Question

[Guest guest]

I hadn't thought about rings. Thanks!

--- firehorsebs <firehorsebs@...> wrote:

> Hello All,

>

> I have been pondering over this for awhile. I

> understand that when we

> are handling scobies that we remove our rings on our

> fingers...my

> question is would finger nail polish while handling

> scoby/kt have any

> effect on scoby/KT?

>

> P

>

>

Gibson

home (248) 853-0190 • mobil (248) 495-6567

2536 Brilliance

Rochester Hills, MI 48309

--•--•--•--•--•--•--•--•--•--•--•--•--•--

http://www.Portfolios.com/Gibson

Member SCBWI

________________________________________________________________________________\

____

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for

today's economy) at Games.

http://get.games./proddesc?gamekey=monopolyherenow

[Guest guest]

I hadn't thought about rings. Thanks!

--- firehorsebs <firehorsebs@...> wrote:

> Hello All,

>

> I have been pondering over this for awhile. I

> understand that when we

> are handling scobies that we remove our rings on our

> fingers...my

> question is would finger nail polish while handling

> scoby/kt have any

> effect on scoby/KT?

>

> P

>

>

Gibson

home (248) 853-0190 • mobil (248) 495-6567

2536 Brilliance

Rochester Hills, MI 48309

--•--•--•--•--•--•--•--•--•--•--•--•--•--

http://www.Portfolios.com/Gibson

Member SCBWI

________________________________________________________________________________\

____

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for

today's economy) at Games.

http://get.games./proddesc?gamekey=monopolyherenow

[Guest guest]

Type as the subject - Ask Dr. ____ (Wagner or Chansky or Geller...)

Louis (listowner) will forward it to the doctor(s).

>

> How does one go about proposing a question to the experts on the

> list (dr.'s)?

> Thanks,

> F

>

[Guest guest]

Type as the subject - Ask Dr. ____ (Wagner or Chansky or Geller...)

Louis (listowner) will forward it to the doctor(s).

>

> How does one go about proposing a question to the experts on the

> list (dr.'s)?

> Thanks,

> F

>

[Guest guest]

well it depends upon what kind of regeneration you are talking about... in live liver donors, usually within 3-6 months the half livers have grown to full size again.. but if you are talking about the liver healing itself and regenerating,, well when I treated,, this was 5 years ago that I went undetectible I was stage 3-4 with early cirrhosis... the last time I had a biopsy which was in 05, 2 years ago when I had my gallbladder removed, it was stage 2-3... so I think it takes years for it to heal up from being sick.. and it can only do that if you really take good care of it... thats my take on it.. but Im not a doc, but this opinion is based upon watching lots of ppl treat and how they do afterwards.. jaxJurydoctor@... wrote: How long does it take the liver to regenerate? thanks, amy See what's new at AOL.com and Make AOL Your Homepage. Jackie

[Guest guest]

Hi Becky,

Maddie sure sounds like she is on the edge. Keep in mind that 600 is just a

number. What everyone is looking for is that in correlation with her clinical

picture. The question really comes to quality of life. Another thing is that

function is another whole issue when we are talking about IgG and any or all of

the components of the immune system. It makes me wonder if you have not found

the whole picture yet.

My son Lucas is 11 as well and I cannot imagine having him feel so bad and drag

around as it seems that she is doing. Are they talking about starting

Gammaglobulin? It may be that the constant antx are causing part of the problem

by irritating the gut as well as killing off the normal flora that would be

protecting the gut. I just know that after we started gammaglobulin that we had

incredible improvement in his overall quality of life. It may be worth a try

since she seems to be suffering so much. I think the overall goal of therapy is

to protect the organs from damage whether it be the gut, lungs or sinuses. Good

Luck with your journey to find the answers with the immune system. I know that

IDF has a speaker who does a lot with the gut at every conference I have been

to. It may be worth a try to get a consult with him. I cannot remember his name

but I think he is from Florida.

Becky McClure <beckymcclure825@...> wrote: I

have been on this board for sometime-my Maddie (age 11.5) has been diagnosed as

IgA def for a long time-the rest has been gradually falling. She has subclass

2 & 3 deficits and total has always been just below normal.

Well, this year she has started having some pretty hefty gut issues. We have

had 2 endoscopies done-and she still has at least 7 ulcers-down from 15-but the

ones that are left are bigger and worse than they were 4 months ago. She is

already taking 40 mg of protonix once a day and carafate 4x a day (along with

needing breakthrough maalox). At her gastro checkup on Friday, we got back her

latest test results-and her IgG has fallen to just above 600. Her gastro is

adamant that her infectious disease doc-the closest decent immunologist is in

Cincinnati-do something to treat the IgG issues. My question is-is 600 low

enough to worry about it? She does have lots of fatigue issues and any type of

sore she gets never heals properly, but she seems okay otherwise as long as she

takes her daily amoxicillin-other than her gut is really hurting and things down

that way look so bad. The doctor is worried that if her gut is this bad now-and

her immune system keeps getting worse,

that we will have damage that can not be fixed.

Also-MRSA has been a real issue in our area-mostly around athletes-it has been

in a couple of schools in our county-and I am worried about her being in the

locker room with PE-is this a valid concern of mine-or am I going off the wall

here? I know it takes direct contact-but I also know that the issue with

athletes around here is that they do not always keep things covered-and I get

stressed about this.....my parents think we should pull her from pe-but she

loves pe and it is a real stress reliever for her. She tries so hard to be

normal at school-her teachers always say that they would never know there was

anything wrong with her-but she sleeps on the bus on the way to school and

sleeps the whole way home-and then we battle to get homework done-some days she

just wants to go to bed when she gets home....

Becky in IN-mom to Maddie........

