Re: DAN advice

[Guest guest]

Oh well I take it back, I don't know who you are seeing then if you are in that corner of the US.Woeller is a he and he's in SoCal.I don't know of anyone in Missouri but in Texas there is Jepson @ Thoughtful House. In Oklahoma there is Baptist. Christel sees Baptist (takes insurance) so she can tell you what he's like - I know she loves him. I don't really know much about Jepson -only that he has a book - but a book doesn't make a great DAN or doctor, it only means they wrote a book, so the only recommendation on him is that hopefully there is someone on the list that sees him that can tell you more. My personal opinion on pulsing antifungals, only pulse naturals. If you pulse Rx, you'll likely cause drug resistance. Drug resistance with yeast isn't usually permanent but also not pleasant when you have to wait to use antifungals because none of them are working.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

Thanks everyone for the information. Can those of you recommending Dr. Woeller tell me where he/she is located?

I'm really willing to try anyone reputable, but travelling far isn't really an option right now. Our current DAN will only do telephone consults every other appointment. If it's someone in another state they'd have to be willing to do it pretty much every time. I could probably go as far as Texas, Missouri, or Oklahoma for an initial consultation if necessary.

As for the testing we've done so far, I could write a book. The most common ones are done via Genova labs and great plains. It seems like we do stool and urine tests three times a year from these. She also does blood testing twice annually, and I couldn't even begin to tell you what she has tested. This last time we had to take ds in four weeks in row in order to collect enough blood for all of the testing. She's also done testing with other lesser known labs, urine, stool, and mouth swab, but I'll have to get out our records to say exactly where and what for. It seems like all we do is testing:)

I haven't gotten a call from our pedi or the DAN. I sent her a note to see if we could just do a shortened phone session to discuss the antiviral/antifungal stuff until I can come up with enough money for a full appt. Somehow I'm doubting that is going to work.

What kind of problems do you think we'll face if I have to stop the valtrex/diflucan so suddenly? This sucks!!!

Does anyone do pulsing with antifungals, and if so what others do you use besides diflucan?

>

> ,

>

> Can't the sister-in-law who is an immunologist help? Won't she treat your

> son with antivirals and antifungals. Both of those were huge for my son.

> We see Dr. Goldberg in Tarzana, CA, but Dr. from Port

> Arkansas. TX also does this. They are extremely traditional in their

> approach and do things medically probably closer to what your sister-in-law

> does.

>

>

>

> The initial visit must be in person. After blood tests done locally and

> there are phone appointments to monitor the meds and progress. My son is 22

> in college and fully recovered. He still needs meds to regulate his immune

> system, but he is definitely there. He just received a scholarship and paid

> internship from NASA. Email me privately if you want me to forward what we

> did. We started at age five and were with a DAN for a year before that.

> Dr. G seems to get kids better faster now than when we started because he

> has been doing this so long.

>

> Best,

>

> Marcia

>

[Guest guest]

I don't think Baptist is in OK. I believe he is in Kansas City, or actually just outside, on the Kansas side.Yes I think Dr. Woeller is in Temecula? I am from the east so my Cal. geography is not great LOL

 

Oh well I take it back, I don't know who you are seeing then if you are in that corner of the US.Woeller is a he and he's in SoCal.I don't know of anyone in Missouri but in Texas there is Jepson @ Thoughtful House.  In Oklahoma there is Baptist.  Christel sees Baptist (takes insurance) so she can tell you what he's like - I know she loves him. I don't really know much about Jepson -only that he has a book - but a book doesn't make a great DAN or doctor, it only means they wrote a book, so the only recommendation on him is that hopefully there is someone on the list that sees him that can tell you more.  

My personal opinion on pulsing antifungals, only pulse naturals.  If you pulse Rx, you'll likely cause drug resistance.  Drug resistance with yeast isn't usually permanent but also not pleasant when you have to wait to use antifungals because none of them are working.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

 

Thanks everyone for the information. Can those of you recommending Dr. Woeller tell me where he/she is located?

I'm really willing to try anyone reputable, but travelling far isn't really an option right now. Our current DAN will only do telephone consults every other appointment. If it's someone in another state they'd have to be willing to do it pretty much every time. I could probably go as far as Texas, Missouri, or Oklahoma for an initial consultation if necessary.

As for the testing we've done so far, I could write a book. The most common ones are done via Genova labs and great plains. It seems like we do stool and urine tests three times a year from these. She also does blood testing twice annually, and I couldn't even begin to tell you what she has tested. This last time we had to take ds in four weeks in row in order to collect enough blood for all of the testing. She's also done testing with other lesser known labs, urine, stool, and mouth swab, but I'll have to get out our records to say exactly where and what for. It seems like all we do is testing:)

I haven't gotten a call from our pedi or the DAN. I sent her a note to see if we could just do a shortened phone session to discuss the antiviral/antifungal stuff until I can come up with enough money for a full appt. Somehow I'm doubting that is going to work.

What kind of problems do you think we'll face if I have to stop the valtrex/diflucan so suddenly? This sucks!!!

Does anyone do pulsing with antifungals, and if so what others do you use besides diflucan?

>

> ,

>

> Can't the sister-in-law who is an immunologist help? Won't she treat your

> son with antivirals and antifungals. Both of those were huge for my son.

> We see Dr. Goldberg in Tarzana, CA, but Dr. from Port

> Arkansas. TX also does this. They are extremely traditional in their

> approach and do things medically probably closer to what your sister-in-law

> does.

>

>

>

> The initial visit must be in person. After blood tests done locally and

> there are phone appointments to monitor the meds and progress. My son is 22

> in college and fully recovered. He still needs meds to regulate his immune

> system, but he is definitely there. He just received a scholarship and paid

> internship from NASA. Email me privately if you want me to forward what we

> did. We started at age five and were with a DAN for a year before that.

> Dr. G seems to get kids better faster now than when we started because he

> has been doing this so long.

>

> Best,

>

> Marcia

>

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

[Guest guest]

I don't think Baptist is in OK. I believe he is in Kansas City, or actually just outside, on the Kansas side.Yes I think Dr. Woeller is in Temecula? I am from the east so my Cal. geography is not great LOL

 

Oh well I take it back, I don't know who you are seeing then if you are in that corner of the US.Woeller is a he and he's in SoCal.I don't know of anyone in Missouri but in Texas there is Jepson @ Thoughtful House.  In Oklahoma there is Baptist.  Christel sees Baptist (takes insurance) so she can tell you what he's like - I know she loves him. I don't really know much about Jepson -only that he has a book - but a book doesn't make a great DAN or doctor, it only means they wrote a book, so the only recommendation on him is that hopefully there is someone on the list that sees him that can tell you more.  

My personal opinion on pulsing antifungals, only pulse naturals.  If you pulse Rx, you'll likely cause drug resistance.  Drug resistance with yeast isn't usually permanent but also not pleasant when you have to wait to use antifungals because none of them are working.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

 

Thanks everyone for the information. Can those of you recommending Dr. Woeller tell me where he/she is located?

I'm really willing to try anyone reputable, but travelling far isn't really an option right now. Our current DAN will only do telephone consults every other appointment. If it's someone in another state they'd have to be willing to do it pretty much every time. I could probably go as far as Texas, Missouri, or Oklahoma for an initial consultation if necessary.

As for the testing we've done so far, I could write a book. The most common ones are done via Genova labs and great plains. It seems like we do stool and urine tests three times a year from these. She also does blood testing twice annually, and I couldn't even begin to tell you what she has tested. This last time we had to take ds in four weeks in row in order to collect enough blood for all of the testing. She's also done testing with other lesser known labs, urine, stool, and mouth swab, but I'll have to get out our records to say exactly where and what for. It seems like all we do is testing:)

I haven't gotten a call from our pedi or the DAN. I sent her a note to see if we could just do a shortened phone session to discuss the antiviral/antifungal stuff until I can come up with enough money for a full appt. Somehow I'm doubting that is going to work.

What kind of problems do you think we'll face if I have to stop the valtrex/diflucan so suddenly? This sucks!!!

Does anyone do pulsing with antifungals, and if so what others do you use besides diflucan?

>

> ,

>

> Can't the sister-in-law who is an immunologist help? Won't she treat your

> son with antivirals and antifungals. Both of those were huge for my son.

> We see Dr. Goldberg in Tarzana, CA, but Dr. from Port

> Arkansas. TX also does this. They are extremely traditional in their

> approach and do things medically probably closer to what your sister-in-law

> does.

>

>

>

> The initial visit must be in person. After blood tests done locally and

> there are phone appointments to monitor the meds and progress. My son is 22

> in college and fully recovered. He still needs meds to regulate his immune

> system, but he is definitely there. He just received a scholarship and paid

> internship from NASA. Email me privately if you want me to forward what we

> did. We started at age five and were with a DAN for a year before that.

> Dr. G seems to get kids better faster now than when we started because he

> has been doing this so long.

>

> Best,

>

> Marcia

>

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

[Guest guest]

You're so right. It is Kansas, my bad.And yes, Temecula. SoCal just outside of San Diego.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

On Dec 10, 2010, at 3:18 PM, Toni Marie Lombardo wrote:

I don't think Baptist is in OK. I believe he is in Kansas City, or actually just outside, on the Kansas side.Yes I think Dr. Woeller is in Temecula? I am from the east so my Cal. geography is not great LOL

Oh well I take it back, I don't know who you are seeing then if you are in that corner of the US.Woeller is a he and he's in SoCal.I don't know of anyone in Missouri but in Texas there is Jepson @ Thoughtful House. In Oklahoma there is Baptist. Christel sees Baptist (takes insurance) so she can tell you what he's like - I know she loves him. I don't really know much about Jepson -only that he has a book - but a book doesn't make a great DAN or doctor, it only means they wrote a book, so the only recommendation on him is that hopefully there is someone on the list that sees him that can tell you more.

My personal opinion on pulsing antifungals, only pulse naturals. If you pulse Rx, you'll likely cause drug resistance. Drug resistance with yeast isn't usually permanent but also not pleasant when you have to wait to use antifungals because none of them are working.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

Thanks everyone for the information. Can those of you recommending Dr. Woeller tell me where he/she is located?

I'm really willing to try anyone reputable, but travelling far isn't really an option right now. Our current DAN will only do telephone consults every other appointment. If it's someone in another state they'd have to be willing to do it pretty much every time. I could probably go as far as Texas, Missouri, or Oklahoma for an initial consultation if necessary.

As for the testing we've done so far, I could write a book. The most common ones are done via Genova labs and great plains. It seems like we do stool and urine tests three times a year from these. She also does blood testing twice annually, and I couldn't even begin to tell you what she has tested. This last time we had to take ds in four weeks in row in order to collect enough blood for all of the testing. She's also done testing with other lesser known labs, urine, stool, and mouth swab, but I'll have to get out our records to say exactly where and what for. It seems like all we do is testing:)

I haven't gotten a call from our pedi or the DAN. I sent her a note to see if we could just do a shortened phone session to discuss the antiviral/antifungal stuff until I can come up with enough money for a full appt. Somehow I'm doubting that is going to work.

What kind of problems do you think we'll face if I have to stop the valtrex/diflucan so suddenly? This sucks!!!

Does anyone do pulsing with antifungals, and if so what others do you use besides diflucan?

>

> ,

>

> Can't the sister-in-law who is an immunologist help? Won't she treat your

> son with antivirals and antifungals. Both of those were huge for my son.

> We see Dr. Goldberg in Tarzana, CA, but Dr. from Port

> Arkansas. TX also does this. They are extremely traditional in their

> approach and do things medically probably closer to what your sister-in-law

> does.

>

>

>

> The initial visit must be in person. After blood tests done locally and

> there are phone appointments to monitor the meds and progress. My son is 22

> in college and fully recovered. He still needs meds to regulate his immune

> system, but he is definitely there. He just received a scholarship and paid

> internship from NASA. Email me privately if you want me to forward what we

> did. We started at age five and were with a DAN for a year before that.

> Dr. G seems to get kids better faster now than when we started because he

> has been doing this so long.

>

> Best,

>

> Marcia

>

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

[Guest guest]

No prob, I only remember b/c I considered seeing him even though it's a million miles from me LOLBut though he takes insurance it is very limited so I don't think it would be worth it for me!

 

You're so right.  It is Kansas, my bad.And yes, Temecula.  SoCal just outside of San Diego.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

On Dec 10, 2010, at 3:18 PM, Toni Marie Lombardo wrote:

 

I don't think Baptist is in OK. I believe he is in Kansas City, or actually just outside, on the Kansas side.Yes I think Dr. Woeller is in Temecula? I am from the east so my Cal. geography is not great LOL

 

Oh well I take it back, I don't know who you are seeing then if you are in that corner of the US.Woeller is a he and he's in SoCal.I don't know of anyone in Missouri but in Texas there is Jepson @ Thoughtful House.  In Oklahoma there is Baptist.  Christel sees Baptist (takes insurance) so she can tell you what he's like - I know she loves him. I don't really know much about Jepson -only that he has a book - but a book doesn't make a great DAN or doctor, it only means they wrote a book, so the only recommendation on him is that hopefully there is someone on the list that sees him that can tell you more.  

