Interesting find (to me, anyway) / OCD

[Guest guest]

Article in the San Diego Reader Sept 8, 2011 about a man who received a kidney transplant.

This section about his pre-transplant condition caught my eye:

"Eventually, 's loss of liver function also meant that toxins such as ammonia, which are normally made harmless by the liver, began to build up in his body. This resulted in hepatic encephalopathy, a disorder of the brain that often causes confusion and altered levels of conciousness.

It's like your brain waves would say, 'I'm going to have a cup of tea', and then you would do something totally different, Rita [his wife] says. 'He would use the TV remote and think it was the lamp or the phone'."

[left out text about his on-line shop-a-holic condition where he blew $80k on things like multiple sets of towels, socks and sheets. "We have so many towels and sets of sheets, I had to give hundreds away"]

[And he bought eagle-dedecked items] "'I'd always liked them' s says. 'But before then I'd never had to have them'"

I continue to look for clues to minimize / cure my daughter's OCD....

[Guest guest]

Super interesting!

~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~

Article in the San Diego Reader Sept 8, 2011 about a man who received a kidney transplant.

This section about his pre-transplant condition caught my eye:

"Eventually, 's loss of liver function also meant that toxins such as ammonia, which are normally made harmless by the liver, began to build up in his body. This resulted in hepatic encephalopathy, a disorder of the brain that often causes confusion and altered levels of conciousness.

It's like your brain waves would say, 'I'm going to have a cup of tea', and then you would do something totally different, Rita [his wife] says. 'He would use the TV remote and think it was the lamp or the phone'."

[left out text about his on-line shop-a-holic condition where he blew $80k on things like multiple sets of towels, socks and sheets. "We have so many towels and sets of sheets, I had to give hundreds away"]

[And he bought eagle-dedecked items] "'I'd always liked them' s says. 'But before then I'd never had to have them'"

I continue to look for clues to minimize / cure my daughter's OCD....

[Guest guest]

Extremely super interesting!! Liver function! Liver function! Liver function!To: mb12valtrex Sent: Wednesday, September 14, 2011 5:46 PMSubject: Re: Interesting find (to me, anyway) / OCDSuper interesting!

~Antiviral Therapy 101~ gryffinstail.wordpress.com/ ~~ @Gryffins_Tail ~

Article in the San Diego Reader Sept 8, 2011 about a man who received a kidney transplant.

This section about his pre-transplant condition caught my eye:

"Eventually, 's loss of liver function also meant that toxins such as ammonia, which are normally made harmless by the liver, began to build up in his body. This resulted in hepatic encephalopathy, a disorder of the brain that often causes confusion and altered levels of conciousness.

It's like your brain waves would say, 'I'm going to have a cup of tea', and then you would do something totally different, Rita [his wife] says. 'He would use the TV remote and think it was the lamp or the phone'."

[left out text about his on-line shop-a-holic condition where he blew $80k on things like multiple sets of towels, socks and sheets. "We have so many towels and sets of sheets, I had to give hundreds away"]

[And he bought eagle-dedecked items] "'I'd always liked them' s says. 'But before then I'd never had to have them'"

I continue to look for clues to minimize / cure my daughter's OCD....

[Guest guest]

what a doofus I am...the article talks about "liver", and I type "kidney"...

Subject: Interesting find (to me, anyway) / OCD

Article in the San Diego Reader Sept 8, 2011 about a man who received a kidney LIVER transplant.

This section about his pre-transplant condition caught my eye:

"Eventually, 's loss of liver function also meant that toxins such as ammonia, which are normally made harmless by the liver, began to build up in his body. This resulted in hepatic encephalopathy, a disorder of the brain that often causes confusion and altered levels of conciousness.

It's like your brain waves would say, 'I'm going to have a cup of tea', and then you would do something totally different, Rita [his wife] says. 'He would use the TV remote and think it was the lamp or the phone'."

[left out text about his on-line shop-a-holic condition where he blew $80k on things like multiple sets of towels, socks and sheets. "We have so many towels and sets of sheets, I had to give hundreds away"]

[And he bought eagle-dedecked items] "'I'd always liked them' s says. 'But before then I'd never had to have them'"

I continue to look for clues to minimize / cure my daughter's OCD....

[Guest guest]

Have you looked into PANDAS or Lyme Disease? This is where we have landed with

my daughters OCD. I know it is obviously not the cause of all OCD, but we have

found the root of our issues- Lyme Disease.

Never would have believed it in a million years. Started on the PANDAS trail,

and when those treatments failed to sustain, we found Lyme.

>

> what a doofus I am...the article talks about " liver " , and I type " kidney " ...

>

> Subject: Interesting find (to me, anyway) / OCD

>

>

> Article in the San Diego Reader Sept 8, 2011 about a man who received a

kidney LIVER transplant.

>

> This section about his pre-transplant condition caught my eye:

>

> " Eventually, 's loss of liver function also meant that toxins such as

ammonia, which are normally made harmless by the liver, began to build up in his

body. This resulted in hepatic encephalopathy, a disorder of the brain that

often causes confusion and altered levels of conciousness.

>

> It's like your brain waves would say, 'I'm going to have a cup of tea', and

then you would do something totally different, Rita [his wife] says. 'He would

use the TV remote and think it was the lamp or the phone'. "

>

> [left out text about his on-line shop-a-holic condition where he blew $80k

on things like multiple sets of towels, socks and sheets. " We have so many

towels and sets of sheets, I had to give hundreds away " ]

>

> [And he bought eagle-dedecked items] " 'I'd always liked them' s says.

'But before then I'd never had to have them' "

>

> I continue to look for clues to minimize / cure my daughter's OCD....

>

[Guest guest]

Thanks for sharing! All hail news on liver function!

My husband's OCD is way down since doing our liver cleanses (and the humaworm

cleanse, where he passed large liver flukes). He is often a joy to be around

now- his OCD is down so much that it is affecting his work, which he used to

obsess on and thus overachieve at. :)

I wonder how liver function affects B12 absorption, since B12 absorption and OCD

are so closely linked??

