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I know this has been a topic often discussed on the forum but I thought I'd share our LLMDs perspective on our son's recent herxheimer response to Rifampin to provide perspective.

 

Our younger DS was rotated to rifampin almost 8 weeks ago. Since starting we've seen the return of rage behavior, OCD blips and total potty training regression. He herx'd almost immediately from the rotation with rages starting on day 2, 4, 5. We also noticed OCD return and build in frequency and intensity over a four week period. Rages became a daily problem in the 4th week. The potty training regression didn't occur until we were in our 5th week. We saw no improvement in symptoms, only worsening until around the 4th week of rotation. In the 4th week we did notice he was now able to play with unknown children on the playground. Normally DS seemed paralyzed/overwhelmed by the activity of others at park and could not integrate with unknown children. He was suddenly and happily playing in the sand box with an unknown child. On another occasion he was playing tag with older children and actually engaged them in the game. There are a few other similar incidents that made me go.... hmmmm, my kid among the rages and OCD is doing better. We are in week 8 now, rages have improved to frequent mood liability, hard to say on the OCD, potty training still horrible and back to wearing pull ups. We have seen improvement in his ability to socially integrate, sensory issues, slight decrease in fist clenching, pacing and shoulder shrugging.

 

I had a long conversation with our Dr. this morning about OCD/rages being a herx response.... and he did confirm that these can increase and last a very long time. With herx's its is those unexpected improvements that tell you are on the right track. He also said if things were worse for up 4 to 6 months with no 'unexpected' improvements an antibiotic rotation should be considered. We did have the option of lightening the antibiotic load or pushing through with the knowledge some of these symptoms may hang in there for a while. Our choice was to continue on the Rifampin for another 8 weeks and to reevaluate at next appointment. You know as a parent 'I want' to fix the obvious 'TICS/OCD/Rages/Potty Training Issue'..... I appreciate the 'unexpected' improvements but I do understand now its a process and I am choosing to take the good with the bad. He felt the potty training regression was due to yeast. Our Dr. has a very different take on yeast as result of die-off and we are not doing anything to treat it at this moment.

 

I hope our story helps someone experiencing similar.

Edited by SF Mom
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http://www.lymenet.de/symptoms/cycles/evalsum.htm I posted this yesterday as I was thinking about my dd flares. She is pretty consistent at every 4 weeks. I found the analogies very interesting, and it solidifies my belief in the link between PANDAS and Lyme..... INFLAMMATION as the niches leak (sound familiar from PANDAS) I have been so topsy turvy over this last year trying to get her well, but now that we have stablilized treatment over the last several months it allows me to notice the pattern without all the other variables. The flares certainly come about every four weeks, but are less severe. My point is, I now see the herx as the inflammatory process rather than a random toxin dump. HMMMMMM
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I know this has been a topic often discussed on the forum but I thought I'd share our LLMDs perspective on our son's recent herxheimer response to Rifampin to provide perspective.

 

Our younger DS was rotated to rifampin almost 8 weeks ago. Since starting we've seen the return of rage behavior, OCD blips and total potty training regression. He herx'd almost immediately from the rotation with rages starting on day 2, 4, 5. We also noticed OCD return and build in frequency and intensity over a four week period. Rages became a daily problem in the 4th week. The potty training regression didn't occur until we were in our 5th week. We saw no improvement in symptoms, only worsening until around the 4th week of rotation. In the 4th week we did notice he was now able to play with unknown children on the playground. Normally DS seemed paralyzed/overwhelmed by the activity of others at park and could not integrate with unknown children. He was suddenly and happily playing in the sand box with an unknown child. On another occasion he was playing tag with older children and actually engaged them in the game. There are a few other similar incidents that made me go.... hmmmm, my kid among the rages and OCD is doing better. We are in week 8 now, rages have improved to frequent mood liability, hard to say on the OCD, potty training still horrible and back to wearing pull ups. We have seen improvement in his ability to socially integrate, sensory issues, slight decrease in fist clenching, pacing and shoulder shrugging.

 

I had a long conversation with our Dr. this morning about OCD/rages being a herx response.... and he did confirm that these can increase and last a very long time. With herx's its is those unexpected improvements that tell you are on the right track. He also said if things were worse for up 4 to 6 months with no 'unexpected' improvements an antibiotic rotation should be considered. We did have the option of lightening the antibiotic load or pushing through with the knowledge some of these symptoms may hang in there for a while. Our choice was to continue on the Rifampin for another 8 weeks and to reevaluate at next appointment. You know as a parent 'I want' to fix the obvious 'TICS/OCD/Rages/Potty Training Issue'..... I appreciate the 'unexpected' improvements but I do understand now its a process and I am choosing to take the good with the bad. He felt the potty training regression was due to yeast. Our Dr. has a very different take on yeast as result of die-off and we are not doing anything to treat it at this moment.

 

I hope our story helps someone experiencing similar.