My personal opinion on pulsing antifungals, only pulse naturals.  If you pulse Rx, you'll likely cause drug resistance.  Drug resistance with yeast isn't usually permanent but also not pleasant when you have to wait to use antifungals because none of them are working.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

 

Thanks everyone for the information. Can those of you recommending Dr. Woeller tell me where he/she is located?

I'm really willing to try anyone reputable, but travelling far isn't really an option right now. Our current DAN will only do telephone consults every other appointment. If it's someone in another state they'd have to be willing to do it pretty much every time. I could probably go as far as Texas, Missouri, or Oklahoma for an initial consultation if necessary.

As for the testing we've done so far, I could write a book. The most common ones are done via Genova labs and great plains. It seems like we do stool and urine tests three times a year from these. She also does blood testing twice annually, and I couldn't even begin to tell you what she has tested. This last time we had to take ds in four weeks in row in order to collect enough blood for all of the testing. She's also done testing with other lesser known labs, urine, stool, and mouth swab, but I'll have to get out our records to say exactly where and what for. It seems like all we do is testing:)

I haven't gotten a call from our pedi or the DAN. I sent her a note to see if we could just do a shortened phone session to discuss the antiviral/antifungal stuff until I can come up with enough money for a full appt. Somehow I'm doubting that is going to work.

What kind of problems do you think we'll face if I have to stop the valtrex/diflucan so suddenly? This sucks!!!

Does anyone do pulsing with antifungals, and if so what others do you use besides diflucan?

>

> ,

>

> Can't the sister-in-law who is an immunologist help? Won't she treat your

> son with antivirals and antifungals. Both of those were huge for my son.

> We see Dr. Goldberg in Tarzana, CA, but Dr. from Port

> Arkansas. TX also does this. They are extremely traditional in their

> approach and do things medically probably closer to what your sister-in-law

> does.

>

>

>

> The initial visit must be in person. After blood tests done locally and

> there are phone appointments to monitor the meds and progress. My son is 22

> in college and fully recovered. He still needs meds to regulate his immune

> system, but he is definitely there. He just received a scholarship and paid

> internship from NASA. Email me privately if you want me to forward what we

> did. We started at age five and were with a DAN for a year before that.

> Dr. G seems to get kids better faster now than when we started because he

> has been doing this so long.

>

> Best,

>

> Marcia

>

-- 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]

No prob, I only remember b/c I considered seeing him even though it's a million miles from me LOLBut though he takes insurance it is very limited so I don't think it would be worth it for me!

 

You're so right.  It is Kansas, my bad.And yes, Temecula.  SoCal just outside of San Diego.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

On Dec 10, 2010, at 3:18 PM, Toni Marie Lombardo wrote:

 

I don't think Baptist is in OK. I believe he is in Kansas City, or actually just outside, on the Kansas side.Yes I think Dr. Woeller is in Temecula? I am from the east so my Cal. geography is not great LOL

 

Oh well I take it back, I don't know who you are seeing then if you are in that corner of the US.Woeller is a he and he's in SoCal.I don't know of anyone in Missouri but in Texas there is Jepson @ Thoughtful House.  In Oklahoma there is Baptist.  Christel sees Baptist (takes insurance) so she can tell you what he's like - I know she loves him. I don't really know much about Jepson -only that he has a book - but a book doesn't make a great DAN or doctor, it only means they wrote a book, so the only recommendation on him is that hopefully there is someone on the list that sees him that can tell you more.  

My personal opinion on pulsing antifungals, only pulse naturals.  If you pulse Rx, you'll likely cause drug resistance.  Drug resistance with yeast isn't usually permanent but also not pleasant when you have to wait to use antifungals because none of them are working.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

 

Thanks everyone for the information. Can those of you recommending Dr. Woeller tell me where he/she is located?

I'm really willing to try anyone reputable, but travelling far isn't really an option right now. Our current DAN will only do telephone consults every other appointment. If it's someone in another state they'd have to be willing to do it pretty much every time. I could probably go as far as Texas, Missouri, or Oklahoma for an initial consultation if necessary.

As for the testing we've done so far, I could write a book. The most common ones are done via Genova labs and great plains. It seems like we do stool and urine tests three times a year from these. She also does blood testing twice annually, and I couldn't even begin to tell you what she has tested. This last time we had to take ds in four weeks in row in order to collect enough blood for all of the testing. She's also done testing with other lesser known labs, urine, stool, and mouth swab, but I'll have to get out our records to say exactly where and what for. It seems like all we do is testing:)

I haven't gotten a call from our pedi or the DAN. I sent her a note to see if we could just do a shortened phone session to discuss the antiviral/antifungal stuff until I can come up with enough money for a full appt. Somehow I'm doubting that is going to work.

What kind of problems do you think we'll face if I have to stop the valtrex/diflucan so suddenly? This sucks!!!

Does anyone do pulsing with antifungals, and if so what others do you use besides diflucan?

>

> ,

>

> Can't the sister-in-law who is an immunologist help? Won't she treat your

> son with antivirals and antifungals. Both of those were huge for my son.

> We see Dr. Goldberg in Tarzana, CA, but Dr. from Port

> Arkansas. TX also does this. They are extremely traditional in their

> approach and do things medically probably closer to what your sister-in-law

> does.

>

>

>

> The initial visit must be in person. After blood tests done locally and

> there are phone appointments to monitor the meds and progress. My son is 22

> in college and fully recovered. He still needs meds to regulate his immune

> system, but he is definitely there. He just received a scholarship and paid

> internship from NASA. Email me privately if you want me to forward what we

> did. We started at age five and were with a DAN for a year before that.

> Dr. G seems to get kids better faster now than when we started because he

> has been doing this so long.

>

> Best,

>

> Marcia

>

-- 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]

No prob, I only remember b/c I considered seeing him even though it's a million miles from me LOLBut though he takes insurance it is very limited so I don't think it would be worth it for me!

 

You're so right.  It is Kansas, my bad.And yes, Temecula.  SoCal just outside of San Diego.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

On Dec 10, 2010, at 3:18 PM, Toni Marie Lombardo wrote:

 

I don't think Baptist is in OK. I believe he is in Kansas City, or actually just outside, on the Kansas side.Yes I think Dr. Woeller is in Temecula? I am from the east so my Cal. geography is not great LOL

 

Oh well I take it back, I don't know who you are seeing then if you are in that corner of the US.Woeller is a he and he's in SoCal.I don't know of anyone in Missouri but in Texas there is Jepson @ Thoughtful House.  In Oklahoma there is Baptist.  Christel sees Baptist (takes insurance) so she can tell you what he's like - I know she loves him. I don't really know much about Jepson -only that he has a book - but a book doesn't make a great DAN or doctor, it only means they wrote a book, so the only recommendation on him is that hopefully there is someone on the list that sees him that can tell you more.  

My personal opinion on pulsing antifungals, only pulse naturals.  If you pulse Rx, you'll likely cause drug resistance.  Drug resistance with yeast isn't usually permanent but also not pleasant when you have to wait to use antifungals because none of them are working.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

 

Thanks everyone for the information. Can those of you recommending Dr. Woeller tell me where he/she is located?

I'm really willing to try anyone reputable, but travelling far isn't really an option right now. Our current DAN will only do telephone consults every other appointment. If it's someone in another state they'd have to be willing to do it pretty much every time. I could probably go as far as Texas, Missouri, or Oklahoma for an initial consultation if necessary.

As for the testing we've done so far, I could write a book. The most common ones are done via Genova labs and great plains. It seems like we do stool and urine tests three times a year from these. She also does blood testing twice annually, and I couldn't even begin to tell you what she has tested. This last time we had to take ds in four weeks in row in order to collect enough blood for all of the testing. She's also done testing with other lesser known labs, urine, stool, and mouth swab, but I'll have to get out our records to say exactly where and what for. It seems like all we do is testing:)

I haven't gotten a call from our pedi or the DAN. I sent her a note to see if we could just do a shortened phone session to discuss the antiviral/antifungal stuff until I can come up with enough money for a full appt. Somehow I'm doubting that is going to work.

What kind of problems do you think we'll face if I have to stop the valtrex/diflucan so suddenly? This sucks!!!

Does anyone do pulsing with antifungals, and if so what others do you use besides diflucan?

>

> ,

>

> Can't the sister-in-law who is an immunologist help? Won't she treat your

> son with antivirals and antifungals. Both of those were huge for my son.

> We see Dr. Goldberg in Tarzana, CA, but Dr. from Port

> Arkansas. TX also does this. They are extremely traditional in their

> approach and do things medically probably closer to what your sister-in-law

> does.

>

>

>

> The initial visit must be in person. After blood tests done locally and

> there are phone appointments to monitor the meds and progress. My son is 22

> in college and fully recovered. He still needs meds to regulate his immune

> system, but he is definitely there. He just received a scholarship and paid

> internship from NASA. Email me privately if you want me to forward what we

> did. We started at age five and were with a DAN for a year before that.

> Dr. G seems to get kids better faster now than when we started because he

> has been doing this so long.

>

> Best,

>

> Marcia

>

-- 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]

that is ONE stance, I would tend to agree with your DAN that going slow can be good. you can't take a gut tore apart with IGG issues, low IGA lining, and yeast issues and then give a chelator. it can do LONG term damage. I have had to help many of those kids through the years with dr's ready to just start in on chelation with out doing all the healing that you can do before. YES there are cases where you are not going to heal everything before chelation but do try your best. however. I do have another thought for you. Baptist lives not far from you. he is an MD< takes insurance, and is in Kansas city, he is an allergist and DAN and has several recovered kids in his practice. the prices are also very reasonable

From: ideals04

Sent: Thursday, December 09, 2010 11:04 PM

To: mb12 valtrex

Subject: Re: DAN advice

Sorry not trying to be a jerk but I would ditch that DAN! It's not true that you heal the gut before chelation, the reason there are gut issues is because of heavy metal toxicity. She is stringing you along in order to kep receiving payments. You should have seen serious progress in 3 years. Research ac protocol chelation and stop wasting time and money on s dr with bad protocols who is obviously stretching things out too long. Also join the yahoo! Group recovery from autism.>> My little boy is five, has asd, and has a history of gut issues, high metals,> etc. He's currently on a prescription strength probiotic, in addition to several> other supps.> > We've been seeing a DAN for the last three years, with some> improvements. It's been very slow going, and has therefore been very difficult> to justify with our pedi who tells us constantly that it's just snake oil and a> waste of money. I also have a sister in law who is an immunologist who also has> a lot of negative impressions to give about it all. As a result of this my> husband has also been very skeptical this whole time, but has gone along with my> wishes to continue on with Dr. H. I have to admit I've let my mind play tricks> with me too, mostly because test results (lead levels, etc.) have come back> really high or abnormal on urine and stool testing with Dr. H, but then come> back normal when the pedi double checks. Dr. H diagnosed him as intolerant to> gluten via stool test, which has been highly criticized as unreliable and never> used. We've been told that the labs and test types being used by Dr. H are less> reliable, or are never used by "typical doctors". The first year that we say> her, we waited in an empty waiting room for more than an hour each time because> she was babysitting her grandbaby. The skepticism has only gotten worse in> recent months when she closed her office and started working from her> home. (My husband really wanted to leave after waiting in her driveway for a> half-hour before she came to the door last time, and that was after driving four> hours to get there.)> > I've tried to be open minded about it all, being that I don't know of any other> options and I know that DAN doctors aren't "typical, professional type> doctors", but I have to admit it's a bit strange. I've researched until I'm blue> in the face and know that the supps and testing she uses are fairly standard in> the DAN protocol, just apparently slower, more spaced out, and she tests for> more things than what seems most DAN doctors do. I've been told many times by> other "expert biomed moms" that we're simply not doing enough. You can't just> treat one thing at time and expect it to work. But, I'm not a doctor, and I want> to trust her. I actually appreciate her using less invasive testing to figure> things out. (such as the stool test for gluten intolerance, as apposed to a> stomach biopsy). When my ds had diahrea for two months that no one could stop,> which our pedi told us was normal, it was Dr. H who finally cured it simply by> giving him liquid aloe. Not traditional, not something out pedi would have ever> thought of, but it worked.> > Anyway, it's taken all of the three years we've been doing this to finally get> his gut levels (bacteria, yeast, etc) under control. Forget about chelation or> anthything else, we've solely been working on his gut this entire time. Dr. H> finally agreed to start him on an antiviral protocol using valtrex and diflucan.> (Something I bugged and begged Dr. H for the whole time, but she understandably> wouldn't start until his gut issues were controlled.) We are two months into the> antiviral protocol, and are due to have a follow up telephone appt to> go over labs we had done a few months back and to review his progress on the new> meds. We have seen some improvements as far as focus and understanding, but> somewhat of a regression in speech and definitely more hyperactivity. (I guess> that can be expected in the first few months though?) When I called today to> schedule an appointment though, I was told it would be $350.00 instead of the> usual $150 we've paid all along for a telephone appt and I have to pay up front.> We are just about out of ds's scripts and she won't refill them until we talk.> (I guess understandable again, but I kind of feel like their being held> hostage:) I know I can get his pedi to refill his scripts and do a liver check> to make sure he's handling the diflucan ok, but he won't know anything about the> behaviors he's experiencing. I almost think Dr. H has raised the rates on us because she's mad at my dh for not trusting her.> > I guess the moral of this book is, am I letting outside influences make me paranoid, or does this> sound as strange as I'm starting to think it is?> > Insurance doesn't cover her services, and I just don't know if I feel> comfortable anymore in light of the new $200 increase in cost. Everyone I know> thinks I'm just choosing to believe her because I want what she tells me to be> true. Am I really that blinded by my hopes to help my child?> > I live in Arkansas and don't know of another DAN in this state. There is one other on the DAN lists but she's stopped taking asd patients. We're close to OK, but don't know of who to go to. Anyone have any suggestions?>

