently.

 

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0101257

Antibiotic Treatment Attenuates Behavioral and Neurochemical Changes Induced by Exposure of Rats to Group A Streptococcal Antigen

 

The report of the type of reaction your neice had used to be chalked up to the dye in zithromax by some parents. It was said that it could be ordered dye free. Some parents said that helped. In addition to all of the other remarks for you to consider here, the above study points out something that I think is worth mentioning/discussing with Dr. T.

 

Under

Treatment with ampicillin (you can read about the details in the study) about 3/4 of the way through

 

Interestingly, the present study found that ampicillin treatment to control rats led to increased TH levels in the PFC, and tended to increase TH level in the striatum and D1 and D2 levels in the PFC.

Both the control rats and the GAS rats were given various adjuvants such as complete Freunds adjuvant, heat killed mycobacteria h37RA, heat killed B pertussis and boosted later 2 +4 weeks. I think the control rats (no GAS antigen ) would have had a permeable BBB as did the GAS group. The control group had an increase in TH (tyrosine hydroxylase=precursor to DOPA) and D1 and D2 in the prefrontal cortex. I find that quite interesting and wonder if that could be a clue for some children who react negatively?

 

In this study they used ampicillin ( B-lactam). Zithromax is a Macrolide, so I don't now if that would make a difference or not. For that matter the rats/kids might make a difference too, but still interesting!

 

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rowingmom, the knotweed is also an anti-microbial, so would it not also produce a herx reaction? I've been tempted to try it for inflammation based on your (and others) good experiences with it, but my son is so sensitive, he'd probably herx on it.

 

DD didn't herx on Japanese knotweed (unlike all the other antimicrobial herbs), higher doses simply worked better to quell inflammation. But I would always suggest starting at low doses for anything new, especially if your child is sensitive.

 

Buhner also recommends Kudzu for brain inflammation.

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rowingmom, the knotweed is also an anti-microbial, so would it not also produce a herx reaction? I've been tempted to try it for inflammation based on your (and others) good experiences with it, but my son is so sensitive, he'd probably herx on it.

 

DD didn't herx on Japanese knotweed (unlike all the other antimicrobial herbs), higher doses simply worked better to quell inflammation. But I would always suggest starting at low doses for anything new, especially if your child is sensitive.

 

Buhner also recommends Kudzu for brain inflammation.

 

 

Does anyone know of a Japanese knotwood without alcohol? My dd has COMT ++ and should not have any alcohol.

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