>

> what a doofus I am...the article talks about " liver " , and I type " kidney " ...

>

> Subject: Interesting find (to me, anyway) / OCD

>

>

> Article in the San Diego Reader Sept 8, 2011 about a man who received a

kidney LIVER transplant.

>

> This section about his pre-transplant condition caught my eye:

>

> " Eventually, 's loss of liver function also meant that toxins such as

ammonia, which are normally made harmless by the liver, began to build up in his

body. This resulted in hepatic encephalopathy, a disorder of the brain that

often causes confusion and altered levels of conciousness.

>

> It's like your brain waves would say, 'I'm going to have a cup of tea', and

then you would do something totally different, Rita [his wife] says. 'He would

use the TV remote and think it was the lamp or the phone'. "

>

> [left out text about his on-line shop-a-holic condition where he blew $80k

on things like multiple sets of towels, socks and sheets. " We have so many

towels and sets of sheets, I had to give hundreds away " ]

>

> [And he bought eagle-dedecked items] " 'I'd always liked them' s says.

'But before then I'd never had to have them' "

>

> I continue to look for clues to minimize / cure my daughter's OCD....

>

[Guest guest]

Wow!

Thank you - hearing about your husband's success against OCD is very

encouraging.

Does he use CBT or ERP to help control anxiety and OCD?

Interesting find (to me, anyway) / OCD

>>

>>

>> Article in the San Diego Reader Sept 8, 2011 about a man who received a

>> kidney LIVER transplant.

>>

>> This section about his pre-transplant condition caught my eye:

>>

>> " Eventually, 's loss of liver function also meant that toxins

>> such as ammonia, which are normally made harmless by the liver, began to

>> build up in his body. This resulted in hepatic encephalopathy, a

>> disorder of the brain that often causes confusion and altered levels of

>> conciousness.

>>

>> It's like your brain waves would say, 'I'm going to have a cup of tea',

>> and then you would do something totally different, Rita [his wife] says.

>> 'He would use the TV remote and think it was the lamp or the phone'. "

>>

>> [left out text about his on-line shop-a-holic condition where he blew

>> $80k on things like multiple sets of towels, socks and sheets. " We have

>> so many towels and sets of sheets, I had to give hundreds away " ]

>>

>> [And he bought eagle-dedecked items] " 'I'd always liked them' s

>> says. 'But before then I'd never had to have them' "

>>

>> I continue to look for clues to minimize / cure my daughter's OCD....

>>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

I do need to get her tested for Lyme.

.....finding non-drug interventions for OCD is difficult, so

thank you for sharing.

Interesting find (to me, anyway) / OCD

>>

>>

>> Article in the San Diego Reader Sept 8, 2011 about a man who received a

>> kidney LIVER transplant.

>>

>> This section about his pre-transplant condition caught my eye:

>>

>> " Eventually, 's loss of liver function also meant that toxins

>> such as ammonia, which are normally made harmless by the liver, began to

>> build up in his body. This resulted in hepatic encephalopathy, a

>> disorder of the brain that often causes confusion and altered levels of

>> conciousness.

>>

>> It's like your brain waves would say, 'I'm going to have a cup of tea',

>> and then you would do something totally different, Rita [his wife] says.

>> 'He would use the TV remote and think it was the lamp or the phone'. "

>>

>> [left out text about his on-line shop-a-holic condition where he blew

>> $80k on things like multiple sets of towels, socks and sheets. " We have

>> so many towels and sets of sheets, I had to give hundreds away " ]

>>

>> [And he bought eagle-dedecked items] " 'I'd always liked them' s

>> says. 'But before then I'd never had to have them' "

>>

>> I continue to look for clues to minimize / cure my daughter's OCD....

>>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Hi . If I may ask, what symptoms made you decide it wasn't PANDAS but Lyme

instead?

Did you have her tested for Lyme?

We have been treating our daughter for PANDAS too .. and yet I still wonder

about Lyme especially as we don't realy see the strep connection.

Thanks,

Deb

'-- In mb12valtrex , " sarahsu9 " wrote:

>

> Have you looked into PANDAS or Lyme Disease? This is where we have landed

with my daughters OCD. I know it is obviously not the cause of all OCD, but we

have found the root of our issues- Lyme Disease.

> Never would have believed it in a million years. Started on the PANDAS trail,

and when those treatments failed to sustain, we found Lyme.

>

>

> >

> > what a doofus I am...the article talks about " liver " , and I type " kidney " ...

> >

> > Subject: Interesting find (to me, anyway) / OCD

> >

> >

> > Article in the San Diego Reader Sept 8, 2011 about a man who received a

kidney LIVER transplant.

> >

> > This section about his pre-transplant condition caught my eye:

> >

> > " Eventually, 's loss of liver function also meant that toxins such

as ammonia, which are normally made harmless by the liver, began to build up in

his body. This resulted in hepatic encephalopathy, a disorder of the brain that

often causes confusion and altered levels of conciousness.

> >

> > It's like your brain waves would say, 'I'm going to have a cup of tea',

and then you would do something totally different, Rita [his wife] says. 'He

would use the TV remote and think it was the lamp or the phone'. "

> >

> > [left out text about his on-line shop-a-holic condition where he blew $80k

on things like multiple sets of towels, socks and sheets. " We have so many

towels and sets of sheets, I had to give hundreds away " ]

> >

> > [And he bought eagle-dedecked items] " 'I'd always liked them' s

says. 'But before then I'd never had to have them' "

> >

> > I continue to look for clues to minimize / cure my daughter's OCD....