[Guest guest]

that is ONE stance, I would tend to agree with your DAN that going slow can be good. you can't take a gut tore apart with IGG issues, low IGA lining, and yeast issues and then give a chelator. it can do LONG term damage. I have had to help many of those kids through the years with dr's ready to just start in on chelation with out doing all the healing that you can do before. YES there are cases where you are not going to heal everything before chelation but do try your best. however. I do have another thought for you. Baptist lives not far from you. he is an MD< takes insurance, and is in Kansas city, he is an allergist and DAN and has several recovered kids in his practice. the prices are also very reasonable

From: ideals04

Sent: Thursday, December 09, 2010 11:04 PM

To: mb12 valtrex

Subject: Re: DAN advice

Sorry not trying to be a jerk but I would ditch that DAN! It's not true that you heal the gut before chelation, the reason there are gut issues is because of heavy metal toxicity. She is stringing you along in order to kep receiving payments. You should have seen serious progress in 3 years. Research ac protocol chelation and stop wasting time and money on s dr with bad protocols who is obviously stretching things out too long. Also join the yahoo! Group recovery from autism.>> My little boy is five, has asd, and has a history of gut issues, high metals,> etc. He's currently on a prescription strength probiotic, in addition to several> other supps.> > We've been seeing a DAN for the last three years, with some> improvements. It's been very slow going, and has therefore been very difficult> to justify with our pedi who tells us constantly that it's just snake oil and a> waste of money. I also have a sister in law who is an immunologist who also has> a lot of negative impressions to give about it all. As a result of this my> husband has also been very skeptical this whole time, but has gone along with my> wishes to continue on with Dr. H. I have to admit I've let my mind play tricks> with me too, mostly because test results (lead levels, etc.) have come back> really high or abnormal on urine and stool testing with Dr. H, but then come> back normal when the pedi double checks. Dr. H diagnosed him as intolerant to> gluten via stool test, which has been highly criticized as unreliable and never> used. We've been told that the labs and test types being used by Dr. H are less> reliable, or are never used by "typical doctors". The first year that we say> her, we waited in an empty waiting room for more than an hour each time because> she was babysitting her grandbaby. The skepticism has only gotten worse in> recent months when she closed her office and started working from her> home. (My husband really wanted to leave after waiting in her driveway for a> half-hour before she came to the door last time, and that was after driving four> hours to get there.)> > I've tried to be open minded about it all, being that I don't know of any other> options and I know that DAN doctors aren't "typical, professional type> doctors", but I have to admit it's a bit strange. I've researched until I'm blue> in the face and know that the supps and testing she uses are fairly standard in> the DAN protocol, just apparently slower, more spaced out, and she tests for> more things than what seems most DAN doctors do. I've been told many times by> other "expert biomed moms" that we're simply not doing enough. You can't just> treat one thing at time and expect it to work. But, I'm not a doctor, and I want> to trust her. I actually appreciate her using less invasive testing to figure> things out. (such as the stool test for gluten intolerance, as apposed to a> stomach biopsy). When my ds had diahrea for two months that no one could stop,> which our pedi told us was normal, it was Dr. H who finally cured it simply by> giving him liquid aloe. Not traditional, not something out pedi would have ever> thought of, but it worked.> > Anyway, it's taken all of the three years we've been doing this to finally get> his gut levels (bacteria, yeast, etc) under control. Forget about chelation or> anthything else, we've solely been working on his gut this entire time. Dr. H> finally agreed to start him on an antiviral protocol using valtrex and diflucan.> (Something I bugged and begged Dr. H for the whole time, but she understandably> wouldn't start until his gut issues were controlled.) We are two months into the> antiviral protocol, and are due to have a follow up telephone appt to> go over labs we had done a few months back and to review his progress on the new> meds. We have seen some improvements as far as focus and understanding, but> somewhat of a regression in speech and definitely more hyperactivity. (I guess> that can be expected in the first few months though?) When I called today to> schedule an appointment though, I was told it would be $350.00 instead of the> usual $150 we've paid all along for a telephone appt and I have to pay up front.> We are just about out of ds's scripts and she won't refill them until we talk.> (I guess understandable again, but I kind of feel like their being held> hostage:) I know I can get his pedi to refill his scripts and do a liver check> to make sure he's handling the diflucan ok, but he won't know anything about the> behaviors he's experiencing. I almost think Dr. H has raised the rates on us because she's mad at my dh for not trusting her.> > I guess the moral of this book is, am I letting outside influences make me paranoid, or does this> sound as strange as I'm starting to think it is?> > Insurance doesn't cover her services, and I just don't know if I feel> comfortable anymore in light of the new $200 increase in cost. Everyone I know> thinks I'm just choosing to believe her because I want what she tells me to be> true. Am I really that blinded by my hopes to help my child?> > I live in Arkansas and don't know of another DAN in this state. There is one other on the DAN lists but she's stopped taking asd patients. We're close to OK, but don't know of who to go to. Anyone have any suggestions?>

[Guest guest]

that is ONE stance, I would tend to agree with your DAN that going slow can be good. you can't take a gut tore apart with IGG issues, low IGA lining, and yeast issues and then give a chelator. it can do LONG term damage. I have had to help many of those kids through the years with dr's ready to just start in on chelation with out doing all the healing that you can do before. YES there are cases where you are not going to heal everything before chelation but do try your best. however. I do have another thought for you. Baptist lives not far from you. he is an MD< takes insurance, and is in Kansas city, he is an allergist and DAN and has several recovered kids in his practice. the prices are also very reasonable

From: ideals04

Sent: Thursday, December 09, 2010 11:04 PM

To: mb12 valtrex

Subject: Re: DAN advice

Sorry not trying to be a jerk but I would ditch that DAN! It's not true that you heal the gut before chelation, the reason there are gut issues is because of heavy metal toxicity. She is stringing you along in order to kep receiving payments. You should have seen serious progress in 3 years. Research ac protocol chelation and stop wasting time and money on s dr with bad protocols who is obviously stretching things out too long. Also join the yahoo! Group recovery from autism.>> My little boy is five, has asd, and has a history of gut issues, high metals,> etc. He's currently on a prescription strength probiotic, in addition to several> other supps.> > We've been seeing a DAN for the last three years, with some> improvements. It's been very slow going, and has therefore been very difficult> to justify with our pedi who tells us constantly that it's just snake oil and a> waste of money. I also have a sister in law who is an immunologist who also has> a lot of negative impressions to give about it all. As a result of this my> husband has also been very skeptical this whole time, but has gone along with my> wishes to continue on with Dr. H. I have to admit I've let my mind play tricks> with me too, mostly because test results (lead levels, etc.) have come back> really high or abnormal on urine and stool testing with Dr. H, but then come> back normal when the pedi double checks. Dr. H diagnosed him as intolerant to> gluten via stool test, which has been highly criticized as unreliable and never> used. We've been told that the labs and test types being used by Dr. H are less> reliable, or are never used by "typical doctors". The first year that we say> her, we waited in an empty waiting room for more than an hour each time because> she was babysitting her grandbaby. The skepticism has only gotten worse in> recent months when she closed her office and started working from her> home. (My husband really wanted to leave after waiting in her driveway for a> half-hour before she came to the door last time, and that was after driving four> hours to get there.)> > I've tried to be open minded about it all, being that I don't know of any other> options and I know that DAN doctors aren't "typical, professional type> doctors", but I have to admit it's a bit strange. I've researched until I'm blue> in the face and know that the supps and testing she uses are fairly standard in> the DAN protocol, just apparently slower, more spaced out, and she tests for> more things than what seems most DAN doctors do. I've been told many times by> other "expert biomed moms" that we're simply not doing enough. You can't just> treat one thing at time and expect it to work. But, I'm not a doctor, and I want> to trust her. I actually appreciate her using less invasive testing to figure> things out. (such as the stool test for gluten intolerance, as apposed to a> stomach biopsy). When my ds had diahrea for two months that no one could stop,> which our pedi told us was normal, it was Dr. H who finally cured it simply by> giving him liquid aloe. Not traditional, not something out pedi would have ever> thought of, but it worked.> > Anyway, it's taken all of the three years we've been doing this to finally get> his gut levels (bacteria, yeast, etc) under control. Forget about chelation or> anthything else, we've solely been working on his gut this entire time. Dr. H> finally agreed to start him on an antiviral protocol using valtrex and diflucan.> (Something I bugged and begged Dr. H for the whole time, but she understandably> wouldn't start until his gut issues were controlled.) We are two months into the> antiviral protocol, and are due to have a follow up telephone appt to> go over labs we had done a few months back and to review his progress on the new> meds. We have seen some improvements as far as focus and understanding, but> somewhat of a regression in speech and definitely more hyperactivity. (I guess> that can be expected in the first few months though?) When I called today to> schedule an appointment though, I was told it would be $350.00 instead of the> usual $150 we've paid all along for a telephone appt and I have to pay up front.> We are just about out of ds's scripts and she won't refill them until we talk.> (I guess understandable again, but I kind of feel like their being held> hostage:) I know I can get his pedi to refill his scripts and do a liver check> to make sure he's handling the diflucan ok, but he won't know anything about the> behaviors he's experiencing. I almost think Dr. H has raised the rates on us because she's mad at my dh for not trusting her.> > I guess the moral of this book is, am I letting outside influences make me paranoid, or does this> sound as strange as I'm starting to think it is?> > Insurance doesn't cover her services, and I just don't know if I feel> comfortable anymore in light of the new $200 increase in cost. Everyone I know> thinks I'm just choosing to believe her because I want what she tells me to be> true. Am I really that blinded by my hopes to help my child?> > I live in Arkansas and don't know of another DAN in this state. There is one other on the DAN lists but she's stopped taking asd patients. We're close to OK, but don't know of who to go to. Anyone have any suggestions?>

[Guest guest]

Baptist is an MD in Kansas City Kansas (right over the boarder of MO) and is an allergist, immunologist, DAN, has a HBOT in office at the lowest price I have seen. he needs only 1 appointment per year and then can work long distanc with you

From:

Sent: Friday, December 10, 2010 4:55 PM

To: mb12 valtrex

Subject: Re: DAN advice

Thanks everyone for the information. Can those of you recommending Dr. Woeller tell me where he/she is located?I'm really willing to try anyone reputable, but travelling far isn't really an option right now. Our current DAN will only do telephone consults every other appointment. If it's someone in another state they'd have to be willing to do it pretty much every time. I could probably go as far as Texas, Missouri, or Oklahoma for an initial consultation if necessary.As for the testing we've done so far, I could write a book. The most common ones are done via Genova labs and great plains. It seems like we do stool and urine tests three times a year from these. She also does blood testing twice annually, and I couldn't even begin to tell you what she has tested. This last time we had to take ds in four weeks in row in order to collect enough blood for all of the testing. She's also done testing with other lesser known labs, urine, stool, and mouth swab, but I'll have to get out our records to say exactly where and what for. It seems like all we do is testing:)I haven't gotten a call from our pedi or the DAN. I sent her a note to see if we could just do a shortened phone session to discuss the antiviral/antifungal stuff until I can come up with enough money for a full appt. Somehow I'm doubting that is going to work. What kind of problems do you think we'll face if I have to stop the valtrex/diflucan so suddenly? This sucks!!!Does anyone do pulsing with antifungals, and if so what others do you use besides diflucan?>> , > > Can't the sister-in-law who is an immunologist help? Won't she treat your> son with antivirals and antifungals. Both of those were huge for my son.> We see Dr. Goldberg in Tarzana, CA, but Dr. from Port> Arkansas. TX also does this. They are extremely traditional in their> approach and do things medically probably closer to what your sister-in-law> does. > > > > The initial visit must be in person. After blood tests done locally and> there are phone appointments to monitor the meds and progress. My son is 22> in college and fully recovered. He still needs meds to regulate his immune> system, but he is definitely there. He just received a scholarship and paid> internship from NASA. Email me privately if you want me to forward what we> did. We started at age five and were with a DAN for a year before that.> Dr. G seems to get kids better faster now than when we started because he> has been doing this so long.> > Best,> > Marcia>

[Guest guest]

his prices are the lowest of any DAN you will find, he also has a benefits program for kids on specturm, he has a 501 for them called finding a cure, so those needing help

From: Toni Marie Lombardo

Sent: Friday, December 10, 2010 6:57 PM

To: mb12 valtrex

Subject: Re: Re: DAN advice

No prob, I only remember b/c I considered seeing him even though it's a million miles from me LOLBut though he takes insurance it is very limited so I don't think it would be worth it for me!

