Re: vs Immunodeficiency syndrome?

[Guest guest]

Would you consider ldn our son was the same always sick when younger

them 3 years of never appearing sick. He is on ldn for 18 months now

and gets coughs and colds when rest of family does even had swine flu

before christmas and was sick for 10 days as was the whole family but

fought it off . Def believe that since on it his immune system working

better than before.

On 2/14/11, TAMMYandRYAN K <rtnkraft_1@...> wrote:

> Hi Everyone, my son has been seeing Dr. for the last 10 months and

> is taking Valtrex with no real big improvements seen, though we still do

> believe his immune system is off. He never has a fever...rarely gets sick

> now but was sick all the time as a toddler. I have been reading about IVIG

> and how it is used for CVID (common variable immunodeficency syndrome. I

> wonder how is different from CVID? Both are immune disorders? We

> have never seen an immunologist and I am wondering if that is something we

> should look into. Would an immunologist look at my son's blood work and see

> that something is off on the immune system and try to help us treat it or is

> the Doctor likely to dismiss me as a crazy mom looking for a cure?

>

> To check for CVID, a website said they look at low levels of serum

> immunoglobulins. My son has had lots of blood work done over the years and

> on a test we did in 2009 for immunology AG His IgG1 was 368 with a normal

> range being 400-1080. The others, IgG2 IgG3 and IgG4 and Total IgG were

> within the normal range.

> On another test in 2010 for Immuniglobulins IgA IgM and IgG were all within

> normal. The IgE was high at 382.

> Would any of those tests show that he has immunodeficency syndrome or do

> they show that his immune system is within the normal range (except for the

> first IgG1 test)?

>

> TammyK

>

>

>

>

>

[Guest guest]

The immunologist will almost certainly call all of those levels normal, even the

slightly low and slightly high ones.  That was our experience.  We even have a

couple of low & missing IgG subclasses, but because it's 3 & 4, not 1 & 3 or 2 & 4, it

doesn't fall into a proper classification so it means nothing.  (It's not even

odd that it's all 3 of us.)  Even though my son has no IgA, it only means they

have to use special blood if he ever has to have a blood transfusion.  Even

though my kid's (and mine) NKs were only 2% (mine 1%), that didn't mean

anything.  Even though 4 sets of delayed-type-hypersensitivity skin testing

were

very abnormal (suggesting no cellular immunity) in myself (don't inflict that

one on your kids!!), they don't know what it means, so sorry.

CVID is a little different.  I don't believe they have nearly the cognitive

impairment that we see with ... (I could be wrong). 

So no.  Currently there aren't labs that your typical immunologist can utilize

to say " This and this and this is wrong so we need to treat this... "

________________________________

From: TAMMYandRYAN K <rtnkraft_1@...>

nids < >

Sent: Mon, February 14, 2011 9:56:13 AM

Subject: vs Immunodeficiency syndrome?

 

Hi Everyone, my son has been seeing Dr. for the last 10 months and is

taking Valtrex with no real big improvements seen, though we still do believe

his immune system is off. He never has a fever...rarely gets sick now but was

sick all the time as a toddler. I have been reading about IVIG and how it is

used for CVID (common variable immunodeficency syndrome. I wonder how is

different from CVID? Both are immune disorders? We have never seen an

immunologist and I am wondering if that is something we should look into. Would

an immunologist look at my son's blood work and see that something is off on the

immune system and try to help us treat it or is the Doctor likely to dismiss me

as a crazy mom looking for a cure?

To check for CVID, a website said they look at low levels of serum

immunoglobulins. My son has had lots of blood work done over the years and on a

test we did in 2009 for immunology AG His IgG1 was 368 with a normal range being

400-1080. The others, IgG2 IgG3 and IgG4 and Total IgG were within the normal

range.

On another test in 2010 for Immuniglobulins IgA IgM and IgG were all within

normal. The IgE was high at 382.

Would any of those tests show that he has immunodeficency syndrome or do they

show that his immune system is within the normal range (except for the first

IgG1 test)?

TammyK

[Guest guest]

DITTO......we had the same experience w/ a top immunologist in Boston......my

sons immune numbers are not low enough to warrant treating his immune

system......they told me autism is purely a psychiatric disorder and this was

just 2 weeks ago.......so frustrating!

