Update: OCD/PANDAS exacerbation

[Guest guest]

Hi,

I haven't posted in a couple of months...been too exhausted. My dd8 has been in

a PANDAS exacerbation since Nov/Dec. Her germ contamination fears have been

pretty intense.

We talked with our PANDAS doc (Dr. in December. He thought her exacerbation

could be due to her exposure to strep in her brother, who, at the time had an

active strep infection. He thought she should get better soon after ds was

treated. DS's infection proved to be a bit tough to get rid of - it may even

still be there. However, in January, he seemed a lot better. DD8 unfortunately

did not. At that point, Dr. B. said we could try a steroid dd8 to calm her

immune system down. So we tried a 21 day tapered burst. She tolerated the

medicine fine and was pretty good natured through the whole thing, but her OCD

did not improve at all. It probably got worse. Since we stopped the steroid her

OCD has not improved, but her emotional lability has started returning...more

bouts of anger and/or crying.

When we saw Dr. B in February. He said the steroid should have worked. The fact

that it didn't made him think that her immune system still reacting to some sort

of infection - either in dd8 or around her. He ordered more tests, including

IgeneX testing for Lyme and other tick borne illnesses.

Yesterday, Dr. B informed us that dd8 tested positive for Bartonella. We are

still waiting for Western Blot results. He said we should see an LLMD and

recommended Dr. J in New Haven, CT. I am going to make an appointment with Dr.

J., but I am also looking into LLMDs in the Boston area.

Until we can see an LLMD, Dr. B. switched dd8 back to Zithromax (1tsp/day) and

added Bactrim (1 tsp 2x/day). Hopefully this change will help make a difference.

This Bartonella news was a big surprise to us. I really did not suspect she

would be positive for Lyme or any other tick born illness. It's a little scary,

since I know the road is long for recovery. But it is good to have a new

direction and a possible explanation for why she has not been able to get well

again. She did so well, so quickly last year after we started PANDAS treatment.

Going backward has been really tough on all of us. (I know everyone here can

relate).

So, that's it for now.

I wish everyone well.

Kara

[Guest guest]

Kara, has she done IVIG in the past? If not, is that something suggested for

the future?

I know Judy's son went through it, but didn't have improvement. I think they

recommended more, but the cost (info she shared) was staggering.

So, the doc thinks the strep had nothing to do with it at this point. . .That is

was lyme from the beginning of the recent setback?

Or is he thinking it's been lyme all along? Sorry for all the questions, just

curious what he's suspecting at this point.

Is she able to do any ERP? Or is it all just too intense? Poor kiddo. (

Thanks for the update. So sorry for the setback. It's always so hard when that

happens.

I hate the survival mode where you are completely exhausted. We've been there.

I hope you see some improvement with the Zithromax. Let us know.

BJ

>

> Hi,

>

> I haven't posted in a couple of months...been too exhausted. My dd8 has been

in a PANDAS exacerbation since Nov/Dec. Her germ contamination fears have been

pretty intense.

>

> We talked with our PANDAS doc (Dr. in December. He thought her exacerbation

could be due to her exposure to strep in her brother, who, at the time had an

active strep infection. He thought she should get better soon after ds was

treated. DS's infection proved to be a bit tough to get rid of - it may even

still be there. However, in January, he seemed a lot better. DD8 unfortunately

did not. At that point, Dr. B. said we could try a steroid dd8 to calm her

immune system down. So we tried a 21 day tapered burst. She tolerated the

medicine fine and was pretty good natured through the whole thing, but her OCD

did not improve at all. It probably got worse. Since we stopped the steroid her

OCD has not improved, but her emotional lability has started returning...more

bouts of anger and/or crying.

>

> When we saw Dr. B in February. He said the steroid should have worked. The

fact that it didn't made him think that her immune system still reacting to some

sort of infection - either in dd8 or around her. He ordered more tests,

including IgeneX testing for Lyme and other tick borne illnesses.

