Question

February 18, 2009

Dr Chestnut

with ICA in seattle april 25-26.. reg thru ICA,, this is number 2

of 4 and it is on proper diet, “cave man” theory, Dan Beeson

From:

[mailto: ] On Behalf

Of Larry Oliver, DC

Sent: Wednesday, February 18, 2009

11:42 AM

ChiroListServe

Subject: Question

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March 10, 2009

I would wait for the titers to return but if you can get over the infections

I would hold off on IVIG to see how he does. If they all turn into bacteria

infections I would start IVIG. It might take longer to get over a virus but

he could build his immune system but if they turn into bacteria then the

battle isn't work it.

Lorri Kraft

19 CVID (13 years on IVIG

From: [mailto: ] On Behalf Of

pavlutracy

Sent: Tuesday, March 10, 2009 8:10 PM

Subject: Question

My son is 5 1/2 and has been diagnosed as " borderline immune deficient. "

Iknow... you either are deficient, or you're not. However, the first

round of tests showed that his levels were all " within normal range "

except for his IgG 1 subclass. The second round of tests showed all

levels (even subclass 1) in normal range (barely). All other Ig levels

are fine.

We are in the process of testing his response to childhood

immunizations. If he shows no response, our plan of action is to try

IVIG. If he does show responses, then we are faced with a big decision.

He has never been hospitalized for anything (except ear tubes), but just

takes longer to recover from colds, infections, etc.

I'm having a hard time deciding if the risks outweigh the benefits to

IVIG at this time. Has anyone had a similar situation? We are really

thinking this through and praying for our little guy right now. Any

advice would be much appreciated.

Also, does anyone out there have twins that have been diagnosed with

PID? My children are boy/girl twins and my daughter doesn't seem to

show the symptoms of PID at this point. Just wondering how likely this

might be... the dr's have kind of been boggled by this.. go figure.

Thank you for being a wonderful, caring group.

-

March 10, 2009

I have the same situation. My son very clearly needed gamma. He was sick all of

the time, low IgG1 and IgG2. Made no response to polysacceride (sp?) vaccines.

He was a clear cut case, and gamma is a lifesaver.

My daughter, on the other hand has a " sluggish " immune system, like my mom and

I. If her IgG drops another 25 points, we will be at the point of borderline.

She makes some responses, more than her brother, but not " normal. " We are

keeping an eye on her. If she gets sick more often, or she doesn't hold her

titres, we will consider gamma.

My son was always sick with one " minor " thing or another. I say minor because he

was not hospitalized. Even though he was not hospitalized, his quality of life

was affected. He never had energy, always had a runny nose, etc. My

daughter...not so much. It's hard to decide. The way I am having to look at it

is this. If she is OK, I am saving the gamma for the more extreme cases that

need it more...until she needs it. It is a tough decision.

(Oh, and they are 3 1/2 years apart!)

From: llkraft@...

Date: Tue, 10 Mar 2009 20:17:42 -0700

Subject: RE: Question

I would wait for the titers to return but if you can get over the infections

I would hold off on IVIG to see how he does. If they all turn into bacteria

infections I would start IVIG. It might take longer to get over a virus but

he could build his immune system but if they turn into bacteria then the

battle isn't work it.

Lorri Kraft

19 CVID (13 years on IVIG

From: [mailto: ] On Behalf Of

pavlutracy

Sent: Tuesday, March 10, 2009 8:10 PM

Subject: Question

My son is 5 1/2 and has been diagnosed as " borderline immune deficient. "

Iknow... you either are deficient, or you're not. However, the first

round of tests showed that his levels were all " within normal range "

except for his IgG 1 subclass. The second round of tests showed all

levels (even subclass 1) in normal range (barely). All other Ig levels

are fine.

We are in the process of testing his response to childhood

immunizations. If he shows no response, our plan of action is to try

IVIG. If he does show responses, then we are faced with a big decision.

He has never been hospitalized for anything (except ear tubes), but just

takes longer to recover from colds, infections, etc.

I'm having a hard time deciding if the risks outweigh the benefits to

IVIG at this time. Has anyone had a similar situation? We are really

thinking this through and praying for our little guy right now. Any

advice would be much appreciated.

Also, does anyone out there have twins that have been diagnosed with

PID? My children are boy/girl twins and my daughter doesn't seem to

show the symptoms of PID at this point. Just wondering how likely this

might be... the dr's have kind of been boggled by this.. go figure.

Thank you for being a wonderful, caring group.

