hello!

[Guest guest]

OH! Just wait till you here.. " Oh! I have that too! " LOL! If you

haven't already.

It's normal to be scared. Stick with us. You'll be okay. I look forward

to reading your posts.

Welcome to the club(group) Rhiannon

One of these days you and your doctor will come up with a great working

cocktail.

In the meantime, I'm wishing you lesser pain days.

Michigan

[Guest guest]

hi lesli

i could answer some questions for you i actually dont mind

crystal z

________________________________

From: leslie.dwyer <leslie.dwyer@...>

Sent: Thu, January 21, 2010 1:17:17 PM

Subject: Hello!

 

I am studying to be Pharmacy Technincian in Florida at Rasmussen College. I am

using the internet to do research and cam across this study blog. What a great

idea. I need to interview a pharmacy technician for my final project and was

wondering if anyone from the study group is already licensed and would like to

answer a few questions for me?

Thanks-

[Guest guest]

Hello Rhiannon,

RA is a tough one to learn how to deal with, isn't it?  I am 48 and was

diagnosed just over a year ago and I am still learning too.  I think it

probably would have been even harder if this had happened in my twenties.  I

could not comprehend at first that there was not an easy cure for this - there

are no one size fits all treatments.  I hope that your dr finds the one that

will give you some relief from the pain & fatigue.  My symptoms are controlled

pretty well most of the time but RA has restricted me and if I push myself too

hard or try to do too much I am in for a world of hurt.  I have bad days too

when RA doesn't just restrict me, it defines me.

I empathize with you about the comments that others make.  People in general

are very ignorant about RA.  I

hear the same things all the time too.  If I just wanted attention I can think

of a million ways to get it that don't involve being in pain and seriously

ill.  I have been giving this matter a lot of thought recently.  I wonder why

I have never seen a public service awareness ad about RA in the media.  I think

that the only exposure a lot of people have to RA are the pharmaceutical

commercials showing people happily gardening.  To make matters worse, osteo

arthritis is everywhere and most people have it themselves and can't

differentiate between the two.

This is a good place to rant.  Hope you feel better soon.

~Connie

From: rhionnon555 <rhionnon555@...>

Subject: [ ] hello!

To:

Date: Thursday, January 21, 2010, 2:04 PM

 

Hello all!

My name is Rhiannon.I am 27.

I have just (in November 09) been diagnosed with RA.

I'm still learning how to deal with it. I've been having symptoms since April

09, but I guess I was hoping they would just disappear. no luck.

I'm on medication, which has really helped with morning stiffness, but i'm still

in pain. I am also extremely tired all the time. does any of this get better?

will I always be in pain?

I'm a little scared about what the future holds for me.

I just finished training to become a phelbotomist, and now I'm worried that i

won't be able to do it!

I have a hard time doing the things i used to love - draw, paint, yoga, knit,

embroider, cook - and it's really frustrating.

To make it worse, no one seems to believe me when I tell them I have RA. I'm

" too young " or " don't look sick " or " just want attention " .

anyway, sorry to get ranty. I wanted to say hi to everyone and if anyone has

tips, please drop me a line.

[Guest guest]

Ditto!

Jeanetta

, PLEASE Email the techs separately and privately!

Let me know if you can not see their private email addys. It that is the case,

I will email you the email addresses of those who respond on post that they are

available.

Thanks Jeanetta.

>

> hi lesli

>

> i could answer some questions for you i actually dont mind

>

> crystal z

>

>

>

>

> ________________________________

> From: leslie.dwyer <leslie.dwyer@...>

>

> Sent: Thu, January 21, 2010 1:17:17 PM

> Subject: Hello!

>

>  

> I am studying to be Pharmacy Technincian in Florida at Rasmussen College. I am

using the internet to do research and cam across this study blog. What a great

idea. I need to interview a pharmacy technician for my final project and was

wondering if anyone from the study group is already licensed and would like to

answer a few questions for me?

>

> Thanks-

>

>

>

>

>

>

>

>

>

[Guest guest]

do you have any side effects from that prednisone? weight gain??? just curious.

thanks

Stacey

Hello!

I'm so excited to find this group! I've been reading and reading. Here's the short version of my story:I've had three nasal polyp surgeries. The first one in Summer 1998, second February 2000, and third October 2009. Currently I'm taking Singulair, Nasonex, Zytec, and 5 mg prednisone every-other day. This kept the polyps manageable for almost 10 years between surgery 2 and 3. Now I've had to switch insurance companies and am still very upset at having to leave my ENT who I loved. I'm fighting with new GP and ENT to prescribe the 5 mg prednisone every-other-day!!!! Seems like the track record should speak for itself! The ENT today suggested I go to a rheumatologist to see if there were different anti-inflammatories that might work since I have Samter's. Well, the rheumatologist's office thought that idea was about as crazy as I did! HELP! Should I go to yet another ENT? Does anyone have an article promoting alternate day treatments of steroids? Some of what I read today led me to believe that perhaps Zyflo might work better than the Singular/Prednisone combo. Any thoughts on that? I do regular physicals and monitor bone density so I cannot figure out why they are so worried about low dose/alternate day treatment. Any advice would be greatly appreciated!