[Guest guest]

There are two things I keep meaning to ask about, and this message is jogging my

brain, so....

1. It seems that alot of people with PID experience symptoms similar to

fibromyalgia and chronic fatigue. My daughter was dx'd with pediatric

fibromyalgia in 2004, but was incapacitated for 5 years before that. Some

things the diagnosing physician recommended did help, but she still experienced

things I see people talking about on the list. PID wasn't confirmed until just

this year. It makes me wonder if she doesn't really have FM and her symptoms,

infections has been PID all along. If this could be the case, I wonder how many

other people might have PID and are going around suffering?

2. Gastro-intestinal issues including resistant, pathogenic bacteria, chronic

fungus have been some of the things my daughter has dealt with for many years.

It started long before any of her other symptoms emerged. I've come across very

little about gut problems with PID, but would like to know more. My daughter

has normal IgA per blood test, but close to zero on mucosal IgA. Any ideas where

to look for more info on this? For kids with PID that had severe gut problems,

was there improvement with IVIG? Does low mucosal IgA fit into any of this?

Thanks,

Re: Question

Hi Becky,

Maddie sure sounds like she is on the edge. Keep in mind that 600 is just a

number. What everyone is looking for is that in correlation with her clinical

picture. The question really comes to quality of life. Another thing is that

function is another whole issue when we are talking about IgG and any or all of

the components of the immune system. It makes me wonder if you have not found

the whole picture yet.

My son Lucas is 11 as well and I cannot imagine having him feel so bad and

drag around as it seems that she is doing. Are they talking about starting

Gammaglobulin? It may be that the constant antx are causing part of the problem

by irritating the gut as well as killing off the normal flora that would be

protecting the gut. I just know that after we started gammaglobulin that we had

incredible improvement in his overall quality of life. It may be worth a try

since she seems to be suffering so much. I think the overall goal of therapy is

to protect the organs from damage whether it be the gut, lungs or sinuses. Good

Luck with your journey to find the answers with the immune system. I know that

IDF has a speaker who does a lot with the gut at every conference I have been

to. It may be worth a try to get a consult with him. I cannot remember his name

but I think he is from Florida.

Becky McClure <beckymcclure825@...> wrote: I have been on this board for

sometime-my Maddie (age 11.5) has been diagnosed as IgA def for a long time-the

rest has been gradually falling. She has subclass 2 & 3 deficits and total has

always been just below normal.

Well, this year she has started having some pretty hefty gut issues. We have

had 2 endoscopies done-and she still has at least 7 ulcers-down from 15-but the

ones that are left are bigger and worse than they were 4 months ago. She is

already taking 40 mg of protonix once a day and carafate 4x a day (along with

needing breakthrough maalox). At her gastro checkup on Friday, we got back her

latest test results-and her IgG has fallen to just above 600. Her gastro is

adamant that her infectious disease doc-the closest decent immunologist is in

Cincinnati-do something to treat the IgG issues. My question is-is 600 low

enough to worry about it? She does have lots of fatigue issues and any type of

sore she gets never heals properly, but she seems okay otherwise as long as she

takes her daily amoxicillin-other than her gut is really hurting and things down

that way look so bad. The doctor is worried that if her gut is this bad now-and

her immune system keeps getting worse,

that we will have damage that can not be fixed.

Also-MRSA has been a real issue in our area-mostly around athletes-it has been

in a couple of schools in our county-and I am worried about her being in the

locker room with PE-is this a valid concern of mine-or am I going off the wall

here? I know it takes direct contact-but I also know that the issue with

athletes around here is that they do not always keep things covered-and I get

stressed about this.....my parents think we should pull her from pe-but she

loves pe and it is a real stress reliever for her. She tries so hard to be

normal at school-her teachers always say that they would never know there was

anything wrong with her-but she sleeps on the bus on the way to school and

sleeps the whole way home-and then we battle to get homework done-some days she

just wants to go to bed when she gets home....

Becky in IN-mom to Maddie........

[Guest guest]

yes and yes are the short answers to your questions.

1. When my son hs low IgG he is very achy and sore and complains of fatigue,

sleep more and just seem very fluish. So yes the symptoms are very similar to

Fibromyalgia or CFS.

I am not sure what the specific pathophysiology is but most kids have the same

issues. I know that when his levels are good all of that goes away. When he was

on IVIg he always had a return of symptoms on the 3rd week. Now that he is on

Sub Q we do not have any of these symptoms unless he is getting sick. I think it

is a bombardment of the cells/tissue from bacteria/virus so it causes chronic

inflammation. Lucas has sever inflammation as well as mucusy bloody stools. He

had eosinophylic gastroenteritis as a 3 month old and bloody stools on and off

until he was about 4. After that it has been very difficult to know what is

going on because he will not let me in on what is going on. He does complain of

tummy aches and has had some pretty severe constipation. I think the gut flora

remains abnormal because of antibiotics and just his low IgA and high IgE and

eosinophils in his blood. I will not be surprised if we have more serious gut

problems again but he is pretty stoic

and I know I will not hear about it unless it gets severe. I do not have the

answers about all of this only some information and our experiences.

2. Yes, there are gut problems some have much worse problems than others.I It

depends on the diagnosis. CVID seems to have more gut problems from what I have

seen. Partly because of the decreased IgA on the lining of the muscosa. Lucas

had severe problems as an infant. He was adopted so I did not have the advantage

of Breastmilk. If I had it to do again I would have found a way to have donor

milk for him. He was unable to use any over the counter formula and even could

not digest pregestimil or Nutramigen. I finally came up with a goats milk

formula that I researched and put together. Fortuanately I had a good

pediatrician who would work with me.

susan sorensen <sorensens004@...> wrote:

There are two things I keep meaning to ask about, and this message is

jogging my brain, so....

