My Intro

[Guest guest]

Welcome all new parents!

Amy,

The clinical symptoms do seem very familiar to us and the group (gastro,

allergies, asthma). I hope that the test results enable you to get answers and

proper treatment. My daughter was classified as CVID, after a history of

infections/gastro nightmares/thrush, etc. and has been getting treated for

almost two years. She is so much better now -- a really special and now

thriving kid!

Welcome,

mom to CVIDer

[Guest guest]

In a message dated 4/24/2006 8:17:31 AM Pacific Daylight Time,

amycaraballo@... writes:

Thanks for letting me join even though we don't have an official

diagnosis yet!

Hi Amy C--

Welcome. Let me congratulate you for pushing forward to see if there is a

definitive diagnosis!! My son's former Ped told me that he had a PID, but

there was nothing they could treat with. He was wrong. My son is now treated

with IVIG and until recently has been doing great!!

Just jump right in and feel free to ask any questions you wish.

Sandi, Mom to --age 13--CVID

[Guest guest]

Hi Amy!

Meg

>

> Hi! Mom to a 6 year old with a multitude of health issues (see my

> signature). I was referred here by a couple of great gals from an

Asthma

> list. We've been trying to figure out why our son is just

chronically

> sick. I've had many docs say...that's " just how it is " when they

are in

> preschool/school etc. But it's not. Most kids do not have chronic

sinus

> infections, chronic thrush, and a whole schlew of things that

scream

> Immune system problems.

>

> He just had some labs drawn last Thursday for CBC w/diff, and IgA,

IgG,

> IgM, and IgE and some extra serum to hold onto I guess in case

those

> come back abnormal. Hope to have more info by next week.

>

> Thanks for letting me join even though we don't have an official

> diagnosis yet!

>

> --

> Amy C.

> Mom to Sebastian, 6 years - Asperger Syndrome, Asthma,

Gastroparesis, GERD and Allergies

>

> Blow the Whistle on Asthma Walk - May 20, 2006

> http://tinyurl.com/h5ycl

>

> Read Navigating the Special Education system at

> http://special-education-usa.blogspot.com/

>

> Join PA Parents Advocacy Group

> pa-special-education-advocacy/join

>

> Did you know that YOU are probably a Gaskin Class Action member?

> http://journals.aol.com/lstengle/GaskinClassMember/

>

[Guest guest]

Hi Amy,

Welcome to the group I just joined this group a few years ago and

also have a son (actually 2 sons) with health issues and are in the

process of diagnosing possible immunity issues in both.

Also I was referred to this board by a few people from the Asthma

board.

This support group is great and you should get a lot of good

information also.

--Sange

Holly 5.9yo-healthy!; Randy 4.5yo-asthma, globally

delayed, mild-mod hearing loss, possible muscle issues & possible

immunity issues; Peyton 19mos-asthma, dysphagia, GERD, possible

immunity issues

>

> Hi! Mom to a 6 year old with a multitude of health issues (see my

> signature). I was referred here by a couple of great gals from an

Asthma

> list. We've been trying to figure out why our son is just

chronically

> sick. I've had many docs say...that's " just how it is " when they

are in

> preschool/school etc. But it's not. Most kids do not have chronic

sinus

> infections, chronic thrush, and a whole schlew of things that

scream

> Immune system problems.

>

> He just had some labs drawn last Thursday for CBC w/diff, and IgA,

IgG,

> IgM, and IgE and some extra serum to hold onto I guess in case

those

> come back abnormal. Hope to have more info by next week.

>

> Thanks for letting me join even though we don't have an official

> diagnosis yet!

>

> --

> Amy C.

> Mom to Sebastian, 6 years - Asperger Syndrome, Asthma,

Gastroparesis, GERD and Allergies

>

> Blow the Whistle on Asthma Walk - May 20, 2006

> http://tinyurl.com/h5ycl

>

> Read Navigating the Special Education system at

> http://special-education-usa.blogspot.com/

>

> Join PA Parents Advocacy Group

> pa-special-education-advocacy/join

>

> Did you know that YOU are probably a Gaskin Class Action member?