You're so right. It is Kansas, my bad.

And yes, Temecula. SoCal just outside of San Diego.

Cheryl

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

~@midian42~

On Dec 10, 2010, at 3:18 PM, Toni Marie Lombardo wrote:

I don't think Baptist is in OK. I believe he is in Kansas City, or actually just outside, on the Kansas side.Yes I think Dr. Woeller is in Temecula? I am from the east so my Cal. geography is not great LOL

Oh well I take it back, I don't know who you are seeing then if you are in that corner of the US.

Woeller is a he and he's in SoCal.

I don't know of anyone in Missouri but in Texas there is Jepson @ Thoughtful House. In Oklahoma there is Baptist. Christel sees Baptist (takes insurance) so she can tell you what he's like - I know she loves him. I don't really know much about Jepson -only that he has a book - but a book doesn't make a great DAN or doctor, it only means they wrote a book, so the only recommendation on him is that hopefully there is someone on the list that sees him that can tell you more.

My personal opinion on pulsing antifungals, only pulse naturals. If you pulse Rx, you'll likely cause drug resistance. Drug resistance with yeast isn't usually permanent but also not pleasant when you have to wait to use antifungals because none of them are working.

Cheryl

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

~@midian42~

Thanks everyone for the information. Can those of you recommending Dr. Woeller tell me where he/she is located?I'm really willing to try anyone reputable, but travelling far isn't really an option right now. Our current DAN will only do telephone consults every other appointment. If it's someone in another state they'd have to be willing to do it pretty much every time. I could probably go as far as Texas, Missouri, or Oklahoma for an initial consultation if necessary.As for the testing we've done so far, I could write a book. The most common ones are done via Genova labs and great plains. It seems like we do stool and urine tests three times a year from these. She also does blood testing twice annually, and I couldn't even begin to tell you what she has tested. This last time we had to take ds in four weeks in row in order to collect enough blood for all of the testing. She's also done testing with other lesser known labs, urine, stool, and mouth swab, but I'll have to get out our records to say exactly where and what for. It seems like all we do is testing:)I haven't gotten a call from our pedi or the DAN. I sent her a note to see if we could just do a shortened phone session to discuss the antiviral/antifungal stuff until I can come up with enough money for a full appt. Somehow I'm doubting that is going to work. What kind of problems do you think we'll face if I have to stop the valtrex/diflucan so suddenly? This sucks!!!Does anyone do pulsing with antifungals, and if so what others do you use besides diflucan?>> , > > Can't the sister-in-law who is an immunologist help? Won't she treat your> son with antivirals and antifungals. Both of those were huge for my son.> We see Dr. Goldberg in Tarzana, CA, but Dr. from Port> Arkansas. TX also does this. They are extremely traditional in their> approach and do things medically probably closer to what your sister-in-law> does. > > > > The initial visit must be in person. After blood tests done locally and> there are phone appointments to monitor the meds and progress. My son is 22> in college and fully recovered. He still needs meds to regulate his immune> system, but he is definitely there. He just received a scholarship and paid> internship from NASA. Email me privately if you want me to forward what we> did. We started at age five and were with a DAN for a year before that.> Dr. G seems to get kids better faster now than when we started because he> has been doing this so long.> > Best,> > Marcia>

-- 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]

his prices are the lowest of any DAN you will find, he also has a benefits program for kids on specturm, he has a 501 for them called finding a cure, so those needing help

From: Toni Marie Lombardo

Sent: Friday, December 10, 2010 6:57 PM

To: mb12 valtrex

Subject: Re: Re: DAN advice

No prob, I only remember b/c I considered seeing him even though it's a million miles from me LOLBut though he takes insurance it is very limited so I don't think it would be worth it for me!

You're so right. It is Kansas, my bad.

And yes, Temecula. SoCal just outside of San Diego.

Cheryl

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

~@midian42~

On Dec 10, 2010, at 3:18 PM, Toni Marie Lombardo wrote:

I don't think Baptist is in OK. I believe he is in Kansas City, or actually just outside, on the Kansas side.Yes I think Dr. Woeller is in Temecula? I am from the east so my Cal. geography is not great LOL

Oh well I take it back, I don't know who you are seeing then if you are in that corner of the US.

Woeller is a he and he's in SoCal.

I don't know of anyone in Missouri but in Texas there is Jepson @ Thoughtful House. In Oklahoma there is Baptist. Christel sees Baptist (takes insurance) so she can tell you what he's like - I know she loves him. I don't really know much about Jepson -only that he has a book - but a book doesn't make a great DAN or doctor, it only means they wrote a book, so the only recommendation on him is that hopefully there is someone on the list that sees him that can tell you more.

My personal opinion on pulsing antifungals, only pulse naturals. If you pulse Rx, you'll likely cause drug resistance. Drug resistance with yeast isn't usually permanent but also not pleasant when you have to wait to use antifungals because none of them are working.

Cheryl

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

~@midian42~

Thanks everyone for the information. Can those of you recommending Dr. Woeller tell me where he/she is located?I'm really willing to try anyone reputable, but travelling far isn't really an option right now. Our current DAN will only do telephone consults every other appointment. If it's someone in another state they'd have to be willing to do it pretty much every time. I could probably go as far as Texas, Missouri, or Oklahoma for an initial consultation if necessary.As for the testing we've done so far, I could write a book. The most common ones are done via Genova labs and great plains. It seems like we do stool and urine tests three times a year from these. She also does blood testing twice annually, and I couldn't even begin to tell you what she has tested. This last time we had to take ds in four weeks in row in order to collect enough blood for all of the testing. She's also done testing with other lesser known labs, urine, stool, and mouth swab, but I'll have to get out our records to say exactly where and what for. It seems like all we do is testing:)I haven't gotten a call from our pedi or the DAN. I sent her a note to see if we could just do a shortened phone session to discuss the antiviral/antifungal stuff until I can come up with enough money for a full appt. Somehow I'm doubting that is going to work. What kind of problems do you think we'll face if I have to stop the valtrex/diflucan so suddenly? This sucks!!!Does anyone do pulsing with antifungals, and if so what others do you use besides diflucan?>> , > > Can't the sister-in-law who is an immunologist help? Won't she treat your> son with antivirals and antifungals. Both of those were huge for my son.> We see Dr. Goldberg in Tarzana, CA, but Dr. from Port> Arkansas. TX also does this. They are extremely traditional in their> approach and do things medically probably closer to what your sister-in-law> does. > > > > The initial visit must be in person. After blood tests done locally and> there are phone appointments to monitor the meds and progress. My son is 22> in college and fully recovered. He still needs meds to regulate his immune> system, but he is definitely there. He just received a scholarship and paid> internship from NASA. Email me privately if you want me to forward what we> did. We started at age five and were with a DAN for a year before that.> Dr. G seems to get kids better faster now than when we started because he> has been doing this so long.> > Best,> > Marcia>

-- 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]

If your in southern California why not see Jerri Kartzinel?

BTW the poster who posted that you heal the guy first and then chelate is 100%

wrong, sorry.

> > >

> > > ,

> > >

> > > Can't the sister-in-law who is an immunologist help? Won't she treat your

> > > son with antivirals and antifungals. Both of those were huge for my son.

> > > We see Dr. Goldberg in Tarzana, CA, but Dr. from Port

> > > Arkansas. TX also does this. They are extremely traditional in their

> > > approach and do things medically probably closer to what your

sister-in-law

> > > does.

> > >

> > >

> > >

> > > The initial visit must be in person. After blood tests done locally and

> > > there are phone appointments to monitor the meds and progress. My son is

22

> > > in college and fully recovered. He still needs meds to regulate his immune

> > > system, but he is definitely there. He just received a scholarship and

paid

> > > internship from NASA. Email me privately if you want me to forward what we

> > > did. We started at age five and were with a DAN for a year before that.

> > > Dr. G seems to get kids better faster now than when we started because he

> > > has been doing this so long.

> > >

> > > Best,

> > >

> > > Marcia

> > >

> >

> >

>

[Guest guest]

Cheryl--Do you all see Dr G ??---What do you think---I am scheduled for my daughter to see him iin March--Bill

To: mb12 valtrex Sent: Fri, December 10, 2010 12:14:14 PMSubject: Re: Re: DAN advice

I've heard good things about DeMio but I can't be very specific as I've never gotten more than a "he's great" from anyone. I'm not sure where he stands on antivirals and such. I think he might be on the conservative side. You might try asking the TACA-USA list if no one is able to answer here.

Cheryl

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

~@midian42~

Sorry to pipe in, but since the subject is about DAN DOCS, I was wondering if anyone has seen Dr DeMio. He is a DAN DOC from Seven Hills, OH and I think he also has an office in Cleveland. Just looking for some input if there is any.................thanks. Re: Re: DAN advice>> ,>> Can’t the sister-in-law who is an immunologist help? Won’t she treat your sonwith

antivirals and antifungals.Not likely. I suppose it's certainly possible if you have a *very* openimmunologist but I highly doubt her sil is one given the response she's gottenfrom sil. Even Dr. G has not reached mainstream medicine and while many doctorsfind giving antivirals relatively harmless, they don't find it even remotelynecessary and therefor aren't willing to do it. Antifungals, on the other hand,you'd be hard-pressed to find one willing to Rx one long term.My (former) pediatrician thought Dr. G was just as much of a quack as he thoughtDANs were when we were seeing him (the pediatrician). That would be why he ismy *former* pediatrician. :)Cheryl>------------------------------------

[Guest guest]

Cheryl--Do you all see Dr G ??---What do you think---I am scheduled for my daughter to see him iin March--Bill

To: mb12 valtrex Sent: Fri, December 10, 2010 12:14:14 PMSubject: Re: Re: DAN advice

I've heard good things about DeMio but I can't be very specific as I've never gotten more than a "he's great" from anyone. I'm not sure where he stands on antivirals and such. I think he might be on the conservative side. You might try asking the TACA-USA list if no one is able to answer here.

Cheryl

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

~@midian42~

Sorry to pipe in, but since the subject is about DAN DOCS, I was wondering if anyone has seen Dr DeMio. He is a DAN DOC from Seven Hills, OH and I think he also has an office in Cleveland. Just looking for some input if there is any.................thanks. Re: Re: DAN advice>> ,>> Can’t the sister-in-law who is an immunologist help? Won’t she treat your sonwith

antivirals and antifungals.Not likely. I suppose it's certainly possible if you have a *very* openimmunologist but I highly doubt her sil is one given the response she's gottenfrom sil. Even Dr. G has not reached mainstream medicine and while many doctorsfind giving antivirals relatively harmless, they don't find it even remotelynecessary and therefor aren't willing to do it. Antifungals, on the other hand,you'd be hard-pressed to find one willing to Rx one long term.My (former) pediatrician thought Dr. G was just as much of a quack as he thoughtDANs were when we were seeing him (the pediatrician). That would be why he ismy *former* pediatrician. :)Cheryl>------------------------------------

[Guest guest]

No, we do not see Dr. G any longer. Left over 2 years ago.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

Cheryl--Do you all see Dr G ??---What do you think---I am scheduled for my daughter to see him iin March--Bill

To: mb12 valtrex Sent: Fri, December 10, 2010 12:14:14 PMSubject: Re: Re: DAN advice I've heard good things about DeMio but I can't be very specific as I've never gotten more than a "he's great" from anyone. I'm not sure where he stands on antivirals and such. I think he might be on the conservative side. You might try asking the TACA-USA list if no one is able to answer here.