1. It seems that alot of people with PID experience symptoms similar to

fibromyalgia and chronic fatigue. My daughter was dx'd with pediatric

fibromyalgia in 2004, but was incapacitated for 5 years before that. Some things

the diagnosing physician recommended did help, but she still experienced things

I see people talking about on the list. PID wasn't confirmed until just this

year. It makes me wonder if she doesn't really have FM and her symptoms,

infections has been PID all along. If this could be the case, I wonder how many

other people might have PID and are going around suffering?

2. Gastro-intestinal issues including resistant, pathogenic bacteria, chronic

fungus have been some of the things my daughter has dealt with for many years.

It started long before any of her other symptoms emerged. I've come across very

little about gut problems with PID, but would like to know more. My daughter has

normal IgA per blood test, but close to zero on mucosal IgA. Any ideas where to

look for more info on this? For kids with PID that had severe gut problems, was

there improvement with IVIG? Does low mucosal IgA fit into any of this?

Thanks,

Re: Question

Hi Becky,

Maddie sure sounds like she is on the edge. Keep in mind that 600 is just a

number. What everyone is looking for is that in correlation with her clinical

picture. The question really comes to quality of life. Another thing is that

function is another whole issue when we are talking about IgG and any or all of

the components of the immune system. It makes me wonder if you have not found

the whole picture yet.

My son Lucas is 11 as well and I cannot imagine having him feel so bad and drag

around as it seems that she is doing. Are they talking about starting

Gammaglobulin? It may be that the constant antx are causing part of the problem

by irritating the gut as well as killing off the normal flora that would be

protecting the gut. I just know that after we started gammaglobulin that we had

incredible improvement in his overall quality of life. It may be worth a try

since she seems to be suffering so much. I think the overall goal of therapy is

to protect the organs from damage whether it be the gut, lungs or sinuses. Good

Luck with your journey to find the answers with the immune system. I know that

IDF has a speaker who does a lot with the gut at every conference I have been

to. It may be worth a try to get a consult with him. I cannot remember his name

but I think he is from Florida.

Becky McClure <beckymcclure825@...> wrote: I have been on this board for

sometime-my Maddie (age 11.5) has been diagnosed as IgA def for a long time-the

rest has been gradually falling. She has subclass 2 & 3 deficits and total has

always been just below normal.

Well, this year she has started having some pretty hefty gut issues. We have had

2 endoscopies done-and she still has at least 7 ulcers-down from 15-but the ones

that are left are bigger and worse than they were 4 months ago. She is already

taking 40 mg of protonix once a day and carafate 4x a day (along with needing

breakthrough maalox). At her gastro checkup on Friday, we got back her latest

test results-and her IgG has fallen to just above 600. Her gastro is adamant

that her infectious disease doc-the closest decent immunologist is in

Cincinnati-do something to treat the IgG issues. My question is-is 600 low

enough to worry about it? She does have lots of fatigue issues and any type of

sore she gets never heals properly, but she seems okay otherwise as long as she

takes her daily amoxicillin-other than her gut is really hurting and things down

that way look so bad. The doctor is worried that if her gut is this bad now-and

her immune system keeps getting worse,

that we will have damage that can not be fixed.

Also-MRSA has been a real issue in our area-mostly around athletes-it has been

in a couple of schools in our county-and I am worried about her being in the

locker room with PE-is this a valid concern of mine-or am I going off the wall

here? I know it takes direct contact-but I also know that the issue with

athletes around here is that they do not always keep things covered-and I get

stressed about this.....my parents think we should pull her from pe-but she

loves pe and it is a real stress reliever for her. She tries so hard to be

normal at school-her teachers always say that they would never know there was

anything wrong with her-but she sleeps on the bus on the way to school and

sleeps the whole way home-and then we battle to get homework done-some days she

just wants to go to bed when she gets home....

Becky in IN-mom to Maddie........

[Guest guest]

--- I can tell you our experience. Two of my children had very low IGG

counts, and we could clearly see the need to start IVIG. My other son,

had lowish counts......in the 500's......so we waited. The worst thing

was the fatigue. I mean, every time we got in a car, he was sleeping.

He was trying to sleep at school. Constantly, and from a 5-6 yr old

child, we heard, " but Im so tired! " . He was pale, with dark circles

around his eyes, and had some sinus problems, but other than that, he

seemed pretty good.

When he started struggling in school bc of fatigue, and couldnt kick a

sinus infection after several months, we decided to try IVIG and just

see what would happen.

Immediately, my sluggish, always tired boy had color, less dark

circles, and so much energy, he was getting in trouble:) a problem we

had never had before. It was incredible. That was last Feb.

Last month, he missed his infusion. Immediately, we were back to the

same problem, constantly tired, dark circles, pale. He had his

infusion on Friday, and this weekend its the same thing......boundless

energy, good color! So I have my answer.

Sometimes, its not just the major illnesses that need treating.

Sometimes, its the more minor, but chronic problems, too.

valarie

In , " Becky McClure " <beckymcclure825@...> wrote:

>

> I have been on this board for sometime-my Maddie (age 11.5) has been

diagnosed as IgA def for a long time-the rest has been gradually

falling. She has subclass 2 & 3 deficits and total has always been just

below normal.

>

> Well, this year she has started having some pretty hefty gut issues.

We have had 2 endoscopies done-and she still has at least 7

ulcers-down from 15-but the ones that are left are bigger and worse

than they were 4 months ago. She is already taking 40 mg of protonix

once a day and carafate 4x a day (along with needing breakthrough

maalox). At her gastro checkup on Friday, we got back her latest test

results-and her IgG has fallen to just above 600. Her gastro is

adamant that her infectious disease doc-the closest decent

immunologist is in Cincinnati-do something to treat the IgG issues.