-

March 10, 2009

Not so on the " borderline " . Lab values can lead in one direction or another and

usually the clinical symptoms help to finish off the diagnosis. If it was so

cut and dry then diagnosing the condition wouldn't take on average 7 or so

years. IVIG comes with risks (it is after all a blood product). But so does

infection. Go by clinical health, only when numbers reach a stupidly low level

did we restart treatment. Macey at one point failed a trial off but her health

was good. so we stoped for 18 months. then her IgG got down to like 200 or so

and we knew it was a definite she had this. plus her Dad was diagnosed and her

grandmother is symptomatic so they decided it was hereditary. no use asking for

trouble.

but as an adult she will have the choice of continuing infusions or not. subq

has gone well so i'm hoping she continues

Ursula Holleman

mom to (16) and Macey (13)

www.caringbridge.org/visit/maceyholleman

________________________________

>

> From: pavlutracy@...

> Date: Wed, 11 Mar 2009 03:10:25 +0000

> Subject: Question

>

> My son is 5 1/2 and has been diagnosed as " borderline immune deficient. "

>

> Iknow... you either are deficient, or you're not. However, the first

>

> round of tests showed that his levels were all " within normal range "

>

> except for his IgG 1 subclass. The second round of tests showed all

>

> levels (even subclass 1) in normal range (barely). All other Ig levels

>

> are fine.

>

> We are in the process of testing his response to childhood

>

> immunizations. If he shows no response, our plan of action is to try

>

> IVIG. If he does show responses, then we are faced with a big decision.

>

> He has never been hospitalized for anything (except ear tubes), but just

>

> takes longer to recover from colds, infections, etc.

>

> I'm having a hard time deciding if the risks outweigh the benefits to

>

> IVIG at this time. Has anyone had a similar situation? We are really

>

> thinking this through and praying for our little guy right now. Any

>

> advice would be much appreciated.

>

> Also, does anyone out there have twins that have been diagnosed with

>

> PID? My children are boy/girl twins and my daughter doesn't seem to

>

> show the symptoms of PID at this point. Just wondering how likely this

>

> might be... the dr's have kind of been boggled by this.. go figure.

>

> Thank you for being a wonderful, caring group.

>

> -

>

March 11, 2009

---Hi,

I have 3 kids with CVID. As a baby one of mine had " low " IGG levels, but not low

enough to treat, other than with prophylaxis. My other two had very low IGG,

IGA, and IGM. They all very often get resp infections, and sinus infections. Not

usually anything they are admitted for. A lot of the problem is that almost

anything they get lands in their lungs at some point, and worsens their asthma.

At the time we decided to start IVIG on my two that were " worst " , we decided

that since the other childs numbers were not as bad, and clinically, he was

decent......lots of sinus infections, but otherwise ok, we held off with him.

A yr later, we decided to trial him on IVIG. His numbers were still " borderline "

low....basically, at the very lowest they could be while still being " normal "

but not nearly as low as the other two kids. He was constantly battling sinus

infections and was very fatigued most of the time. He did IVIG for a year and a

half. We trialed him, and he has been doing great!! I think he needed it for

that time to have time to be healthy, get stronger, and currently, we have no

plans to restart IVIG unless things change.

HTH,

valarie

In , " pavlutracy " <pavlutracy@...> wrote:

>

> My son is 5 1/2 and has been diagnosed as " borderline immune deficient. "

> Iknow... you either are deficient, or you're not. However, the first

> round of tests showed that his levels were all " within normal range "

> except for his IgG 1 subclass. The second round of tests showed all

> levels (even subclass 1) in normal range (barely). All other Ig levels

> are fine.

>

> We are in the process of testing his response to childhood

> immunizations. If he shows no response, our plan of action is to try

> IVIG. If he does show responses, then we are faced with a big decision.

>

> He has never been hospitalized for anything (except ear tubes), but just

> takes longer to recover from colds, infections, etc.

>

> I'm having a hard time deciding if the risks outweigh the benefits to

> IVIG at this time. Has anyone had a similar situation? We are really

> thinking this through and praying for our little guy right now. Any

> advice would be much appreciated.

>

> Also, does anyone out there have twins that have been diagnosed with

> PID? My children are boy/girl twins and my daughter doesn't seem to

> show the symptoms of PID at this point. Just wondering how likely this

> might be... the dr's have kind of been boggled by this.. go figure.

>

> Thank you for being a wonderful, caring group.

>

> -

>

March 17, 2009

In message <gpo8qk+6seveGroups> you wrote:

> I checked my kombucha yesterday because today it was supposed to be done

> and I found the weirdest thing. My scoby had puffed right out of the tea.

> It was like under pressure when I poked it back down. I have no idea how

> long it was like that. Do you think the tea is still good or should I

> leave it sit awhile longer with it (scoby) back in the tea?

Hi , the puffing/popping up is completely normal. This happens

because of very active bubble activity and accumulation of CO2 inside

the scoby. As gas is lighter than the liquid, up it will pop.

This is actually great, because it shows you that you have a very well

working, active culture! It does not matter if the darling pops out

on top of the liquid. It's like a liquid filled sponge anyway and will not

dry up in a hurry. You KT will not suffer!