[Guest guest]

I’ve gained weight when I’ve been on prednisone for longer than

a week, the longer I’m on it the weight just seems to add on. My main problem

is that I get VERY hungry when taking it and just have to eat, trying to not

eat makes me feel ill so I try my best to eat healthy things.

The weight goes after you stop it but not overnight.

I’ve come to a stage where the weight gain doesn’t bother me

because without the prednisone I’d be in a lot of trouble.

From: & Stacey

Sutela [mailto:sutela@...]

Sent: Wednesday, 14 July 2010 9:24 AM

samters

Subject: Re: Hello!

do you have

any side effects from that prednisone? weight gain??? just curious.

thanks

Stacey

-----

Original Message -----

From: mailfromsusanw

samters

Sent: Tuesday, July 13,

2010 4:14 PM

Subject: Hello!

I'm so excited to find this group! I've been

reading and reading. Here's the short version of my story:

I've had three nasal polyp surgeries. The first one in Summer 1998, second

February 2000, and third October 2009. Currently I'm taking Singulair, Nasonex,

Zytec, and 5 mg prednisone every-other day. This kept the polyps manageable for

almost 10 years between surgery 2 and 3. Now I've had to switch insurance companies

and am still very upset at having to leave my ENT who I loved. I'm fighting

with new GP and ENT to prescribe the 5 mg prednisone every-other-day!!!! Seems

like the track record should speak for itself! The ENT today suggested I go to

a rheumatologist to see if there were different anti-inflammatories that might

work since I have Samter's. Well, the rheumatologist's office thought that idea

was about as crazy as I did! HELP! Should I go to yet another ENT? Does anyone

have an article promoting alternate day treatments of steroids? Some of what I

read today led me to believe that perhaps Zyflo might work better than the

Singular/Prednisone combo. Any thoughts on that? I do regular physicals and

monitor bone density so I cannot figure out why they are so worried about low

dose/alternate day treatment. Any advice would be greatly appreciated!

[Guest guest]

Jessie and ,You asked about weight gain with prednisone . . . that only happens to me when I do a burst of 60 mgs a day and begin the taper down from there. I am starved for carbs while doing the high doses. The 5 mg every-other-day doesn’t make me hungrier or make me gain weight but only keep the polyps at bay. That’s why I’m so frustrated with the doctors giving me a hard time. Goodness after an almost 10 year period between two surgeries, I wish they’d listen. From what I read, that’s a good number of years between surgeries.

[Guest guest]

, My

polyp situation is not great. My doctor will put me on a 2 week (40mg then

tamper), but the SOSmell leave 1 ½ weeks after stop the prednisone. This

is the 3rd time in 3 months. Does the once every other day work fro

SOS, and Do you have to see an endocrinologist?

Have a Great Day!

Steve man

www.easyreferralmarketing.com

Send a Greeting Card on us for FREE!

Snail Mail Greeting Cards

for only $2.99 (include postage) (click here)

Jessie and ,

You asked about weight gain with prednisone . . . that only happens to

me when I do a burst of 60 mgs a day and begin the taper down from there.

I am starved for carbs while doing the high doses. The 5 mg every-other-day

doesn’t make me hungrier or make me gain weight but only keep the polyps

at bay. That’s why I’m so frustrated with the doctors giving

me a hard time. Goodness after an almost 10 year period between two

surgeries, I wish they’d listen. From what I read, that’s a

good number of years between surgeries.

[Guest guest]

,Since my surgery in Oct 2009, I had my SOS. I didn’t have it for quite a while before surgery because the polyps had gotten bad. I really believe the 5 mg prednisone every other day help with the whole deal—polyps, SOS, no infections. I have always only seen the ENT to have medication monitored. Now that my work made me change insurance I can no longer see him and am getting very frustrated! I will call the new ENT back today to let them know the rheumatologist’s office thought it would not be appropriate for me to go there. I hope I can see another ENT in the practice who has some experience with samter’s or even polyps and get more help.

[Guest guest]

Hello ,

Long-term low-dose alternate-day prednisone is not considered dangerous, so

there is a chance that you might be able to convince a doctor to try it. Have

you tried irrigating twice daily with lukewarm saline, and then draining by

gravity (bend over forward face parallel to ground for 5 good minutes to clear

all the goo) ?

>

> ,

>

> Since my surgery in Oct 2009, I had my SOS. I didn't have it for quite a

> while before surgery because the polyps had gotten bad. I really believe

> the 5 mg prednisone every other day help with the whole deal-polyps, SOS, no

> infections. I have always only seen the ENT to have medication monitored.

> Now that my work made me change insurance I can no longer see him and am

> getting very frustrated! I will call the new ENT back today to let them

> know the rheumatologist's office thought it would not be appropriate for me

> to go there. I hope I can see another ENT in the practice who has some

> experience with samter's or even polyps and get more help.