My question is-is 600 low enough to worry about it? She does have

lots of fatigue issues and any type of sore she gets never heals

properly, but she seems okay otherwise as long as she takes her daily

amoxicillin-other than her gut is really hurting and things down that

way look so bad. The doctor is worried that if her gut is this bad

now-and her immune system keeps getting worse, that we will have

damage that can not be fixed.

>

> Also-MRSA has been a real issue in our area-mostly around

athletes-it has been in a couple of schools in our county-and I am

worried about her being in the locker room with PE-is this a valid

concern of mine-or am I going off the wall here? I know it takes

direct contact-but I also know that the issue with athletes around

here is that they do not always keep things covered-and I get stressed

about this.....my parents think we should pull her from pe-but she

loves pe and it is a real stress reliever for her. She tries so hard

to be normal at school-her teachers always say that they would never

know there was anything wrong with her-but she sleeps on the bus on

the way to school and sleeps the whole way home-and then we battle to

get homework done-some days she just wants to go to bed when she gets

home....

>

> Becky in IN-mom to Maddie........

>

>

>

>

[Guest guest]

LOL, ditto! But dropped to the 200's from 460's. We knew we had to do

something. Even though had only been hospitalized once before IVIG, he was

never well. Quality of life was lacking. I love gamma, he is healthy and happy

now. He has energy and is only tired the night of SubQ. No more dark circles for

us.

@...: osdbmom@...: Mon, 22 Oct 2007 01:21:34

+0000Subject: Re: Question

--- I can tell you our experience. Two of my children had very low IGGcounts,

and we could clearly see the need to start IVIG. My other son,had lowish

counts......in the 500's......so we waited. The worst thingwas the fatigue. I

mean, every time we got in a car, he was sleeping.He was trying to sleep at

school. Constantly, and from a 5-6 yr oldchild, we heard, " but Im so tired! " . He

was pale, with dark circlesaround his eyes, and had some sinus problems, but

other than that, heseemed pretty good.When he started struggling in school bc of

fatigue, and couldnt kick asinus infection after several months, we decided to

try IVIG and justsee what would happen.Immediately, my sluggish, always tired

boy had color, less darkcircles, and so much energy, he was getting in trouble:)

a problem wehad never had before. It was incredible. That was last Feb.Last

month, he missed his infusion. Immediately, we were back to thesame problem,

constantly tired, dark circles, pale. He had hisinfusion on Friday, and this

weekend its the same thing......boundlessenergy, good color! So I have my

answer. Sometimes, its not just the major illnesses that need

treating.Sometimes, its the more minor, but chronic problems, too.valarieIn

, " Becky McClure " <beckymcclure825@...> wrote:>> I have

been on this board for sometime-my Maddie (age 11.5) has beendiagnosed as IgA

def for a long time-the rest has been graduallyfalling. She has subclass 2 & 3

deficits and total has always been justbelow normal.> > Well, this year she has

started having some pretty hefty gut issues.We have had 2 endoscopies done-and

she still has at least 7ulcers-down from 15-but the ones that are left are

bigger and worsethan they were 4 months ago. She is already taking 40 mg of

protonixonce a day and carafate 4x a day (along with needing

breakthroughmaalox). At her gastro checkup on Friday, we got back her latest

testresults-and her IgG has fallen to just above 600. Her gastro isadamant that

her infectious disease doc-the closest decentimmunologist is in Cincinnati-do

something to treat the IgG issues. My question is-is 600 low enough to worry

about it? She does havelots of fatigue issues and any type of sore she gets

never healsproperly, but she seems okay otherwise as long as she takes her

dailyamoxicillin-other than her gut is really hurting and things down thatway

look so bad. The doctor is worried that if her gut is this badnow-and her immune

system keeps getting worse, that we will havedamage that can not be fixed.> >

Also-MRSA has been a real issue in our area-mostly aroundathletes-it has been in

a couple of schools in our county-and I amworried about her being in the locker

room with PE-is this a validconcern of mine-or am I going off the wall here? I

know it takesdirect contact-but I also know that the issue with athletes

aroundhere is that they do not always keep things covered-and I get

stressedabout this.....my parents think we should pull her from pe-but sheloves

pe and it is a real stress reliever for her. She tries so hardto be normal at

school-her teachers always say that they would neverknow there was anything

wrong with her-but she sleeps on the bus onthe way to school and sleeps the

whole way home-and then we battle toget homework done-some days she just wants

to go to bed when she getshome....> > Becky in IN-mom to Maddie........> > > >

[Guest guest]

Becky McClure wrote:

>

>

> I have been on this board for sometime-my Maddie (age 11.5) has been

> diagnosed as IgA def for a long time-the rest has been gradually

> falling. She has subclass 2 & 3 deficits and total has always been just

> below normal.

>

> My question is-is 600

> low enough to worry about it? She does have lots of fatigue issues and

> any type of sore she gets never heals properly, but she seems okay

> otherwise as long as she takes her daily amoxicillin-other than her gut

> is really hurting and things down that way look so bad. The doctor is

> worried that if her gut is this bad now-and her immune system keeps

> getting worse, that we will have damage that can not be fixed.

>

Becky, I know you've been around awhile and we've all been hearing about

Maddie for a long time -- it's hard to believe she's 11 already! But I

want to go over some basics. I hope that's okay. Sometimes we read

about it when it pertains to other people -- but when we need the answer

ourselves, we need to see it again.

#1 they are just numbers! The clinical picture is much more important

and it sounds like she's in trouble clinically.

#2 IgG total number can be perfectly normal, but if you have subclass

deficiencies it means that certain germs are not being covered. There

are 4 major subclasses (and a bunch that haven't been identified yet).