 

 

SFMom

 

I went to see my ds's lyme dr today at his Beverly hills office today. ( We are seeing him every 2weeks)

I told him that my ds is not doing too well with rifampin and it seemed that rifampin is undermining all our pandas treatment and putting us back to square one with OCD and rage sneaking back since starting rif but I also told him that I did not mind all that as long as we are heading to the right direction. Doc said that he rather we change my ds's med to Levaquin as he did not think rifampin is addressing my son's bartonella correctly.

We might be heading to generally to good direction but he thought that some other med (Leva) might do the same job with less herxing.

So I am going to switch my son's med as soon as I can fill up the prescription.

So far this is my note on rifampin.

All his physical herx symptoms were gone in first two weeks

Weeping and depression were gone by 3weeks.

OCD/rage came back in second week through now---not as frequent as before any treatment but considering they were completely gone for 3months prior to rifampin, I would say rifampin is the culprit.

If levaquin does not work, we will definitely go back to rifampin but for now Levaquin, here we come!!!!

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Good luck with the new medication. It really took a while for rages to break... I think, I pray they have subsided. I don't know how people do it with older children and anything that will help them get through this peroid is required. Even an antibiotic change to lessen the load. I just posted some interesting things about babesia/bartonella/lyme under Babesia topic.

 

Here is comment very specific to Bartonella and herx response.

 

Tick and flea-borne infections cause isolation. They ruin relationships due to fogginess, poor insight, various addictions, rage, extreme hostility, and refusing to get treatment, and they can sometimes provoke violence. Bartonella is likely the worst cause of these problems, but Lyme and Babesia and their die offs can also increase these problems.

 

-Wendy

Edited by SF Mom
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http://www.lymenet.de/symptoms/cycles/evalsum.htm I posted this yesterday as I was thinking about my dd flares. She is pretty consistent at every 4 weeks. I found the analogies very interesting, and it solidifies my belief in the link between PANDAS and Lyme..... INFLAMMATION as the niches leak (sound familiar from PANDAS) I have been so topsy turvy over this last year trying to get her well, but now that we have stablilized treatment over the last several months it allows me to notice the pattern without all the other variables. The flares certainly come about every four weeks, but are less severe. My point is, I now see the herx as the inflammatory process rather than a random toxin dump. HMMMMMM

 

Hello Priscilla

Good article.

I thought I heard someone saying that there is also correlation between full moon and lyme.

I personally think altitude has something to do with lyme as well. ( at least the kind my ds has)

I always noticed my ds's pandas/bartonella symptom flared up when we were at certain altitude ( ski or fishing trip to big bear or mammoth lake often and every time when we were coming down from mountain, he would have a complete break down---I would spare you the details)

My son and I went to New York a couple of weeks ago and whenever we were landing, he once again had total melt down. ( this time he was weeping and shaking his head--totally miserable) This has happen too many times for me to ignore as coincidence. I really think there is something with altitude and my son's problem. I am going to have my ds ( poor guy) do hyperbaric chamber therapy at Irvine this summer for the same reason.

If I throw enough stones at it, at least one will hit it, right?

Over all my ds is doing fantastic, how about your dd?

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http://www.lymenet.de/symptoms/cycles/evalsum.htm I posted this yesterday as I was thinking about my dd flares. She is pretty consistent at every 4 weeks. I found the analogies very interesting, and it solidifies my belief in the link between PANDAS and Lyme..... INFLAMMATION as the niches leak (sound familiar from PANDAS) I have been so topsy turvy over this last year trying to get her well, but now that we have stablilized treatment over the last several months it allows me to notice the pattern without all the other variables. The flares certainly come about every four weeks, but are less severe. My point is, I now see the herx as the inflammatory process rather than a random toxin dump. HMMMMMM

 

Hello Priscilla

Good article.

I thought I heard someone saying that there is also correlation between full moon and lyme.

I personally think altitude has something to do with lyme as well. ( at least the kind my ds has)

I always noticed my ds's pandas/bartonella symptom flared up when we were at certain altitude ( ski or fishing trip to big bear or mammoth lake often and every time when we were coming down from mountain, he would have a complete break down---I would spare you the details)

My son and I went to New York a couple of weeks ago and whenever we were landing, he once again had total melt down. ( this time he was weeping and shaking his head--totally miserable) This has happen too many times for me to ignore as coincidence. I really think there is something with altitude and my son's problem. I am going to have my ds ( poor guy) do hyperbaric chamber therapy at Irvine this summer for the same reason.

If I throw enough stones at it, at least one will hit it, right?

Over all my ds is doing fantastic, how about your dd?

 

 

funny you say that, last time we came down from a snowboard trip it was HORRIBLE!!! The entire drive!! Overall, she is doing FANTASTIC!! mild flares every 4 weeks or so, then she seems to get right back on track. She is in sports, swimming, and socially blossomed:) She is so happy and cooperative MOST of the time, and so WISE from all her struggles. I look back at how hard it was to just get up in the morning and I feel so GRATEFUL for where we are. Praise God!!!

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