From: <thecolemans4@...>

Subject: Re: vs Immunodeficiency syndrome?

Date: Monday, February 14, 2011, 2:52 PM

 

The immunologist will almost certainly call all of those levels normal, even the

slightly low and slightly high ones.  That was our experience.  We even have a

couple of low & missing IgG subclasses, but because it's 3 & 4, not 1 & 3 or 2 & 4, it

doesn't fall into a proper classification so it means nothing.  (It's not even

odd that it's all 3 of us.)  Even though my son has no IgA, it only means they

have to use special blood if he ever has to have a blood transfusion.  Even

though my kid's (and mine) NKs were only 2% (mine 1%), that didn't mean

anything.  Even though 4 sets of delayed-type-hypersensitivity skin testing

were

very abnormal (suggesting no cellular immunity) in myself (don't inflict that

one on your kids!!), they don't know what it means, so sorry.

CVID is a little different.  I don't believe they have nearly the cognitive

impairment that we see with ... (I could be wrong). 

So no.  Currently there aren't labs that your typical immunologist can utilize

to say " This and this and this is wrong so we need to treat this... "

________________________________

From: TAMMYandRYAN K <rtnkraft_1@...>

nids < >

Sent: Mon, February 14, 2011 9:56:13 AM

Subject: vs Immunodeficiency syndrome?

 

Hi Everyone, my son has been seeing Dr. for the last 10 months and is

taking Valtrex with no real big improvements seen, though we still do believe

his immune system is off. He never has a fever...rarely gets sick now but was

sick all the time as a toddler. I have been reading about IVIG and how it is

used for CVID (common variable immunodeficency syndrome. I wonder how is

different from CVID? Both are immune disorders? We have never seen an

immunologist and I am wondering if that is something we should look into. Would

an immunologist look at my son's blood work and see that something is off on the

immune system and try to help us treat it or is the Doctor likely to dismiss me

as a crazy mom looking for a cure?

To check for CVID, a website said they look at low levels of serum

immunoglobulins. My son has had lots of blood work done over the years and on a

test we did in 2009 for immunology AG His IgG1 was 368 with a normal range being

400-1080. The others, IgG2 IgG3 and IgG4 and Total IgG were within the normal

range.

On another test in 2010 for Immuniglobulins IgA IgM and IgG were all within

normal. The IgE was high at 382.

Would any of those tests show that he has immunodeficency syndrome or do they

show that his immune system is within the normal range (except for the first

IgG1 test)?

TammyK

[Guest guest]

The infectious diseases’ “expert†at our local “big city†Children’s

Hospital told me my son showed no markers at all for an illness, and that autism

is not treatable.

Kristy Nardini

From: [mailto: ] On Behalf Of Fund

Sent: Monday, February 14, 2011 12:45 PM

Subject: Re: vs Immunodeficiency syndrome?

DITTO......we had the same experience w/ a top immunologist in Boston......my

sons immune numbers are not low enough to warrant treating his immune

system......they told me autism is purely a psychiatric disorder and this was

just 2 weeks ago.......so frustrating!

From: <thecolemans4@... <mailto:thecolemans4%40>

>

Subject: Re: vs Immunodeficiency syndrome?

<mailto:%40>

Date: Monday, February 14, 2011, 2:52 PM

The immunologist will almost certainly call all of those levels normal, even the

slightly low and slightly high ones. That was our experience. We even have a

couple of low & missing IgG subclasses, but because it's 3 & 4, not 1 & 3 or 2 & 4, it

doesn't fall into a proper classification so it means nothing. (It's not even

odd that it's all 3 of us.) Even though my son has no IgA, it only means they

have to use special blood if he ever has to have a blood transfusion. Even

though my kid's (and mine) NKs were only 2% (mine 1%), that didn't mean

anything. Even though 4 sets of delayed-type-hypersensitivity skin testing were

very abnormal (suggesting no cellular immunity) in myself (don't inflict that

one on your kids!!), they don't know what it means, so sorry.

CVID is a little different. I don't believe they have nearly the cognitive

impairment that we see with ... (I could be wrong).

So no. Currently there aren't labs that your typical immunologist can utilize

to say " This and this and this is wrong so we need to treat this... "

________________________________

From: TAMMYandRYAN K <rtnkraft_1@... <mailto:rtnkraft_1%40msn.com> >

nids < <mailto:%40> >

Sent: Mon, February 14, 2011 9:56:13 AM

Subject: vs Immunodeficiency syndrome?