Think of it as a soccer field and each subclass is supposed to protect

1/4 of the field. If 2 of those are missing, the other 2 subclasses

work very, very hard to try to cover what is missing and may actually

increase their numbers raising the total number of IgG so that it looks

normal -- but if it's the wrong subclass -- then there are areas of her

immune system that are missing. In my opinion (just a mom) any time

there are 2 subclasses missing, IgG replacement is in order -- but

especially when the clinical picture takes a nose dive.

#3 What is her response to vaccinations? Has that been rechecked

recently? I would suspect with 2 subclasses missing that there are

laboratory-visible areas that are not being protected. Once that is

established, it really doesn't matter what her IgG numbers are;

something is not working.

Finally, I want you to know that Katy's primary complaint was gut

related. So bad that she was passing occult blood constantly, refusing

to eat because she hurt so bad. She almost starved herself to death

before we got help. When she finally started having sinus and ear

infections a new pediatrician was able to put it all together and

finally diagnose her. At that point she was eating no milk products, no

fruits, no vegetables, no sugar, no fats. Essentially she was living on

baked chicken and white rice -- because she could tolerate that at small

amounts without exploding. One year after beginning IVIG, she was back

to a normal diet except for milk products. 3 years after beginning

IVIG, she began adding milk and as long as she doesn't overdo it -- she

can tolerate most milk products. She still can't overdo her fats, but

for the most part, she eats totally anything she wants. So, my answer

is yes, IgG replacement may make a substantial different in her gut

problems even though it is primarily protected by IgA. I believe that

IgG plays a bigger role in the gut than anyone has figured out yet.

Best wishes for Maddie. It brings back memories of very, very hard days

when I read about her pain. Please talk with the doctors about giving

IgG replacement a try. I would recommend sub-Q if possible, just

because she's getting old enough to do it herself and that will be

important in the very near future! But however, you and she chose to do

it, I think the danger of permanent damage is too real to wait much longer.

Hope that helps,

In His service,

dale

[Guest guest]

Hi Leigh

As far as I know pancreatic levels have not been tested on our daughter although

they have done so much blood work, I don't understand the abbreviations, so

perhaps they have done it and not mentioned it because it was normal.

In terms of putting your daughter through the ct scan really only you and your

doctor can decide. On one hand it's good to rule out serious causes of the fever

and I'm sure your doctor has a solid reason for wanting to perform the scan. On

the other hand you want to be sure it's really necessary before putting her

through it.

I remember last year we were told to have an abdominal ultrasound done on Emma

and although that's not invasive in the slightest, it was traumatic to her! I

think she was just so fed up with doctors prodding, and scared.

Not sure if this helps but I wanted to reply even if I haven't had the personal

experience with a ct scan or the increased pancreatic levels.

Take care

Inga

[Guest guest]

We had a full body CT scan with and without contrast. Since insurance

covered it, I was really glad we did it. With Ivy's blood levels all

being out of whack and the fevers- it was such a relief to find out

that there were no tumors etc. She was a real trooper too, they didn't

have to sedate her at all. Which was an amazing blessing after what we

went through when they sedated her for an MRI- that was an AWFUL

experience. The sedation for her echo was better but still not a good

experience.

Ruling out all that they can rule out really does give a piece of mind

that helps get through the good and bad days. I hated not knowing for

sure that the terminal sicknesses were still an option.

So, if your insurance covers it, I'd recommend it.

Amy

mother of Ivy (22 months- fevering since 12 months)

and Jade 4 1/2 (never ever gets sick)

[Guest guest]

Leigh

Just so you know my son has never had any mouth sores. He has had a

red throat with his fevers and once in awhile has swollen

lymphnodes. Otherwise its the fever and the redness in the throat.

We never have had a CT nor asked to but that may be just a

difference in testing. Based on his symptoms we did lots of

bloodwork to rule out the big hitters like JRA and other stuff like

FMF and immune system stuff.

[Guest guest]

Hi Leigh,

My son has never had mouth sores. He only had a red throat during

one episode and other than that he hasn't had ANY symptoms other

than the fever. Despite the lack of mouth sores they are still

leaning towards . They've all told me(and we've been to several

doctors) that, above everything else, the predictability of his

episodes really makes them lean towards .

I don't know what my son's pancreatic levels are, or if they even

tested them. They have never come up in conversation.

We're also determining whether to put my son through a CT scan. My

son's doctor wants to do a CT scan of his head to check a few

things. I'm somewhat hesitant due to the amt of radiation associated

with CT scans. I'm going to see if there are any alternatives.

Unfortunately I don't think there are for the area they need to

see/purpose of the test. If this proves to be our only option then I

guess we'll have to go through with it. I have no idea about the

pancreas or purpose of the test requested, but can they do a

sonogram or xray on your daughter? I'm sure they've already looked

at other options, but may be worth re-asking.

Best of luck in making your decision,

Vivian

Mom to , 22 months

[Guest guest]

Hi Vivian,

Thanks for your e-mail. Yes the catscan option is not very appealing. And I hope

we both can find an alternative. We're definitely going to look into other

options and/or get a second opinion.

How predicatable are your son's fevers?

thanks again. It's so nice to bond even over scary things like this.

-Leigh

[Guest guest]

Vivian and Leigh,

My son also has never had mouth sores, at least that

we have witnessed. In fact, his ONLY symptom is

fever. From what I have read and discussed with our

specialist, hallmarks include a very predictable

cycle of high fevers with very good health in between,

and normal growth/weight gain. Some specialists

still explain that mouth sores are part of the

diagnosis (that's why it is called Periodic Fever

Associated with all that stuff), but I disagree.

is a relatively new diagnosis (1987, I believe),

and we are still finding out all the different cases

that fit into that diagnosis.