> >

>

[Guest guest]

you can have both, strep is a co infection in lymne

From: Deb

Sent: Friday, September 16, 2011 10:44 PM

To: mb12valtrex

Subject: Re: Interesting find (to me, anyway) / OCD

Hi . If I may ask, what symptoms made you decide it wasn't PANDAS but Lyme instead?Did you have her tested for Lyme?We have been treating our daughter for PANDAS too .. and yet I still wonder about Lyme especially as we don't realy see the strep connection.Thanks,Deb'-- In mb12valtrex , "sarahsu9" wrote:>> Have you looked into PANDAS or Lyme Disease? This is where we have landed with my daughters OCD. I know it is obviously not the cause of all OCD, but we have found the root of our issues- Lyme Disease.> Never would have believed it in a million years. Started on the PANDAS trail, and when those treatments failed to sustain, we found Lyme.> > > >> > what a doofus I am...the article talks about "liver", and I type "kidney"...> > > > Subject: Interesting find (to me, anyway) / OCD> > > > > > Article in the San Diego Reader Sept 8, 2011 about a man who received a kidney LIVER transplant.> > > > This section about his pre-transplant condition caught my eye:> > > > "Eventually, 's loss of liver function also meant that toxins such as ammonia, which are normally made harmless by the liver, began to build up in his body. This resulted in hepatic encephalopathy, a disorder of the brain that often causes confusion and altered levels of conciousness.> > > > It's like your brain waves would say, 'I'm going to have a cup of tea', and then you would do something totally different, Rita [his wife] says. 'He would use the TV remote and think it was the lamp or the phone'."> > > > [left out text about his on-line shop-a-holic condition where he blew $80k on things like multiple sets of towels, socks and sheets. "We have so many towels and sets of sheets, I had to give hundreds away"]> > > > [And he bought eagle-dedecked items] "'I'd always liked them' s says. 'But before then I'd never had to have them'" > > > > I continue to look for clues to minimize / cure my daughter's OCD....> >>

No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1410 / Virus Database: 1520/3901 - Release Date: 09/16/11

[Guest guest]

I have 2 children with lymne as well as myself cronic and we ALL have PANDAS, on our lymne tests our strep is our highest coinfection.......being our BIGGEST contribution to our lymne dx on the IGENEX test

From: Deb

Sent: Friday, September 16, 2011 10:44 PM

To: mb12valtrex

Subject: Re: Interesting find (to me, anyway) / OCD

Hi . If I may ask, what symptoms made you decide it wasn't PANDAS but Lyme instead?Did you have her tested for Lyme?We have been treating our daughter for PANDAS too .. and yet I still wonder about Lyme especially as we don't realy see the strep connection.Thanks,Deb'-- In mb12valtrex , "sarahsu9" wrote:>> Have you looked into PANDAS or Lyme Disease? This is where we have landed with my daughters OCD. I know it is obviously not the cause of all OCD, but we have found the root of our issues- Lyme Disease.> Never would have believed it in a million years. Started on the PANDAS trail, and when those treatments failed to sustain, we found Lyme.> > > >> > what a doofus I am...the article talks about "liver", and I type "kidney"...> > > > Subject: Interesting find (to me, anyway) / OCD> > > > > > Article in the San Diego Reader Sept 8, 2011 about a man who received a kidney LIVER transplant.> > > > This section about his pre-transplant condition caught my eye:> > > > "Eventually, 's loss of liver function also meant that toxins such as ammonia, which are normally made harmless by the liver, began to build up in his body. This resulted in hepatic encephalopathy, a disorder of the brain that often causes confusion and altered levels of conciousness.> > > > It's like your brain waves would say, 'I'm going to have a cup of tea', and then you would do something totally different, Rita [his wife] says. 'He would use the TV remote and think it was the lamp or the phone'."> > > > [left out text about his on-line shop-a-holic condition where he blew $80k on things like multiple sets of towels, socks and sheets. "We have so many towels and sets of sheets, I had to give hundreds away"]> > > > [And he bought eagle-dedecked items] "'I'd always liked them' s says. 'But before then I'd never had to have them'" > > > > I continue to look for clues to minimize / cure my daughter's OCD....> >>

No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1410 / Virus Database: 1520/3901 - Release Date: 09/16/11

[Guest guest]

Hi Deb-

My dd6 was clinically dx'd with PANDAS 1/11. She fit the criteria exactly,

although we did not have strep throat very often- her last time was when she was

2 1/2 (and she was 5 yrs. old at the time of dx)

We didn't have the normal child/overnight sudden onset- although I was thinking

it happened when she was 2 1/2....and just went on.

We did a month trial of daily Azithromycin, and at first: WOW! Huge

improvement. But then we backslid quite a bit on week 5-6.

Looking back, I think the Azith. dealt with some of the Lyme bacteria, but it

wasn't enough. We never had high strep titers (and I know not all pandas people

do) We tried a couple different antibiotics, no help. Eventually, in the

Spring, she was really incapacitated, rages that were beyone scary, so we went

to High Dose IVIG.

We did 2 of them. The improvements did not hold. And the first one was like

one large herx.

But what really led me to Lyme, and believe me, I thought NO WAY do we have

Lyme, is that I am on another PANDAS board (not a yahoo autism group) and SO

MANY of the Moms were finding out that the pandas treatments were not holding,

and they tested for Lyme, and it was Lyme disease all along. They got with an

LLMD, did Lyme treatment (or are going through it now) and it is lasting,

viable, treatment/cure.

I on a whim pulled a Western Blot through Lab Corp for my daughter. Band 18

came back positive, which is a spot on Lyme bacteria only band. Some say this

positive band alone means Lyme.

I then went through Igenex testing for her. Many positive Lyme only bands. She

has Lyme disease.

Then, I realized I have been living with serious Lyme symptoms myself for many

years, calling it everything else going on in my life.

Did my own Igenex testing, I came back positive, and off the charts positive for

the co-infection Bartonella, which is the bacteria infection that most resembles

pandas as far as neuro symptoms go.

I passed Lyme and co-infections on to my daughter through placenta while

pregnant, and breast feeding.

We are both now being treated by a Lyme Literate Medical Doctor, who in my

opinion, is like a DAN! Dr. x10, he knows the immune system so well, and deals

with every aspect of it.

That's our story. Never would have believed it myself. But we have found the

'core' issue, FINALLY.