> http://journals.aol.com/lstengle/GaskinClassMember/

>

[Guest guest]

Hi - It is nice to meet you. Do you know what caused your CHF? You are similar to me. I am 54 Ejection Fraction of 25%. I also have an enlarged heart. No too enlarged...I was told. I had kidney cancer in 200l. Removed kidney...removed cancer. Hopefully. I had an ECD implanted two months. ago. No problems so far expect I have a lot of PVC's I have a history of afib. I am a mess on paper and off....but I keep going. I tried anti-anxiety/depression pills, but they gave me strange and disturbing dreams. I see a counselor to get me through bad times. Keep in touch..DarleneKathy <kkey22850@...> wrote: I had a ICD implanted Thursday, May 25. I am feeling great and that makes not picking up stuff and not driving

difficult. Over the counter Tylenol seems to take care of the discomfort at this point.I had CHF in the late 80s, have a blocked left bundle branch, "throw" many PVCs, have an enlarged heart and an efraction rate of 16%. I'm 56.I am facing surgery in about 8 weeks to repair a large hernia and have a kidney biopsy. I'm really better in person than on paper. I sound like such a mess right now <smile>.It's a bit amazing to me how little I know about this device in my chest and continue to browse and search the internet for more info. I look forward to using this site to keep learning what to expect and what to do. Kathy

[Guest guest]

Welcome! I'm Leah. I have an ICD. I had one every since 2001. Now I am 26. Had one since I was 21 years old. I never been shock before. Take Care Hugs, LeahDarlene El Tohamy <darljl2002@...> wrote: Hi - It is nice to meet you. Do you know what caused your CHF? You are similar to me. I am 54 Ejection Fraction of 25%. I also have an enlarged heart. No too enlarged...I was told. I had kidney cancer in 200l. Removed kidney...removed cancer. Hopefully. I had an ECD implanted two months. ago. No problems so far expect I have a lot of PVC's I have a history of afib. I am a mess on paper and off....but I keep going. I tried anti-anxiety/depression

pills, but they gave me strange and disturbing dreams. I see a counselor to get me through bad times. Keep in touch..DarleneKathy <kkey22850@...> wrote: I had a ICD implanted Thursday, May 25. I am feeling great and that makes not picking up stuff and not driving difficult. Over the counter Tylenol seems to take care of the discomfort at this point.I had CHF in the late 80s, have a blocked left bundle branch, "throw" many PVCs, have an enlarged heart and an efraction rate of 16%. I'm 56.I am facing surgery in about 8 weeks to repair a large hernia and have a kidney biopsy. I'm really better in person than on paper. I sound like such a mess right now <smile>.It's a bit amazing to me how little I know about this device in my chest and continue to browse and search

the internet for more info. I look forward to using this site to keep learning what to expect and what to do. Kathy

[Guest guest]

Thanks Darlene - When I had the CHF they said they couldn't find a

reason for it. I was/am overweight but they said that should not have

caused it by itself. I have Berger Disease - so they think thus the

kidney biopsy to confirm the diagnosis. I found out about the ICD when

I went for a surgery clearance for the hernia surgery and the kidney

problem all within 24 hours...it was a rough week.

Still all in all I feel better than I have in months. I actually walked

further today without being out of breath than I've been able to do

since Thanksgiving. I was blaming the hernia and the pressure it was

putting on my heart and lungs...hmm perhaps that wasn't the real

problem. So much for my " Walmart medical degree. "

Kathy

>

> Hi - It is nice to meet you. Do you know what caused your CHF? You

are similar to me. I am 54 Ejection Fraction of 25%. I also have an

enlarged heart. No too enlarged...I was told. I had kidney cancer in

200l. Removed kidney...removed cancer. Hopefully. I had an ECD

implanted two months. ago. No problems so far expect I have a lot of

PVC's I have a history of afib. I am a mess on paper and off....but I

keep going. I tried anti-anxiety/depression pills, but they gave me

strange and disturbing dreams. I see a counselor to get me through

bad times. Keep in touch..Darlene

[Guest guest]

Thanks for the hugs Leah...they are always welcomed :>)

>

> Welcome!