We did go through a CT scan of the sinuses for Eli,

although in retrospect, I don't think it was really

necessary. I guess the idea was to rule out a chronic

sinusitis. However, the likelihood of a chronic

infection seemed pretty rare to me with such clockwork

fevers for many many months, and, as I mentioned, NO

OTHER SYMPTOMS. Eli was just over 2yrs when we did

the scan, and he was terrified. He had to be

sedated, and that just didn't work out very well. He

received almost 3 x's the adult dose of Versed (a

common sedative), and still was afraid and awake

enough to give only an incomplete picture. I learned

afterwards that one CT scan has the equivalent

radiation exposure of about 200 chest CXrays! Yikes!

I suppose that is not much in the long run, if you

are not encountering radiation from other tests. Oh,

and our out of pocket cost for that CT scan was close

to 250 bucks! We could have spent that on Tylenol

and Ibuprofen for the year, if you know what I mean!

To counter all that, many have mentioned the relief

they feel when a test like a CT comes back negative.

Sometimes I wonder if we have not done enough rule out

testing for Eli, because other than that scan, all we

have done is blood work, which has been entirely

unremarkable. I will always have the nagging voice

asking " Are we missing something? " . But I do tend to

agree with Dr. O'Connor at Cardinal Glennon in St.

Louis, who felt that aggressive testing was not

warranted unless Eli got worse in any way, or

developed any new symptoms.

Unfortunately, insurance coverage has to be part of

the decision making process. I think if everything

was covered and didn't cost over 200 bucks per test we

would be more inclined to do a few more things.

I am very vigilant for any changes in Eli's pattern.

The fevers are horrible, but otherwise he is an

incredibly healthy, intelligent boy. I weighed him

today at 42 pounds, and he is not even 3 yet! Wow!

That's not the picture of someone with a

life-threatening illness, Thank God.

Boy, that was long winded!

Thanks for listening!

Jen Harvey

Prescott, AZ

[Guest guest]

Totally agree about the unnecessary testing! Our Dr's have been very selective

about testing(a GP, Paediatrician, Infectious Disease Specialist and Immunology

have all been involved with ). There are very few diseases that cause

cyclical fevers that follow a predictable pattern. I have read several medical

journals that state if the child is in good health other then when he/she is

fevering and is growing and healthy in between the episodes, that testing should

be minimal.

Over 1.5 years ago, before we knew what had, he was put through a very

stressful bone scan at our Children's Hospital ER when he was at the height of

the fever. Now, that I know so much more, I doubt if I would have put him threw

that and would have asked for a second opinion.

If your child is exhibiting signs/symptoms of something else, then that is an

entirely different situation when it comes to testing.

We have not even had the genetic testing - sometimes I wonder if we should - but

the Dr's are pretty confident that with the clockwork fevers, swollen lymph

nodes and sore throats that he definitely fits the definition of . The

said the " wellness " in between episodes is also a critical criteria for

diagnosis.

As a side note our testing has included a ton of blood work during fevers and

after, ultrasound and bone scan.

Good luck everyone!

Regards,

mother to 2- fevering since 8 months.

[Guest guest]

If they are requesting specific intersegmental levels, then you might

want to ask THEM.

But really, in some cases I would imagine that it might be pretty

important and we should try as chiros to be as accurate and specific

as possible.

A few years back I inherited a patient from another chiro because the

patient was starting college in town and had an open PIP case.

According to the doc's notes patient was getting adjusted dozens of

times at C2-4. The doc never bothered to xray the patient if he had ,

he would have found out that C2-3-4 were congenitally fused.

Felxion/extension studies confirmed it.

I called the DC (in California) and thanked him for the referral and

then very collegially and offhand, told him my findings. He took it

well and hopefully now pays a little more attention to detail nowadays.

>

> Esteemed colleagues,

>

> Can anyone tell my why insurances want to know specifically which

vertebra

> we adjust rather than just which areas?

>

> Larry L. Oliver, DC

> 408 NW 7th

> Corvallis, OR 97330

> dro@...

> voice 541-757-9933

> fax 541-757-7713

>

>

> The information contained in this electronic message may contain

protected

> health information which is confidential under applicable law and is

> intended only for the use of the individual or entity named above.

If the

> recipient of the message is not the intended recipient, you are hereby

> notified that any dissemination, copying or disclosure of this

communication

> is strictly prohibited. If you have received the communication in

error,

> please notify Heresco Chiropractic & Associates, 408 NW 7th St,

Corvallis,

> OR 97330, 541-757-9933 and purge the communication immediately without

> making any copy or distribution

>

[Guest guest]

My child does not have mouth sores and still has - a child

doesn't have to present with everything to be daignosed with . We

have never had a CT scan and he hasn't had high pancreatic levels that

I know of . . .

hope that helps!

Hannah

[Guest guest]

In message <386523.38934.qm@...> you wrote:

> I have been drinking kombucha tea for 6 weeks or so now and I love it, =

> and it has helped me. I have been drinking from 2 - 3 cups (8oz) a day,

> sometimes more on bottling day.

:-) That is just about my story as well, !

You found that the amount you drink at the moment is helpful.

This is a sign that all is well and I should not worry.

Kombucha is NOT a drug, but a superb balancing food whoch helps

different people in different ways.

It is true that some people would tolerate far less Kombucha than you

and I drink, as it does have a strong detoxing effect on the body.

Consumed with a good supply of water any toxins should be expelled

from the body. KT is very good for the liver as it has a cleansing effect

,

and also on your water works :-)

There are always scaremongers in the Kombucha community as there are

different ways of understanding Kombucha and other probiotic, fermented

foods.

I should not worry, but just enjoy the wonderful thing you are consuming.

To your health, !

