HELP - Tics Out of Control

[dsnow777]

We are in 911 mode at this point.

 

Quick history (i've posted elsewhere).

 

Early September: Lethargic, Fell asleep at 5PM, High fever at night

1 week later: Complete personality change, anger, rage, mean, anxiety

Vocal Tics develop

Weeks that follow: Motor tics (mostly eye rolling, delayed blinking)

Behavior Issues Continue through October.

 

November:

Tics stay, not as strong.

 

Dr. T tests revealed early lyme: IgM positive for 23, 41

 

Our pediatrician says its not lyme, high probability of false positive, etc.

 

We started her on Augmentin 400mg twice a day from Dr. T this past Saturday.

 

All of her bad behaviors came back.

 

Her vocal tic is so bad, worst ever, 40 a minute at least. mmmph mmmph deep from the lungs grunting like a laugh sound.

 

Have to pull her from school.

 

Do these symptoms confirm lyme since the Augmentin seems to have quadrupled the tics?

 

I don't know what to think anymore. Dr. T says might be lyme, lets treat it. Local peditricians have no clue or say its probably false and it cant be lyme.

 

My head is going to explode.

[dsnow777]

Also forgot to mention...

 

I've read that Augmentin causes fungal overgrowth in your intestines, etc.

 

If there is an underlying fungus issue that's causing everything, could the Augmentin be making it worse?

[Fixit]

We are in 911 mode at this point.

 

Quick history (i've posted elsewhere).

 

Early September: Lethargic, Fell asleep at 5PM, High fever at night

1 week later: Complete personality change, anger, rage, mean, anxiety

Vocal Tics develop

Weeks that follow: Motor tics (mostly eye rolling, delayed blinking)

Behavior Issues Continue through October.

 

November:

Tics stay, not as strong.

 

Dr. T tests revealed early lyme: IgM positive for 23, 41

 

Our pediatrician says its not lyme, high probability of false positive, etc.

 

We started her on Augmentin 400mg twice a day from Dr. T this past Saturday.

 

All of her bad behaviors came back.

 

Her vocal tic is so bad, worst ever, 40 a minute at least. mmmph mmmph deep from the lungs grunting like a laugh sound.

 

Have to pull her from school.

 

Do these symptoms confirm lyme since the Augmentin seems to have quadrupled the tics?

 

I don't know what to think anymore. Dr. T says might be lyme, lets treat it. Local peditricians have no clue or say its probably false and it cant be lyme.

 

My head is going to explode.

 

 

My thought is that yes, the vocals can be caused by yeast.

Per me and fcefxr we have direct correlations to treating the gut and remittance of vocals.

Yes, Augmentin raises yeast to the point that when/if ds goes on it, he needs to have an antifungal with it. For my ds12 the yeast gets so bad on Aug. that it gets into the joints and causes severe pain.

If there is a disbiosis in the gut that could cause pans symptoms. And unfortunately sometimes as you treat the disbiosis the pans seems even worse. So you start to fear treating.

It is a vicious circle.

 

It is hard to confirm lymes, but i would definitely investigate further. I am not that lyme literate and not sure what your bands indicate.

Edited December 6, 2012 by Fixit

[Christianmom]

Dr. T says might be lyme, lets treat it.

 

So sorry for what you are going through. We have been where you are, and it will get better!

 

I would really caution you about Dr. T. He is NOT a lyme doctor and is not the doctor you want to be treating lyme. He a wonderful PANDAS doctor and a wonderful, compassionate person. But by his own admittance, he does not have expertise in treating lyme. You will need to find an LLMD. You will waste a lot of time (as I did) if you don't. Lyme and co-infections are very, very hard to treat and usually requires combo antibiotics. It takes a lot of experience in treating lyme to pick the right combination. Dr. T doesn't have that experience. (It is a little hard to tell that when talking to him because he tries so hard to please and wants so much for your child to get better.)

 

Also, wanted to mention that most LLMD's have a waiting list so you may want to get on a waiting list while you decide what to do next. If you tell them you can take a cancellation, they can usually get you in quicker.

 

My son's original Western Blot showed IgM P23, P66 and IgG P41. And he has lyme. So I would seriously consider lyme with your daughter based on her results. It is at least worth talking to an LLMD. Lyme use to be a scary word to me, but it isn't now. It is treatable and your daughter can recover. Hang in there!.