> I'm Leah. I have an ICD. I had one every since 2001. Now I am

26. Had one since I was 21 years old. I never been shock before. Take

Care

> Hugs,

> Leah

>

[Guest guest]

Brenna

Welcome to this great LL group

Breathe 40 today

Blessings

R

My Intro

I am new to the group. My name is Brenna, married with 3 kids.

Actually still planning on losing all post-partum weight. I have not

yet purchased dvds, I plan on it though when I get the chance. I have

read a lot about other oxygen-exercise and finally decided on LifeLift

because I need more GENTLER exercise.

If anyone can tell me more about their expereience with LifeLift I

would appreciate it.

Brenna

------------------------------------------------------------------------------

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.1.408 / Virus Database: 268.13.4/476 - Release Date: 10/14/2006

[Guest guest]

Hello Brenna,

Welcome to LifeLift. It is wonderful to have you here with all of us.

I have been out all day, but it was great when I saw that you had taken the time

to write.

I know a lot of our regular LifeLifter's are really busy right now, but I am

sure that like our sweet that they will pop in when they have a minute to

welcome you.

Meanwhile you may want to take some time to read some of the past messages

posted to the list. They will inspire you.

Be Healthy and take good care,

Rashelle

Harness the Powerful Benefits of Oxygen with LifeLift.

Oxygen burns fat, tones muscles, reduces stress

Be healthier with each breath you take with LifeLift

www.oxygenlift.net. LifeLift is the Original Aerobic Breathing

My Intro

I am new to the group. My name is Brenna, married with 3 kids.

Actually still planning on losing all post-partum weight. I have not

yet purchased dvds, I plan on it though when I get the chance. I have

read a lot about other oxygen-exercise and finally decided on LifeLift

because I need more GENTLER exercise.

If anyone can tell me more about their expereience with LifeLift I

would appreciate it.

Brenna

[Guest guest]

Hi Brenna,

Welcome to our Life Lift group. My name is Pat. We are all so glad

that you are here, and so very happy to meet you!!! I started my Life

Lift program back in February of last year. After only 2 weeks of doing

this wonderful Life Lift breathing, I had lost 8 inches in my waistline,

a real feat that was totally incredible. To date, I have lost 10 inches

in my waistline and more than 15 lbs., maybe over 30 by now. I don't

weigh or measure myself because of the nervousness and anxiety that

doing so causes me. Instead, I try on my old " fat " clothes every so

often--clothes for which I had gotten too big to wear, and guage my

weight from the way those clothes fit me now. Most of them are hanging

on me, so I know that I have lost A LOT OF WEIGHT thus far.

Well, Brenna, I have to stop typing for now, but will be back to you

some time in the future. Once again, welcome to our wonderful Life Lift

group. I know that you will love all of us, as we all love you

already!!! The best of luck to you in your Life Lift breathing

program. I know that you will love it, as I do, and I wish you as much

success with it as I have had. I am going to stay on Life Lift for the

rest of my life, and hope and pray that you will decide to make Life

Lift a regular and vital part of your own life, too!!!

Love always,

Pat

Rettig wrote:

> Brenna

> Welcome to this great LL group

>

> Breathe 40 today

>

> Blessings

> R

> My Intro

>

>

> I am new to the group. My name is Brenna, married with 3 kids.

> Actually still planning on losing all post-partum weight. I have not

> yet purchased dvds, I plan on it though when I get the chance. I have

> read a lot about other oxygen-exercise and finally decided on LifeLift

> because I need more GENTLER exercise.

>

> If anyone can tell me more about their expereience with LifeLift I

> would appreciate it.

>

> Brenna

>

>

>

>

>

>

> ------------------------------------------------------------------------------

>

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.408 / Virus Database: 268.13.4/476 - Release Date: 10/14/2006

>

>

>

[Guest guest]

SWEET RASHELLE

THINK THIS IS ALL BECAUSE OF YOU!!

BLESSINGS MY FRIEND

DIANA R

My Intro

I am new to the group. My name is Brenna, married with 3 kids.

Actually still planning on losing all post-partum weight. I have not

yet purchased dvds, I plan on it though when I get the chance. I have

read a lot about other oxygen-exercise and finally decided on LifeLift

because I need more GENTLER exercise.

If anyone can tell me more about their expereience with LifeLift I

would appreciate it.