> >

> > Have you looked into PANDAS or Lyme Disease? This is where we have landed

with my daughters OCD. I know it is obviously not the cause of all OCD, but we

have found the root of our issues- Lyme Disease.

> > Never would have believed it in a million years. Started on the PANDAS

trail, and when those treatments failed to sustain, we found Lyme.

> >

[Guest guest]

,How did you find the LLMD, as it seems they hide as well as Lyme does. LOLI would like to find one... we have a DAN but I haven't asked him if he is LLMD... I am bettingnot, if he has never mentioned it.

 

Hi Deb-

My dd6 was clinically dx'd with PANDAS 1/11. She fit the criteria exactly, although we did not have strep throat very often- her last time was when she was 2 1/2 (and she was 5 yrs. old at the time of dx)

We didn't have the normal child/overnight sudden onset- although I was thinking it happened when she was 2 1/2....and just went on.

We did a month trial of daily Azithromycin, and at first: WOW! Huge improvement. But then we backslid quite a bit on week 5-6.

Looking back, I think the Azith. dealt with some of the Lyme bacteria, but it wasn't enough. We never had high strep titers (and I know not all pandas people do) We tried a couple different antibiotics, no help. Eventually, in the Spring, she was really incapacitated, rages that were beyone scary, so we went to High Dose IVIG.

We did 2 of them. The improvements did not hold. And the first one was like one large herx.

But what really led me to Lyme, and believe me, I thought NO WAY do we have Lyme, is that I am on another PANDAS board (not a yahoo autism group) and SO MANY of the Moms were finding out that the pandas treatments were not holding, and they tested for Lyme, and it was Lyme disease all along. They got with an LLMD, did Lyme treatment (or are going through it now) and it is lasting, viable, treatment/cure.

I on a whim pulled a Western Blot through Lab Corp for my daughter. Band 18 came back positive, which is a spot on Lyme bacteria only band. Some say this positive band alone means Lyme.

I then went through Igenex testing for her. Many positive Lyme only bands. She has Lyme disease.

Then, I realized I have been living with serious Lyme symptoms myself for many years, calling it everything else going on in my life.

Did my own Igenex testing, I came back positive, and off the charts positive for the co-infection Bartonella, which is the bacteria infection that most resembles pandas as far as neuro symptoms go.

I passed Lyme and co-infections on to my daughter through placenta while pregnant, and breast feeding.

We are both now being treated by a Lyme Literate Medical Doctor, who in my opinion, is like a DAN! Dr. x10, he knows the immune system so well, and deals with every aspect of it.

That's our story. Never would have believed it myself. But we have found the 'core' issue, FINALLY.

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

Hi Toni,

If you go to the website 'Turn the Corner Foundation' and email them a request

for LLMD's in your area, they will get right back to you with a list.

>

> > **

> >

> >

> > Hi Deb-

> > My dd6 was clinically dx'd with PANDAS 1/11. She fit the criteria exactly,

> > although we did not have strep throat very often- her last time was when she

> > was 2 1/2 (and she was 5 yrs. old at the time of dx)

> > We didn't have the normal child/overnight sudden onset- although I was

> > thinking it happened when she was 2 1/2....and just went on.

> > We did a month trial of daily Azithromycin, and at first: WOW! Huge

> > improvement. But then we backslid quite a bit on week 5-6.

> > Looking back, I think the Azith. dealt with some of the Lyme bacteria, but

> > it wasn't enough. We never had high strep titers (and I know not all pandas

> > people do) We tried a couple different antibiotics, no help. Eventually, in

> > the Spring, she was really incapacitated, rages that were beyone scary, so

> > we went to High Dose IVIG.

> > We did 2 of them. The improvements did not hold. And the first one was like

> > one large herx.

> > But what really led me to Lyme, and believe me, I thought NO WAY do we have

> > Lyme, is that I am on another PANDAS board (not a yahoo autism group) and SO

> > MANY of the Moms were finding out that the pandas treatments were not

> > holding, and they tested for Lyme, and it was Lyme disease all along. They

> > got with an LLMD, did Lyme treatment (or are going through it now) and it is

> > lasting, viable, treatment/cure.

> > I on a whim pulled a Western Blot through Lab Corp for my daughter. Band 18

> > came back positive, which is a spot on Lyme bacteria only band. Some say

> > this positive band alone means Lyme.

> > I then went through Igenex testing for her. Many positive Lyme only bands.

> > She has Lyme disease.

> > Then, I realized I have been living with serious Lyme symptoms myself for

> > many years, calling it everything else going on in my life.

> >

> > Did my own Igenex testing, I came back positive, and off the charts

> > positive for the co-infection Bartonella, which is the bacteria infection

> > that most resembles pandas as far as neuro symptoms go.

> > I passed Lyme and co-infections on to my daughter through placenta while

> > pregnant, and breast feeding.

> > We are both now being treated by a Lyme Literate Medical Doctor, who in my

> > opinion, is like a DAN! Dr. x10, he knows the immune system so well, and

> > deals with every aspect of it.

> > That's our story. Never would have believed it myself. But we have found

> > the 'core' issue, FINALLY.

> >

> >

>

> --

> Toni

>

> ------

> Mind like a steel trap...

> Rusty and illegal in 37 states.