[Hopeny]

dsnow hugs to you, your daughter will recover. I seriously feel your pain. My DD was IGm 23 and 41+ which is CDC POSITIVE for Lyme, no questions asked. I saw this with a big hallelujah because had she not been CDC positive my DD would possibly have been in a psych ward by now. I am not saying we don't have bumps, bad days and regression but thanksfully she is a fairly happy 3rd grader now recovering and in aggressive treatment. So I say thank your lucky stars you got this result so you know what to treat.

 

I don't want to overwhelm you but pardon my french your ped has no *&^% idea of what they are talking about. There is a great book called Cure Unknown i would recommend to you when things settle, which will explain why your ped is misinformed but at present I would say don't waste a minute on the ped and move onto doctors who will help. You need a Lyme doctor - where are you located? My DD did not have vocal tics but others have, you need a team to help you sort all this out. Bartonella, a Lyme co-infection, can cause some of the symptoms you mention. Also how old is your DD? Sorry if you have answered all this before.

 

In my daughetr's case, Amoxicillin helped first and then sent her off the deep end, not kidding she told me she was afraid her clothes were going to hurt her. We switched to Augmentin/Biaxin combo and it worked well. Is Dr T open to trying this combo? It could hold you till you can get to a Lyme doctor. I echo what Christianmom wrote, and it goes for all the wonderful PANDAS docs, they are not Lyme experts. These illnesses are complex and you need a team. Our team we have a PANDAS doc, a Lyme doc, an integrative MD and a moderately Lyme Literate infectious disease doc. We all work with each other. I have finally crossing fingers also found a helpful ped.

 

Also are you using probiotics?

[dsnow777]

Thanks guys,

 

Yes, Dr. T is awesome. He said our next step was to find a Lyme specialist and Integrative Doctor near where we live, which we did but she's booked here until January 27th. I need some type of advice before then so today I have a phone consult with a Dr. who was a contributing writer to a book on Lyme I found. He's in San Francisco.

 

We're in Orange County, CA.

 

We are using probiotics.

 

I'm giving her 2 of these per day: http://www.jarrow.com/product/535/Jarro-Dophilus_Allergen-Free

and 2 of these per day: http://www.jarrow.com/product/265/Saccharomyces_Boulardii_MOS

 

She's also taking cod liver oil and the liquid natural calm vitamin.

 

Switched to GF/CF diet about 45 days ago although it hasn't seemed to make any difference in anything

 

Can't wait to see what the lyme doc has to say today.

[dsnow777]

 

My thought is that yes, the vocals can be caused by yeast.

Per me and fcefxr we have direct correlations to treating the gut and remittance of vocals.

Yes, Augmentin raises yeast to the point that when/if ds goes on it, he needs to have an antifungal with it. For my ds12 the yeast gets so bad on Aug. that it gets into the joints and causes severe pain.

If there is a disbiosis in the gut that could cause pans symptoms. And unfortunately sometimes as you treat the disbiosis the pans seems even worse. So you start to fear treating.

It is a vicious circle.

 

It is hard to confirm lymes, but i would definitely investigate further. I am not that lyme literate and not sure what your bands indicate.

 

Im curious...

 

I see this over and over again about how everyone seems to correlate yeast. But how do you even know if there is a yeast problem? I asked my pediatrician about this too and he said unless her stools are white or she has rashes that there is no yeast. He seems to believe or care about nothing. I need to find someone else.

 

The joint pain is another thing we had happen a few days BEFORE we started augmentin.

 

My daughter said her knee hurt. She didn't injure it in any way, it just hurt and she was limping around for 3-4 days. It is fine now. There was no swelling.

 

How do you go about finding out if there is a yeast issue?

Where/How do you even go about "treating the gut?

 

I can deal with everything else, we just wish so bad this vocal tic would go away so she can go back to school. It's so frequent and distracting now that there is no way she could be in a classroom at this point

[rowingmom]

The increased ticcing so soon after the start of abx would point to a herxheimer reaction to me. DD11's herx reactions have always included increased, and at the beginning of treatment extremely increased, ticcing. Along with the increased ticcing, her PANS symptoms show an increase as well. She is 1.5 years into lyme/bart treatment and we are pulsing her abx 3 days every week. By the second day her tics are back, but by the third are resolving.