Brenna

[Guest guest]

Hi Jen, Welcome to the group! How old is the child that you care for? My 9 year old loves bowling and is going to have a bowling party next month.

Kathy

my intro

Hello All I just joined and am glad to be here and excited also I am not a parent of a child with DS but I do respite care and do watch a child with DS. I joined to get some more info and become better aquainted with DS.

Friday night I took my respite child bowling and he had a blast. Mom said she didnt know how it would go because he had never been bowling before but he was a riot we had lots of fun

So please bare with me becuase this is new to me as well as this group. Just wanted to say HI to all and thanks for letting me join

Jen

[Guest guest]

Welcome to the list. Feel free to ask any questions!

Qadoshyah

*Got Down Syndrome?

www.gotdownsyndrome.net http://gotdownsyndrome.blogspot.com

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of BockSent: Monday, April 02, 2007 11:15 AMDown Syndrome Treatment Subject: my intro

Hello All I just joined and am glad to be here and excited also I am not a parent of a child with DS but I do respite care and do watch a child with DS. I joined to get some more info and become better aquainted with DS.

Friday night I took my respite child bowling and he had a blast. Mom said she didnt know how it would go because he had never been bowling before but he was a riot we had lots of fun

So please bare with me becuase this is new to me as well as this group. Just wanted to say HI to all and thanks for letting me join

Jen

[Guest guest]

Welcome to our group . Glad to have you here. :-)

My also loves to bowl! She and her little girl friend go every Weds night. It's such a hoot cause they are pretty tiny and at first they could barely hold the ball much less throw it! LOL I lived in fear of her TOES. <g>

They kind of throw that ball, not sling it and it really hits the floor with a THUD- I wonder what those floors are made of to handle that kind of abuse???? Anyway, they are improving as time goes by and at the very least, it's making their arms and hands stronger and it's just plain fun. :-)

They will not let us help them though.... they have to do it 'self' ;-)

Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

Down Syndrome Treatment/

Listen to oldest dd's music http://www.myspace.com/vennamusic

my intro

Hello All I just joined and am glad to be here and excited also I am not a parent of a child with DS but I do respite care and do watch a child with DS. I joined to get some more info and become better aquainted with DS.

Friday night I took my respite child bowling and he had a blast. Mom said she didnt know how it would go because he had never been bowling before but he was a riot we had lots of fun

So please bare with me becuase this is new to me as well as this group. Just wanted to say HI to all and thanks for letting me join

Jen

Finding fabulous fares is fun.Let FareChase search your favorite travel sites to find flight and hotel bargains.

[Guest guest]

Little Ayden pushed the ball down the alley. He helped carry it was cute he put his finger in one hole the one time like he was carrying it . He is such a great kid has a great family also his older brother came bowling with us and I think had a good time also

Jen

On 4/2/07, Carol in IL <ps1272000@...> wrote:

Welcome to our group . Glad to have you here. :-)

My also loves to bowl! She and her little girl friend go every Weds night. It's such a hoot cause they are pretty tiny and at first they could barely hold the ball much less throw it! LOL I lived in fear of her TOES. <g>

They kind of throw that ball, not sling it and it really hits the floor with a THUD- I wonder what those floors are made of to handle that kind of abuse???? Anyway, they are improving as time goes by and at the very least, it's making their arms and hands stronger and it's just plain fun. :-)

They will not let us help them though.... they have to do it 'self' ;-)

Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

Down Syndrome Treatment/

Listen to oldest dd's music http://www.myspace.com/vennamusic

my intro

Hello All I just joined and am glad to be here and excited also I am not a parent of a child with DS but I do respite care and do watch a child with DS. I joined to get some more info and become better aquainted with DS.

Friday night I took my respite child bowling and he had a blast. Mom said she didnt know how it would go because he had never been bowling before but he was a riot we had lots of fun

So please bare with me becuase this is new to me as well as this group. Just wanted to say HI to all and thanks for letting me join

Jen

Finding fabulous fares is fun.

Let FareChase search your favorite travel sites to find flight and hotel bargains.