Cheryl

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

~@midian42~

Sorry to pipe in, but since the subject is about DAN DOCS, I was wondering if anyone has seen Dr DeMio. He is a DAN DOC from Seven Hills, OH and I think he also has an office in Cleveland. Just looking for some input if there is any.................thanks. Re: Re: DAN advice>> ,>> Can’t the sister-in-law who is an immunologist help? Won’t she treat your sonwith

antivirals and antifungals.Not likely. I suppose it's certainly possible if you have a *very* openimmunologist but I highly doubt her sil is one given the response she's gottenfrom sil. Even Dr. G has not reached mainstream medicine and while many doctorsfind giving antivirals relatively harmless, they don't find it even remotelynecessary and therefor aren't willing to do it. Antifungals, on the other hand,you'd be hard-pressed to find one willing to Rx one long term.My (former) pediatrician thought Dr. G was just as much of a quack as he thoughtDANs were when we were seeing him (the pediatrician). That would be why he ismy *former* pediatrician. :)Cheryl>------------------------------------

[Guest guest]

Can I ask why -or can you give me any advise--thanks----I am in the process of breaking the bank to get to him---if you want to my other e-mail bill.luce@...

To: mb12 valtrex Sent: Fri, December 10, 2010 10:13:33 PMSubject: Re: Re: DAN advice

No, we do not see Dr. G any longer. Left over 2 years ago.

Cheryl

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

~@midian42~

Cheryl--Do you all see Dr G ??---What do you think---I am scheduled for my daughter to see him iin March--Bill

To: mb12 valtrex Sent: Fri, December 10, 2010 12:14:14 PMSubject: Re: Re: DAN advice

I've heard good things about DeMio but I can't be very specific as I've never gotten more than a "he's great" from anyone. I'm not sure where he stands on antivirals and such. I think he might be on the conservative side. You might try asking the TACA-USA list if no one is able to answer here.

Cheryl

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

~@midian42~

Sorry to pipe in, but since the subject is about DAN DOCS, I was wondering if anyone has seen Dr DeMio. He is a DAN DOC from Seven Hills, OH and I think he also has an office in Cleveland. Just looking for some input if there is any.................thanks. Re: Re: DAN advice>> ,>> Can’t the sister-in-law who is an immunologist help? Won’t she treat your sonwith

antivirals and antifungals.Not likely. I suppose it's certainly possible if you have a *very* openimmunologist but I highly doubt her sil is one given the response she's gottenfrom sil. Even Dr. G has not reached mainstream medicine and while many doctorsfind giving antivirals relatively harmless, they don't find it even remotelynecessary and therefor aren't willing to do it. Antifungals, on the other hand,you'd be hard-pressed to find one willing to Rx one long term.My (former) pediatrician thought Dr. G was just as much of a quack as he thoughtDANs were when we were seeing him (the pediatrician). That would be why he ismy *former* pediatrician. :)Cheryl>------------------------------------

[Guest guest]

*warning: this is really long (I got a bit long winded)*It's been hashed over several times on the list if you want to check the archives. But the real root of the matter is simply that my son started reacting very negatively to the SSRIs. It was gradual process and after several SSRIs, quicker declines with every one (it was so gradual it took me a while to figure out it was the SSRIs), it just wasn't worth it to continue to be terrified of my son and his psychotic behavior. The moment we decided to wean him off the SSRIs was when we wondered if he would get a knife and kill us in our sleep. He was 4.5 at the time (he started them when he was 3). No one should ever have to think that about a 4.5 year old that used to be sweet and affectionate. In the first probably 6 months it was great. When he started to decline with behavioral problems, the SSRI was switched. He declined in a shorter amount of time and we switched again. The decline was even shorter. And with each decline, the behavioral issues were getting more severe. Until finally he just snapped and it was like there was no trace of him left. There were other things that led to us leaving, too but nothing I'm going to go into on the list again and really, this was the most important reason. Like I said, you can search the archives if you really want to know.Based on *my* experience with *my* son, he should never have been given these drugs. They don't do safety tests with antipsychotics or antidepressants on 3 year olds. Not everyone has the same results. Some do very well. But my son absolutely did not. But from what I've learned, I'm never messing with brain chemistry like that again. There is no test for this. There is nothing that you can do that says whether or not you need it. The only sure fire way to know if you even need it is to be clinically depressed and even then, there's no guarantee it will work or that you won't have the myriad of side effects that go with them. You can pull all the serotonin levels you want from blood or urine but that doesn't tell you what's going on *in the brain*. Even Dr. G once told me that only way to know how much is in the brain is through spinal fluid and no one would or should do that on a whim. Dr. G uses them to increase blood flow to the brain. I believe that. Although I haven't been able to find the studies again, I do remember seeing studies that referenced increase blood flow (and I've posted them before although it may have been on the NIDS list). But it's the other things it's doing that matter, too. You know, the thing it was actually created for? That's where my problem lies. That's where my son's problem laid.I'm not trying to discourage you from seeing Dr. G. If you think it's the right thing to do for your child, more power to you and I wish you the very best of luck. I hope that your son turns out just like Marcia's and the others that he's recovered. The antiviral and antifungal part was huge for my son. And Dr. G also put him on a long term abx that was also huge for my son. I can't deny how much my son really was helped by him. But the SSRIs did more damage than even I could have imagined. I have no idea if he was hallucinating or hearing things at the time because he couldn't tell me those things but something went very, very wrong. It took me almost 2 months to wean him off and another month before my son returned to normal. When he returned to normal his whole life changed for the better. Good luck with Dr. G and I mean that with all sincerity. Not all kids react like mine did. But I'm not ever going to say that I think it's okay to give a child SSRIs when there's no evidence that you need to go in and alter brain chemistry (and by evidence I mean a child that is not showing any symptoms of what an SSRI is meant to alleviate). That only comes from my personal experience. There is no protocol that has enough science behind it. Not DAN, not NIDS, not homeopathy, nothing. NIDS can attack DAN all day long about the lack of science and DAN can do the same to NIDS using the exact same argument but at the end of the day, *neither* of them have enough science or mainstream medical acceptance. So it's up to us as parents to research everything we can and do what we feel is the safest thing for our kids, even if that means doing nothing. If seeing Dr. G makes you feel like he's got some answers for you, then by all means, go for it. My experience isn't a cautionary tale for *you*, it's a cautionary tale for *me*.I chose to see him even after all the e-mails I got from people saying don't do it. And I would do it again. My point by saying that I would do it again is this: It was the right thing for me to do at the time. I learned a lot from that experience. And while I saw him I had the time to learn about other protocols because really, there isn't a whole lot time consumption with NIDS. And I learned not to give my son SSRIs. To me, my son fit Dr. G in every way (but looking back, all kids do because all our kids have immune issues). So I went. I'll never say I'm not glad I did. I'll only say I wish I had left sooner because it would have saved my son several months of being *completely* out of control.Do what you think is right for your child. If Dr. G is right for you, then go. You'll know in your own time whether or not it was the right choice. The good news is that if it isn't the right choice, you'll likely spot it sooner than I did. And more good news, you'll still be helped by him in some way. And even better, it's not like it's a permanent choice. You're not marrying him and you don't have to go through a hideous custody battle to divorce him.My only suggestion is to make sure this is where you want to start. And I would say that with absolutely any protocol. It's expensive to see a doctor that doesn't take your insurance (or any insurance at all) and it's hard to come up with the money. I have friends that have spent just as much seeing Dr. G because he didn't take their insurance as they've spent on a DAN. So just be wise about your money. Whatever you choose to do, commit to it for as long as you think you should and no more. If you have to move on to the next option, then do so. Don't waste money doing something that isn't working and research, research, research because there's more than one way to skin a cat and the more you know, the better choices you can make which will save you money in the long run. Don't do anything you don't feel 100% comfortable doing, even if you later find out it wasn't a good choice or it simply didn't do anything, you still need to have been 100% comfortable with that initial choice. You're going to have regrets. We all do. Don't add to that burden by doing something you aren't comfortable with. And above all else, listen to your child. Pay attention to the signs and signals your daughter is giving you because she is going to be the real gauge of what you are doing.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

Can I ask why -or can you give me any advise--thanks----I am in the process of breaking the bank to get to him---if you want to my other e-mail bill.luce@...

To: mb12 valtrex Sent: Fri, December 10, 2010 10:13:33 PMSubject: Re: Re: DAN advice No, we do not see Dr. G any longer. Left over 2 years ago.

Cheryl

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

~@midian42~

Cheryl--Do you all see Dr G ??---What do you think---I am scheduled for my daughter to see him iin March--Bill

To: mb12 valtrex Sent: Fri, December 10, 2010 12:14:14 PMSubject: Re: Re: DAN advice I've heard good things about DeMio but I can't be very specific as I've never gotten more than a "he's great" from anyone. I'm not sure where he stands on antivirals and such. I think he might be on the conservative side. You might try asking the TACA-USA list if no one is able to answer here.

Cheryl

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

~@midian42~

Sorry to pipe in, but since the subject is about DAN DOCS, I was wondering if anyone has seen Dr DeMio. He is a DAN DOC from Seven Hills, OH and I think he also has an office in Cleveland. Just looking for some input if there is any.................thanks. Re: Re: DAN advice>> ,>> Can’t the sister-in-law who is an immunologist help? Won’t she treat your sonwith

antivirals and antifungals.Not likely. I suppose it's certainly possible if you have a *very* openimmunologist but I highly doubt her sil is one given the response she's gottenfrom sil. Even Dr. G has not reached mainstream medicine and while many doctorsfind giving antivirals relatively harmless, they don't find it even remotelynecessary and therefor aren't willing to do it. Antifungals, on the other hand,you'd be hard-pressed to find one willing to Rx one long term.My (former) pediatrician thought Dr. G was just as much of a quack as he thoughtDANs were when we were seeing him (the pediatrician). That would be why he ismy *former* pediatrician. :)Cheryl>------------------------------------

[Guest guest]

Thank you for your detailed and frank response, for I need it during these difficult times to help with all of this. I will search the archives and get as smart as I can get on the issues. What I still do not understand with the conflict between NIDS and DAN on chelation is that can a childs systems with the genetic gene defects (C677T for example) ever chelate the hvy metals on its own? I know Stan's sons body dumped the hvy metals when the viral load came down BUT did Ethan have genetic defects in the detox pathways??? STAN--Anybody--as always--thanks so much for all the help these past 3 yrs.--Bill

To: mb12 valtrex Sent: Sat, December 11, 2010 12:06:02 AMSubject: Re: Re: DAN advice

*warning: this is really long (I got a bit long winded)*

It's been hashed over several times on the list if you want to check the archives. But the real root of the matter is simply that my son started reacting very negatively to the SSRIs. It was gradual process and after several SSRIs, quicker declines with every one (it was so gradual it took me a while to figure out it was the SSRIs), it just wasn't worth it to continue to be terrified of my son and his psychotic behavior. The moment we decided to wean him off the SSRIs was when we wondered if he would get a knife and kill us in our sleep. He was 4.5 at the time (he started them when he was 3). No one should ever have to think that about a 4.5 year old that used to be sweet and affectionate. In the first probably 6 months it was great. When he started to decline with behavioral problems, the SSRI was switched. He declined in a shorter amount of time and we switched again. The decline was

even shorter. And with each decline, the behavioral issues were getting more severe. Until finally he just snapped and it was like there was no trace of him left. There were other things that led to us leaving, too but nothing I'm going to go into on the list again and really, this was the most important reason. Like I said, you can search the archives if you really want to know.

Based on *my* experience with *my* son, he should never have been given these drugs. They don't do safety tests with antipsychotics or antidepressants on 3 year olds. Not everyone has the same results. Some do very well. But my son absolutely did not. But from what I've learned, I'm never messing with brain chemistry like that again.

There is no test for this. There is nothing that you can do that says whether or not you need it. The only sure fire way to know if you even need it is to be clinically depressed and even then, there's no guarantee it will work or that you won't have the myriad of side effects that go with them. You can pull all the serotonin levels you want from blood or urine but that doesn't tell you what's going on *in the brain*. Even Dr. G once told me that only way to know how much is in the brain is through spinal fluid and no one would or should do that on a whim. Dr. G uses them to increase blood flow to the brain. I believe that. Although I haven't been able to find the studies again, I do remember seeing studies that referenced increase blood flow (and I've posted them before although it may have been on the NIDS list). But it's the other things it's doing that matter, too. You know, the thing it was

actually created for? That's where my problem lies. That's where my son's problem laid.

I'm not trying to discourage you from seeing Dr. G. If you think it's the right thing to do for your child, more power to you and I wish you the very best of luck. I hope that your son turns out just like Marcia's and the others that he's recovered. The antiviral and antifungal part was huge for my son. And Dr. G also put him on a long term abx that was also huge for my son. I can't deny how much my son really was helped by him. But the SSRIs did more damage than even I could have imagined. I have no idea if he was hallucinating or hearing things at the time because he couldn't tell me those things but something went very, very wrong. It took me almost 2 months to wean him off and another month before my son returned to normal. When he returned to normal his whole life changed for the better.

Good luck with Dr. G and I mean that with all sincerity. Not all kids react like mine did. But I'm not ever going to say that I think it's okay to give a child SSRIs when there's no evidence that you need to go in and alter brain chemistry (and by evidence I mean a child that is not showing any symptoms of what an SSRI is meant to alleviate). That only comes from my personal experience.