Margret:-)

--

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

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

http://www.AnswersInGenesis.com

+----------------- http://www.Gotquestions.org ------------------+

Wise men still seek Him

[Guest guest]

In message <386523.38934.qm@...> you wrote:

> I have been drinking kombucha tea for 6 weeks or so now and I love it, =

> and it has helped me. I have been drinking from 2 - 3 cups (8oz) a day,

> sometimes more on bottling day.

:-) That is just about my story as well, !

You found that the amount you drink at the moment is helpful.

This is a sign that all is well and I should not worry.

Kombucha is NOT a drug, but a superb balancing food whoch helps

different people in different ways.

It is true that some people would tolerate far less Kombucha than you

and I drink, as it does have a strong detoxing effect on the body.

Consumed with a good supply of water any toxins should be expelled

from the body. KT is very good for the liver as it has a cleansing effect

,

and also on your water works :-)

There are always scaremongers in the Kombucha community as there are

different ways of understanding Kombucha and other probiotic, fermented

foods.

I should not worry, but just enjoy the wonderful thing you are consuming.

To your health, !

Margret:-)

--

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

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

http://www.AnswersInGenesis.com

+----------------- http://www.Gotquestions.org ------------------+

Wise men still seek Him

[Guest guest]

Kirk,

I had this issue too... I hated the thought of being thought of as a drug

seeker, whiner, you name it...

The patch makes my life a bit more bearable. They come in different

strengths and usually the doc will start with the lowest strength and work

you up depending on what you have been on.

They help me for everything and my doc talks about them in regards to being

more of a necessity instead of an addiction.

I think the best way to approach it is to ask him if he's ever used them.

Tell him you are in constant pain and that your pain meds are not helping.

That you heard from the stills conf (or board) that some stills patients use

them to help have more balanced pain control along with some breakthrough

pain meds, instead of just taking all breakthrough pain meds and shots and

tell him right off the bat that your quality of life is getting worse. Just

be honest with him. See what he says. Ask him if this is something he can

help you with of if it is something you'd have to see a pain med doc for.

Tell him how much time you are in bed, how much time you are in pain, etc.

Tell him you can't be there for your family the way you have been the past

month (whatever the time frame is) and that you are just grasping for straws

for something that might help you enjoy even a few hours a day. He may be

more willing to help then you know. But most of all, remember, it's not an

addiction when you need the drug, it's an addiction, when you seek the drug

just for fun.

Good luck... My appts are far away now too... I dread them, but they are my

lifeline. Hang in there.

-- question

Howdy.....I have to ask a question about the Fetynal?? patch. I had them

when I first got whacked, but that was 3yrs 10 mos ago, and That was before

my back and joint pain (to the degree they are today, at least. The only

constant is the headaches. How do those patches work for joint pain &

such??? I can't have anymore injections into my spine due to osteoporosis,

and my sacriatic ?? joints are killing me.

Second, and I've never had the " touch " or desire for this, how do you go

about asking your Dr. about this when you're already on other pain meds

without sounding like a whiner or (worse yet) a damn drug seeker?

If there is one thing that will turn me violent in a heartbeat (and it

has happened before, on two separate occasions) is for someone to infer that

I'm a drug seeker!!!!! I'd rather be called a piece of sh*t!!!!

(1) Thanks for any info & (2) thanks for any advice.

I also am going nuts now trying to sleep as I have to drive to see my

rheumy tomorrow, which equates to a hair over a 200 mile round trip. my

headache has backed down from 9ish to about a 5-6, but the way these damn

things go that is subject to change without notice, quickly. It has happened

to me 2x on my way home from my RD....and I'm not lying when I state that

you know you're a damn good driver when you can get home while seeing (at

least) 2 of everything......2 lanes (that you're in both) 4 lanes on a 2

lane highway.........the further away from me the more distorted my vision

becomes. The last time it happened I pulled over for about 20 minutes, but

without a damn cell phone was pretty much screwed! I smashed my head off of

my steering wheel a few times and that " helped " enough to get me home. Don't

ask me why ((1) I did it or (2) how it worked) as I have not a clue, except

that on occasion I have found smashing my head off of something solid feels

better than the headache.

I also get to find out just how bad my liver is tomorrow, another thing I

don't want to know. I would rather die happy, as that is inevitable for all

of us and the less I know about when or how it can happen the better, at

least I feel that way. What pisses me off to no end is that I really enjoy

" good " beer, but haven't had but 3-4 since I first got sick.....If I knew my

liver was going to F*** UP I could've drank like a damn fish....well, not

really as I can't afford it, but you can get the inside (and pretty sick)

joke.

Later, Kirk

--

The only things that don't suck in life are the things that should!!!

[Guest guest]

Kirk,

I had this issue too... I hated the thought of being thought of as a drug

seeker, whiner, you name it...

The patch makes my life a bit more bearable. They come in different

strengths and usually the doc will start with the lowest strength and work

you up depending on what you have been on.

They help me for everything and my doc talks about them in regards to being

more of a necessity instead of an addiction.

I think the best way to approach it is to ask him if he's ever used them.

Tell him you are in constant pain and that your pain meds are not helping.

That you heard from the stills conf (or board) that some stills patients use

them to help have more balanced pain control along with some breakthrough

pain meds, instead of just taking all breakthrough pain meds and shots and

tell him right off the bat that your quality of life is getting worse. Just

be honest with him. See what he says. Ask him if this is something he can

help you with of if it is something you'd have to see a pain med doc for.

Tell him how much time you are in bed, how much time you are in pain, etc.

Tell him you can't be there for your family the way you have been the past

month (whatever the time frame is) and that you are just grasping for straws

for something that might help you enjoy even a few hours a day. He may be

more willing to help then you know. But most of all, remember, it's not an

addiction when you need the drug, it's an addiction, when you seek the drug

just for fun.