[Guest guest]

I am glad you have very serious concerns about getting radiation to

your abdomen because it sounds to me as if radiation enteritis could

result from such a procedure, as well as scarring of your stomach

muscles, meaning you end up with hook-like projections on those

muscles where your intestines can catch and twist, causing high

fever, terrible pain and vomiting. The only two possibilities when

that happens are to lie quietly in bed for a day or two, hoping the

twisted intestine will untwist itself, or to undergo an operation to

untwist the intestine, the result of which is more scarring of the

abdominal muscles, increasing the chance of another such incident

occurring. Furthermore, during such an operation, there is a chance

of perforating the intestine.

So it sounds like a very sensible choice on your part to avoid, if at

all possible, the kind of radiation the doctors are talking about.

Keep trusting in the Lord and in yourself, smart lady!

Elliot

---

[Guest guest]

Hi,

What type of cancer were you diagnosed with? Do you have any lymphedema from

having lymph nodes removed. Kay

From: ^^Ocilady^^

I joined this list to learn what alternative or natural things yall are using to

help prevent further cancer growth. I'm 47, Dh and I have been leaning towards

natural remedies for many many years now, we avoid prescription drugs except for

a temporary emergency situations, we rely on herbs and other natural methods

of dealing with health problems. I'm just 2 weeks past rad. hysterectomy

surgery, (still in stitches) done to

remove cancer, they removed 16 lymh nodes (during surgery) and 2 of them had

cancer.

My oncologist wants me to undergo radiation (every day 5 days a week, for 5

weeks, thats 40 treatments) to my entire abdomin because the cancer was found in

2 nodes, that may, could, maybe might get into my blood stream. Since there is

no known cancer to target they want to just beam it onto my entire abdomin, even

though to the best of her

knowledge they removed all the cancer. Or at least that's what they told me to

try and scare me into getting the radiation treatments.

Sounds quacky to me!

Chemo or Radiation are not an option for me, and I'll bet the dr would not do

it herself.

I think they have some excess radiation they need to dispose of, and they

would like to use my body to do it.

Now I must go take a shower and scrub the word Stupid off my forehead.

^._.^Oci^^lady in So. Nevada^._.^Romans 10:13

[Guest guest]

That sounds pretty awful, Think I'll pass on it.

So far they only downplayed the symptoms associated with getting radiated,

like the nausia & vomiting with no mention of other, more seroius

consequences.

I was told it should not be that difficult for someone as young as me and

how

many 60 year olds get through it just fine.

Thank You Elliot, I will definately be trusting in the Lord to give me

wisdom in

these matters, because my dr's sure don't seem to have any.

^._.^Oci^^lady in So. Nevada^._.^Romans 10:13

[Guest guest]

Hi Kay

Good questions, I'm still not sure, the first lab thought it was uterine, it

may be cervical,

I still have not been told which one it was. Um Maybe, these are things

that have not been

mentioned to me until now. I have been super swollen from my chest down,

and am just getting to where I can wear some loose jeans (rather than the

pajamas &

sweat pants) that I have been wearing. My oncologist left on vacation a day

or two

after my surgery (7/7/07) & she is not back yet. I have only been able to

see her assistant

so far, who is already pushing for me to get radiation.

My mother just had colon cancer removed (in June) and I have learned much

about

things I should have been told by my dr's from her. Feeling like we were not

given the

test results and answers that should have been standard procedure.

I don't have any # or test results, I believe there is a blood test they

could do to check

if it is in my blood, don't know if they ran the test or not and have not

been given any results.

We feel they have done the part they could by removing the cancer, now all

they have to offer

me is radiation. No matter what the test results might be, we will deal

with it naturally.

At this point we are taking it into our own hands, and praying for the good

Lords guidance in

helping us prevent any recurrance.

I will be around as long as God wants me here, my life is in his hands and

always has been.

Trusting in Jesus,

lady in So. Nevada^._.^Romans 10:13

----- Original Message -----

From: " glange "

Hi,

What type of cancer were you diagnosed with? Do you have any lymphedema > from

having lymph nodes removed. Kay

[Guest guest]

The plain fact is that photon radiation, which is the regular radiation

it sounds like they plan to use, hits everything in and around its

path, and it passes into the body, into the tumor, out the tumor, into

the rest of the body and out of the body. It cannot help but bombard

your intestines.

