Re: Re: Confused about latest DNA stool test results

February 15, 2011

already gave you the list for viral titers. A starter test for PANDAS is ASO titers and AntiDnase titers. Titers are antibodies, not specific to viruses or bacteria only but rather to a specific *thing*. Their called titers no matter what you are testing.Keep in mind that coming up negative on any of these doesn't always mean much.

Cheryl ~http://www.gryffins-tail.blogspot.com~~@Gryffins_Tail~

What test would I request for that? Strep is a bacteria, so I assume it's not titers, is it?

>

> > We recently did the Metamtrix DNA stool test with our 2 and 5 year olds. Our 5 year old had battled with Clostridia and yeast since he was at least 3 when we first knew to test him with an OAT and another stool test more recently.

> >

> > So you would think it would be good news to have a stool test come back totally clear of everything!! But instead, I am confused. He is colonizing all good bacteria (not all high, but it's there none the less), has NO opportunistic bacteria, NO yeast and NO parasites!! So yes, I am very glad for this, it means we totally eradicated the Clostridia which was a NASTY bug to deal with. And both my husband and I have commented on how well he's been doing lately, BUT we still have some weird things happening with him and I beginning to think we may still be contending with viral problems, but we have never actually done any viral titer testing. I think this may be a good time to consider doing so. Can anyone tell me what titers to have pulled and if it's really expensive, because I am sure our insurance won't cover it.

> >

> > This is what we are still noticing with him: he is getting sick more frequently than he used to (although he fights them pretty fast), when he gets a virus his sensory stuff comes back and what I thought was a yeast symptom (swatting at his ears and head) may not even be a yeast sign. He also gets wildly moody when he's sick. His moods are much better than they used to be, but we are still seeing an occasional low frustration threshold and we are waiting for the results of a handwriting evaluation, because he seems to struggle with writing, although he loves to read and "write" books and cards. He just gets frustrated with himself. About two years ago when this all started, we had him evaluated and he had delayed fine motor skills.

> >

> > So I guess I don't know, if some of this is (aside from the delayed motor skills) normal or not and if we should be addressing virals more. We currently give him 500mg of OLE two to three times a day. He's also still reacting to his antimicrobials, meaning, if we go off them (like for the stool test) he has die-off of some sort when going back on them. Why would this happen, if he doesn't have yeast or bacteria, can virals cause that same sort of reaction? Oh and I tried to add Monolaurin in a few times and even one pellet causes something, die-off or mood swings. Reminds me of when we started killing off the Clostridia. He did have the MMR and varicela vaccinations so I was thinking he could have a measles or rubella infection. When we started the OLE, ten days into using it, he broke out in a rash all over his trunk, like the chicken pox which is how he also reacted to his vaccinations. Unfortunately, the MMR and varicela were given at the same time....I know, if only I knew then what I know now!

> >

> > The other thing I am considering here is Lyme. He was tested once when he was one and reacted to his 12 month vaccinations with a month of things including various rashes and fevers, his eyelid swelled up, etc. I had noticed a red rash on his head (he's VERY blonde, so it was hard to miss) so they did the test which was negative. The rash wasn't a bullseye, just a round red spot that didn't stick around long. Should we reconsider this route? I would expect the Lyme bacteria to react to his antimicrobials which are GSE, OoO and OLE.

> >

> > Sorry for the long message, trying not to leave anything out so we don't have to go in circles, lol.

> >

>

February 15, 2011

Cherly,My son started waiting for the toilet tank to be filled completely after flushing. He also wants to close every single door in the house. He started turning the lights on even when it is sunny outside. I know it screams PANDAS but I do not want to run a test which does not really mean much. Is it a good idea to just go ahead and treat for strep infection. Or should I wait for these symptoms to pass. They come and go all the time. Obsessions change shapes. One day it is lights,one day toilet,one day something else. Any ideas? Thanks

Ayse

already gave you the list for viral titers. A starter test for PANDAS is ASO titers and AntiDnase titers. Titers are antibodies, not specific to viruses or bacteria only but rather to a specific *thing*. Their called titers no matter what you are testing.

Keep in mind that coming up negative on any of these doesn't always mean much.

Cheryl ~http://www.gryffins-tail.blogspot.com~

~@Gryffins_Tail~

What test would I request for that? Strep is a bacteria, so I assume it's not titers, is it?

>

> > We recently did the Metamtrix DNA stool test with our 2 and 5 year olds. Our 5 year old had battled with Clostridia and yeast since he was at least 3 when we first knew to test him with an OAT and another stool test more recently.

> >

> > So you would think it would be good news to have a stool test come back totally clear of everything!! But instead, I am confused. He is colonizing all good bacteria (not all high, but it's there none the less), has NO opportunistic bacteria, NO yeast and NO parasites!! So yes, I am very glad for this, it means we totally eradicated the Clostridia which was a NASTY bug to deal with. And both my husband and I have commented on how well he's been doing lately, BUT we still have some weird things happening with him and I beginning to think we may still be contending with viral problems, but we have never actually done any viral titer testing. I think this may be a good time to consider doing so. Can anyone tell me what titers to have pulled and if it's really expensive, because I am sure our insurance won't cover it.

