Re: Retest

[Guest guest]

The one nurse made a mistake on the date I just double checked this morning

and it's only been about 80 days!! Now I'm terrified it was to early!!

Janet mom to Brittany age 18, CVID

We were told 100days to get the IG out of the system

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[Guest guest]

Britt just did all the blood work to retest her immune system and it was

only 80 days. I'm afraid it was way to soon to be accurate. The nurse mixed the

dates up when she gave me the info by a month! This is a new doctor. Now do

you understand?

Janet mom to Brittany age 18, CVID

In a message dated 2/25/2009 1:19:25 P.M. Eastern Standard Time,

mother5590@... writes:

I do not understand?

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[Guest guest]

I think they took 20 tubes of blood, no kidding! She said she would test the

pneumovax after these all come back if needed. This is a new doctor!

Janet mom to Brittany age 18, CVID

Yes, I know that some go for a bit less and say 90 days but our doctor was

clear about the 100 days. What kind of testing did they do? did they do a

pneumovax? per and post titers? I think that would be the one that would be

skewed mostly. But may people test at 3 weeks and then again at 6 weeks so you

could get a better idea if they keep their antibodies. I would consider letting

the doctor know and they will probably rerun some tests at a later time to

get a more accurate picture if they have concerns. I would think that it has

been long enough to see a overall trend even at 80 days.

BARBIE

________________________________

From: " _BBsmart2@..._ (mailto:BBsmart2@...) " <_BBsmart2@..._

(mailto:BBsmart2@...) >

_@..._ (mailto: )

Sent: Wednesday, February 25, 2009 12:29:48 PM

Subject: Re: retest

Britt just did all the blood work to retest her immune system and it was

only 80 days. I'm afraid it was way to soon to be accurate. The nurse mixed

the

dates up when she gave me the info by a month! This is a new doctor. Now do

you understand?

Janet mom to Brittany age 18, CVID

In a message dated 2/25/2009 1:19:25 P.M. Eastern Standard Time,

mother5590 (DOT) com writes:

I do not understand?

************ **You're invited to Hollywood's biggest party: Get s

updates, red carpet pics and more at Moviefone.

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ncid=emlcntusmov i00000001)

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

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[Guest guest]

Yes, I know that some go for a bit less and say 90 days but our doctor was clear

about the 100 days. What kind of testing did they do? did they do a pneumovax?

per and post titers? I think that would be the one that would be skewed mostly.

But may people test at 3 weeks and then again at 6 weeks so you could get a

better idea if they keep their antibodies. I would consider letting the doctor

know and they will probably rerun some tests at a later time to get a more

accurate picture if they have concerns. I would think that it has been long

enough to see a overall trend even at 80 days.

BARBIE

________________________________

From: " BBsmart2@... " <BBsmart2@...>

Sent: Wednesday, February 25, 2009 12:29:48 PM

Subject: Re: retest

Britt just did all the blood work to retest her immune system and it was

only 80 days. I'm afraid it was way to soon to be accurate. The nurse mixed the

dates up when she gave me the info by a month! This is a new doctor. Now do

you understand?

Janet mom to Brittany age 18, CVID

In a message dated 2/25/2009 1:19:25 P.M. Eastern Standard Time,

mother5590 (DOT) com writes:

I do not understand?

************ **You're invited to Hollywood's biggest party: Get s

updates, red carpet pics and more at Moviefone.

(http://movies. aol.com/oscars- academy-awards? ncid=emlcntusmov i00000001)

[Guest guest]

I guess you will have to wait and see but I do think it has been long enough to

get a good baseline. We tested Lucas' immune system many times even when he was

on IVIg and it still has lots of deficiencies. So I think she will get an

overall trend in spite of it being early. I know it must feel a bit scary that

they might dismiss her illness if they come back more normal. I would be worried

if it were in 30 days but at 80 a good bit would have turned back to her

normals. I am sorry.

BARBIE

________________________________

From: " BBsmart2@... " <BBsmart2@...>

Sent: Wednesday, February 25, 2009 1:15:23 PM

Subject: Re: retest

I think they took 20 tubes of blood, no kidding! She said she would test the

pneumovax after these all come back if needed. This is a new doctor!

Janet mom to Brittany age 18, CVID

Yes, I know that some go for a bit less and say 90 days but our doctor was

clear about the 100 days. What kind of testing did they do? did they do a

pneumovax? per and post titers? I think that would be the one that would be

skewed mostly. But may people test at 3 weeks and then again at 6 weeks so you

could get a better idea if they keep their antibodies. I would consider letting

the doctor know and they will probably rerun some tests at a later time to

get a more accurate picture if they have concerns. I would think that it has

been long enough to see a overall trend even at 80 days.

BARBIE

____________ _________ _________ __

From: " _BBsmart2aol (DOT) BBs_ (mailto:BBsmart2aol (DOT) com) " <_BBsmart2aol (DOT) BBs_

(mailto:BBsmart2aol (DOT) com) >

_@groups .Ped_ (mailto:groups (DOT) com)

Sent: Wednesday, February 25, 2009 12:29:48 PM

Subject: Re: retest

Britt just did all the blood work to retest her immune system and it was

only 80 days. I'm afraid it was way to soon to be accurate. The nurse mixed

the

dates up when she gave me the info by a month! This is a new doctor. Now do

you understand?

Janet mom to Brittany age 18, CVID

In a message dated 2/25/2009 1:19:25 P.M. Eastern Standard Time,

mother5590 (DOT) com writes:

I do not understand?

************ **You're invited to Hollywood's biggest party: Get s

updates, red carpet pics and more at Moviefone.

(_http://movies. _ (http://movies. /) aol.com/oscars- academy-awards?

ncid=emlcntusmov i00000001)

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

************ **You're invited to Hollywood's biggest party: Get s

updates, red carpet pics and more at Moviefone.

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[Guest guest]

Who is suggesting a " retest " ? Is it your insurance company or your

" physician?

If it is your insurance company, your physician should be fighting it

tooth and nail. If you have a " proper diagnosis " you are not going to

regrow an immune system, any more that you will regrow an amputated

limb. The AAAAI is very specific about stopping IViG therapy. They say

it is not in the interest of the patient and is not necessary. If for

some very strange reason there was a misdiagnosis, it will show up

when you physician gets you IViG level as part of your semi annual

blood work. The labs will show an increase in IgG, the IViG does not

stop you bodies production of IgG is you make any.

If you doctor is suggesting you go off IViG, you might suggest he gets

the IDF to arrange a Peer consultion with hm and help him understand

IViG and primary immune diseases. If he resists the " suggestion " to

talk to an expert, you might consider another physician.

The entire concept of a " retest " , is just bad medicine and dangerous

for the patient.

>

> PLEASE,can someone tell me when is the minimon time after you stop

IVIG you

> have to wait to retest your immune system??

>

> Thanks!!

>

> Janet mom to Brittany age 18, CVID

>