>

> Yesterday, Dr. B informed us that dd8 tested positive for Bartonella. We are

still waiting for Western Blot results. He said we should see an LLMD and

recommended Dr. J in New Haven, CT. I am going to make an appointment with Dr.

J., but I am also looking into LLMDs in the Boston area.

>

> Until we can see an LLMD, Dr. B. switched dd8 back to Zithromax (1tsp/day) and

added Bactrim (1 tsp 2x/day). Hopefully this change will help make a difference.

>

> This Bartonella news was a big surprise to us. I really did not suspect she

would be positive for Lyme or any other tick born illness. It's a little scary,

since I know the road is long for recovery. But it is good to have a new

direction and a possible explanation for why she has not been able to get well

again. She did so well, so quickly last year after we started PANDAS treatment.

Going backward has been really tough on all of us. (I know everyone here can

relate).

>

> So, that's it for now.

>

> I wish everyone well.

>

> Kara

>

[Guest guest]

Hi Kara! Just sent a reply but then my internet gave me " that page " after I hit

send and don't see it; so if this ends up a duplicate, sorry!

It's good to hear from you though sorry it's been so rough these past months!

I hate that Lyme showed up too. I wonder if that happened/occurred after the

PANDAS, maybe it won't be so hard to treat then (rather than if she'd had it

really long-term...). I hope the med change makes a difference. Hate that it's

something else you now have to treat! SIGH!

Do keep us updated when you can catch a breath. We all know how OCD can exhaust

us parents, physically and emotionally.

(((hugs)))

[Guest guest]

We have not done IVIG and Dr. B. said IVIG is not even an option until we are

sure she is cleared of Bartonella.

We'll never know for sure, but he thinks the Bartonella came after the

strep/PANDAS. She did really well through the summer and he doubts that if she

had Bartonella at that point, she would have gotten as far as she did. We do

live in the northeast and spent some time at a woodsy cottage in August, so she

could very well have gotten a tick bite then...But again, we will never know for

sure when. I guess it's kind of a moot point, now. We know she has it and now

need to deal with it.

She can do some ERP, but not much. At this point whatever she overcomes is

quickly replaced by somthing else. Hopefully that will change. Last year, after

she started the abx, she was able to do ERP and it definitely helped.

Thanks for your thoughts and kind words.

Kara

>

> Kara, has she done IVIG in the past? If not, is that something suggested for

the future?

>

> I know Judy's son went through it, but didn't have improvement. I think they

recommended more, but the cost (info she shared) was staggering.

>

> So, the doc thinks the strep had nothing to do with it at this point. . .That

is was lyme from the beginning of the recent setback?

>

> Or is he thinking it's been lyme all along? Sorry for all the questions, just

curious what he's suspecting at this point.

>

> Is she able to do any ERP? Or is it all just too intense? Poor kiddo. (

>

[Guest guest]

what test is done 2 clear them of bartonella?

> We have not done IVIG and Dr. B. said IVIG is not even an option until we are

sure she is cleared of Bartonella.

>

> We'll never know for sure, but he thinks the Bartonella came after the

strep/PANDAS. She did really well through the summer and he doubts that if she

had Bartonella at that point, she would have gotten as far as she did. We do

live in the northeast and spent some time at a woodsy cottage in August, so she

could very well have gotten a tick bite then...But again, we will never know for

sure when. I guess it's kind of a moot point, now. We know she has it and now

need to deal with it.

>

> She can do some ERP, but not much. At this point whatever she overcomes is

quickly replaced by somthing else. Hopefully that will change. Last year, after

she started the abx, she was able to do ERP and it definitely helped.

>

> Thanks for your thoughts and kind words.

>

> Kara

>

>

> >

> > Kara, has she done IVIG in the past? If not, is that something suggested for

the future?

> >

> > I know Judy's son went through it, but didn't have improvement. I think they

recommended more, but the cost (info she shared) was staggering.