> >

> > This is what we are still noticing with him: he is getting sick more frequently than he used to (although he fights them pretty fast), when he gets a virus his sensory stuff comes back and what I thought was a yeast symptom (swatting at his ears and head) may not even be a yeast sign. He also gets wildly moody when he's sick. His moods are much better than they used to be, but we are still seeing an occasional low frustration threshold and we are waiting for the results of a handwriting evaluation, because he seems to struggle with writing, although he loves to read and " write " books and cards. He just gets frustrated with himself. About two years ago when this all started, we had him evaluated and he had delayed fine motor skills.

> >

> > So I guess I don't know, if some of this is (aside from the delayed motor skills) normal or not and if we should be addressing virals more. We currently give him 500mg of OLE two to three times a day. He's also still reacting to his antimicrobials, meaning, if we go off them (like for the stool test) he has die-off of some sort when going back on them. Why would this happen, if he doesn't have yeast or bacteria, can virals cause that same sort of reaction? Oh and I tried to add Monolaurin in a few times and even one pellet causes something, die-off or mood swings. Reminds me of when we started killing off the Clostridia. He did have the MMR and varicela vaccinations so I was thinking he could have a measles or rubella infection. When we started the OLE, ten days into using it, he broke out in a rash all over his trunk, like the chicken pox which is how he also reacted to his vaccinations. Unfortunately, the MMR and varicela were given at the same time....I know, if only I knew then what I know now!

> >

> > The other thing I am considering here is Lyme. He was tested once when he was one and reacted to his 12 month vaccinations with a month of things including various rashes and fevers, his eyelid swelled up, etc. I had noticed a red rash on his head (he's VERY blonde, so it was hard to miss) so they did the test which was negative. The rash wasn't a bullseye, just a round red spot that didn't stick around long. Should we reconsider this route? I would expect the Lyme bacteria to react to his antimicrobials which are GSE, OoO and OLE.

> >

> > Sorry for the long message, trying not to leave anything out so we don't have to go in circles, lol.

> >

>

February 15, 2011

Yes, you do need to treat for strep and see how he responds. Where do you live? There are very few knowledgeable PANDAS docs.

What test would I request for that? Strep is a bacteria, so I assume it's not titers, is it?> > > We recently did the Metamtrix DNA stool test with our 2 and 5 year olds. Our 5 year old had battled with Clostridia and yeast since he was at least 3 when we first knew to test him with an OAT and another stool test more

recently. > > > > So you would think it would be good news to have a stool test come back totally clear of everything!! But instead, I am confused. He is colonizing all good bacteria (not all high, but it's there none the less), has NO opportunistic bacteria, NO yeast and NO parasites!! So yes, I am very glad for this, it means we totally eradicated the Clostridia which was a NASTY bug to deal with. And both my husband and I have commented on how well he's been doing lately, BUT we still have some weird things happening with him and I beginning to think we may still be contending with viral problems, but we have never actually done any viral titer testing. I think this may be a good time to consider doing so. Can anyone tell me what titers to have pulled and if it's really expensive, because I am sure our insurance won't cover it. > > > > This is what we are still noticing with him: he is getting sick more

frequently than he used to (although he fights them pretty fast), when he gets a virus his sensory stuff comes back and what I thought was a yeast symptom (swatting at his ears and head) may not even be a yeast sign. He also gets wildly moody when he's sick. His moods are much better than they used to be, but we are still seeing an occasional low frustration threshold and we are waiting for the results of a handwriting evaluation, because he seems to struggle with writing, although he loves to read and "write" books and cards. He just gets frustrated with himself. About two years ago when this all started, we had him evaluated and he had delayed fine motor skills.> > > > So I guess I don't know, if some of this is (aside from the delayed motor skills) normal or not and if we should be addressing virals more. We currently give him 500mg of OLE two to three times a day. He's also still reacting to his antimicrobials, meaning, if we go

off them (like for the stool test) he has die-off of some sort when going back on them. Why would this happen, if he doesn't have yeast or bacteria, can virals cause that same sort of reaction? Oh and I tried to add Monolaurin in a few times and even one pellet causes something, die-off or mood swings. Reminds me of when we started killing off the Clostridia. He did have the MMR and varicela vaccinations so I was thinking he could have a measles or rubella infection. When we started the OLE, ten days into using it, he broke out in a rash all over his trunk, like the chicken pox which is how he also reacted to his vaccinations. Unfortunately, the MMR and varicela were given at the same time....I know, if only I knew then what I know now!> > > > The other thing I am considering here is Lyme. He was tested once when he was one and reacted to his 12 month vaccinations with a month of things including various rashes and fevers, his eyelid

swelled up, etc. I had noticed a red rash on his head (he's VERY blonde, so it was hard to miss) so they did the test which was negative. The rash wasn't a bullseye, just a round red spot that didn't stick around long. Should we reconsider this route? I would expect the Lyme bacteria to react to his antimicrobials which are GSE, OoO and OLE.> > > > Sorry for the long message, trying not to leave anything out so we don't have to go in circles, lol.> > > > > > > >>