Ask them if you can speak to maybe a half-dozen of those 60 year olds

they say got through it just fine. They of course won't let you, due to

the Hippa Laws.

It's a real crock---it's outrageous---for them to tell you plenty of 60

year-olds are breezing through radiation to the abdomen.

Elliot

[Guest guest]

Elliot wrote:

> It's a real crock---it's outrageous---for them to tell you plenty of 60

year-olds are breezing through radiation to the abdomen.

>

I was wondering about that, it seemed wierd for them to offer to let me

talk to other patients about their experiences.

At this point I'm just trying to get through the damage/swelling & side

effects from surgery and return to feeling decent, then I'm done with these

dr's, I don't intend to keep supporting them.

I don't trust them as far as I can pick them up & throw them!

And these are supposed to be some of the best in this area.

^._.^Oci^^lady in So. Nevada^._.^Romans 10:13

[Guest guest]

I am not trying to tell anyone what to do but my guess for myself is that the

radiation would possibly scar the intestines to the point of not being able to

ever absorb all the nutrients again. And then, how could one possibly get well?

It doesnt matter what or how much you eat, what matters is how much of what you

eat is absorbed! If the intestines become scarred how on earth can they work

properly. Look at scar tissues, the Gerson therapy( very very intense) is the

only therapy that I know of that can get rid of scar tissue but again, if the

most important organ in the body is damaged, how can one absorb nutrients to

break down and dissolve scar tissue.Up creek without a paddle I would guess. I

am just speaking for myself. I dont know what would be right in your case but

you mite at least think about what I just said. And if the intestines are burned

to the point of being scared, then think about the other organs! Just my

thoughts....Kay

[Guest guest]

Speaking of radiation, I had pelvic rads 25 yrs ago when the radiation

itself was much higher in dosage and not very precise. I had colon cancer, and

yes the rads damaged my skin and scarred my colon. The radiation killed the

tumor and all the surrounding microscopic cancer cells (something surgery alone

Cannot do). Radiation treatment nowadays is MUCH better than what I went thru.

I wouldn't call it a breeze tho, but it's doable without whining. I have some

residual problems from the treatment, but so what?? At least I'm still alive to

even have residual problems! Once cancer has metastisized to other organs,

it's too Late for anything else but palliative treatment. Consider your course

carefully and get

All the Information you can before making a decision. I don't trust docs any

more than You do but the key is to educate yourself (in depth!!!). Don't rely

only on what one Doctor tells you. Patients are just numbers now so you gotta

be your own advocate.

Good luck,

~Amber

[Guest guest]

,

You may wish to consider joining the FlaxseedOil2 group on as well

as this list. We are having weekly testimonies right now of

people who are having tumor growth go down by leaps and bounds, as well as

cancer markers. Many of us are experiencing NO cancer symptoms at all - and

most of us are enjoying ruddy good health. <smile> It is a fairly easy

protocol, and costs less and is more satisfying than most of the protocols.

And yet it is incredibly effective.

Tina in the boonies of Kentucky

I joined this list to learn what alternative or natural things yall are

using to help prevent further cancer growth. I'm 47, Dh and I have been

leaning towards natural remedies for many many years now, we avoid

prescription drugs except for a temporary emergency situations, we rely on

herbs and other natural methods

of dealing with health problems. I'm just 2 weeks past rad. hysterectomy

surgery, (still in stitches) done to

remove cancer, they removed 16 lymh nodes (during surgery) and 2 of them had

cancer.

My oncologist wants me to undergo radiation (every day 5 days a week, for 5

weeks, thats 40 treatments) to my entire abdomin because the cancer was

found in 2 nodes, that may, could, maybe might get into my blood stream.

Since there is no known cancer to target they want to just beam it onto my

entire abdomin, even though to the best of her

knowledge they removed all the cancer. Or at least that's what they told me

to try and scare me into getting the radiation treatments.

Sounds quacky to me!

Chemo or Radiation are not an option for me, and I'll bet the dr would not

do it herself.

I think they have some excess radiation they need to dispose of, and they

would like to use my body to do it.

Now I must go take a shower and scrub the word Stupid off my forehead.

^._.^Oci^^lady in So. Nevada^._.^Romans 10:13

_