Jump to content
ACN Latitudes Forums

if tics get worse on azith...then do we go the lyme rabbittrail


Recommended Posts

Clearly my ocd--or obsessive thinking--has got me in a death grip here. i am doubting and questioning and ruminating about everything here. But IF I try the zithromax and her tics get worse, then do I have to go the Lyme rabbit trail??

Well, I would highly recommend trying your best to learn about Lyme testing, and making sure you rule it in or out. Finding the cause is half the battle.

 

However, I know of a poster (Chemar) whose child is just TS who has gotten worse on Zith. So that may indicate your child has TS and not PANDAS.

 

But mostly, I don't think a negative reaction to zithromax will tell you much of anything, other than zith doesn't work for your child. I don't think anyone has said that their doctor uses a "zithromax trial" to diagnosis a child with Lyme/PANDAS/TS/OCD.

 

You are doing a great job. Keep digging and asking questions to get to the root of the problem. Mostly every parent here knows about the obsessing about getting your child better...I'm sorry that you are in "a death grip". Perhaps try to think of it as information gathering.

 

I'm keeping all of our kids in my prayers!

 

Good Luck!

Link to comment
Share on other sites

After my daughter's first IVIG in June 2009 she was placed on Augmentin. We saw some improvement but after 3 months we decided to try Zithromax. My daughter's OCD increased. I switched back to Augmentin after 14 days. In February, we tried again and same thing happened. My dd stayed on different strengths of Augmentin until July 2010 when we received a positive lyme test. She was placed on zithromax (yes, she had herxing at first) and 8 weeks later added in Amox.

I wish I would have done the Igenex WB IgM/IgG for $200 18 months ago. It would have saved me the cost of the first IVIG (not covered) and a year of prescription costs for what might have been the wrong antibiotic anyhow.

So IMHO, run the lyme test (epecially before considering ivig).

 

Please no throwing tomatoes at the screen. :D

Link to comment
Share on other sites

This forum is a WEALTH of information--thank you per usual.

 

This whole zithro. conversation--

I want to add, that my older d's tics are worse right now and she is on azithro.

It is like a tourettes reaction, with intrusive thoughts triggering eye rolls and confessing. Very difficult and she has been saying she is not able to "stop" it --

 

She has only had the Western Blot and it was negative. We do not know if the azithro is making the tics worse, but reading that it may have that effect on others certainly concerns me. Do we know if this has been widespread? Common?

 

Thank you --

Link to comment
Share on other sites

After my daughter's first IVIG in June 2009 she was placed on Augmentin. We saw some improvement but after 3 months we decided to try Zithromax. My daughter's OCD increased. I switched back to Augmentin after 14 days. In February, we tried again and same thing happened. My dd stayed on different strengths of Augmentin until July 2010 when we received a positive lyme test. She was placed on zithromax (yes, she had herxing at first) and 8 weeks later added in Amox.

I wish I would have done the Igenex WB IgM/IgG for $200 18 months ago. It would have saved me the cost of the first IVIG (not covered) and a year of prescription costs for what might have been the wrong antibiotic anyhow.

So IMHO, run the lyme test (epecially before considering ivig).

 

Please no throwing tomatoes at the screen. :D

I want to blow kisses at the screen actually! I totally ditto your opinion. We wasted 30 grand with the doc's fees and IVIg fees not covered before we found out about Lyme.The worse was putting little DS thru all that trauma. Im trying to get Dr T to run reliable lyme panels not just quest before a PANDAS diagnosis. Many of these antibiotics treat Lyme and co infections too so when we switched to Biaxin it was a great reduction of his symptoms because Biaxin is also used for Lyme and Bartonella.

Zithromax didnot work for us either for two reasons Dr Jones told me- Zith can have neuro side effects in some children and make the neuro symptoms worse and the liquid Zith has the Red dye in it which can cause neuro issues in some kids. So we stopped and started Bactrim instead as per Dr Jones at that point.

Link to comment
Share on other sites

After my daughter's first IVIG in June 2009 she was placed on Augmentin. We saw some improvement but after 3 months we decided to try Zithromax. My daughter's OCD increased. I switched back to Augmentin after 14 days. In February, we tried again and same thing happened. My dd stayed on different strengths of Augmentin until July 2010 when we received a positive lyme test. She was placed on zithromax (yes, she had herxing at first) and 8 weeks later added in Amox.

I wish I would have done the Igenex WB IgM/IgG for $200 18 months ago. It would have saved me the cost of the first IVIG (not covered) and a year of prescription costs for what might have been the wrong antibiotic anyhow.

So IMHO, run the lyme test (epecially before considering ivig).

 

Please no throwing tomatoes at the screen. :D

I want to blow kisses at the screen actually! I totally ditto your opinion. We wasted 30 grand with the doc's fees and IVIg fees not covered before we found out about Lyme.The worse was putting little DS thru all that trauma. Im trying to get Dr T to run reliable lyme panels not just quest before a PANDAS diagnosis. Many of these antibiotics treat Lyme and co infections too so when we switched to Biaxin it was a great reduction of his symptoms because Biaxin is also used for Lyme and Bartonella.

Zithromax didnot work for us either for two reasons Dr Jones told me- Zith can have neuro side effects in some children and make the neuro symptoms worse and the liquid Zith has the Red dye in it which can cause neuro issues in some kids. So we stopped and started Bactrim instead as per Dr Jones at that point.