February 15, 2011

A question on pandas and strep: in most cases, do the treatments need to be repeated periodically, or is one course normally sufficient to address the issue?To: mb12 valtrex Sent: Wednesday, February 16, 2011 7:35:31Subject: Re: Re: Confused about latest DNA

stool test results

Yes, you do need to treat for strep and see how he responds. Where do you live? There are very few knowledgeable PANDAS docs.

What test would I request for that? Strep is a bacteria, so I assume it's not titers, is it?> > > We recently did the Metamtrix DNA stool test with our 2 and 5 year olds. Our 5 year old had battled with Clostridia and yeast since he was at least 3 when we first knew to test him with an OAT and another stool test more

recently. > > > > So you would think it would be good news to have a stool test come back totally clear of everything!! But instead, I am confused. He is colonizing all good bacteria (not all high, but it's there none the less), has NO opportunistic bacteria, NO yeast and NO parasites!! So yes, I am very glad for this, it means we totally eradicated the Clostridia which was a NASTY bug to deal with. And both my husband and I have commented on how well he's been doing lately, BUT we still have some weird things happening with him and I beginning to think we may still be contending with viral problems, but we have never actually done any viral titer testing. I think this may be a good time to consider doing so. Can anyone tell me what titers to have pulled and if it's really expensive, because I am sure our insurance won't cover it. > > > > This is what we are still noticing with him: he is getting sick more

frequently than he used to (although he fights them pretty fast), when he gets a virus his sensory stuff comes back and what I thought was a yeast symptom (swatting at his ears and head) may not even be a yeast sign. He also gets wildly moody when he's sick. His moods are much better than they used to be, but we are still seeing an occasional low frustration threshold and we are waiting for the results of a handwriting evaluation, because he seems to struggle with writing, although he loves to read and "write" books and cards. He just gets frustrated with himself. About two years ago when this all started, we had him evaluated and he had delayed fine motor skills.> > > > So I guess I don't know, if some of this is (aside from the delayed motor skills) normal or not and if we should be addressing virals more. We currently give him 500mg of OLE two to three times a day. He's also still reacting to his antimicrobials, meaning, if we go

off them (like for the stool test) he has die-off of some sort when going back on them. Why would this happen, if he doesn't have yeast or bacteria, can virals cause that same sort of reaction? Oh and I tried to add Monolaurin in a few times and even one pellet causes something, die-off or mood swings. Reminds me of when we started killing off the Clostridia. He did have the MMR and varicela vaccinations so I was thinking he could have a measles or rubella infection. When we started the OLE, ten days into using it, he broke out in a rash all over his trunk, like the chicken pox which is how he also reacted to his vaccinations. Unfortunately, the MMR and varicela were given at the same time....I know, if only I knew then what I know now!> > > > The other thing I am considering here is Lyme. He was tested once when he was one and reacted to his 12 month vaccinations with a month of things including various rashes and fevers, his eyelid

swelled up, etc. I had noticed a red rash on his head (he's VERY blonde, so it was hard to miss) so they did the test which was negative. The rash wasn't a bullseye, just a round red spot that didn't stick around long. Should we reconsider this route? I would expect the Lyme bacteria to react to his antimicrobials which are GSE, OoO and OLE.> > > > Sorry for the long message, trying not to leave anything out so we don't have to go in circles, lol.> > > > > > > >>

February 15, 2011

For Pandas kids, no, one course is generally not enough. I'm not very fluent in PANDAS information, though. I know some treat as flares come but I think they don't even get to that point until they've done some long term treatment first. I honestly don't know. Christel knows more about PANDAS than I do, she's actually dealing with it.

Cheryl ~http://www.gryffins-tail.blogspot.com~~@Gryffins_Tail~

A question on pandas and strep: in most cases, do the treatments need to be repeated periodically, or is one course normally sufficient to address the issue?To: mb12 valtrex Sent: Wednesday, February 16, 2011 7:35:31Subject: Re: Re: Confused about latest DNA

stool test results

Yes, you do need to treat for strep and see how he responds. Where do you live? There are very few knowledgeable PANDAS docs.

