new antibiotics and severe behavioral reaction

[cynditk]

Hi all,

 

After seeing Dr.B and having his first high dose IVIG, he prescribed two new antibiotics for my son- Augmentin XR 2000mg daily, and Doxycycline 2x a day for suspected Lyme. Previous to this my son had been on Azithromyacin 1000 mg daily and Clindamyacin on and off when he tested positive for strep.He has also been on prednisone on and off since last April, mostly on because he was non-functional off it.

 

He had three days of being back to his normal self after IVIG and before we started the new antibiotics. Then he started to go down hill, so we started on the new abx. The first three days of the new abx we great as well- he was doing awesome. Then he began to have severe symptoms, which were similar to his initial presentation of PANDAS last April- he could not sleep at night at all, he has waves of fear and anxiety with nothing causing them, his OCD has flared greatly, he says he now can't think clearly at all-he can't even finish a thought, and now his body jerks and spasms much worse than it ever has before-the jerks don't seem like tics, they're like big waves of energy that move through parts of his body, and he just shakes that body part, but I watched him sleep and he has them in his sleep too. He also has instances of being really angry and rageful.

 

I talked to his ped who knows PANDAS, she said try large doses of Lorazepam to help him sleep. So we've been trying that since last night, and it does seem to help him sleep, although it doesn't take any of the other stuff away.

 

I called Dr.B's office today, haven't heard back yet. He said that since Lucas had been on steroids so much, that treating Lyme would be a lot harder and maybe this is the herxing that everyone talks about when treating Lyme? Any PANDAS/PANS people see a worsening of symptoms after hd IVIG and new antibiotics?

How do you get through this? Anything help?

 

Also, he is still on steroids, Dr.B didn't want to take him off until he was stable on the new abx.

 

As far as his Lyme dianosis, in 2008 when he first got sick he was positive for 1 Lyme specific band, and indeterminite for 3 others on the IGM part. At that time he was not tested for any co-infections. Now he is negative for everything, according to testing at Dr.B's.

 

Positive on IgG for Myco, negative IgM.

 

His viral titers for EBV and other herpes viruses have been very high IgG in the past also, never IgM though.

 

 

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[momcap]

DS8 raged non-stop on augmentin. We stuck it out for one miserable month and then had to stop as we were afraid he would end up in a hospital. I don't know if the Augmentin was really killing something and causing a long herx, or if it was just a side effect of the med itself. Either way we couldn't do it. He had similar difficulties on Biaxin, but with improvement after 2 weeks, which seemed more like a true herx. He also rages on bactrim and it doesn't let up at all.

 

Now that we are working with a LLMD, we are adding things slowly and weaning up as tolerated, and switching meds that are not tolerated. We have a pretty heavy detox plan as well, which we feel really helps him tolerate things he didn't tolerate before. Does Dr. B have him on anything for detox? If it is herxing the detox should help a lot.

[lyme_mom]

Hi all,

 

After seeing Dr.B and having his first high dose IVIG, he prescribed two new antibiotics for my son- Augmentin XR 2000mg daily, and Doxycycline 2x a day for suspected Lyme. Previous to this my son had been on Azithromyacin 1000 mg daily and Clindamyacin on and off when he tested positive for strep.He has also been on prednisone on and off since last April, mostly on because he was non-functional off it.

 

He had three days of being back to his normal self after IVIG and before we started the new antibiotics. Then he started to go down hill, so we started on the new abx. The first three days of the new abx we great as well- he was doing awesome. Then he began to have severe symptoms, which were similar to his initial presentation of PANDAS last April- he could not sleep at night at all, he has waves of fear and anxiety with nothing causing them, his OCD has flared greatly, he says he now can't think clearly at all-he can't even finish a thought, and now his body jerks and spasms much worse than it ever has before-the jerks don't seem like tics, they're like big waves of energy that move through parts of his body, and he just shakes that body part, but I watched him sleep and he has them in his sleep too. He also has instances of being really angry and rageful.

 

I talked to his ped who knows PANDAS, she said try large doses of Lorazepam to help him sleep. So we've been trying that since last night, and it does seem to help him sleep, although it doesn't take any of the other stuff away.

 

I called Dr.B's office today, haven't heard back yet. He said that since Lucas had been on steroids so much, that treating Lyme would be a lot harder and maybe this is the herxing that everyone talks about when treating Lyme? Any PANDAS/PANS people see a worsening of symptoms after hd IVIG and new antibiotics?

How do you get through this? Anything help?

 

Also, he is still on steroids, Dr.B didn't want to take him off until he was stable on the new abx.

 

As far as his Lyme dianosis, in 2008 when he first got sick he was positive for 1 Lyme specific band, and indeterminite for 3 others on the IGM part. At that time he was not tested for any co-infections. Now he is negative for everything, according to testing at Dr.B's.

 

Positive on IgG for Myco, negative IgM.

 

His viral titers for EBV and other herpes viruses have been very high IgG in the past also, never IgM though.

 

 

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Is Dr B a lyne literate doctor or the Pandas dr? I've never heard of taking both doxy and augmentin xr at the same time for Lyme. They both treat Lyme.

[lismom]

I was told that those two drugs counteract. I believe the doxy will lessen the effect of the augmentin. We're on augmentin xr now and stopped minocycline for the time being. Maybe if you do doxy you should titrate up slowly in dose. My son herxed for the first month on augmentin xr. Still herxing but less severe.