Re: For those of you with PANDAS kids-QUESTION-

[Guest guest]

Hi ,

My son has actually only been diagnosed by one doctor with Tourettes. The other

ones he has seen are saying he has transient tics from his ocd.They are not sure

about a dx of full blown tourettes.

My son is on Zithromax 500mg a day and Rifampin 300mg a day.The LLMD says he

does not feel he has PANDAS because with these antibiotics his ocd symptoms have

actually worsened rather than gotten better and he has been on these now for

almost a month.

He has seperation anxiety, sensory issues,and has started bed wetting again a

few months back.

His sudden onset of bad thoughts started at age 4.11, and his tics started in

April of last year.

I wouldn't mind if you posted this on another forum. I have been researching

these lab results for weeks and not getting very far.

Thanks so much for your help!

Hugs

Judy

[Guest guest]

Just commenting as I'm googling, LOL. Saw in more than one place/search that if

Lyme disease, then do NOT use steroids. Throwing this out there since PANDAS

treatment can include. Here's an excerpt from just one site:

" For example, the use of cortico-steroids will replicate the spirochetes

(bacteria) that cause Lyme Disease. Therefore, steroids are to be avoided where

Lyme Disease is suspected, and they are contraindicated. Some Lyme-literate

doctors believe that steroid use while Lyme bacteria are present will cause

chronic Lyme disease. But, ignorant of the possibility of Lyme bacteria,

Lyme-iliterate MDs have mistakenly prescribed steroids to control inflammation,

with calamitous results for their patients. "

Also Judy -- I wonder if the OCD is worse and it's sort of like when some start

an SSRI -- OCD gets worse before starting to get better....? If the OCD

wasn't worsening, I would just think " treat the Lyme disease and then see what's

left to treat " re possible PANDAS, just since Lyme can cause OC behaviors.

Just quick thinking as I type!

>

> Hi ,

>

> My son has actually only been diagnosed by one doctor with Tourettes. The

other ones he has seen are saying he has transient tics from his ocd.They are

not sure about a dx of full blown tourettes.

> My son is on Zithromax 500mg a day and Rifampin 300mg a day.The LLMD says he

does not feel he has PANDAS because with these antibiotics his ocd symptoms have

actually worsened rather than

[Guest guest]

Ok, I will post now. I am not as familiar with Lyme as I should be - so I'll be

sure to post the info about Steriods being contra-indicated, and that fact that

he has steriods 3x. Let's see what we get back. You have a pretty serious

issue here, since you have the Lyme to consider as well. I am so sorry to hear

this. Do you think that your Lyme specialist understands the OCD portion? I

know you are already all over this, but we did use ERP therapy along with the

antibiotics - some of the OCD seemed to become almost a habit & thus it was

still necessary to fight it even with medication.

It does sound like PANDAS, espec with the other symptoms below - have you read

Saving Sammy? For really tough cases, sometimes the Augmentin seems to work.

No studies on this, just antidotal cases (of which I know some of the parents).

Maybe your doc will try this. Otherwise, with 500 of Azith, you are already at

high levels. So frustrating, doctors, sometimes. I am sorry to ask this on a

public forum, so feel free to just ignore the question if you wish - but could

you afford one phone consult with a specialist for PANDAS (about $480, I think).

Then she could make recos & consult with your Lyme specialist & after the phone

consult you'd be back to just one doc (I know she will file insurance, not sure

how much they will pay back)? I know how financially draining this is.

Anyway, I'll go post this now. Best - in NC

>

> Hi ,

>

> My son has actually only been diagnosed by one doctor with Tourettes. The

other ones he has seen are saying he has transient tics from his ocd.They are

not sure about a dx of full blown tourettes.

> My son is on Zithromax 500mg a day and Rifampin 300mg a day.The LLMD says he

does not feel he has PANDAS because with these antibiotics his ocd symptoms have

actually worsened rather than gotten better and he has been on these now for

almost a month.

> He has seperation anxiety, sensory issues,and has started bed wetting again a

few months back.

> His sudden onset of bad thoughts started at age 4.11, and his tics started in

April of last year.

> I wouldn't mind if you posted this on another forum. I have been researching

these lab results for weeks and not getting very far.

> Thanks so much for your help!

> Hugs

> Judy

>

>

[Guest guest]

's question made me wonder too -- could your Lyme doctor call the PANDAS

specialist, like a consult, and include all that with his charges/billing

somehow, so no extra cost to you? some type of doctor consulting doctor thing,

if they even do that sort of thing without charging patients.