What test would I request for that? Strep is a bacteria, so I assume it's not titers, is it?> > > We recently did the Metamtrix DNA stool test with our 2 and 5 year olds. Our 5 year old had battled with Clostridia and yeast since he was at least 3 when we first knew to test him with an OAT and another stool test more

recently. > > > > So you would think it would be good news to have a stool test come back totally clear of everything!! But instead, I am confused. He is colonizing all good bacteria (not all high, but it's there none the less), has NO opportunistic bacteria, NO yeast and NO parasites!! So yes, I am very glad for this, it means we totally eradicated the Clostridia which was a NASTY bug to deal with. And both my husband and I have commented on how well he's been doing lately, BUT we still have some weird things happening with him and I beginning to think we may still be contending with viral problems, but we have never actually done any viral titer testing. I think this may be a good time to consider doing so. Can anyone tell me what titers to have pulled and if it's really expensive, because I am sure our insurance won't cover it. > > > > This is what we are still noticing with him: he is getting sick more

frequently than he used to (although he fights them pretty fast), when he gets a virus his sensory stuff comes back and what I thought was a yeast symptom (swatting at his ears and head) may not even be a yeast sign. He also gets wildly moody when he's sick. His moods are much better than they used to be, but we are still seeing an occasional low frustration threshold and we are waiting for the results of a handwriting evaluation, because he seems to struggle with writing, although he loves to read and "write" books and cards. He just gets frustrated with himself. About two years ago when this all started, we had him evaluated and he had delayed fine motor skills.> > > > So I guess I don't know, if some of this is (aside from the delayed motor skills) normal or not and if we should be addressing virals more. We currently give him 500mg of OLE two to three times a day. He's also still reacting to his antimicrobials, meaning, if we go

off them (like for the stool test) he has die-off of some sort when going back on them. Why would this happen, if he doesn't have yeast or bacteria, can virals cause that same sort of reaction? Oh and I tried to add Monolaurin in a few times and even one pellet causes something, die-off or mood swings. Reminds me of when we started killing off the Clostridia. He did have the MMR and varicela vaccinations so I was thinking he could have a measles or rubella infection. When we started the OLE, ten days into using it, he broke out in a rash all over his trunk, like the chicken pox which is how he also reacted to his vaccinations. Unfortunately, the MMR and varicela were given at the same time....I know, if only I knew then what I know now!> > > > The other thing I am considering here is Lyme. He was tested once when he was one and reacted to his 12 month vaccinations with a month of things including various rashes and fevers, his eyelid

swelled up, etc. I had noticed a red rash on his head (he's VERY blonde, so it was hard to miss) so they did the test which was negative. The rash wasn't a bullseye, just a round red spot that didn't stick around long. Should we reconsider this route? I would expect the Lyme bacteria to react to his antimicrobials which are GSE, OoO and OLE.> > > > Sorry for the long message, trying not to leave anything out so we don't have to go in circles, lol.> > > > > > > >>

February 15, 2011

you treat when you flare OR there is also the thought process of doing prophatic antibiotics to PREVENT flares. LDN keep flares away for us (and it's cheep) but we miss ONE night and boom we have a flare the next AM

From: cheryl biomed.mom

Sent: Tuesday, February 15, 2011 10:05 PM

To: mb12 valtrex

Subject: Re: Re: Confused about latest DNA stool test results

For Pandas kids, no, one course is generally not enough. I'm not very fluent in PANDAS information, though. I know some treat as flares come but I think they don't even get to that point until they've done some long term treatment first. I honestly don't know. Christel knows more about PANDAS than I do, she's actually dealing with it.

Cheryl

~http://www.gryffins-tail.blogspot.com~

~@Gryffins_Tail~

A question on pandas and strep: in most cases, do the treatments need to be repeated periodically, or is one course normally sufficient to address the issue?

To: mb12 valtrex Sent: Wednesday, February 16, 2011 7:35:31Subject: Re: Re: Confused about latest DNA stool test results

Yes, you do need to treat for strep and see how he responds. Where do you live? There are very few knowledgeable PANDAS docs.