>

[Guest guest]

My son has been tested 2x for Lyme and Bartonella, both times with a negative (on all bands) outcome. I, however, tested positive for Lyme on Band 39 only (IgM), so technically negative. But I have read that is a Lyme specific band, so some think that would be a positive test. I've heard about Igenex a couple of times now and am wondering what is the difference in the testing? Hearing your story makes me wonder if I should retest. I really hope I don't have Lyme disease. :(RuthHi Deb-My dd6 was clinically dx'd with PANDAS 1/11. She fit the criteria exactly, although we did not have strep throat very often- her last time was when she was 2 1/2 (and she was 5 yrs. old at the time of dx)We didn't have the normal child/overnight sudden onset- although I was thinking it happened when she was 2 1/2....and just went on.We did a month trial of daily Azithromycin, and at first: WOW! Huge improvement. But then we backslid quite a bit on week 5-6.Looking back, I think the Azith. dealt with some of the Lyme bacteria, but it wasn't enough. We never had high strep titers (and I know not all pandas people do) We tried a couple different antibiotics, no help. Eventually, in the Spring, she was really incapacitated, rages that were beyone scary, so we went to High Dose IVIG.We did 2 of them. The improvements did not hold. And the first one was like one large herx.But what really led me to Lyme, and believe me, I thought NO WAY do we have Lyme, is that I am on another PANDAS board (not a yahoo autism group) and SO MANY of the Moms were finding out that the pandas treatments were not holding, and they tested for Lyme, and it was Lyme disease all along. They got with an LLMD, did Lyme treatment (or are going through it now) and it is lasting, viable, treatment/cure.I on a whim pulled a Western Blot through Lab Corp for my daughter. Band 18 came back positive, which is a spot on Lyme bacteria only band. Some say this positive band alone means Lyme.I then went through Igenex testing for her. Many positive Lyme only bands. She has Lyme disease.Then, I realized I have been living with serious Lyme symptoms myself for many years, calling it everything else going on in my life.Did my own Igenex testing, I came back positive, and off the charts positive for the co-infection Bartonella, which is the bacteria infection that most resembles pandas as far as neuro symptoms go.I passed Lyme and co-infections on to my daughter through placenta while pregnant, and breast feeding.We are both now being treated by a Lyme Literate Medical Doctor, who in my opinion, is like a DAN! Dr. x10, he knows the immune system so well, and deals with every aspect of it.That's our story. Never would have believed it myself. But we have found the 'core' issue, FINALLY.> >> > Have you looked into PANDAS or Lyme Disease? This is where we have landed with my daughters OCD. I know it is obviously not the cause of all OCD, but we have found the root of our issues- Lyme Disease.> > Never would have believed it in a million years. Started on the PANDAS trail, and when those treatments failed to sustain, we found Lyme.> >

[Guest guest]

Hi, Igenex testing is not cheap :-( But I have heard of people submitting the

bill to insurance, and getting some re-imbursement.

They are superior because they have extra Lyme only bands that the CDC/other

labs have taken off their tests- there was a Lyme vaccination a long time ago

(pulled off the market, not very many people received the vax, it was a diaster)

anyway, Igenex uses the 2 Lyme only bands that the others don't, they took them

out a long time ago because of the vax, have never put them back in- I am not

explaining the story well, but our lovely CDC has a contraversy going on with

Lyme. Of course.

If you go to the Igenex website, you can see the various kits- I started with

the basic 6050 panel for my dd6, then we saw the LLMD, and he wanted me to get

the whole panel (with co-infections) for me.

Igenex will send you the kit out, it does require you to get a Dr. signature on

it. There is also a new test that just came out, I'm sorry, I don't know the

name or the lab name, but it is touted as VERY good- with fast results- maybe

you could google for it.

HTH,

>

> > Hi Deb-

> > My dd6 was clinically dx'd with PANDAS 1/11. She fit the criteria

> > exactly, although we did not have strep throat very often- her last

> > time was when she was 2 1/2 (and she was 5 yrs. old at the time of dx)

> > We didn't have the normal child/overnight sudden onset- although I

> > was thinking it happened when she was 2 1/2....and just went on.

> > We did a month trial of daily Azithromycin, and at first: WOW! Huge

> > improvement. But then we backslid quite a bit on week 5-6.

> > Looking back, I think the Azith. dealt with some of the Lyme

> > bacteria, but it wasn't enough. We never had high strep titers (and

> > I know not all pandas people do) We tried a couple different

> > antibiotics, no help. Eventually, in the Spring, she was really

> > incapacitated, rages that were beyone scary, so we went to High Dose

> > IVIG.

> > We did 2 of them. The improvements did not hold. And the first one

> > was like one large herx.

> > But what really led me to Lyme, and believe me, I thought NO WAY do

> > we have Lyme, is that I am on another PANDAS board (not a yahoo

> > autism group) and SO MANY of the Moms were finding out that the

> > pandas treatments were not holding, and they tested for Lyme, and it

> > was Lyme disease all along. They got with an LLMD, did Lyme

> > treatment (or are going through it now) and it is lasting, viable,

> > treatment/cure.

> > I on a whim pulled a Western Blot through Lab Corp for my daughter.

> > Band 18 came back positive, which is a spot on Lyme bacteria only

> > band. Some say this positive band alone means Lyme.

> > I then went through Igenex testing for her. Many positive Lyme only

> > bands. She has Lyme disease.

> > Then, I realized I have been living with serious Lyme symptoms

> > myself for many years, calling it everything else going on in my life.

> >

> > Did my own Igenex testing, I came back positive, and off the charts

> > positive for the co-infection Bartonella, which is the bacteria

> > infection that most resembles pandas as far as neuro symptoms go.

> > I passed Lyme and co-infections on to my daughter through placenta

> > while pregnant, and breast feeding.

> > We are both now being treated by a Lyme Literate Medical Doctor, who

> > in my opinion, is like a DAN! Dr. x10, he knows the immune system so

> > well, and deals with every aspect of it.

> > That's our story. Never would have believed it myself. But we have

> > found the 'core' issue, FINALLY.

> >

> >

[Guest guest]

Awesome, thanks. I know there is a lab that does the testing close to my home, so I would hope also an LLMD close by too ;-)

 

Hi Toni,

If you go to the website 'Turn the Corner Foundation' and email them a request for LLMD's in your area, they will get right back to you with a list.

>

> > **

> >

> >

> > Hi Deb-

> > My dd6 was clinically dx'd with PANDAS 1/11. She fit the criteria exactly,

> > although we did not have strep throat very often- her last time was when she

> > was 2 1/2 (and she was 5 yrs. old at the time of dx)

> > We didn't have the normal child/overnight sudden onset- although I was

> > thinking it happened when she was 2 1/2....and just went on.