There is no protocol that has enough science behind it. Not DAN, not NIDS, not homeopathy, nothing. NIDS can attack DAN all day long about the lack of science and DAN can do the same to NIDS using the exact same argument but at the end of the day, *neither* of them have enough science or mainstream medical acceptance. So it's up to us as parents to research everything we can and do what we feel is the safest thing for our kids, even if that means doing nothing. If seeing Dr. G makes you feel like he's got some answers for you, then by all means, go for it. My experience isn't a cautionary tale for *you*, it's a cautionary tale for *me*.

I chose to see him even after all the e-mails I got from people saying don't do it. And I would do it again. My point by saying that I would do it again is this: It was the right thing for me to do at the time. I learned a lot from that experience. And while I saw him I had the time to learn about other protocols because really, there isn't a whole lot time consumption with NIDS. And I learned not to give my son SSRIs. To me, my son fit Dr. G in every way (but looking back, all kids do because all our kids have immune issues). So I went. I'll never say I'm not glad I did. I'll only say I wish I had left sooner because it would have saved my son several months of being *completely* out of control.

Do what you think is right for your child. If Dr. G is right for you, then go. You'll know in your own time whether or not it was the right choice. The good news is that if it isn't the right choice, you'll likely spot it sooner than I did. And more good news, you'll still be helped by him in some way. And even better, it's not like it's a permanent choice. You're not marrying him and you don't have to go through a hideous custody battle to divorce him.

My only suggestion is to make sure this is where you want to start. And I would say that with absolutely any protocol. It's expensive to see a doctor that doesn't take your insurance (or any insurance at all) and it's hard to come up with the money. I have friends that have spent just as much seeing Dr. G because he didn't take their insurance as they've spent on a DAN. So just be wise about your money. Whatever you choose to do, commit to it for as long as you think you should and no more. If you have to move on to the next option, then do so. Don't waste money doing something that isn't working and research, research, research because there's more than one way to skin a cat and the more you know, the better choices you can make which will save you money in the long run. Don't do anything you don't feel 100% comfortable doing, even if you later find out it wasn't a good choice or it simply

didn't do anything, you still need to have been 100% comfortable with that initial choice. You're going to have regrets. We all do. Don't add to that burden by doing something you aren't comfortable with. And above all else, listen to your child. Pay attention to the signs and signals your daughter is giving you because she is going to be the real gauge of what you are doing.

Cheryl

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

~@midian42~

Can I ask why -or can you give me any advise--thanks----I am in the process of breaking the bank to get to him---if you want to my other e-mail bill.luce@...

To: mb12 valtrex Sent: Fri, December 10, 2010 10:13:33 PMSubject: Re: Re: DAN advice

No, we do not see Dr. G any longer. Left over 2 years ago.

Cheryl

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

~@midian42~

Cheryl--Do you all see Dr G ??---What do you think---I am scheduled for my daughter to see him iin March--Bill

To: mb12 valtrex Sent: Fri, December 10, 2010 12:14:14 PMSubject: Re: Re: DAN advice

I've heard good things about DeMio but I can't be very specific as I've never gotten more than a "he's great" from anyone. I'm not sure where he stands on antivirals and such. I think he might be on the conservative side. You might try asking the TACA-USA list if no one is able to answer here.

Cheryl

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

~@midian42~

Sorry to pipe in, but since the subject is about DAN DOCS, I was wondering if anyone has seen Dr DeMio. He is a DAN DOC from Seven Hills, OH and I think he also has an office in Cleveland. Just looking for some input if there is any.................thanks. Re: Re: DAN advice>> ,>> Can’t the sister-in-law who is an immunologist help? Won’t she treat your sonwith

antivirals and antifungals.Not likely. I suppose it's certainly possible if you have a *very* openimmunologist but I highly doubt her sil is one given the response she's gottenfrom sil. Even Dr. G has not reached mainstream medicine and while many doctorsfind giving antivirals relatively harmless, they don't find it even remotelynecessary and therefor aren't willing to do it. Antifungals, on the other hand,you'd be hard-pressed to find one willing to Rx one long term.My (former) pediatrician thought Dr. G was just as much of a quack as he thoughtDANs were when we were seeing him (the pediatrician). That would be why he ismy *former* pediatrician. :)Cheryl>------------------------------------

[Guest guest]

Cheryl,I just wanted to say I think you explained this well to Bill. We all need to do what works best for our kids.Marcia

[Guest guest]

Cheryl,I just wanted to say I think you explained this well to Bill. We all need to do what works best for our kids.Marcia

[Guest guest]

The answer to that is "who knows". Even Yasko will tell you that just because there is a mutation, it doesn't mean it isn't working. It just means that there is a *very real possibility* that gene isn't working *or* is working in a weakened state (unless it's completed deleted, of course). And don't forget about the incredible amount of genes that we *don't* test through Yasko. She tests 30 some odd genes but there are many more and we don't know how they are working in conjunction with the other genes we haven't tested. That's why as much as I love Yasko, there are just as many kids on her protocol as anyone else's that don't recover. (BTW, we just got our Yasko results last month, I was *super* excited to finally get that test done!)The heavy metal burden our kids have is likely due to more than just a gene. It's everything combined that causes a poorly functioning immune and metabolic system. The answer to that question is the same as "will Cheryl's son ever be able to get off antivirals?" There is no answer for that. The only thing you can do is hope and continue to work on it maybe you'll find an answer. I will give my son antivirals until the day he has to make his own choice on whether or not he wants to take them if that's what it comes down to. In my opinion, people want to over define recovery and then there are so many little variations ("managed" recovery, "complete recovery", etc) when the fact of the matter is, we'll take recovery any way we can get it and it's not reasonable to expect that our kids won't have *any* issues, NT kids have issues, too and we shouldn't hold our kids to a higher standard than we hold of NT kids. If it means that we have to give them something or somethings for the rest of their lives in order for them to function at a socially acceptable level, then we will. No one can tell me my son isn't recovered because he's still taking something to keep him functioning at that level. If he can take a pill or two that has him functioning at a typical (or typical enough) level, then clearly there is a biological component and it's not a psychiatric *behavioral* problem. And even to that end, I think that people with psychiatric disorders should be treated *medically* (throw the DSMIV out the window!! because these disorders stem from a very real chemical imbalance in the brain (and who knows what else - even sociopaths will show in a brain scan that it isn't functioning the same way as a typical brain) which would clearly make it biological in nature - but I digress...) The point of all of this is to give our kids a better life. Sure, I would love to be at a point where he doesn't need anything. But that doesn't mean I give up on the idea that he could get to that point and it also doesn't mean that he isn't behaving in a "typical" manner. I'll always give him the amount of support he needs and yes, it's possible he'll need it for the rest of his life. It's also possible he won't. Maybe by the time he's a teenager and driving a car, he won't need anything or he'll be able to control it on his own. Who knows. So the answer to your question, again, is WHO KNOWS? Some will, some won't. And some won't ever know the difference because they aren't able to reach that point. At best, we're all just shooting in the dark hoping the meager science we have will help us with a total lack of support from mainstream medicine. They're too busy trying to prove us wrong than to help us find out the *truth* of the matter. And honestly, it doesn't matter what Stan's son did. What worked for him isn't going to work for everyone. Stan says his son was recovered in 9 months. The majority of kids don't recover that fast, if at all. They found what worked for him and he clearly didn't have the extensive issues other kids had. Most kids will start dumping metals when the viral load is alleviated because viruses hold on to metals. The more the immune system is over-taxed, the less effective it's going to be *everywhere* which means if you have an extreme viral load, your body isn't going to be able to do all the things it needs to do effectively, including detoxing metals. As to whether or not your child will be the same, there is no one that can answer that question. You might need more, you might need less than Ethan. The biggest problem that I see is that too many parents want to compare their kids. Comparison helps to tease out issues and solutions and it's important that we all compare notes. But we have to make sure our expectations are realistic. Success stories are wonderful and we all love hearing them and hoping our kids turn out the same way. But you can't put a timeline or specific expectation of being completely free of anything on yourself or your child. Be hopeful but know that all kids are different and all their needs are different. You simply do what you need to do.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

Thank you for your detailed and frank response, for I need it during these difficult times to help with all of this. I will search the archives and get as smart as I can get on the issues. What I still do not understand with the conflict between NIDS and DAN on chelation is that can a childs systems with the genetic gene defects (C677T for example) ever chelate the hvy metals on its own? I know Stan's sons body dumped the hvy metals when the viral load came down BUT did Ethan have genetic defects in the detox pathways??? STAN--Anybody--as always--thanks so much for all the help these past 3 yrs.--Bill

To: mb12 valtrex Sent: Sat, December 11, 2010 12:06:02 AMSubject: Re: Re: DAN advice

*warning: this is really long (I got a bit long winded)*

It's been hashed over several times on the list if you want to check the archives. But the real root of the matter is simply that my son started reacting very negatively to the SSRIs. It was gradual process and after several SSRIs, quicker declines with every one (it was so gradual it took me a while to figure out it was the SSRIs), it just wasn't worth it to continue to be terrified of my son and his psychotic behavior. The moment we decided to wean him off the SSRIs was when we wondered if he would get a knife and kill us in our sleep. He was 4.5 at the time (he started them when he was 3). No one should ever have to think that about a 4.5 year old that used to be sweet and affectionate. In the first probably 6 months it was great. When he started to decline with behavioral problems, the SSRI was switched. He declined in a shorter amount of time and we switched again. The decline was

even shorter. And with each decline, the behavioral issues were getting more severe. Until finally he just snapped and it was like there was no trace of him left. There were other things that led to us leaving, too but nothing I'm going to go into on the list again and really, this was the most important reason. Like I said, you can search the archives if you really want to know.

Based on *my* experience with *my* son, he should never have been given these drugs. They don't do safety tests with antipsychotics or antidepressants on 3 year olds. Not everyone has the same results. Some do very well. But my son absolutely did not. But from what I've learned, I'm never messing with brain chemistry like that again.

There is no test for this. There is nothing that you can do that says whether or not you need it. The only sure fire way to know if you even need it is to be clinically depressed and even then, there's no guarantee it will work or that you won't have the myriad of side effects that go with them. You can pull all the serotonin levels you want from blood or urine but that doesn't tell you what's going on *in the brain*. Even Dr. G once told me that only way to know how much is in the brain is through spinal fluid and no one would or should do that on a whim. Dr. G uses them to increase blood flow to the brain. I believe that. Although I haven't been able to find the studies again, I do remember seeing studies that referenced increase blood flow (and I've posted them before although it may have been on the NIDS list). But it's the other things it's doing that matter, too. You know, the thing it was

actually created for? That's where my problem lies. That's where my son's problem laid.

I'm not trying to discourage you from seeing Dr. G. If you think it's the right thing to do for your child, more power to you and I wish you the very best of luck. I hope that your son turns out just like Marcia's and the others that he's recovered. The antiviral and antifungal part was huge for my son. And Dr. G also put him on a long term abx that was also huge for my son. I can't deny how much my son really was helped by him. But the SSRIs did more damage than even I could have imagined. I have no idea if he was hallucinating or hearing things at the time because he couldn't tell me those things but something went very, very wrong. It took me almost 2 months to wean him off and another month before my son returned to normal. When he returned to normal his whole life changed for the better.

Good luck with Dr. G and I mean that with all sincerity. Not all kids react like mine did. But I'm not ever going to say that I think it's okay to give a child SSRIs when there's no evidence that you need to go in and alter brain chemistry (and by evidence I mean a child that is not showing any symptoms of what an SSRI is meant to alleviate). That only comes from my personal experience.

There is no protocol that has enough science behind it. Not DAN, not NIDS, not homeopathy, nothing. NIDS can attack DAN all day long about the lack of science and DAN can do the same to NIDS using the exact same argument but at the end of the day, *neither* of them have enough science or mainstream medical acceptance. So it's up to us as parents to research everything we can and do what we feel is the safest thing for our kids, even if that means doing nothing. If seeing Dr. G makes you feel like he's got some answers for you, then by all means, go for it. My experience isn't a cautionary tale for *you*, it's a cautionary tale for *me*.

I chose to see him even after all the e-mails I got from people saying don't do it. And I would do it again. My point by saying that I would do it again is this: It was the right thing for me to do at the time. I learned a lot from that experience. And while I saw him I had the time to learn about other protocols because really, there isn't a whole lot time consumption with NIDS. And I learned not to give my son SSRIs. To me, my son fit Dr. G in every way (but looking back, all kids do because all our kids have immune issues). So I went. I'll never say I'm not glad I did. I'll only say I wish I had left sooner because it would have saved my son several months of being *completely* out of control.