Hi Everyone, my son has been seeing Dr. for the last 10 months and is

taking Valtrex with no real big improvements seen, though we still do believe

his immune system is off. He never has a fever...rarely gets sick now but was

sick all the time as a toddler. I have been reading about IVIG and how it is

used for CVID (common variable immunodeficency syndrome. I wonder how is

different from CVID? Both are immune disorders? We have never seen an

immunologist and I am wondering if that is something we should look into. Would

an immunologist look at my son's blood work and see that something is off on the

immune system and try to help us treat it or is the Doctor likely to dismiss me

as a crazy mom looking for a cure?

To check for CVID, a website said they look at low levels of serum

immunoglobulins. My son has had lots of blood work done over the years and on a

test we did in 2009 for immunology AG His IgG1 was 368 with a normal range being

400-1080. The others, IgG2 IgG3 and IgG4 and Total IgG were within the normal

range.

On another test in 2010 for Immuniglobulins IgA IgM and IgG were all within

normal. The IgE was high at 382.

Would any of those tests show that he has immunodeficency syndrome or do they

show that his immune system is within the normal range (except for the first

IgG1 test)?

TammyK

[Guest guest]

Thanks guys, this is just what I needed to hear. Our local Dr. was so

against my sons treatment with Dr G. He said I need a Dr. that sees him

regularly. I said they do not treat for this, they consider it a mental

disorder. He said not true. He gave a lot of compelling reasons but I

see it's the same run around as always.

>

> DITTO......we had the same experience w/ a top immunologist in

> Boston......my sons immune numbers are not low enough to warrant

> treating his immune system......they told me autism is purely a

> psychiatric disorder and this was just 2 weeks ago.......so frustrating!

>

>

>

> From: <thecolemans4@...

> <mailto:thecolemans4%40>>

> Subject: Re: vs Immunodeficiency syndrome?

> <mailto:%40>

> Date: Monday, February 14, 2011, 2:52 PM

>

>

>

> The immunologist will almost certainly call all of those levels

> normal, even the

> slightly low and slightly high ones. That was our experience. We

> even have a

> couple of low & missing IgG subclasses, but because it's 3 & 4, not 1 & 3

> or 2 & 4, it

> doesn't fall into a proper classification so it means nothing. (It's

> not even

> odd that it's all 3 of us.) Even though my son has no IgA, it only

> means they

> have to use special blood if he ever has to have a blood transfusion.

> Even

> though my kid's (and mine) NKs were only 2% (mine 1%), that didn't mean

> anything. Even though 4 sets of delayed-type-hypersensitivity skin

> testing were

> very abnormal (suggesting no cellular immunity) in myself (don't

> inflict that

> one on your kids!!), they don't know what it means, so sorry.

>

> CVID is a little different. I don't believe they have nearly the

> cognitive

> impairment that we see with ... (I could be wrong).

>

> So no. Currently there aren't labs that your typical immunologist can

> utilize

> to say " This and this and this is wrong so we need to treat this... "

>

>

>

> ________________________________

> From: TAMMYandRYAN K <rtnkraft_1@... <mailto:rtnkraft_1%40msn.com>>

> nids < <mailto:%40>>

> Sent: Mon, February 14, 2011 9:56:13 AM

> Subject: vs Immunodeficiency syndrome?

>

>

> Hi Everyone, my son has been seeing Dr. for the last 10 months

> and is

> taking Valtrex with no real big improvements seen, though we still do

> believe

> his immune system is off. He never has a fever...rarely gets sick now

> but was

> sick all the time as a toddler. I have been reading about IVIG and how

> it is

> used for CVID (common variable immunodeficency syndrome. I wonder how

> is

> different from CVID? Both are immune disorders? We have never seen an

> immunologist and I am wondering if that is something we should look

> into. Would

> an immunologist look at my son's blood work and see that something is

> off on the

> immune system and try to help us treat it or is the Doctor likely to

> dismiss me

> as a crazy mom looking for a cure?