Actually, I was referring to the Augmentin in our situation. My daughter is currently taking Zith & Amox (and weekend cyst buster) for her Lyme. This time when we started the Zith for the lyme, I knew about the herxing, and didn't jump ship. My dd is doing quite well on her new abx regimen.

It's really not a certain abx, but usually a combination that are needed at the same time. That's my regret of not getting an earlier diagnosis.

Edited by philamom
Link to comment
Share on other sites

sptcmom----can you elaborate on the "neuro side effects in some children"--that's what I"m intersted in...thanks.

neuro plus neuropsychiatric Dr Jones said. For us the motor tics got completely off the charts worse right away as did the OCD and hyperactivity almost to the point of manic with severe mood lability. Dr J asked us to stop stat and we needed to wait for 48 hours to see some relief (half life of Zith etc). We did see relief in 48 hours.

Link to comment
Share on other sites

Clearly my ocd--or obsessive thinking--has got me in a death grip here. i am doubting and questioning and ruminating about everything here. But IF I try the zithromax and her tics get worse, then do I have to go the Lyme rabbit trail??

 

 

just wanted to add our experience for you in collecting ancedotal stories. . . i wouldn't say it points to anything for your son and can't say i am for certain it was herxing for my son.

 

he had positive rapid strep test at 22 months old. took azith, no problems. never retested to see if strep was actually gone. his only symptom was vomiting one time. ( his older bro was positive the day before, that's why we tested). he had previously had trouble with abx - amox and onmicef for ear infections -- only small rash and was switched quickly. but this time, no trouble with azith.

 

fast forward 2.5 years, age 4 1/2, presented with wild pandas symptoms -- extreme separation anxiety, inappropriate behaviors. no overt tics, some very small things that now i see could have been tics. a few months to discover pandas, high titers, positive culture. dr put him on 5-day azith. horrible! all previous behaviors returned (we had been seeing naturopath, some things were getting better). extreme separation and social anxiety. so happy to be off that (early in my pitand education)

 

about a month later, new dr put on keflex. all symtpoms resolved in about 3 days. unfortunately, relapsed after about 30 days off keflex.

 

about a year later, he wasn't seeming to become completely healthy, although was doing 'okay' -- maybe 90% pre-pandas, we thought -- at home. in spring, found out school was not doing so well -- trouble 'bossing other kids' and with focus. investigated other infections and there were plenty -- including lyme.

 

so --- could that early reaction to azith been a herx? i don't know. he does have pitand, he does have lyme, he did have a bad reaction to azith. so, what's the medical statement - ? - true, true and unrelated. would it be unrelated or related? i don't think we can know.

 

another note -- his first western blot thru quest around the time of relapse when first off keflex was completely non-reactive.

Edited by smartyjones
Link to comment
Share on other sites

If azith is making tics worse, there is a possibility that she has clostridia. azith will make clostridia worse, and clostridia causes tics.

 

 

Hi Stephanie, I have searched around and cannot find any references to clostridia causing tics.

 

Do you have any info. on that which you could share?

It seems to me that any abx could aggravate clostridia -- right?

 

We are trying to decide whether we switch from azithro--to something else, and if there really could be any connection between the Azithro. and tics?

Thanks--

Link to comment
Share on other sites

If azith is making tics worse, there is a possibility that she has clostridia. azith will make clostridia worse, and clostridia causes tics.

 

 

Hi Stephanie, I have searched around and cannot find any references to clostridia causing tics.

 

Do you have any info. on that which you could share?

It seems to me that any abx could aggravate clostridia -- right?

 

We are trying to decide whether we switch from azithro--to something else, and if there really could be any connection between the Azithro. and tics?

Thanks--

 

its my son....clostridia makes him worse and gives him screeches....clear clostridia and screeches remit..still other vocals and almost no motors......did this about 4 times

Link to comment
Share on other sites

This forum is a WEALTH of information--thank you per usual.

 

This whole zithro. conversation--

I want to add, that my older d's tics are worse right now and she is on azithro.

It is like a tourettes reaction, with intrusive thoughts triggering eye rolls and confessing. Very difficult and she has been saying she is not able to "stop" it --

 

She has only had the Western Blot and it was negative. We do not know if the azithro is making the tics worse, but reading that it may have that effect on others certainly concerns me. Do we know if this has been widespread? Common?

 

Thank you --

 

how long on azith....

for ds as per other post...i think my ds gut is so messed up..i am litterally standing on top of a needle point...

it could be herx and/or clostridia....make sure no red dye....

doesn't mean i won't revisit azith again.....

Link to comment
Share on other sites

I'm sorry I don't have any info on clostridia causing tics, just some feedback from 2 different DAN practitioners. clostridia is very neurotoxic and it also can contribute to the inflammation of pandas. It causes increased tics in one of my boys but not the other (more ragey stuff in the other). I don't think all abx would have the same effect on clostridia. I always found the augmentin helps keep it in check, but does not altogether kill it. azith will most def make worse. flagyl, vancomycin, etc will kill clostridia. you would need to have an OAT test done:

 

http://www.greatplainslaboratory.com/home/eng/microbial_oat.asp

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...