>

> Ok, I will post now. I am not as familiar with Lyme as I should be - so I'll

be sure to post the info about Steriods being contra-indicated, and that fact

that he has steriods 3x. Let's see what we get back. You have a pretty serious

issue here, since you have the Lyme to consider as well. I am so sorry to hear

this. Do you think that your Lyme specialist understands the OCD portion? I

know you are already all over this, but we did use ERP therapy along with the

antibiotics - some of the OCD seemed to become almost a habit & thus

[Guest guest]

Here is the best response:

R: I don't know where they live, but I'm guessing the East Coast. I would

suggest a consult with Fallon, MD, at Columbia (New York):

http://asp.cumc.columbia.edu/facdb/profile...ffil=Psychiatry. He is an expert on

anxiety disorder manifestations of Lyme Disease and also has some knowledge

about autoimmune OCD's. He's also a super nice guy. You could probably just call

him for advice (if you want to pursue it and don't feel comfortable doing it out

of the blue, I could connect you). It sounds to me like his symptoms could be

explained completely by the Lyme without invoking a PANDAS diagnosis, or they

could co-exist. Lyme reactions aren't limited to OCD - it can cause the full

spectrum of anxiety disorders, depression, even bipolar. Since most of these

things, in children, are associated with separation anxiety, eneurisis

(bed-wetting), etc., it would not surprise me at all if it could all be

explained by the Lyme. (End response)

If you want the connection, just email me & I'll get this mom's info for you.

susan@....

They also suggested that you ask for a switch from Azith to Augmentin - and

asked if you have had all Lyme tests run ( AND the Western blot...both IGG

and IGM) I'm sure you have - sounds like he was thorough. They are very

curious, and would like to know what other signs of Lyme did he have - what led

you there? And they asked if you have had a positive response to antibiotics in

the past.

Thanks - in NC.

[Guest guest]

Hi ,

Well, the Lyme doctor seemed to understand all about my son's intrusive

thoughts.

He is currently seeing a therapist for his ocd.

I did see the video of Saving Sammy. My son's Ocd is not that severe , but as

far as his " bad thoughts " go ,it is extreme.

Another $500 will be really tough right now. We just spent 2,000 on the lyme

doctor and have to go again in March , which will be another 500+, and I know

they are considering IV therapy for my son, which insurance will not cover.

 I was hoping someome could tell me by reading the titers if he has PANDAS, but

I realize it may not be that easy!!

Thanks for trying to help!!!

Hugs

Judy

[Guest guest]

Hi there Judy,

I am just commenting because my 9yo daughter has had similar symptoms w/Lyme and

we can't find any Lyme doctors around here. I've talked to so many docs and

psychiatrists, neurologists, etc and they all don't believe that " bad thought "

OCD can be caused from Lyme. They won't treat her w/any antibiotics. (We live in

New England)

I remember her having a blood test long ago (even before Lyme) where the titers

were similar to your sons. There was some concern by her doctor but she wrote it

off as from whatever infection she was in there for.... Are the titers high on

Lyme and Pandas both?

My daughter just started on Zoloft after being in therapy since January for the

bad thought OCD that happened a few months after she was diagnosed w/Lyme. The

bad thoughts were off the charts and they have waxed and waned since then. After

now being on Zoloft for 6 weeks, I finally feel like my little girl is surfacing

again. I wish there was some permanent solution to all of this!!

Thanks for listening, and hang in there... as a friend told me whose child had

OCD - the bad thoughts are only thoughts - they won't kill you. (Even though it

sure feels like it!)

Jen

[Guest guest]

I don't know as much about Lyme as I should, but it is critical that you get a

good diagnosis - you don't want late stage Lyme, if you can prevent it. The

doctor in NE that was recommended on another site, as really understanding Lyme

& Anxiety disorders, is Fallon, MD, at Columbia (New York):

http://asp.cumc.columbia.edu/facdb/profile...ffil=Psychiatry. He is an expert on

anxiety disorder manifestations of Lyme Disease and also has some knowledge

about autoimmune OCD's. He's also a super nice guy.

Hope this helps - in NC.

>

> Hi there Judy,

>

> I am just commenting because my 9yo daughter has had similar symptoms w/Lyme

and we can't find any Lyme doctors around here. I've talked to so many docs and

psychiatrists, neurologists, etc and they all don't believe that " bad thought "

OCD can be caused from Lyme. They won't treat her w/any antibiotics. (We live in

New England)

>

> I remember her having a blood test long ago (even before Lyme) where the

titers were similar to your sons. There was some concern by her doctor but she

wrote it off as from whatever infection she was in there for.... Are the titers

high on Lyme and Pandas both?

>

> My daughter just started on Zoloft after being in therapy since January for

the bad thought OCD that happened a few months after she was diagnosed w/Lyme.

The bad thoughts were off the charts and they have waxed and waned since then.

After now being on Zoloft for 6 weeks, I finally feel like my little girl is

surfacing again. I wish there was some permanent solution to all of this!!

>

> Thanks for listening, and hang in there... as a friend told me whose child had

OCD - the bad thoughts are only thoughts - they won't kill you. (Even though it

sure feels like it!)

>

> Jen

>