What is this??pandas, herx or abx side effect?

[mama4]

Just started on Azithromycin yesterday for Pandas flare from strep exposure. Part of the recent flare was anxiety, obsessional thoughts, moments of confusion. It seems to be a bit worse on the abx. Herx? We are doing detox with lemon water and charcoal which helps with sleep. Upon waking in particular there are moments of derealisation, brief moments of high anxiety, fear of going crazy, confusion. They seem to pass, almost like a seizure, but seem to be more frequent. Does it sound like the Pandas flare worsening, reaction to abx (have read that azithromyckn can have bad psychological effects), or Herx?

Could it just  be the flare? How would you tell? We don't want to continue if the abx are going to get even worse psych symptoms, but could barrel though if it is a herx. We are starting to suspect Lyme coinfections are Involved. I've read the herxes from that can be similar. Had sort of the same effect from  amox-severe insomnia, anxiety. 

 

Would really love thoughts, thank you!!

Edited May 14, 2017 by mama4

[bobh]

I don't know how to distinguish between either flare getting worse, and "bad psychological effects" from zith, and herx.  I feel a little more comfortable separating out allergic reactions to meds (because they are less like PANDAS/PANS flare symptoms) - and allergic reaction would be an important reason to stop the zith right away.

My bias is that it might be herx, and therefore to wait it out, perhaps lower the dose if its too hard to take.  For my own kid, I don't like to pile on other detoxing ideas for the first time, because you never know if he is having some reaction to those (I thought my kid got worse on charcoal when we first tried it, but can't be sure).

Do let us know how it goes.

[mama4]

21 hours ago, bobh said:

I don't know how to distinguish between either flare getting worse, and "bad psychological effects" from zith, and herx.  I feel a little more comfortable separating out allergic reactions to meds (because they are less like PANDAS/PANS flare symptoms) - and allergic reaction would be an important reason to stop the zith right away.

My bias is that it might be herx, and therefore to wait it out, perhaps lower the dose if its too hard to take.  For my own kid, I don't like to pile on other detoxing ideas for the first time, because you never know if he is having some reaction to those (I thought my kid got worse on charcoal when we first tried it, but can't be sure).

Do let us know how it goes.

Thank you so much for responding. I agree it looks like a herx. This is day 4 after 3 doses and the extreme anxiety accompanied by facial tics come and go through out the day. Like mimi flares-almost like anxiety seizures. Sometimes there are long stretches in a day with no mini flares. Tried charcoal and had nightmares, but not like the awful ones which won't let you sleep at all. II hope to just the strep herx and we will be done with it and not to some other underlying infection.  I think we have some gut issues and methylation issues, but it all seems overwhelming right now and I hate to start trying something new when I don't know if the reaction will be from the flare or the treatment. 

We are worried about the gut as a couple of different probiotics have caused an  immediate exacerbation. Not sure how to protect the gut.

[Teri]

Are you giving any ibuprofin?  That may help calm things down a bit.   Also may I recommend an excellent probiotic?We use Florastor Kids.  My dd10 has PANDAS,Lyme, Bart. and Mycoplasma.  She has taken a cocktail of antibiotics daily and the Florastor has protected her gut!

As far as herxing reaction, I would make sure you have touched based with your Dr.   Watch the foods your child is comsuming, food dyes and artificial ingredients for us have often led to behavioral changes and nightmares - specifically red dye for us.  

[mama4]

2 hours ago, Teri said:

Are you giving any ibuprofin?  That may help calm things down a bit.   Also may I recommend an excellent probiotic?We use Florastor Kids.  My dd10 has PANDAS,Lyme, Bart. and Mycoplasma.  She has taken a cocktail of antibiotics daily and the Florastor has protected her gut!

As far as herxing reaction, I would make sure you have touched based with your Dr.   Watch the foods your child is comsuming, food dyes and artificial ingredients for us have often led to behavioral changes and nightmares - specifically red dye for us.  

Thank you! Yes, this time ibuprofen didn't do the trick. Even the probiotic was problematic. Will try your suggestion.

 

[mama4]

An update, things seemed to have settled down. Two Activated Charcoal caps before bed seem to completely stop the nightmares and finally getting good sleep. Maybe just getting used to the abx or no longer flaring, not sure, but the 2 caps before bed can't hurt. 

[bobh]

Great that things are getting better!

We have also had our son get worse on a couple of different probiotics.  In at least one case (for us), it could not have been any kind of temporary herx with the probiotics (if they in fact can cause a herx - I don't know) because we were on that probiotic for months (so the herx would have petered out), then went off it and got better just about right away.  Then we went on it and got worse, then off it and better again.  I have encountered other parents that have said their kid seems worse on probiotics, but it seems relatively rare.  But possibly it is more common if parents aren't careful to test, or if its believed to be a herx.  We were on various probiotics for 2 years before we realized it actually made him worse.

That was a painful realization - to think we were making our guy worse over that long length of time.  Now I always test something new in isolation, with no other major change (that we can control) going on, to see if he gets worse on just that one thing.  That is what I would recommend - one supplement change at a time with a week before the next thing.