Do what you think is right for your child. If Dr. G is right for you, then go. You'll know in your own time whether or not it was the right choice. The good news is that if it isn't the right choice, you'll likely spot it sooner than I did. And more good news, you'll still be helped by him in some way. And even better, it's not like it's a permanent choice. You're not marrying him and you don't have to go through a hideous custody battle to divorce him.

My only suggestion is to make sure this is where you want to start. And I would say that with absolutely any protocol. It's expensive to see a doctor that doesn't take your insurance (or any insurance at all) and it's hard to come up with the money. I have friends that have spent just as much seeing Dr. G because he didn't take their insurance as they've spent on a DAN. So just be wise about your money. Whatever you choose to do, commit to it for as long as you think you should and no more. If you have to move on to the next option, then do so. Don't waste money doing something that isn't working and research, research, research because there's more than one way to skin a cat and the more you know, the better choices you can make which will save you money in the long run. Don't do anything you don't feel 100% comfortable doing, even if you later find out it wasn't a good choice or it simply

didn't do anything, you still need to have been 100% comfortable with that initial choice. You're going to have regrets. We all do. Don't add to that burden by doing something you aren't comfortable with. And above all else, listen to your child. Pay attention to the signs and signals your daughter is giving you because she is going to be the real gauge of what you are doing.

Cheryl

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

~@midian42~

Can I ask why -or can you give me any advise--thanks----I am in the process of breaking the bank to get to him---if you want to my other e-mail bill.luce@...

To: mb12 valtrex Sent: Fri, December 10, 2010 10:13:33 PMSubject: Re: Re: DAN advice No, we do not see Dr. G any longer. Left over 2 years ago.

Cheryl

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

~@midian42~

Cheryl--Do you all see Dr G ??---What do you think---I am scheduled for my daughter to see him iin March--Bill

To: mb12 valtrex Sent: Fri, December 10, 2010 12:14:14 PMSubject: Re: Re: DAN advice I've heard good things about DeMio but I can't be very specific as I've never gotten more than a "he's great" from anyone. I'm not sure where he stands on antivirals and such. I think he might be on the conservative side. You might try asking the TACA-USA list if no one is able to answer here.

Cheryl

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

~@midian42~

Sorry to pipe in, but since the subject is about DAN DOCS, I was wondering if anyone has seen Dr DeMio. He is a DAN DOC from Seven Hills, OH and I think he also has an office in Cleveland. Just looking for some input if there is any.................thanks. Re: Re: DAN advice>> ,>> Can’t the sister-in-law who is an immunologist help? Won’t she treat your sonwith

antivirals and antifungals.Not likely. I suppose it's certainly possible if you have a *very* openimmunologist but I highly doubt her sil is one given the response she's gottenfrom sil. Even Dr. G has not reached mainstream medicine and while many doctorsfind giving antivirals relatively harmless, they don't find it even remotelynecessary and therefor aren't willing to do it. Antifungals, on the other hand,you'd be hard-pressed to find one willing to Rx one long term.My (former) pediatrician thought Dr. G was just as much of a quack as he thoughtDANs were when we were seeing him (the pediatrician). That would be why he ismy *former* pediatrician. :)Cheryl>------------------------------------

[Guest guest]

The answer to that is "who knows". Even Yasko will tell you that just because there is a mutation, it doesn't mean it isn't working. It just means that there is a *very real possibility* that gene isn't working *or* is working in a weakened state (unless it's completed deleted, of course). And don't forget about the incredible amount of genes that we *don't* test through Yasko. She tests 30 some odd genes but there are many more and we don't know how they are working in conjunction with the other genes we haven't tested. That's why as much as I love Yasko, there are just as many kids on her protocol as anyone else's that don't recover. (BTW, we just got our Yasko results last month, I was *super* excited to finally get that test done!)The heavy metal burden our kids have is likely due to more than just a gene. It's everything combined that causes a poorly functioning immune and metabolic system. The answer to that question is the same as "will Cheryl's son ever be able to get off antivirals?" There is no answer for that. The only thing you can do is hope and continue to work on it maybe you'll find an answer. I will give my son antivirals until the day he has to make his own choice on whether or not he wants to take them if that's what it comes down to. In my opinion, people want to over define recovery and then there are so many little variations ("managed" recovery, "complete recovery", etc) when the fact of the matter is, we'll take recovery any way we can get it and it's not reasonable to expect that our kids won't have *any* issues, NT kids have issues, too and we shouldn't hold our kids to a higher standard than we hold of NT kids. If it means that we have to give them something or somethings for the rest of their lives in order for them to function at a socially acceptable level, then we will. No one can tell me my son isn't recovered because he's still taking something to keep him functioning at that level. If he can take a pill or two that has him functioning at a typical (or typical enough) level, then clearly there is a biological component and it's not a psychiatric *behavioral* problem. And even to that end, I think that people with psychiatric disorders should be treated *medically* (throw the DSMIV out the window!! because these disorders stem from a very real chemical imbalance in the brain (and who knows what else - even sociopaths will show in a brain scan that it isn't functioning the same way as a typical brain) which would clearly make it biological in nature - but I digress...) The point of all of this is to give our kids a better life. Sure, I would love to be at a point where he doesn't need anything. But that doesn't mean I give up on the idea that he could get to that point and it also doesn't mean that he isn't behaving in a "typical" manner. I'll always give him the amount of support he needs and yes, it's possible he'll need it for the rest of his life. It's also possible he won't. Maybe by the time he's a teenager and driving a car, he won't need anything or he'll be able to control it on his own. Who knows. So the answer to your question, again, is WHO KNOWS? Some will, some won't. And some won't ever know the difference because they aren't able to reach that point. At best, we're all just shooting in the dark hoping the meager science we have will help us with a total lack of support from mainstream medicine. They're too busy trying to prove us wrong than to help us find out the *truth* of the matter. And honestly, it doesn't matter what Stan's son did. What worked for him isn't going to work for everyone. Stan says his son was recovered in 9 months. The majority of kids don't recover that fast, if at all. They found what worked for him and he clearly didn't have the extensive issues other kids had. Most kids will start dumping metals when the viral load is alleviated because viruses hold on to metals. The more the immune system is over-taxed, the less effective it's going to be *everywhere* which means if you have an extreme viral load, your body isn't going to be able to do all the things it needs to do effectively, including detoxing metals. As to whether or not your child will be the same, there is no one that can answer that question. You might need more, you might need less than Ethan. The biggest problem that I see is that too many parents want to compare their kids. Comparison helps to tease out issues and solutions and it's important that we all compare notes. But we have to make sure our expectations are realistic. Success stories are wonderful and we all love hearing them and hoping our kids turn out the same way. But you can't put a timeline or specific expectation of being completely free of anything on yourself or your child. Be hopeful but know that all kids are different and all their needs are different. You simply do what you need to do.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

Thank you for your detailed and frank response, for I need it during these difficult times to help with all of this. I will search the archives and get as smart as I can get on the issues. What I still do not understand with the conflict between NIDS and DAN on chelation is that can a childs systems with the genetic gene defects (C677T for example) ever chelate the hvy metals on its own? I know Stan's sons body dumped the hvy metals when the viral load came down BUT did Ethan have genetic defects in the detox pathways??? STAN--Anybody--as always--thanks so much for all the help these past 3 yrs.--Bill

To: mb12 valtrex Sent: Sat, December 11, 2010 12:06:02 AMSubject: Re: Re: DAN advice

*warning: this is really long (I got a bit long winded)*

It's been hashed over several times on the list if you want to check the archives. But the real root of the matter is simply that my son started reacting very negatively to the SSRIs. It was gradual process and after several SSRIs, quicker declines with every one (it was so gradual it took me a while to figure out it was the SSRIs), it just wasn't worth it to continue to be terrified of my son and his psychotic behavior. The moment we decided to wean him off the SSRIs was when we wondered if he would get a knife and kill us in our sleep. He was 4.5 at the time (he started them when he was 3). No one should ever have to think that about a 4.5 year old that used to be sweet and affectionate. In the first probably 6 months it was great. When he started to decline with behavioral problems, the SSRI was switched. He declined in a shorter amount of time and we switched again. The decline was

even shorter. And with each decline, the behavioral issues were getting more severe. Until finally he just snapped and it was like there was no trace of him left. There were other things that led to us leaving, too but nothing I'm going to go into on the list again and really, this was the most important reason. Like I said, you can search the archives if you really want to know.

Based on *my* experience with *my* son, he should never have been given these drugs. They don't do safety tests with antipsychotics or antidepressants on 3 year olds. Not everyone has the same results. Some do very well. But my son absolutely did not. But from what I've learned, I'm never messing with brain chemistry like that again.

There is no test for this. There is nothing that you can do that says whether or not you need it. The only sure fire way to know if you even need it is to be clinically depressed and even then, there's no guarantee it will work or that you won't have the myriad of side effects that go with them. You can pull all the serotonin levels you want from blood or urine but that doesn't tell you what's going on *in the brain*. Even Dr. G once told me that only way to know how much is in the brain is through spinal fluid and no one would or should do that on a whim. Dr. G uses them to increase blood flow to the brain. I believe that. Although I haven't been able to find the studies again, I do remember seeing studies that referenced increase blood flow (and I've posted them before although it may have been on the NIDS list). But it's the other things it's doing that matter, too. You know, the thing it was

actually created for? That's where my problem lies. That's where my son's problem laid.

I'm not trying to discourage you from seeing Dr. G. If you think it's the right thing to do for your child, more power to you and I wish you the very best of luck. I hope that your son turns out just like Marcia's and the others that he's recovered. The antiviral and antifungal part was huge for my son. And Dr. G also put him on a long term abx that was also huge for my son. I can't deny how much my son really was helped by him. But the SSRIs did more damage than even I could have imagined. I have no idea if he was hallucinating or hearing things at the time because he couldn't tell me those things but something went very, very wrong. It took me almost 2 months to wean him off and another month before my son returned to normal. When he returned to normal his whole life changed for the better.

Good luck with Dr. G and I mean that with all sincerity. Not all kids react like mine did. But I'm not ever going to say that I think it's okay to give a child SSRIs when there's no evidence that you need to go in and alter brain chemistry (and by evidence I mean a child that is not showing any symptoms of what an SSRI is meant to alleviate). That only comes from my personal experience.

There is no protocol that has enough science behind it. Not DAN, not NIDS, not homeopathy, nothing. NIDS can attack DAN all day long about the lack of science and DAN can do the same to NIDS using the exact same argument but at the end of the day, *neither* of them have enough science or mainstream medical acceptance. So it's up to us as parents to research everything we can and do what we feel is the safest thing for our kids, even if that means doing nothing. If seeing Dr. G makes you feel like he's got some answers for you, then by all means, go for it. My experience isn't a cautionary tale for *you*, it's a cautionary tale for *me*.

I chose to see him even after all the e-mails I got from people saying don't do it. And I would do it again. My point by saying that I would do it again is this: It was the right thing for me to do at the time. I learned a lot from that experience. And while I saw him I had the time to learn about other protocols because really, there isn't a whole lot time consumption with NIDS. And I learned not to give my son SSRIs. To me, my son fit Dr. G in every way (but looking back, all kids do because all our kids have immune issues). So I went. I'll never say I'm not glad I did. I'll only say I wish I had left sooner because it would have saved my son several months of being *completely* out of control.

Do what you think is right for your child. If Dr. G is right for you, then go. You'll know in your own time whether or not it was the right choice. The good news is that if it isn't the right choice, you'll likely spot it sooner than I did. And more good news, you'll still be helped by him in some way. And even better, it's not like it's a permanent choice. You're not marrying him and you don't have to go through a hideous custody battle to divorce him.

My only suggestion is to make sure this is where you want to start. And I would say that with absolutely any protocol. It's expensive to see a doctor that doesn't take your insurance (or any insurance at all) and it's hard to come up with the money. I have friends that have spent just as much seeing Dr. G because he didn't take their insurance as they've spent on a DAN. So just be wise about your money. Whatever you choose to do, commit to it for as long as you think you should and no more. If you have to move on to the next option, then do so. Don't waste money doing something that isn't working and research, research, research because there's more than one way to skin a cat and the more you know, the better choices you can make which will save you money in the long run. Don't do anything you don't feel 100% comfortable doing, even if you later find out it wasn't a good choice or it simply

didn't do anything, you still need to have been 100% comfortable with that initial choice. You're going to have regrets. We all do. Don't add to that burden by doing something you aren't comfortable with. And above all else, listen to your child. Pay attention to the signs and signals your daughter is giving you because she is going to be the real gauge of what you are doing.

Cheryl

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

~@midian42~

Can I ask why -or can you give me any advise--thanks----I am in the process of breaking the bank to get to him---if you want to my other e-mail bill.luce@...

To: mb12 valtrex Sent: Fri, December 10, 2010 10:13:33 PMSubject: Re: Re: DAN advice No, we do not see Dr. G any longer. Left over 2 years ago.