>

> To check for CVID, a website said they look at low levels of serum

> immunoglobulins. My son has had lots of blood work done over the years

> and on a

> test we did in 2009 for immunology AG His IgG1 was 368 with a normal

> range being

> 400-1080. The others, IgG2 IgG3 and IgG4 and Total IgG were within the

> normal

> range.

> On another test in 2010 for Immuniglobulins IgA IgM and IgG were all

> within

> normal. The IgE was high at 382.

> Would any of those tests show that he has immunodeficency syndrome or

> do they

> show that his immune system is within the normal range (except for the

> first

> IgG1 test)?

>

> TammyK

>

>

[Guest guest]

However, you might want to follow immunoglobin levels.  My son's started off

similar to those numbers you listed, but after 3 years, they dropped really low

and he was diagnosed with CVID.  He also has inflammatory bowel disease

secondary to the CVID.  We just started IVIG for him.  Immunologists aren't

really helpful for " autism " but they are really helpful for autoimmune symptoms

and immune deficiency.  Sometimes you have to chose your words carefully.

________________________________

From: Jerri Gann <njgann@...>

Sent: Mon, February 14, 2011 7:15:37 PM

Subject: Re: vs Immunodeficiency syndrome?

 

Thanks guys, this is just what I needed to hear. Our local Dr. was so

against my sons treatment with Dr G. He said I need a Dr. that sees him

regularly. I said they do not treat for this, they consider it a mental

disorder. He said not true. He gave a lot of compelling reasons but I

see it's the same run around as always.

>

> DITTO......we had the same experience w/ a top immunologist in

> Boston......my sons immune numbers are not low enough to warrant

> treating his immune system......they told me autism is purely a

> psychiatric disorder and this was just 2 weeks ago.......so frustrating!

>

>

>

> From: <thecolemans4@...

> <mailto:thecolemans4%40>>

> Subject: Re: vs Immunodeficiency syndrome?

> <mailto:%40>

> Date: Monday, February 14, 2011, 2:52 PM

>

>

>

> The immunologist will almost certainly call all of those levels

> normal, even the

> slightly low and slightly high ones. That was our experience. We

> even have a

> couple of low & missing IgG subclasses, but because it's 3 & 4, not 1 & 3

> or 2 & 4, it

> doesn't fall into a proper classification so it means nothing. (It's

> not even

> odd that it's all 3 of us.) Even though my son has no IgA, it only

> means they

> have to use special blood if he ever has to have a blood transfusion.

> Even

> though my kid's (and mine) NKs were only 2% (mine 1%), that didn't mean

> anything. Even though 4 sets of delayed-type-hypersensitivity skin

> testing were

> very abnormal (suggesting no cellular immunity) in myself (don't

> inflict that

> one on your kids!!), they don't know what it means, so sorry.

>

> CVID is a little different. I don't believe they have nearly the

> cognitive

> impairment that we see with ... (I could be wrong).

>

> So no. Currently there aren't labs that your typical immunologist can

> utilize

> to say " This and this and this is wrong so we need to treat this... "

>

>

>

> ________________________________

> From: TAMMYandRYAN K <rtnkraft_1@... <mailto:rtnkraft_1%40msn.com>>

> nids < <mailto:%40>>

> Sent: Mon, February 14, 2011 9:56:13 AM

> Subject: vs Immunodeficiency syndrome?

>

>

> Hi Everyone, my son has been seeing Dr. for the last 10 months

> and is

> taking Valtrex with no real big improvements seen, though we still do

> believe

> his immune system is off. He never has a fever...rarely gets sick now

> but was

> sick all the time as a toddler. I have been reading about IVIG and how

> it is

> used for CVID (common variable immunodeficency syndrome. I wonder how

> is

> different from CVID? Both are immune disorders? We have never seen an

> immunologist and I am wondering if that is something we should look

> into. Would

> an immunologist look at my son's blood work and see that something is

> off on the

> immune system and try to help us treat it or is the Doctor likely to

> dismiss me

> as a crazy mom looking for a cure?

>

> To check for CVID, a website said they look at low levels of serum

> immunoglobulins. My son has had lots of blood work done over the years

> and on a

> test we did in 2009 for immunology AG His IgG1 was 368 with a normal

> range being

> 400-1080. The others, IgG2 IgG3 and IgG4 and Total IgG were within the

> normal

> range.

> On another test in 2010 for Immuniglobulins IgA IgM and IgG were all

> within

> normal. The IgE was high at 382.