What test would I request for that? Strep is a bacteria, so I assume it's not titers, is it?> > > We recently did the Metamtrix DNA stool test with our 2 and 5 year olds. Our 5 year old had battled with Clostridia and yeast since he was at least 3 when we first knew to test him with an OAT and another stool test more recently. > > > > So you would think it would be good news to have a stool test come back totally clear of everything!! But instead, I am confused. He is colonizing all good bacteria (not all high, but it's there none the less), has NO opportunistic bacteria, NO yeast and NO parasites!! So yes, I am very glad for this, it means we totally eradicated the Clostridia which was a NASTY bug to deal with. And both my husband and I have commented on how well he's been doing lately, BUT we still have some weird things happening with him and I beginning to think we may still be contending with viral problems, but we have never actually done any viral titer testing. I think this may be a good time to consider doing so. Can anyone tell me what titers to have pulled and if it's really expensive, because I am sure our insurance won't cover it. > > > > This is what we are still noticing with him: he is getting sick more frequently than he used to (although he fights them pretty fast), when he gets a virus his sensory stuff comes back and what I thought was a yeast symptom (swatting at his ears and head) may not even be a yeast sign. He also gets wildly moody when he's sick. His moods are much better than they used to be, but we are still seeing an occasional low frustration threshold and we are waiting for the results of a handwriting evaluation, because he seems to struggle with writing, although he loves to read and "write" books and cards. He just gets frustrated with himself. About two years ago when this all started, we had him evaluated and he had delayed fine motor skills.> > > > So I guess I don't know, if some of this is (aside from the delayed motor skills) normal or not and if we should be addressing virals more. We currently give him 500mg of OLE two to three times a day. He's also still reacting to his antimicrobials, meaning, if we go off them (like for the stool test) he has die-off of some sort when going back on them. Why would this happen, if he doesn't have yeast or bacteria, can virals cause that same sort of reaction? Oh and I tried to add Monolaurin in a few times and even one pellet causes something, die-off or mood swings. Reminds me of when we started killing off the Clostridia. He did have the MMR and varicela vaccinations so I was thinking he could have a measles or rubella infection. When we started the OLE, ten days into using it, he broke out in a rash all over his trunk, like the chicken pox which is how he also reacted to his vaccinations. Unfortunately, the MMR and varicela were given at the same time....I know, if only I knew then what I know now!> > > > The other thing I am considering here is Lyme. He was tested once when he was one and reacted to his 12 month vaccinations with a month of things including various rashes and fevers, his eyelid swelled up, etc. I had noticed a red rash on his head (he's VERY blonde, so it was hard to miss) so they did the test which was negative. The rash wasn't a bullseye, just a round red spot that didn't stick around long. Should we reconsider this route? I would expect the Lyme bacteria to react to his antimicrobials which are GSE, OoO and OLE.> > > > Sorry for the long message, trying not to leave anything out so we don't have to go in circles, lol.> > > > > > > >>

February 15, 2011

If it is a first case (often the child is younger) then a one time course of antibiotics works. However, the autistic kids have compised immune systems so exposures to viruses and bacteria stress their damaged immune system. It reallly depends on the child and how they respond to treatment.....they may need long term antibiotics or not.....they may need to stay on a weekly dose or not.....they may need steroids or not....they may need IVIG and stay on antibiotics.

Susam

What test would I request for that? Strep is a bacteria, so I assume it's not titers, is it?> > > We recently did the Metamtrix DNA stool test with our 2 and 5 year olds. Our 5 year old had battled with Clostridia and yeast since he was at least 3 when we first knew to test him with an OAT and another stool test more recently. > > > > So you would

think it would be good news to have a stool test come back totally clear of everything!! But instead, I am confused. He is colonizing all good bacteria (not all high, but it's there none the less), has NO opportunistic bacteria, NO yeast and NO parasites!! So yes, I am very glad for this, it means we totally eradicated the Clostridia which was a NASTY bug to deal with. And both my husband and I have commented on how well he's been doing lately, BUT we still have some weird things happening with him and I beginning to think we may still be contending with viral problems, but we have never actually done any viral titer testing. I think this may be a good time to consider doing so. Can anyone tell me what titers to have pulled and if it's really expensive, because I am sure our insurance won't cover it. > > > > This is what we are still noticing with him: he is getting sick more frequently than he used to (although he fights them pretty

fast), when he gets a virus his sensory stuff comes back and what I thought was a yeast symptom (swatting at his ears and head) may not even be a yeast sign. He also gets wildly moody when he's sick. His moods are much better than they used to be, but we are still seeing an occasional low frustration threshold and we are waiting for the results of a handwriting evaluation, because he seems to struggle with writing, although he loves to read and "write" books and cards. He just gets frustrated with himself. About two years ago when this all started, we had him evaluated and he had delayed fine motor skills.> > > > So I guess I don't know, if some of this is (aside from the delayed motor skills) normal or not and if we should be addressing virals more. We currently give him 500mg of OLE two to three times a day. He's also still reacting to his antimicrobials, meaning, if we go off them (like for the stool test) he has die-off of some

sort when going back on them. Why would this happen, if he doesn't have yeast or bacteria, can virals cause that same sort of reaction? Oh and I tried to add Monolaurin in a few times and even one pellet causes something, die-off or mood swings. Reminds me of when we started killing off the Clostridia. He did have the MMR and varicela vaccinations so I was thinking he could have a measles or rubella infection. When we started the OLE, ten days into using it, he broke out in a rash all over his trunk, like the chicken pox which is how he also reacted to his vaccinations. Unfortunately, the MMR and varicela were given at the same time....I know, if only I knew then what I know now!> > > > The other thing I am considering here is Lyme. He was tested once when he was one and reacted to his 12 month vaccinations with a month of things including various rashes and fevers, his eyelid swelled up, etc. I had noticed a red rash on his head

(he's VERY blonde, so it was hard to miss) so they did the test which was negative. The rash wasn't a bullseye, just a round red spot that didn't stick around long. Should we reconsider this route? I would expect the Lyme bacteria to react to his antimicrobials which are GSE, OoO and OLE.> > > > Sorry for the long message, trying not to leave anything out so we don't have to go in circles, lol.> > > > > > > >>