Have you tried the KT liquid yet? I should, to find out whether your

Kombucha tea has reached the desired acidity. If it has: Happy guzzling

and /or bottling, if still too sweet, give it some more days until it does.

You are on a winner, !

Greetings most kombuchaly,

Margret UK :-)

--

+------------------ Minstrel@... --------------------+

<)))<>< http://www.therpc.f9.co.uk <)))<><

http://bavarianminstrel.wordpress.com

I try to take one day at a time, but sometimes

several days attack me at once.

March 25, 2009

patterns change all the time, if you have a regular pattern now

(and a pattern is a pattern whether its 28 days 14 days or 4 to 6

weeks) theres nothing to say they won't change next month. We kept the

same pattern for almost two years and then without notice she stopped

fevering for eight months. The fevers then came back all over the map

and eventually settled into about every 45 days. People report all

different time frames so who knows where the number will fall. The

stomache problems with the fevers used to scare us thinking she had

something major wrong but nothing ever presented itself. Most people

all report their child complaining of horrible stomache and leg pain

associated with an attack. We even had our little girl knocked out and

ultrasounded and cat scanned to see if any organs looked out of sorts.

I don't know who would tell you gastric pains are not related

because almost everyone states that their child gets horrible stomache

cramping. Keeping a good fever log helps with predictability and can

assist with any future Doctor visits.. Good luck.,. Steve.

March 25, 2009

Who diagnosed you daughter?? Dr. Boyce? That was who diagnosed our son at

Mayo. Are you from the Rochester area?

March 27, 2009

Dr. Boyce did diagnose her! We are from Illinois but travel to Mayo for all our

daughters healthcare. We just made our 8th trip in 2 years! Do you live there

and Bouman

29:11

March 30, 2009

I grew up in Rochester. We currently live about 15 minutes from the Rochester

area. We really like Dr. Boyce. I can't imagine anything gets him too excited.

He does a great job with education and has showed me the inside of my son's ear

during an ear infection. I thought that was pretty neat. I am hopeful we won't

need him anymore after my son's T/A in November. I don't miss the episodes. My

neighbor has used Dr. Boyce for her daughter for other medical things and she

really like him, too. What a baffling disorder this is!

Lynn

March 30, 2009

I grew up in Rochester. We currently live about 15 minutes from the Rochester

area. We really like Dr. Boyce. I can't imagine anything gets him too excited.

He does a great job with education and has showed me the inside of my son's ear

during an ear infection. I thought that was pretty neat. I am hopeful we won't

need him anymore after my son's T/A in November. I don't miss the episodes. My

neighbor has used Dr. Boyce for her daughter for other medical things and she

really like him, too. What a baffling disorder this is!

Lynn

March 31, 2009

Did Dr. Boyce to the T/A? How long did it take him to agree to have it done? He

has told us to wait at least a year on the prednisone until he will talk about

it. Did he respond this way to you too?

and Bouman

29:11

March 31, 2009

We had two plus years of with Damian including a hospitalization that

started the diagnosis process. We started the prednisone just in July 2008 and

had the T/A by Dr. Orvidas at Mayo in ENT who was referred to us by Dr. Boyce.

She has done other T/A. We only did prednisone about 3 months before I

called him and said this is not working for us. I wanted to look at the T/A

option. Our reason for this is because of the other issues have have with our

son. He has been in special education for the past 2 years because of

behaviors. He has the worlds largest srong will. It was literally a battle to

get him to take the prednisone with pure sugar (the only way we could get him to

take it when we were success with him taking it). We were having a lot of

behaviors in between episodes and then we had to do this battle every two weeks

to get him to take the prednisone. I called him and said we can't do this

anymore. He was open to the T/A. Damain has a lot of documentation through Mayo

regarding his behaviors so it was always a known. I wish I could give you a

better approach, but we really were at wits end and he agreed it's not worth the

battle. It was to the point I had to bring him to the ER/doctor and have them

give him his medication. I think if you can really give him some good reasons

why this would be best I think he would listen. I do think he's right to take

caution because it is surgery (I cried surgery day) and the other thing I recall

him saying to me is he is not completely sure about the statistics that is

100% cured with surgery. So he wants to weigh out the options. I think I have

also been reading others that experienced episodes getting farther apart after

treatment begins. All that said, I would probably have still wanted the T/A

even if there were no behaviors from my son. I do think he's trying to make a

sound decision for your family. However, he does not live in your home so I

would let him know how this is impacting your family if indeed this is something

you strongly feel about. Best of luck. Let me know what you decide to do.

It's nice to feel connected to a family. Your family will be in my prayers.

Lynn

>

> Did Dr. Boyce to the T/A? How long did it take him to agree to have it done?

He has told us to wait at least a year on the prednisone until he will talk

about it. Did he respond this way to you too?

>

> and Bouman

> 29:11

>

March 31, 2009