> > We did a month trial of daily Azithromycin, and at first: WOW! Huge

> > improvement. But then we backslid quite a bit on week 5-6.

> > Looking back, I think the Azith. dealt with some of the Lyme bacteria, but

> > it wasn't enough. We never had high strep titers (and I know not all pandas

> > people do) We tried a couple different antibiotics, no help. Eventually, in

> > the Spring, she was really incapacitated, rages that were beyone scary, so

> > we went to High Dose IVIG.

> > We did 2 of them. The improvements did not hold. And the first one was like

> > one large herx.

> > But what really led me to Lyme, and believe me, I thought NO WAY do we have

> > Lyme, is that I am on another PANDAS board (not a yahoo autism group) and SO

> > MANY of the Moms were finding out that the pandas treatments were not

> > holding, and they tested for Lyme, and it was Lyme disease all along. They

> > got with an LLMD, did Lyme treatment (or are going through it now) and it is

> > lasting, viable, treatment/cure.

> > I on a whim pulled a Western Blot through Lab Corp for my daughter. Band 18

> > came back positive, which is a spot on Lyme bacteria only band. Some say

> > this positive band alone means Lyme.

> > I then went through Igenex testing for her. Many positive Lyme only bands.

> > She has Lyme disease.

> > Then, I realized I have been living with serious Lyme symptoms myself for

> > many years, calling it everything else going on in my life.

> >

> > Did my own Igenex testing, I came back positive, and off the charts

> > positive for the co-infection Bartonella, which is the bacteria infection

> > that most resembles pandas as far as neuro symptoms go.

> > I passed Lyme and co-infections on to my daughter through placenta while

> > pregnant, and breast feeding.

> > We are both now being treated by a Lyme Literate Medical Doctor, who in my

> > opinion, is like a DAN! Dr. x10, he knows the immune system so well, and

> > deals with every aspect of it.

> > That's our story. Never would have believed it myself. But we have found

> > the 'core' issue, FINALLY.

> >

> >

>

> --

> Toni

>

> ------

> Mind like a steel trap...

> Rusty and illegal in 37 states.

>

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

My son did not have a single positive band until 6 months of antibiotics. The

dx for late stage lyme is entirely clinical and you must have lyme ruled out by

a LLMD. If a DAN or a gp tell you that you do not have lyme this is

meaningless.

If you have a positive 39, you have lyme.

Caryn

> > > >

> > > > Have you looked into PANDAS or Lyme Disease? This is where we

> > have landed with my daughters OCD. I know it is obviously not the

> > cause of all OCD, but we have found the root of our issues- Lyme

> > Disease.

> > > > Never would have believed it in a million years. Started on the

> > PANDAS trail, and when those treatments failed to sustain, we found

> > Lyme.

> > > >

> >

> >

> >

>

[Guest guest]

Igenex does many tests and if you have them all done it will be expensive. But,

the western blot, IGG and IGM are $200 combined and my insurance company

reimburses 80% for this. Not bad compared to all we have done. Most LLMD will

consider a IND to be a weak positive and that many bands alone are lyme specific

and therefore positive, although the lab will report positive or negative based

on federal guidelines which are irrelevent to your actual borrelia status.

Caryn

> > >

> > > > **

> > > >

> > > >

> > > > Hi Deb-

> > > > My dd6 was clinically dx'd with PANDAS 1/11. She fit the criteria

> > exactly,

> > > > although we did not have strep throat very often- her last time was

> > when she

> > > > was 2 1/2 (and she was 5 yrs. old at the time of dx)

> > > > We didn't have the normal child/overnight sudden onset- although I was

> > > > thinking it happened when she was 2 1/2....and just went on.

> > > > We did a month trial of daily Azithromycin, and at first: WOW! Huge

> > > > improvement. But then we backslid quite a bit on week 5-6.

> > > > Looking back, I think the Azith. dealt with some of the Lyme bacteria,

> > but

> > > > it wasn't enough. We never had high strep titers (and I know not all

> > pandas

> > > > people do) We tried a couple different antibiotics, no help.

> > Eventually, in

> > > > the Spring, she was really incapacitated, rages that were beyone scary,

> > so

> > > > we went to High Dose IVIG.

> > > > We did 2 of them. The improvements did not hold. And the first one was

> > like

> > > > one large herx.

> > > > But what really led me to Lyme, and believe me, I thought NO WAY do we

> > have

> > > > Lyme, is that I am on another PANDAS board (not a yahoo autism group)

> > and SO

> > > > MANY of the Moms were finding out that the pandas treatments were not

> > > > holding, and they tested for Lyme, and it was Lyme disease all along.

> > They

> > > > got with an LLMD, did Lyme treatment (or are going through it now) and

> > it is

> > > > lasting, viable, treatment/cure.

> > > > I on a whim pulled a Western Blot through Lab Corp for my daughter.

> > Band 18

> > > > came back positive, which is a spot on Lyme bacteria only band. Some

> > say

> > > > this positive band alone means Lyme.

> > > > I then went through Igenex testing for her. Many positive Lyme only

> > bands.

> > > > She has Lyme disease.

> > > > Then, I realized I have been living with serious Lyme symptoms myself

> > for

> > > > many years, calling it everything else going on in my life.

> > > >

> > > > Did my own Igenex testing, I came back positive, and off the charts

> > > > positive for the co-infection Bartonella, which is the bacteria

> > infection

> > > > that most resembles pandas as far as neuro symptoms go.

> > > > I passed Lyme and co-infections on to my daughter through placenta

> > while

> > > > pregnant, and breast feeding.

> > > > We are both now being treated by a Lyme Literate Medical Doctor, who in

> > my

> > > > opinion, is like a DAN! Dr. x10, he knows the immune system so well,

> > and

> > > > deals with every aspect of it.

> > > > That's our story. Never would have believed it myself. But we have

> > found

> > > > the 'core' issue, FINALLY.

> > > >

> > > >

> > >

> > > --

> > > Toni

> > >

> > > ------

> > > Mind like a steel trap...

