Why do some meds work the first time but not the next ?

[thomasmom]

My ds9 is still struggling with ongoing tics that have been especially horrible since school has started (stress ? strep exposure ? allergies ? cognitive fog ...who knows?) We are especially downtrodden because all the things that seemed to work have now failed us. I upped his Augmentin to 500 then to 875 BID....no change (no stomach issues either but is taking a probiotic. He does of a HA frequently but that doesn't stop him from playing with his friends.) I even got my local peds to write for some Prednsione. That in the past has been our ace in the hole. The first time he had a burst he stopped ticcing completely for 6 weeks. The second time he got it a year later he stopped ticcing but went back to it the day after the last dose. Now....nothing. Not getting any worse just no improvment. I don't know what to do. The first IVIG we had some bad "turning back the pages" tics but then had several months of relief. The second IVIG a year later...we had fewer "turning back the pages tics" but then a much shorter releif duration. I am afriad to spend the money (and time and effort to get to Chicago) to try this again. No relief past expensive IVIG would just kill me I think.

 

He was in such a long stretch of relief until June 21. That was the day helost 2 teeth. (one he tugged at) Within hours he was ticcing up a storm. He went from 0 to 60 very quickly

 

Why don't treatments work...again ? Am I now dealing with a different disorder ? Can the infectious part of PANDAS be over and now I am facing the residual neuro effects which need to be treated akin to Tourettes ?

 

Like all of you i am so tired of fighting this.....so depressed. Help !

[dcmom]

I really don't have answers for you.

 

My dd was almost perfect this spring/summer post pex. Then, she lost two teeth in two days and it started a fairly substantial downward spiral. We did probably a too low dose, 30 day steroid taper. It did really help, although not to 100%- she is improving with time, however.

 

So- I KNOW teeth can cause an episode (younger dd had this also).

 

I think sometimes the 30 day taper is needed as compared to 5 day burst- which did you do?

 

And lastly- we have had times when steroids were less effective- but in the end it was actually that the episode was worse, and the steroids were helping, just not to 100%.

 

Hang in there- we ALL share your frustration.

[PhillyPA]

DCMOM how many times have your daughters had PEX?

[lyme_mom]

My ds9 is still struggling with ongoing tics that have been especially horrible since school has started (stress ? strep exposure ? allergies ? cognitive fog ...who knows?) We are especially downtrodden because all the things that seemed to work have now failed us. I upped his Augmentin to 500 then to 875 BID....no change (no stomach issues either but is taking a probiotic. He does of a HA frequently but that doesn't stop him from playing with his friends.) I even got my local peds to write for some Prednsione. That in the past has been our ace in the hole. The first time he had a burst he stopped ticcing completely for 6 weeks. The second time he got it a year later he stopped ticcing but went back to it the day after the last dose. Now....nothing. Not getting any worse just no improvment. I don't know what to do. The first IVIG we had some bad "turning back the pages" tics but then had several months of relief. The second IVIG a year later...we had fewer "turning back the pages tics" but then a much shorter releif duration. I am afriad to spend the money (and time and effort to get to Chicago) to try this again. No relief past expensive IVIG would just kill me I think.

 

He was in such a long stretch of relief until June 21. That was the day helost 2 teeth. (one he tugged at) Within hours he was ticcing up a storm. He went from 0 to 60 very quickly

 

Why don't treatments work...again ? Am I now dealing with a different disorder ? Can the infectious part of PANDAS be over and now I am facing the residual neuro effects which need to be treated akin to Tourettes ?

 

Like all of you i am so tired of fighting this.....so depressed. Help !

 

It is quite common when you are treating lyme disease for antibiotics to stop being effective b/c the spirochete changes shape and is very good at evading antibiotics. These bugs are very smart-stealth pathogens. For example you may start treatment of lyme with doxycyclene or amoxicillin and then add something like ceftin or azithromycin after a month or so to corner the lyme. Once this is no longer working they might try a different combination and these decisions are made based on a review of the whole picture: the symptoms, the history and a review of blood work. Coinfections are often involved and require specific medications in conjunction with the lyme meds. Symptoms are the most important factor though. If you have not consulted an ilads trained physician I would definitely do that if possible. They are masters at eradicating multiple infections from the body b/c most lyme patients have more than lyme spirochetes involved and they have a great deal of experience with all kinds of antibiotics and other medications that kill bugs in the body.

[Fixit]

i would also suggest finding a dan doc...as they have other thoughts and tricks even panda docs don't consider....

 

other than that...I HEAR and UNDERSTAND YOU!!!

[EAMom]

How about trying Azith. 500mg daily for a month? I think sometimes when one antibiotic "isn't cutting it anymore" it's worthwhile to try something else.

[Fixit]

have you had all your subclasses checked to see if there is a deficiancy...

have you checked out lymes...

 

there is a post on doc t's about tso..a helmeted parasite that gives off something that is somehow immune modulating...

i also read on this for a guy whose allergys were so bad he was almost home bound..and now he does this and has a life...

there could also be parasites in his system that he shouldn't have and needs to get rid of

 

have you looked into celiacs and at the thyroid

[matis_mom]

My ds9 is still struggling with ongoing tics that have been especially horrible since school has started (stress ? strep exposure ? allergies ? cognitive fog ...who knows?) We are especially downtrodden because all the things that seemed to work have now failed us. I upped his Augmentin to 500 then to 875 BID....no change (no stomach issues either but is taking a probiotic. He does of a HA frequently but that doesn't stop him from playing with his friends.) I even got my local peds to write for some Prednsione. That in the past has been our ace in the hole. The first time he had a burst he stopped ticcing completely for 6 weeks. The second time he got it a year later he stopped ticcing but went back to it the day after the last dose. Now....nothing. Not getting any worse just no improvment. I don't know what to do. The first IVIG we had some bad "turning back the pages" tics but then had several months of relief. The second IVIG a year later...we had fewer "turning back the pages tics" but then a much shorter releif duration. I am afriad to spend the money (and time and effort to get to Chicago) to try this again. No relief past expensive IVIG would just kill me I think.

 

He was in such a long stretch of relief until June 21. That was the day helost 2 teeth. (one he tugged at) Within hours he was ticcing up a storm. He went from 0 to 60 very quickly

 

Why don't treatments work...again ? Am I now dealing with a different disorder ? Can the infectious part of PANDAS be over and now I am facing the residual neuro effects which need to be treated akin to Tourettes ?

 

Like all of you i am so tired of fighting this.....so depressed. Help !

 

It is quite common when you are treating lyme disease for antibiotics to stop being effective b/c the spirochete changes shape and is very good at evading antibiotics. These bugs are very smart-stealth pathogens. For example you may start treatment of lyme with doxycyclene or amoxicillin and then add something like ceftin or azithromycin after a month or so to corner the lyme. Once this is no longer working they might try a different combination and these decisions are made based on a review of the whole picture: the symptoms, the history and a review of blood work. Coinfections are often involved and require specific medications in conjunction with the lyme meds. Symptoms are the most important factor though. If you have not consulted an ilads trained physician I would definitely do that if possible. They are masters at eradicating multiple infections from the body b/c most lyme patients have more than lyme spirochetes involved and they have a great deal of experience with all kinds of antibiotics and other medications that kill bugs in the body.

I was reading symptoms of Lyme Disease, and one is "the antibiotic you had last will not work next" or something like that. I am seriously considering getting myself tested. Augmentin did not work for me last time (I had had it before), and they gave me Biaxin, it worked. But now I have strep again, and the Biaxin does not seem to be cutting it!