February 16, 2011

can't get LDN these parts . might have some success with the full strength stuff, but can't get a prescription unless you're a drug addict... infuriating. son's been largely bonkers the last 2 monthsTo: mb12 valtrex Sent: Wednesday, February 16, 2011 11:36:47Subject: Re: Re: Confused about latest DNA stool test results

you treat when you flare OR there is also the thought process of doing prophatic antibiotics to PREVENT flares. LDN keep flares away for us (and it's cheep) but we miss ONE night and boom we have a flare the next AM

From: cheryl biomed.mom

Sent: Tuesday, February 15, 2011 10:05 PM

To: mb12 valtrex

Subject: Re: Re: Confused about latest DNA stool test results

For Pandas kids, no, one course is generally not enough. I'm not very fluent in PANDAS information, though. I know some treat as flares come but I think they don't even get to that point until they've done some long term treatment first. I honestly don't know. Christel knows more about PANDAS than I do, she's actually dealing with it.

Cheryl

~http://www.gryffins-tail.blogspot.com~

~@Gryffins_Tail~

A question on pandas and strep: in most cases, do the treatments need to be repeated periodically, or is one course normally sufficient to address the issue?

To: mb12 valtrex Sent: Wednesday, February 16, 2011 7:35:31Subject: Re: Re: Confused about latest DNA stool test results

Yes, you do need to treat for strep and see how he responds. Where do you live? There are very few knowledgeable PANDAS docs.

What test would I request for that? Strep is a bacteria, so I assume it's not titers, is it?> > > We recently did the Metamtrix DNA stool test with our 2 and 5 year olds. Our 5 year old had battled with Clostridia and yeast since he was at least 3 when we first knew to test him with an OAT and another stool test more recently. > > > > So you would think it would be good news to have a stool test come back totally clear of everything!! But instead, I am confused. He is colonizing all good bacteria (not all high, but it's there none the less), has NO opportunistic bacteria, NO yeast and NO parasites!! So yes, I am very glad for this, it means we totally eradicated the Clostridia which was a NASTY bug to deal with. And both my husband and I have commented on how well he's been doing lately, BUT we still have some weird things happening with him and I beginning to think we may still be contending with viral problems, but we have never actually done any viral titer testing. I think this may be a good time to consider doing so. Can anyone tell me what titers to have pulled and if it's really expensive, because I am sure our insurance won't cover it. > > > > This is what we are still noticing with him: he is getting sick more frequently than he used to (although he fights them pretty fast), when he gets a virus his sensory stuff comes back and what I thought was a yeast symptom (swatting at his ears and head) may not even be a yeast sign. He also gets wildly moody when he's sick. His moods are much better than they used to be, but we are still seeing an occasional low frustration threshold and we are waiting for the results of a handwriting evaluation, because he seems to struggle with writing, although he loves to read and "write" books and cards. He just gets frustrated with himself. About two years ago when this all started, we had him evaluated and he had delayed fine motor skills.> > > > So I guess I don't know, if some of this is (aside from the delayed motor skills) normal or not and if we should be addressing virals more. We currently give him 500mg of OLE two to three times a day. He's also still reacting to his antimicrobials, meaning, if we go off them (like for the stool test) he has die-off of some sort when going back on them. Why would this happen, if he doesn't have yeast or bacteria, can virals cause that same sort of reaction? Oh and I tried to add Monolaurin in a few times and even one pellet causes something, die-off or mood swings. Reminds me of when we started killing off the Clostridia. He did have the MMR and varicela vaccinations so I was thinking he could have a measles or rubella infection. When we started the OLE, ten days into using it, he broke out in a rash all over his trunk, like the chicken pox which is how he also reacted to his vaccinations. Unfortunately, the MMR and varicela were given at the same time....I know, if only I knew then what I know now!> > > > The other thing I am considering here is Lyme. He was tested once when he was one and reacted to his 12 month vaccinations with a month of things including various rashes and fevers, his eyelid swelled up, etc. I had noticed a red rash on his head (he's VERY blonde, so it was hard to miss) so they did the test which was negative. The rash wasn't a bullseye, just a round red spot that didn't stick around long. Should we reconsider this route? I would expect the Lyme bacteria to react to his antimicrobials which are GSE, OoO and OLE.> > > > Sorry for the long message, trying not to leave anything out so we don't have to go in circles, lol.> > > > > > > >>

February 16, 2011

where are you located,we fax px from our gp to new york and we are in ireland,would you know any doc who would help,completely differnt dose for drug addicts def not low dose like for our kids .makes me mad we have to fight so hard for something that could really help our kids

can't get LDN these parts . might have some success with the full strength stuff, but can't get a prescription unless you're a drug addict... infuriating. son's been largely bonkers the last 2 months

To: mb12 valtrex

Sent: Wednesday, February 16, 2011 11:36:47

Subject: Re: Re: Confused about latest DNA stool test results

you treat when you flare OR there is also the thought process of doing prophatic antibiotics to PREVENT flares. LDN keep flares away for us (and it's cheep) but we miss ONE night and boom we have a flare the next AM

From: cheryl biomed.mom

Sent: Tuesday, February 15, 2011 10:05 PM

To: mb12 valtrex

Subject: Re: Re: Confused about latest DNA stool test results

For Pandas kids, no, one course is generally not enough. I'm not very fluent in PANDAS information, though. I know some treat as flares come but I think they don't even get to that point until they've done some long term treatment first. I honestly don't know. Christel knows more about PANDAS than I do, she's actually dealing with it.