> > > Rusty and illegal in 37 states.

> > >

> >

> >

> >

>

>

>

> --

> Toni

>

> ------

> Mind like a steel trap...

> Rusty and illegal in 37 states.

>

[Guest guest]

Caryn,I was able to get the name of two LLMD from the site sent me to.They are extremely expensive, more so than a DAN even. I know they are expert and all but we just do not have the money to plonk down, before we even have the test run?!!!

Could my first step be to try to get my regular integrative med doc to pull the Labcorp / covered labs and thenwork towards getting into the LLMD if I get some positives? I would be pretty pissed to go to the LLMD and spend 800$ plus on appts and tests to find out we don't have Lyme. lol

 

Igenex does many tests and if you have them all done it will be expensive. But, the western blot, IGG and IGM are $200 combined and my insurance company reimburses 80% for this. Not bad compared to all we have done. Most LLMD will consider a IND to be a weak positive and that many bands alone are lyme specific and therefore positive, although the lab will report positive or negative based on federal guidelines which are irrelevent to your actual borrelia status.

Caryn

> > >

> > > > **

> > > >

> > > >

> > > > Hi Deb-

> > > > My dd6 was clinically dx'd with PANDAS 1/11. She fit the criteria

> > exactly,

> > > > although we did not have strep throat very often- her last time was

> > when she

> > > > was 2 1/2 (and she was 5 yrs. old at the time of dx)

> > > > We didn't have the normal child/overnight sudden onset- although I was

> > > > thinking it happened when she was 2 1/2....and just went on.

> > > > We did a month trial of daily Azithromycin, and at first: WOW! Huge

> > > > improvement. But then we backslid quite a bit on week 5-6.

> > > > Looking back, I think the Azith. dealt with some of the Lyme bacteria,

> > but

> > > > it wasn't enough. We never had high strep titers (and I know not all

> > pandas

> > > > people do) We tried a couple different antibiotics, no help.

> > Eventually, in

> > > > the Spring, she was really incapacitated, rages that were beyone scary,

> > so

> > > > we went to High Dose IVIG.

> > > > We did 2 of them. The improvements did not hold. And the first one was

> > like

> > > > one large herx.

> > > > But what really led me to Lyme, and believe me, I thought NO WAY do we

> > have

> > > > Lyme, is that I am on another PANDAS board (not a yahoo autism group)

> > and SO

> > > > MANY of the Moms were finding out that the pandas treatments were not

> > > > holding, and they tested for Lyme, and it was Lyme disease all along.

> > They

> > > > got with an LLMD, did Lyme treatment (or are going through it now) and

> > it is

> > > > lasting, viable, treatment/cure.

> > > > I on a whim pulled a Western Blot through Lab Corp for my daughter.

> > Band 18

> > > > came back positive, which is a spot on Lyme bacteria only band. Some

> > say

> > > > this positive band alone means Lyme.

> > > > I then went through Igenex testing for her. Many positive Lyme only

> > bands.

> > > > She has Lyme disease.

> > > > Then, I realized I have been living with serious Lyme symptoms myself

> > for

> > > > many years, calling it everything else going on in my life.

> > > >

> > > > Did my own Igenex testing, I came back positive, and off the charts

> > > > positive for the co-infection Bartonella, which is the bacteria

> > infection

> > > > that most resembles pandas as far as neuro symptoms go.

> > > > I passed Lyme and co-infections on to my daughter through placenta

> > while

> > > > pregnant, and breast feeding.

> > > > We are both now being treated by a Lyme Literate Medical Doctor, who in

> > my

> > > > opinion, is like a DAN! Dr. x10, he knows the immune system so well,

> > and

> > > > deals with every aspect of it.

> > > > That's our story. Never would have believed it myself. But we have

> > found

> > > > the 'core' issue, FINALLY.

> > > >

> > > >

> > >

> > > --

> > > Toni

> > >

> > > ------

> > > Mind like a steel trap...

> > > Rusty and illegal in 37 states.

> > >

> >

> >

> >

>

>

>

> --

> Toni

>

> ------

> Mind like a steel trap...

> Rusty and illegal in 37 states.

>

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

Where did you find a list of docs? Can someone send a link? Rhanks!Sent from my iPhone

Caryn,I was able to get the name of two LLMD from the site sent me to.They are extremely expensive, more so than a DAN even. I know they are expert and all but we just do not have the money to plonk down, before we even have the test run?!!!

Could my first step be to try to get my regular integrative med doc to pull the Labcorp / covered labs and thenwork towards getting into the LLMD if I get some positives? I would be pretty pissed to go to the LLMD and spend 800$ plus on appts and tests to find out we don't have Lyme. lol

Igenex does many tests and if you have them all done it will be expensive. But, the western blot, IGG and IGM are $200 combined and my insurance company reimburses 80% for this. Not bad compared to all we have done. Most LLMD will consider a IND to be a weak positive and that many bands alone are lyme specific and therefore positive, although the lab will report positive or negative based on federal guidelines which are irrelevent to your actual borrelia status.

Caryn

> > >

> > > > **

> > > >

> > > >

> > > > Hi Deb-

> > > > My dd6 was clinically dx'd with PANDAS 1/11. She fit the criteria

> > exactly,

> > > > although we did not have strep throat very often- her last time was

> > when she

> > > > was 2 1/2 (and she was 5 yrs. old at the time of dx)

> > > > We didn't have the normal child/overnight sudden onset- although I was

> > > > thinking it happened when she was 2 1/2....and just went on.

> > > > We did a month trial of daily Azithromycin, and at first: WOW! Huge

> > > > improvement. But then we backslid quite a bit on week 5-6.

> > > > Looking back, I think the Azith. dealt with some of the Lyme bacteria,

> > but

> > > > it wasn't enough. We never had high strep titers (and I know not all

> > pandas

> > > > people do) We tried a couple different antibiotics, no help.

> > Eventually, in

> > > > the Spring, she was really incapacitated, rages that were beyone scary,

> > so

> > > > we went to High Dose IVIG.