 

We really up the detox protocols when we pulse. She also takes 125 billion probiotic cultures every day.

 

Really read the archives for this forum. There is lots of info on symptoms, detoxing and methylation support. Joint pain is a symptom of lyme. I'm glad you did get a positive lyme result and can now find a doctor who can help. Mainstream doctors really know nothing about this infection and it's ability to cause autoimmune neuological symptoms. This lyme/pandas/pitand forum is a great place to be.

Edited December 6, 2012 by rowingmom

[Hopeny]

Glad you have found a Lyme doc. You may want to consider dropping the cod liver oil and multivitamin until you get some guidance from integrative, CLO is from an organ, I can't recall the specifics which would be more compellling but i read an article on not giving this to children, it was long ago but whatever it said convinced me never to use it. Also with the vitamins, a multi made my DD worse. Some vitamins actually feed the Lyme spirochete and help it multiply.

Regarding knee pain, this is a a Lyme flag as well, with or without swelling. My daughter has had all of her extremely severe joint pain without swelling, her knee only swelled once. It is just different for everyone.

 

Thanks guys,

 

Yes, Dr. T is awesome. He said our next step was to find a Lyme specialist and Integrative Doctor near where we live, which we did but she's booked here until January 27th. I need some type of advice before then so today I have a phone consult with a Dr. who was a contributing writer to a book on Lyme I found. He's in San Francisco.

 

We're in Orange County, CA.

 

We are using probiotics.

 

I'm giving her 2 of these per day: http://www.jarrow.com/product/535/Jarro-Dophilus_Allergen-Free

and 2 of these per day: http://www.jarrow.com/product/265/Saccharomyces_Boulardii_MOS

 

She's also taking cod liver oil and the liquid natural calm vitamin.

 

Switched to GF/CF diet about 45 days ago although it hasn't seemed to make any difference in anything

 

Can't wait to see what the lyme doc has to say today.

[Fixit]

This is wear most people going through pandas/lymes are pioneers.

When the jt pain first happened to ds he was 5.

it was about his 6-8 time on amox...due to strep( of course a tic flair, and drs telling me no correlation)

anyway..the strep wouldnt go away so we started another round of it w/o abreak...and w/i a few days of the second round he had such jt pain we went to er, where they switched to zith and a steroid.

Every thing eventually remitted.

We continued with strep infections and pandas flares and complete remission in between.

With this Continued on set about 3.5 yrs ago, ds12.5 just turned 9.

i could not get anyone to give abx.

When ds was almost 10 about 1yr post onset..he was given biaxin(for myco p) and a steroid..thing got bad..extreme screeching etc(yeast and a i don't think he can tolerate biaxin.. about 2 weeks later started aug xr as dr did not think allergic to amox, but possible RF and in a week we had the SEVERE jt pain again...but..the steroid kicked in and his panda tics remitted..

Another dr wanted to try aug xr again and it thought he was nuts...he said, since pain was delayed, it was not an allergic reaction as we were to it but yeast creeping into joints and gave us an antifungal with it....well to my surpise no joint pain at all while we were on it the one month. But we stopped that abx and moved on.

We got the vocals to go away.

I thought go natural...tried GSE..1 drop....and screeching vocals started w/i 15 minutes...i wanted to die.

They lasted until we started VAnco and another antifungal and it took about 2 weeks to subside and another 2 to remit

NOw that i know..GSE really fights yeast..i think it was die off.

I cannot ever try GSE again due to PTSD.

 

It is very difficult to decide if jt pain is yeast or herx.

This is where you and your dr need to be a team...and unfortunately i think you need to be the lead, as the observer/practiioner/parent.

I also have 2 neuros, immuno, 2 Dans, llmd, 2 secondary dr llmds..one is also translates to family practic...and i think i found a DR of nutrition to help me further with diet and GET THIS ...he believes in PANDAS and LYME....but i dont't think he is keen on abx...want's your diet to be your medicine...we shall see.

If this DR is a home run i will let others know.

Wish me luck with this guy!!!