Cheryl

~http://www.gryffins-tail.blogspot.com~

~@Gryffins_Tail~

A question on pandas and strep: in most cases, do the treatments need to be repeated periodically, or is one course normally sufficient to address the issue?

To: mb12 valtrex

Sent: Wednesday, February 16, 2011 7:35:31Subject: Re: Re: Confused about latest DNA stool test results

Yes, you do need to treat for strep and see how he responds. Where do you live? There are very few knowledgeable PANDAS docs.

What test would I request for that? Strep is a bacteria, so I assume it's not titers, is it?> > > We recently did the Metamtrix DNA stool test with our 2 and 5 year olds. Our 5 year old had battled with Clostridia and yeast since he was at least 3 when we first knew to test him with an OAT and another stool test more recently.

> > > > So you would think it would be good news to have a stool test come back totally clear of everything!! But instead, I am confused. He is colonizing all good bacteria (not all high, but it's there none the less), has NO opportunistic bacteria, NO yeast and NO parasites!! So yes, I am very glad for this, it means we totally eradicated the Clostridia which was a NASTY bug to deal with. And both my husband and I have commented on how well he's been doing lately, BUT we still have some weird things happening with him and I beginning to think we may still be contending with viral problems, but we have never actually done any viral titer testing. I think this may be a good time to consider doing so. Can anyone tell me what titers to have pulled and if it's really expensive, because I am sure our insurance won't cover it.

> > > > This is what we are still noticing with him: he is getting sick more frequently than he used to (although he fights them pretty fast), when he gets a virus his sensory stuff comes back and what I thought was a yeast symptom (swatting at his ears and head) may not even be a yeast sign. He also gets wildly moody when he's sick. His moods are much better than they used to be, but we are still seeing an occasional low frustration threshold and we are waiting for the results of a handwriting evaluation, because he seems to struggle with writing, although he loves to read and " write " books and cards. He just gets frustrated with himself. About two years ago when this all started, we had him evaluated and he had delayed fine motor skills.

> > > > So I guess I don't know, if some of this is (aside from the delayed motor skills) normal or not and if we should be addressing virals more. We currently give him 500mg of OLE two to three times a day. He's also still reacting to his antimicrobials, meaning, if we go off them (like for the stool test) he has die-off of some sort when going back on them. Why would this happen, if he doesn't have yeast or bacteria, can virals cause that same sort of reaction? Oh and I tried to add Monolaurin in a few times and even one pellet causes something, die-off or mood swings. Reminds me of when we started killing off the Clostridia. He did have the MMR and varicela vaccinations so I was thinking he could have a measles or rubella infection. When we started the OLE, ten days into using it, he broke out in a rash all over his trunk, like the chicken pox which is how he also reacted to his vaccinations. Unfortunately, the MMR and varicela were given at the same time....I know, if only I knew then what I know now!

> > > > The other thing I am considering here is Lyme. He was tested once when he was one and reacted to his 12 month vaccinations with a month of things including various rashes and fevers, his eyelid swelled up, etc. I had noticed a red rash on his head (he's VERY blonde, so it was hard to miss) so they did the test which was negative. The rash wasn't a bullseye, just a round red spot that didn't stick around long. Should we reconsider this route? I would expect the Lyme bacteria to react to his antimicrobials which are GSE, OoO and OLE.

> > > > Sorry for the long message, trying not to leave anything out so we don't have to go in circles, lol.> > > > > > > >>

-- Cotter4 Pollerton ManorCarlow059 9134964087 2637921

February 16, 2011

I'm in Malaysia... there are NO Dans here. My GP is largely depending on info I pass him. thought of getting it from India (they don't ask for a px there), and diluting to the required strength, which I do not know as yet.May I know who you place the order with? Am surprised that they accept a faxed px. Might try this approach.Tks, .To:

mb12 valtrex Sent: Wednesday, February 16, 2011 19:12:06Subject: Re: Re: Confused about latest DNA stool test results

where are you located,we fax px from our gp to new york and we are in ireland,would you know any doc who would help,completely differnt dose for drug addicts def not low dose like for our kids .makes me mad we have to fight so hard for something that could really help our kids

can't get LDN these parts . might have some success with the full strength stuff, but can't get a prescription unless you're a drug addict... infuriating. son's been largely bonkers the last 2 months

To: mb12 valtrex

Sent: Wednesday, February 16, 2011 11:36:47

Subject: Re: Re: Confused about latest DNA stool test results

you treat when you flare OR there is also the thought process of doing prophatic antibiotics to PREVENT flares. LDN keep flares away for us (and it's cheep) but we miss ONE night and boom we have a flare the next AM

From: cheryl biomed.mom

Sent: Tuesday, February 15, 2011 10:05 PM

To: mb12 valtrex

Subject: Re: Re: Confused about latest DNA stool test results

For Pandas kids, no, one course is generally not enough. I'm not very fluent in PANDAS information, though. I know some treat as flares come but I think they don't even get to that point until they've done some long term treatment first. I honestly don't know. Christel knows more about PANDAS than I do, she's actually dealing with it.