> > > > We did 2 of them. The improvements did not hold. And the first one was

> > like

> > > > one large herx.

> > > > But what really led me to Lyme, and believe me, I thought NO WAY do we

> > have

> > > > Lyme, is that I am on another PANDAS board (not a yahoo autism group)

> > and SO

> > > > MANY of the Moms were finding out that the pandas treatments were not

> > > > holding, and they tested for Lyme, and it was Lyme disease all along.

> > They

> > > > got with an LLMD, did Lyme treatment (or are going through it now) and

> > it is

> > > > lasting, viable, treatment/cure.

> > > > I on a whim pulled a Western Blot through Lab Corp for my daughter.

> > Band 18

> > > > came back positive, which is a spot on Lyme bacteria only band. Some

> > say

> > > > this positive band alone means Lyme.

> > > > I then went through Igenex testing for her. Many positive Lyme only

> > bands.

> > > > She has Lyme disease.

> > > > Then, I realized I have been living with serious Lyme symptoms myself

> > for

> > > > many years, calling it everything else going on in my life.

> > > >

> > > > Did my own Igenex testing, I came back positive, and off the charts

> > > > positive for the co-infection Bartonella, which is the bacteria

> > infection

> > > > that most resembles pandas as far as neuro symptoms go.

> > > > I passed Lyme and co-infections on to my daughter through placenta

> > while

> > > > pregnant, and breast feeding.

> > > > We are both now being treated by a Lyme Literate Medical Doctor, who in

> > my

> > > > opinion, is like a DAN! Dr. x10, he knows the immune system so well,

> > and

> > > > deals with every aspect of it.

> > > > That's our story. Never would have believed it myself. But we have

> > found

> > > > the 'core' issue, FINALLY.

> > > >

> > > >

> > >

> > > --

> > > Toni

> > >

> > > ------

> > > Mind like a steel trap...

> > > Rusty and illegal in 37 states.

> > >

> >

> >

> >

>

>

>

> --

> Toni

>

> ------

> Mind like a steel trap...

> Rusty and illegal in 37 states.

>

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

Caryn is right in what she says-

What I did to start (not the best way, but just what I did)

was to pull a labcorp Western Blot ordered from:

Private MD Labs (online)

It does NOT require a Dr. signature.

They sent me the order, I went to a labcorp lab, they did the draw, sent it in

to me, I got the results directly.

My dd6's was positive on band 23 on this test (I think I said 18, that was

actually one of her Igenex)

Anyway, band 23 is lyme bacteria ONLY, some will say with just this band

positive, it means lyme.

My Dad was visiting at the time all this was going on; he said: 'What? You

think she has Lyme??'

I said: 'With this band 23 positive, I would be very remiss if I did not look

into it further.'

And lo and behold, we both have Lyme and bartonella.

HTH,

>

> > **

> >

> >

> > Igenex does many tests and if you have them all done it will be expensive.

> > But, the western blot, IGG and IGM are $200 combined and my insurance

> > company reimburses 80% for this. Not bad compared to all we have done. Most

> > LLMD will consider a IND to be a weak positive and that many bands alone are

> > lyme specific and therefore positive, although the lab will report positive

> > or negative based on federal guidelines which are irrelevent to your actual

> > borrelia status.

> >

> > Caryn

> >

[Guest guest]

Thanks . (?) - Turn the Corner Foundation... email them and they get back pretty quick...

 

Caryn is right in what she says-

What I did to start (not the best way, but just what I did)

was to pull a labcorp Western Blot ordered from:

Private MD Labs (online)

It does NOT require a Dr. signature.

They sent me the order, I went to a labcorp lab, they did the draw, sent it in to me, I got the results directly.

My dd6's was positive on band 23 on this test (I think I said 18, that was actually one of her Igenex)

Anyway, band 23 is lyme bacteria ONLY, some will say with just this band positive, it means lyme.

My Dad was visiting at the time all this was going on; he said: 'What? You think she has Lyme??'

I said: 'With this band 23 positive, I would be very remiss if I did not look into it further.'

And lo and behold, we both have Lyme and bartonella.

HTH,

>

> > **

> >

> >

> > Igenex does many tests and if you have them all done it will be expensive.

> > But, the western blot, IGG and IGM are $200 combined and my insurance

> > company reimburses 80% for this. Not bad compared to all we have done. Most

> > LLMD will consider a IND to be a weak positive and that many bands alone are

> > lyme specific and therefore positive, although the lab will report positive

> > or negative based on federal guidelines which are irrelevent to your actual

> > borrelia status.

> >

> > Caryn

> >

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

Thanks!RuthSent from my iPhone

Thanks . (?) - Turn the Corner Foundation... email them and they get back pretty quick...

Caryn is right in what she says-

What I did to start (not the best way, but just what I did)

was to pull a labcorp Western Blot ordered from:

Private MD Labs (online)

It does NOT require a Dr. signature.

They sent me the order, I went to a labcorp lab, they did the draw, sent it in to me, I got the results directly.

My dd6's was positive on band 23 on this test (I think I said 18, that was actually one of her Igenex)

Anyway, band 23 is lyme bacteria ONLY, some will say with just this band positive, it means lyme.

My Dad was visiting at the time all this was going on; he said: 'What? You think she has Lyme??'

I said: 'With this band 23 positive, I would be very remiss if I did not look into it further.'

And lo and behold, we both have Lyme and bartonella.

HTH,

>

> > **

> >

> >

> > Igenex does many tests and if you have them all done it will be expensive.

> > But, the western blot, IGG and IGM are $200 combined and my insurance

> > company reimburses 80% for this. Not bad compared to all we have done. Most

> > LLMD will consider a IND to be a weak positive and that many bands alone are

> > lyme specific and therefore positive, although the lab will report positive

> > or negative based on federal guidelines which are irrelevent to your actual

> > borrelia status.

> >

> > Caryn

> >

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

Oh duh, " Ruth " :-)I should have looked at the email address. :-)

 

Thanks!Ruth-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.