> >

> > So, the doc thinks the strep had nothing to do with it at this point. .

..That is was lyme from the beginning of the recent setback?

> >

> > Or is he thinking it's been lyme all along? Sorry for all the questions,

just curious what he's suspecting at this point.

> >

> > Is she able to do any ERP? Or is it all just too intense? Poor kiddo. (

> >

>

>

[Guest guest]

Hi Kara,

Good to hear from you and to know you got some answers, albeit not necessarily

the kind you want. As hard as it is to hear that your daughter has lyme, at

least now you know what to target, and hopefully will start to move forward

again.

I really hope your daughter responds rapidly to the latest treatment Kara. Hang

in there!

Warmly,

Barb

>

> Hi,

>

> I haven't posted in a couple of months...been too exhausted. My dd8 has been

in a PANDAS exacerbation since Nov/Dec. Her germ contamination fears have been

pretty intense.

>

> We talked with our PANDAS doc (Dr. in December. He thought her exacerbation

could be due to her exposure to strep in her brother, who, at the time had an

active strep infection. He thought she should get better soon after ds was

treated. DS's infection proved to be a bit tough to get rid of - it may even

still be there. However, in January, he seemed a lot better. DD8 unfortunately

did not. At that point, Dr. B. said we could try a steroid dd8 to calm her

immune system down. So we tried a 21 day tapered burst. She tolerated the

medicine fine and was pretty good natured through the whole thing, but her OCD

did not improve at all. It probably got worse. Since we stopped the steroid her

OCD has not improved, but her emotional lability has started returning...more

bouts of anger and/or crying.

>

> When we saw Dr. B in February. He said the steroid should have worked. The

fact that it didn't made him think that her immune system still reacting to some

sort of infection - either in dd8 or around her. He ordered more tests,

including IgeneX testing for Lyme and other tick borne illnesses.

>

> Yesterday, Dr. B informed us that dd8 tested positive for Bartonella. We are

still waiting for Western Blot results. He said we should see an LLMD and

recommended Dr. J in New Haven, CT. I am going to make an appointment with Dr.

J., but I am also looking into LLMDs in the Boston area.

>

> Until we can see an LLMD, Dr. B. switched dd8 back to Zithromax (1tsp/day) and

added Bactrim (1 tsp 2x/day). Hopefully this change will help make a difference.

>

> This Bartonella news was a big surprise to us. I really did not suspect she

would be positive for Lyme or any other tick born illness. It's a little scary,

since I know the road is long for recovery. But it is good to have a new

direction and a possible explanation for why she has not been able to get well

again. She did so well, so quickly last year after we started PANDAS treatment.

Going backward has been really tough on all of us. (I know everyone here can

relate).

>

> So, that's it for now.

>

> I wish everyone well.

>

> Kara

>

[Guest guest]

I don’t always read the list these days but I saw your post and wanted you to

know that Dr. is a FANTASTIC Dr. and you will not regret seeing him or

paying him his fee. He is very thorough and helpful. His office staff has been

very good about getting back to me. My dd also has PANDAS, Lyme, and

Bartonella. If you want to talk more about it, contact me off list at

game-enthusiast@...

[Guest guest]

Hi Wilma,

I'm not sure I understand your question. Do you mean what test is done to see if

they are cleared of Bartonella? Or what medication is used to clear?

This is all so new to me...and of course I didn't think to ask all the questions

I should have at the time. Dr. B. wants us to see a Lyme specialist for the

Bartonella treatment. I imagine it will involve some sort of antibiotic rotation

and some detoxification...but I don't know.

I don't know how we will determine if she is cleared...whether it will just be a

clinical determination based on symptoms or whether we will do the IgeneX test

again. It's certainly a good question. I'm going to add it to my list to ask the

doctor.