Good luck... My appts are far away now too... I dread them, but they are my

lifeline. Hang in there.

-- question

Howdy.....I have to ask a question about the Fetynal?? patch. I had them

when I first got whacked, but that was 3yrs 10 mos ago, and That was before

my back and joint pain (to the degree they are today, at least. The only

constant is the headaches. How do those patches work for joint pain &

such??? I can't have anymore injections into my spine due to osteoporosis,

and my sacriatic ?? joints are killing me.

Second, and I've never had the " touch " or desire for this, how do you go

about asking your Dr. about this when you're already on other pain meds

without sounding like a whiner or (worse yet) a damn drug seeker?

If there is one thing that will turn me violent in a heartbeat (and it

has happened before, on two separate occasions) is for someone to infer that

I'm a drug seeker!!!!! I'd rather be called a piece of sh*t!!!!

(1) Thanks for any info & (2) thanks for any advice.

I also am going nuts now trying to sleep as I have to drive to see my

rheumy tomorrow, which equates to a hair over a 200 mile round trip. my

headache has backed down from 9ish to about a 5-6, but the way these damn

things go that is subject to change without notice, quickly. It has happened

to me 2x on my way home from my RD....and I'm not lying when I state that

you know you're a damn good driver when you can get home while seeing (at

least) 2 of everything......2 lanes (that you're in both) 4 lanes on a 2

lane highway.........the further away from me the more distorted my vision

becomes. The last time it happened I pulled over for about 20 minutes, but

without a damn cell phone was pretty much screwed! I smashed my head off of

my steering wheel a few times and that " helped " enough to get me home. Don't

ask me why ((1) I did it or (2) how it worked) as I have not a clue, except

that on occasion I have found smashing my head off of something solid feels

better than the headache.

I also get to find out just how bad my liver is tomorrow, another thing I

don't want to know. I would rather die happy, as that is inevitable for all

of us and the less I know about when or how it can happen the better, at

least I feel that way. What pisses me off to no end is that I really enjoy

" good " beer, but haven't had but 3-4 since I first got sick.....If I knew my

liver was going to F*** UP I could've drank like a damn fish....well, not

really as I can't afford it, but you can get the inside (and pretty sick)

joke.

Later, Kirk

--

The only things that don't suck in life are the things that should!!!

[Guest guest]

Kirk,

I had this issue too... I hated the thought of being thought of as a drug

seeker, whiner, you name it...

The patch makes my life a bit more bearable. They come in different

strengths and usually the doc will start with the lowest strength and work

you up depending on what you have been on.

They help me for everything and my doc talks about them in regards to being

more of a necessity instead of an addiction.

I think the best way to approach it is to ask him if he's ever used them.

Tell him you are in constant pain and that your pain meds are not helping.

That you heard from the stills conf (or board) that some stills patients use

them to help have more balanced pain control along with some breakthrough

pain meds, instead of just taking all breakthrough pain meds and shots and

tell him right off the bat that your quality of life is getting worse. Just

be honest with him. See what he says. Ask him if this is something he can

help you with of if it is something you'd have to see a pain med doc for.

Tell him how much time you are in bed, how much time you are in pain, etc.

Tell him you can't be there for your family the way you have been the past

month (whatever the time frame is) and that you are just grasping for straws

for something that might help you enjoy even a few hours a day. He may be

more willing to help then you know. But most of all, remember, it's not an

addiction when you need the drug, it's an addiction, when you seek the drug

just for fun.

Good luck... My appts are far away now too... I dread them, but they are my

lifeline. Hang in there.

-- question

Howdy.....I have to ask a question about the Fetynal?? patch. I had them

when I first got whacked, but that was 3yrs 10 mos ago, and That was before

my back and joint pain (to the degree they are today, at least. The only

constant is the headaches. How do those patches work for joint pain &

such??? I can't have anymore injections into my spine due to osteoporosis,

and my sacriatic ?? joints are killing me.

Second, and I've never had the " touch " or desire for this, how do you go

about asking your Dr. about this when you're already on other pain meds

without sounding like a whiner or (worse yet) a damn drug seeker?

If there is one thing that will turn me violent in a heartbeat (and it

has happened before, on two separate occasions) is for someone to infer that

I'm a drug seeker!!!!! I'd rather be called a piece of sh*t!!!!

(1) Thanks for any info & (2) thanks for any advice.

I also am going nuts now trying to sleep as I have to drive to see my

rheumy tomorrow, which equates to a hair over a 200 mile round trip. my

headache has backed down from 9ish to about a 5-6, but the way these damn

things go that is subject to change without notice, quickly. It has happened

to me 2x on my way home from my RD....and I'm not lying when I state that

you know you're a damn good driver when you can get home while seeing (at

least) 2 of everything......2 lanes (that you're in both) 4 lanes on a 2

lane highway.........the further away from me the more distorted my vision

becomes. The last time it happened I pulled over for about 20 minutes, but

without a damn cell phone was pretty much screwed! I smashed my head off of

my steering wheel a few times and that " helped " enough to get me home. Don't

ask me why ((1) I did it or (2) how it worked) as I have not a clue, except

that on occasion I have found smashing my head off of something solid feels

better than the headache.

I also get to find out just how bad my liver is tomorrow, another thing I

don't want to know. I would rather die happy, as that is inevitable for all

of us and the less I know about when or how it can happen the better, at

least I feel that way. What pisses me off to no end is that I really enjoy

" good " beer, but haven't had but 3-4 since I first got sick.....If I knew my

liver was going to F*** UP I could've drank like a damn fish....well, not

really as I can't afford it, but you can get the inside (and pretty sick)

joke.

Later, Kirk

--

The only things that don't suck in life are the things that should!!!