Cheryl

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

~@midian42~

Cheryl--Do you all see Dr G ??---What do you think---I am scheduled for my daughter to see him iin March--Bill

To: mb12 valtrex Sent: Fri, December 10, 2010 12:14:14 PMSubject: Re: Re: DAN advice I've heard good things about DeMio but I can't be very specific as I've never gotten more than a "he's great" from anyone. I'm not sure where he stands on antivirals and such. I think he might be on the conservative side. You might try asking the TACA-USA list if no one is able to answer here.

Cheryl

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

~@midian42~

Sorry to pipe in, but since the subject is about DAN DOCS, I was wondering if anyone has seen Dr DeMio. He is a DAN DOC from Seven Hills, OH and I think he also has an office in Cleveland. Just looking for some input if there is any.................thanks. Re: Re: DAN advice>> ,>> Can’t the sister-in-law who is an immunologist help? Won’t she treat your sonwith

antivirals and antifungals.Not likely. I suppose it's certainly possible if you have a *very* openimmunologist but I highly doubt her sil is one given the response she's gottenfrom sil. Even Dr. G has not reached mainstream medicine and while many doctorsfind giving antivirals relatively harmless, they don't find it even remotelynecessary and therefor aren't willing to do it. Antifungals, on the other hand,you'd be hard-pressed to find one willing to Rx one long term.My (former) pediatrician thought Dr. G was just as much of a quack as he thoughtDANs were when we were seeing him (the pediatrician). That would be why he ismy *former* pediatrician. :)Cheryl>------------------------------------

[Guest guest]

The answer to that is "who knows". Even Yasko will tell you that just because there is a mutation, it doesn't mean it isn't working. It just means that there is a *very real possibility* that gene isn't working *or* is working in a weakened state (unless it's completed deleted, of course). And don't forget about the incredible amount of genes that we *don't* test through Yasko. She tests 30 some odd genes but there are many more and we don't know how they are working in conjunction with the other genes we haven't tested. That's why as much as I love Yasko, there are just as many kids on her protocol as anyone else's that don't recover. (BTW, we just got our Yasko results last month, I was *super* excited to finally get that test done!)The heavy metal burden our kids have is likely due to more than just a gene. It's everything combined that causes a poorly functioning immune and metabolic system. The answer to that question is the same as "will Cheryl's son ever be able to get off antivirals?" There is no answer for that. The only thing you can do is hope and continue to work on it maybe you'll find an answer. I will give my son antivirals until the day he has to make his own choice on whether or not he wants to take them if that's what it comes down to. In my opinion, people want to over define recovery and then there are so many little variations ("managed" recovery, "complete recovery", etc) when the fact of the matter is, we'll take recovery any way we can get it and it's not reasonable to expect that our kids won't have *any* issues, NT kids have issues, too and we shouldn't hold our kids to a higher standard than we hold of NT kids. If it means that we have to give them something or somethings for the rest of their lives in order for them to function at a socially acceptable level, then we will. No one can tell me my son isn't recovered because he's still taking something to keep him functioning at that level. If he can take a pill or two that has him functioning at a typical (or typical enough) level, then clearly there is a biological component and it's not a psychiatric *behavioral* problem. And even to that end, I think that people with psychiatric disorders should be treated *medically* (throw the DSMIV out the window!! because these disorders stem from a very real chemical imbalance in the brain (and who knows what else - even sociopaths will show in a brain scan that it isn't functioning the same way as a typical brain) which would clearly make it biological in nature - but I digress...) The point of all of this is to give our kids a better life. Sure, I would love to be at a point where he doesn't need anything. But that doesn't mean I give up on the idea that he could get to that point and it also doesn't mean that he isn't behaving in a "typical" manner. I'll always give him the amount of support he needs and yes, it's possible he'll need it for the rest of his life. It's also possible he won't. Maybe by the time he's a teenager and driving a car, he won't need anything or he'll be able to control it on his own. Who knows. So the answer to your question, again, is WHO KNOWS? Some will, some won't. And some won't ever know the difference because they aren't able to reach that point. At best, we're all just shooting in the dark hoping the meager science we have will help us with a total lack of support from mainstream medicine. They're too busy trying to prove us wrong than to help us find out the *truth* of the matter. And honestly, it doesn't matter what Stan's son did. What worked for him isn't going to work for everyone. Stan says his son was recovered in 9 months. The majority of kids don't recover that fast, if at all. They found what worked for him and he clearly didn't have the extensive issues other kids had. Most kids will start dumping metals when the viral load is alleviated because viruses hold on to metals. The more the immune system is over-taxed, the less effective it's going to be *everywhere* which means if you have an extreme viral load, your body isn't going to be able to do all the things it needs to do effectively, including detoxing metals. As to whether or not your child will be the same, there is no one that can answer that question. You might need more, you might need less than Ethan. The biggest problem that I see is that too many parents want to compare their kids. Comparison helps to tease out issues and solutions and it's important that we all compare notes. But we have to make sure our expectations are realistic. Success stories are wonderful and we all love hearing them and hoping our kids turn out the same way. But you can't put a timeline or specific expectation of being completely free of anything on yourself or your child. Be hopeful but know that all kids are different and all their needs are different. You simply do what you need to do.

Cheryl~http://www.gryffins-tail.blogspot.com~@midian42~

Thank you for your detailed and frank response, for I need it during these difficult times to help with all of this. I will search the archives and get as smart as I can get on the issues. What I still do not understand with the conflict between NIDS and DAN on chelation is that can a childs systems with the genetic gene defects (C677T for example) ever chelate the hvy metals on its own? I know Stan's sons body dumped the hvy metals when the viral load came down BUT did Ethan have genetic defects in the detox pathways??? STAN--Anybody--as always--thanks so much for all the help these past 3 yrs.--Bill

To: mb12 valtrex Sent: Sat, December 11, 2010 12:06:02 AMSubject: Re: Re: DAN advice

*warning: this is really long (I got a bit long winded)*

It's been hashed over several times on the list if you want to check the archives. But the real root of the matter is simply that my son started reacting very negatively to the SSRIs. It was gradual process and after several SSRIs, quicker declines with every one (it was so gradual it took me a while to figure out it was the SSRIs), it just wasn't worth it to continue to be terrified of my son and his psychotic behavior. The moment we decided to wean him off the SSRIs was when we wondered if he would get a knife and kill us in our sleep. He was 4.5 at the time (he started them when he was 3). No one should ever have to think that about a 4.5 year old that used to be sweet and affectionate. In the first probably 6 months it was great. When he started to decline with behavioral problems, the SSRI was switched. He declined in a shorter amount of time and we switched again. The decline was

even shorter. And with each decline, the behavioral issues were getting more severe. Until finally he just snapped and it was like there was no trace of him left. There were other things that led to us leaving, too but nothing I'm going to go into on the list again and really, this was the most important reason. Like I said, you can search the archives if you really want to know.

Based on *my* experience with *my* son, he should never have been given these drugs. They don't do safety tests with antipsychotics or antidepressants on 3 year olds. Not everyone has the same results. Some do very well. But my son absolutely did not. But from what I've learned, I'm never messing with brain chemistry like that again.

There is no test for this. There is nothing that you can do that says whether or not you need it. The only sure fire way to know if you even need it is to be clinically depressed and even then, there's no guarantee it will work or that you won't have the myriad of side effects that go with them. You can pull all the serotonin levels you want from blood or urine but that doesn't tell you what's going on *in the brain*. Even Dr. G once told me that only way to know how much is in the brain is through spinal fluid and no one would or should do that on a whim. Dr. G uses them to increase blood flow to the brain. I believe that. Although I haven't been able to find the studies again, I do remember seeing studies that referenced increase blood flow (and I've posted them before although it may have been on the NIDS list). But it's the other things it's doing that matter, too. You know, the thing it was

actually created for? That's where my problem lies. That's where my son's problem laid.

I'm not trying to discourage you from seeing Dr. G. If you think it's the right thing to do for your child, more power to you and I wish you the very best of luck. I hope that your son turns out just like Marcia's and the others that he's recovered. The antiviral and antifungal part was huge for my son. And Dr. G also put him on a long term abx that was also huge for my son. I can't deny how much my son really was helped by him. But the SSRIs did more damage than even I could have imagined. I have no idea if he was hallucinating or hearing things at the time because he couldn't tell me those things but something went very, very wrong. It took me almost 2 months to wean him off and another month before my son returned to normal. When he returned to normal his whole life changed for the better.

Good luck with Dr. G and I mean that with all sincerity. Not all kids react like mine did. But I'm not ever going to say that I think it's okay to give a child SSRIs when there's no evidence that you need to go in and alter brain chemistry (and by evidence I mean a child that is not showing any symptoms of what an SSRI is meant to alleviate). That only comes from my personal experience.

There is no protocol that has enough science behind it. Not DAN, not NIDS, not homeopathy, nothing. NIDS can attack DAN all day long about the lack of science and DAN can do the same to NIDS using the exact same argument but at the end of the day, *neither* of them have enough science or mainstream medical acceptance. So it's up to us as parents to research everything we can and do what we feel is the safest thing for our kids, even if that means doing nothing. If seeing Dr. G makes you feel like he's got some answers for you, then by all means, go for it. My experience isn't a cautionary tale for *you*, it's a cautionary tale for *me*.

I chose to see him even after all the e-mails I got from people saying don't do it. And I would do it again. My point by saying that I would do it again is this: It was the right thing for me to do at the time. I learned a lot from that experience. And while I saw him I had the time to learn about other protocols because really, there isn't a whole lot time consumption with NIDS. And I learned not to give my son SSRIs. To me, my son fit Dr. G in every way (but looking back, all kids do because all our kids have immune issues). So I went. I'll never say I'm not glad I did. I'll only say I wish I had left sooner because it would have saved my son several months of being *completely* out of control.

Do what you think is right for your child. If Dr. G is right for you, then go. You'll know in your own time whether or not it was the right choice. The good news is that if it isn't the right choice, you'll likely spot it sooner than I did. And more good news, you'll still be helped by him in some way. And even better, it's not like it's a permanent choice. You're not marrying him and you don't have to go through a hideous custody battle to divorce him.

My only suggestion is to make sure this is where you want to start. And I would say that with absolutely any protocol. It's expensive to see a doctor that doesn't take your insurance (or any insurance at all) and it's hard to come up with the money. I have friends that have spent just as much seeing Dr. G because he didn't take their insurance as they've spent on a DAN. So just be wise about your money. Whatever you choose to do, commit to it for as long as you think you should and no more. If you have to move on to the next option, then do so. Don't waste money doing something that isn't working and research, research, research because there's more than one way to skin a cat and the more you know, the better choices you can make which will save you money in the long run. Don't do anything you don't feel 100% comfortable doing, even if you later find out it wasn't a good choice or it simply

didn't do anything, you still need to have been 100% comfortable with that initial choice. You're going to have regrets. We all do. Don't add to that burden by doing something you aren't comfortable with. And above all else, listen to your child. Pay attention to the signs and signals your daughter is giving you because she is going to be the real gauge of what you are doing.

Cheryl

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

~@midian42~

Can I ask why -or can you give me any advise--thanks----I am in the process of breaking the bank to get to him---if you want to my other e-mail bill.luce@...

To: mb12 valtrex Sent: Fri, December 10, 2010 10:13:33 PMSubject: Re: Re: DAN advice No, we do not see Dr. G any longer. Left over 2 years ago.

Cheryl

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

~@midian42~

Cheryl--Do you all see Dr G ??---What do you think---I am scheduled for my daughter to see him iin March--Bill

To: mb12 valtrex Sent: Fri, December 10, 2010 12:14:14 PMSubject: Re: Re: DAN advice I've heard good things about DeMio but I can't be very specific as I've never gotten more than a "he's great" from anyone. I'm not sure where he stands on antivirals and such. I think he might be on the conservative side. You might try asking the TACA-USA list if no one is able to answer here.

Cheryl

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

~@midian42~

Sorry to pipe in, but since the subject is about DAN DOCS, I was wondering if anyone has seen Dr DeMio. He is a DAN DOC from Seven Hills, OH and I think he also has an office in Cleveland. Just looking for some input if there is any.................thanks. Re: Re: DAN advice>> ,>> Can’t the sister-in-law who is an immunologist help? Won’t she treat your sonwith

antivirals and antifungals.Not likely. I suppose it's certainly possible if you have a *very* openimmunologist but I highly doubt her sil is one given the response she's gottenfrom sil. Even Dr. G has not reached mainstream medicine and while many doctorsfind giving antivirals relatively harmless, they don't find it even remotelynecessary and therefor aren't willing to do it. Antifungals, on the other hand,you'd be hard-pressed to find one willing to Rx one long term.My (former) pediatrician thought Dr. G was just as much of a quack as he thoughtDANs were when we were seeing him (the pediatrician). That would be why he ismy *former* pediatrician. :)Cheryl>------------------------------------