Kara

>

[Guest guest]

Hi ,

Thanks for your post. I am going to call Dr. J today again (they just returned

my initial call yesterday and I missed their call.). In the meantime, I may see

a local doctor recommended by a few people in on a Lyme board. She doesn't treat

Lyme exclusively, but it seems like she knows her stuff. The key think is I can

get in with her next week.

If you don't mine, I may email you with more questions off-line.

Kara

>

> I don’t always read the list these days but I saw your post and wanted you

to know that Dr. is a FANTASTIC Dr. and you will not regret seeing him or

paying him his fee. He is very thorough and helpful. His office staff has been

very good about getting back to me. My dd also has PANDAS, Lyme, and

Bartonella. If you want to talk more about it, contact me off list at

game-enthusiast@...

>

>

>

>

[Guest guest]

Thanks, Barb. I'll try to keep you posted.

Hope all is well with you.

Kara

>

> Hi Kara,

>

> Good to hear from you and to know you got some answers, albeit not necessarily

the kind you want. As hard as it is to hear that your daughter has lyme, at

least now you know what to target, and hopefully will start to move forward

again.

>

> I really hope your daughter responds rapidly to the latest treatment Kara.

Hang in there!

>

> Warmly,

> Barb

>

[Guest guest]

Kara,

Good work. Do you go on the Latitudes website for the Lyme group?

> Hi Kara,

>

> Good to hear from you and to know you got some answers, albeit not necessarily

the kind you want. As hard as it is to hear that your daughter has lyme, at

least now you know what to target, and hopefully will start to move forward

again.

>

> I really hope your daughter responds rapidly to the latest treatment Kara.

Hang in there!

>

> Warmly,

> Barb

>

>

> >

> > Hi,

> >

> > I haven't posted in a couple of months...been too exhausted. My dd8 has been

in a PANDAS exacerbation since Nov/Dec. Her germ contamination fears have been

pretty intense.

> >

> > We talked with our PANDAS doc (Dr. in December. He thought her

exacerbation could be due to her exposure to strep in her brother, who, at the

time had an active strep infection. He thought she should get better soon after

ds was treated. DS's infection proved to be a bit tough to get rid of - it may

even still be there. However, in January, he seemed a lot better. DD8

unfortunately did not. At that point, Dr. B. said we could try a steroid dd8 to

calm her immune system down. So we tried a 21 day tapered burst. She tolerated

the medicine fine and was pretty good natured through the whole thing, but her

OCD did not improve at all. It probably got worse. Since we stopped the steroid

her OCD has not improved, but her emotional lability has started

returning...more bouts of anger and/or crying.

> >

> > When we saw Dr. B in February. He said the steroid should have worked. The

fact that it didn't made him think that her immune system still reacting to some

sort of infection - either in dd8 or around her. He ordered more tests,

including IgeneX testing for Lyme and other tick borne illnesses.

> >

> > Yesterday, Dr. B informed us that dd8 tested positive for Bartonella. We are

still waiting for Western Blot results. He said we should see an LLMD and

recommended Dr. J in New Haven, CT. I am going to make an appointment with Dr.

J., but I am also looking into LLMDs in the Boston area.

> >

> > Until we can see an LLMD, Dr. B. switched dd8 back to Zithromax (1tsp/day)

and added Bactrim (1 tsp 2x/day). Hopefully this change will help make a

difference.

> >

> > This Bartonella news was a big surprise to us. I really did not suspect she

would be positive for Lyme or any other tick born illness. It's a little scary,

since I know the road is long for recovery. But it is good to have a new

direction and a possible explanation for why she has not been able to get well

again. She did so well, so quickly last year after we started PANDAS treatment.

Going backward has been really tough on all of us. (I know everyone here can

relate).

> >

> > So, that's it for now.

> >

> > I wish everyone well.

> >

> > Kara

> >

>

>

[Guest guest]

Hi Wilma,

Yes, I spend a lot of time now on Latitudes Lyme as well as the PANDAS board...

thanks for pointint it out just in case, though.

Kara