Cheryl

~http://www.gryffins-tail.blogspot.com~

~@Gryffins_Tail~

A question on pandas and strep: in most cases, do the treatments need to be repeated periodically, or is one course normally sufficient to address the issue?

To: mb12 valtrex

Sent: Wednesday, February 16, 2011 7:35:31Subject: Re: Re: Confused about latest DNA stool test results

Yes, you do need to treat for strep and see how he responds. Where do you live? There are very few knowledgeable PANDAS docs.

What test would I request for that? Strep is a bacteria, so I assume it's not titers, is it?> > > We recently did the Metamtrix DNA stool test with our 2 and 5 year olds. Our 5 year old had battled with Clostridia and yeast since he was at least 3 when we first knew to test him with an OAT and another stool test more recently.

> > > > So you would think it would be good news to have a stool test come back totally clear of everything!! But instead, I am confused. He is colonizing all good bacteria (not all high, but it's there none the less), has NO opportunistic bacteria, NO yeast and NO parasites!! So yes, I am very glad for this, it means we totally eradicated the Clostridia which was a NASTY bug to deal with. And both my husband and I have commented on how well he's been doing lately, BUT we still have some weird things happening with him and I beginning to think we may still be contending with viral problems, but we have never actually done any viral titer testing. I think this may be a good time to consider doing so. Can anyone tell me what titers to have pulled and if it's really expensive, because I am sure our insurance won't cover it.

> > > > This is what we are still noticing with him: he is getting sick more frequently than he used to (although he fights them pretty fast), when he gets a virus his sensory stuff comes back and what I thought was a yeast symptom (swatting at his ears and head) may not even be a yeast sign. He also gets wildly moody when he's sick. His moods are much better than they used to be, but we are still seeing an occasional low frustration threshold and we are waiting for the results of a handwriting evaluation, because he seems to struggle with writing, although he loves to read and "write" books and cards. He just gets frustrated with himself. About two years ago when this all started, we had him evaluated and he had delayed fine motor skills.

> > > > So I guess I don't know, if some of this is (aside from the delayed motor skills) normal or not and if we should be addressing virals more. We currently give him 500mg of OLE two to three times a day. He's also still reacting to his antimicrobials, meaning, if we go off them (like for the stool test) he has die-off of some sort when going back on them. Why would this happen, if he doesn't have yeast or bacteria, can virals cause that same sort of reaction? Oh and I tried to add Monolaurin in a few times and even one pellet causes something, die-off or mood swings. Reminds me of when we started killing off the Clostridia. He did have the MMR and varicela vaccinations so I was thinking he could have a measles or rubella infection. When we started the OLE, ten days into using it, he broke out in a rash all over his trunk, like the chicken pox which is how he also reacted to his vaccinations. Unfortunately, the MMR and varicela were

given at the same time....I know, if only I knew then what I know now!

> > > > The other thing I am considering here is Lyme. He was tested once when he was one and reacted to his 12 month vaccinations with a month of things including various rashes and fevers, his eyelid swelled up, etc. I had noticed a red rash on his head (he's VERY blonde, so it was hard to miss) so they did the test which was negative. The rash wasn't a bullseye, just a round red spot that didn't stick around long. Should we reconsider this route? I would expect the Lyme bacteria to react to his antimicrobials which are GSE, OoO and OLE.

> > > > Sorry for the long message, trying not to leave anything out so we don't have to go in circles, lol.> > > > > > > >>

-- Cotter4 Pollerton ManorCarlow059 9134964087 2637921

February 16, 2011

we use irmats pharmacy in new york its recommended by dr bahardi who came up with LDN ,the reason being that they compund it themselves and that if not properly compounded it just does not work,you should look up the LDN offical website lots of info there,maybe you could print some off for your gp,we have only 2 dans here in ireland but my gp helps me out with pxs so maybe

you could try that.my brother in law is working in malaysia ,loves it cant see him ever coming back to ireland

I'm in Malaysia... there are NO Dans here. My GP is largely depending on info I pass him. thought of getting it from India (they don't ask for a px there), and diluting to the required strength, which I do not know as yet.

May I know who you place the order with? Am surprised that they accept a faxed px. Might try this approach.

Tks, .

To: mb12 valtrex

Sent: Wednesday, February 16, 2011 19:12:06