> Would any of those tests show that he has immunodeficency syndrome or

> do they

> show that his immune system is within the normal range (except for the

> first

> IgG1 test)?

>

> TammyK

>

>

[Guest guest]

>

>

> From: <thecolemans4@...>

> Subject: Re: vs Immunodeficiency syndrome?

>

> Date: Monday, February 14, 2011, 2:52 PM

>

>

>  

>

>

>

> The immunologist will almost certainly call all of those levels normal, even

the

> slightly low and slightly high ones.  That was our experience.  We even have

a

> couple of low & missing IgG subclasses, but because it's 3 & 4, not 1 & 3 or 2 & 4,

it

> doesn't fall into a proper classification so it means nothing.  (It's not

even

> odd that it's all 3 of us.)  Even though my son has no IgA, it only means

they

> have to use special blood if he ever has to have a blood transfusion.  Even

> though my kid's (and mine) NKs were only 2% (mine 1%), that didn't mean

> anything.  Even though 4 sets of delayed-type-hypersensitivity skin testing

were

> very abnormal (suggesting no cellular immunity) in myself (don't inflict that

> one on your kids!!), they don't know what it means, so sorry.

>

> CVID is a little different.  I don't believe they have nearly the cognitive

> impairment that we see with ... (I could be wrong). 

>

> So no.  Currently there aren't labs that your typical immunologist can

utilize

> to say " This and this and this is wrong so we need to treat this... "

>

>

>

> ________________________________

> From: TAMMYandRYAN K <rtnkraft_1@...>

> nids < >

> Sent: Mon, February 14, 2011 9:56:13 AM

> Subject: vs Immunodeficiency syndrome?

>

>  

> Hi Everyone, my son has been seeing Dr. for the last 10 months and is

> taking Valtrex with no real big improvements seen, though we still do believe

> his immune system is off. He never has a fever...rarely gets sick now but was

> sick all the time as a toddler. I have been reading about IVIG and how it is

> used for CVID (common variable immunodeficency syndrome. I wonder how is

> different from CVID? Both are immune disorders? We have never seen an

> immunologist and I am wondering if that is something we should look into.

Would

> an immunologist look at my son's blood work and see that something is off on

the

> immune system and try to help us treat it or is the Doctor likely to dismiss

me

> as a crazy mom looking for a cure?

>

> To check for CVID, a website said they look at low levels of serum

> immunoglobulins. My son has had lots of blood work done over the years and on

a

> test we did in 2009 for immunology AG His IgG1 was 368 with a normal range

being

> 400-1080. The others, IgG2 IgG3 and IgG4 and Total IgG were within the normal

> range.

> On another test in 2010 for Immuniglobulins IgA IgM and IgG were all within

> normal. The IgE was high at 382.

> Would any of those tests show that he has immunodeficency syndrome or do they

> show that his immune system is within the normal range (except for the first

> IgG1 test)?

>

> TammyK

>

>

[Guest guest]

It depends on who you see. Dr Klimas would understand but she has told me often

that only a handful of docs in the world have an understanding of the immune

markers for neuro inflammation. If you can find one it would be a big help but

most likely the average guy will not have a clue.

Bill Klimas

________________________________

From: <thecolemans4@...>

Sent: Mon, February 14, 2011 2:52:52 PM

Subject: Re: vs Immunodeficiency syndrome?

The immunologist will almost certainly call all of those levels normal, even the

slightly low and slightly high ones. That was our experience. We even have a

couple of low & missing IgG subclasses, but because it's 3 & 4, not 1 & 3 or 2 & 4, it

doesn't fall into a proper classification so it means nothing. (It's not even

odd that it's all 3 of us.) Even though my son has no IgA, it only means they

have to use special blood if he ever has to have a blood transfusion. Even

though my kid's (and mine) NKs were only 2% (mine 1%), that didn't mean

anything. Even though 4 sets of delayed-type-hypersensitivity skin testing were

very abnormal (suggesting no cellular immunity) in myself (don't inflict that

one on your kids!!), they don't know what it means, so sorry.

CVID is a little different. I don't believe they have nearly the cognitive

impairment that we see with ... (I could be wrong).

So no. Currently there aren't labs that your typical immunologist can utilize

to say " This and this and this is wrong so we need to treat this... "

________________________________

From: TAMMYandRYAN K <rtnkraft_1@...>

nids < >

Sent: Mon, February 14, 2011 9:56:13 AM

Subject: vs Immunodeficiency syndrome?

Hi Everyone, my son has been seeing Dr. for the last 10 months and is

taking Valtrex with no real big improvements seen, though we still do believe

his immune system is off. He never has a fever...rarely gets sick now but was

sick all the time as a toddler. I have been reading about IVIG and how it is

used for CVID (common variable immunodeficency syndrome. I wonder how is

different from CVID? Both are immune disorders? We have never seen an

immunologist and I am wondering if that is something we should look into. Would

an immunologist look at my son's blood work and see that something is off on the

immune system and try to help us treat it or is the Doctor likely to dismiss me

as a crazy mom looking for a cure?

To check for CVID, a website said they look at low levels of serum

immunoglobulins. My son has had lots of blood work done over the years and on a

test we did in 2009 for immunology AG His IgG1 was 368 with a normal range being

400-1080. The others, IgG2 IgG3 and IgG4 and Total IgG were within the normal

range.

On another test in 2010 for Immuniglobulins IgA IgM and IgG were all within

normal. The IgE was high at 382.

Would any of those tests show that he has immunodeficency syndrome or do they

show that his immune system is within the normal range (except for the first

IgG1 test)?

TammyK

[Guest guest]

> >

> >

> > From: <thecolemans4@>

> > Subject: Re: vs Immunodeficiency syndrome?

> >

> > Date: Monday, February 14, 2011, 2:52 PM

> >

> >

> >  

> >

> >

> >

> > The immunologist will almost certainly call all of those levels normal, even

the

> > slightly low and slightly high ones.  That was our experience.  We even

have a

> > couple of low & missing IgG subclasses, but because it's 3 & 4, not 1 & 3 or

2 & 4, it

> > doesn't fall into a proper classification so it means nothing.  (It's not

even

> > odd that it's all 3 of us.)  Even though my son has no IgA, it only means

they

> > have to use special blood if he ever has to have a blood transfusion.  Even

> > though my kid's (and mine) NKs were only 2% (mine 1%), that didn't mean

> > anything.  Even though 4 sets of delayed-type-hypersensitivity skin testing

were

> > very abnormal (suggesting no cellular immunity) in myself (don't inflict

that

> > one on your kids!!), they don't know what it means, so sorry.

> >

> > CVID is a little different.  I don't believe they have nearly the cognitive

> > impairment that we see with ... (I could be wrong). 

> >

> > So no.  Currently there aren't labs that your typical immunologist can

utilize

> > to say " This and this and this is wrong so we need to treat this... "

> >

> >

> >

> > ________________________________

> > From: TAMMYandRYAN K <rtnkraft_1@>

> > nids < >

> > Sent: Mon, February 14, 2011 9:56:13 AM

> > Subject: vs Immunodeficiency syndrome?

> >

> >  

> > Hi Everyone, my son has been seeing Dr. for the last 10 months and

is

> > taking Valtrex with no real big improvements seen, though we still do

believe

> > his immune system is off. He never has a fever...rarely gets sick now but

was

> > sick all the time as a toddler. I have been reading about IVIG and how it is

> > used for CVID (common variable immunodeficency syndrome. I wonder how

is

> > different from CVID? Both are immune disorders? We have never seen an

> > immunologist and I am wondering if that is something we should look into.

Would

> > an immunologist look at my son's blood work and see that something is off on

the

> > immune system and try to help us treat it or is the Doctor likely to dismiss

me

> > as a crazy mom looking for a cure?

> >

> > To check for CVID, a website said they look at low levels of serum

> > immunoglobulins. My son has had lots of blood work done over the years and

on a

> > test we did in 2009 for immunology AG His IgG1 was 368 with a normal range

being

> > 400-1080. The others, IgG2 IgG3 and IgG4 and Total IgG were within the

normal

> > range.

> > On another test in 2010 for Immuniglobulins IgA IgM and IgG were all within

> > normal. The IgE was high at 382.

> > Would any of those tests show that he has immunodeficency syndrome or do

they

> > show that his immune system is within the normal range (except for the first

> > IgG1 test)?

> >

> > TammyK

> >

> >