>

[Guest guest]

This is interesting ‘every other day’ prednisone has

never been suggested to me but it’s something I’m going to talk to

my GP about now. It’s such a small dose it really shouldn’t have

too much of an adverse affect long term. I was once told by my GP that the body

makes 5 mg daily so this amount seems very minimal particularly, more so if

the SOS returns.

My partner has just been put on 50 mg daily for another problem

until he can see a specialist in September. The pharmacist here said it was too

long to stay on it and suggested going cold turkey after two weeks. After

many years of being on and off prednisone I’ve told him this could be dangerous

and to speak to his GP before doing this.

Whilst the pharmacist may have been trying to be helpful, this

really concerned me as he would have done this without a second thought and at

65 who knows how this could have affected him.

From: asfy

[mailto:asfyso@...]

Sent: Monday, 19 July 2010 8:01 AM

samters

Subject: Re: Hello!

Hello ,

Long-term low-dose alternate-day prednisone is not considered dangerous, so

there is a chance that you might be able to convince a doctor to try it. Have

you tried irrigating twice daily with lukewarm saline, and then draining by

gravity (bend over forward face parallel to ground for 5 good minutes to clear

all the goo) ?

>

> ,

>

> Since my surgery in Oct 2009, I had my SOS. I didn't have it for quite a

> while before surgery because the polyps had gotten bad. I really believe

> the 5 mg prednisone every other day help with the whole deal-polyps, SOS,

no

> infections. I have always only seen the ENT to have medication monitored.

> Now that my work made me change insurance I can no longer see him and am

> getting very frustrated! I will call the new ENT back today to let them

> know the rheumatologist's office thought it would not be appropriate for

me

> to go there. I hope I can see another ENT in the practice who has some

> experience with samter's or even polyps and get more help.

>

[Guest guest]

Welcome, Kate! Many of us here did the same thing as you with vaccinating our children at the beginning. You are smart to listen to that voice inside of you questioning vaccine risks.

The flip side is to question their effectiveness and if taking the risk is even necessary. Once you do your research on that, you will find that it is highly debatable whether vaccines work at all. Certainly the manufacturers don't guarantee they will work at all, let alone for any length of time.

As far as the measles goes, there are outbreaks of diseases all the time. That doesn't make vaccines work. In fact, many if not most outbreaks happen in vaccinated people. Best not to join that club!

The most serious health problems children encounter these days are from vaccine injury and other toxic exposures, such as in food. Your best bet to deal with that it to avoid toxins as much as possible, breastfeed your baby, and to learn about alternative medical treatments so you can nurse your child through illnesses. You are already off to a great start with your parenting philosophy.

Have you read Neil Z. 's book Vaccine Safety Manual?

Winnie Hello!Vaccinations > Hi, I've just joined. My name is Kate, I'm 26, married with a 15 > month old son. I'm very much into natural parenting, > breastfeeding, co-sleeping, babywearing et al > > My son had his vaccines at 8 weeks, 17 weeks and 24 weeks. > Basically because I didn't know what else to do, everyone kept > saying that the risks of vaccines were far outweighed by the benefits.> > But something inside me is telling me that they are wrong, that > I wish he hadn't had them and that I don't want him to have > anymore. I've delayed them but I'm almst certain that he won't > be having them.> There was an outbreak of measles in a neighbouring village abd I > do worry. I think about how awful it would be if he got measles. > > I just want to learn more really and also get some support from > other parents who don't vax. > >

[Guest guest]

Welcome too and think for a

little more: are measles REALLLLLLY that *awful*?? Really? This is where

a good immune system can overcome a friendly childhood disease that wasn’t

anything to be worried about. Once a vaccine comes out suddenly it’s a

dreaded thing! In the 60’s my mom remembers measles being nothing

*I* remember being a new mom and chicken pox was nothing…

soup, stay inside for a while, watch lots of TV and take lots of baths.

Then the vaccine came out and suddenly chicken pox is as dreaded

as the plague.

Keep listening to the voice that says don’t do it. That’s

a good voice to listen to. Who was it that said that we humans are about the

only species that totally ignore our sense of intuition. How we all stay alive

is beyond me sometimes! Course then there is alive and then there is

living and for some, they’re not really living. They’re just alive

and that is not what I want. I don’t want bottles and bottles of RX meds

in my cabinet. I don’t want the RX products in my body. Even “safe”

OTC! We have none of that in the house

Nita,

mom to: 17, Jon 15, 13, 11, 9, Christian (7/16/03 to

8/22/04), 4, Isaac 2 and one cooking due 3/2011

http://momof6.dotphoto.com for

possibly current pictures and http://nitasspot.blogspot.com

Learn from the mistakes of others. Trust me... you can't live long enough

to make them all yourself.

[Guest guest]

I totally agree with Venita...... i had chicken pox as a kid - so did my brother ... and it seemed more of a " rite of passage " --- sure it was a pain in teh you know where -- but its not the end of the world. And according to my pediatrician at the time, he beelived that these childhood illnesses made our bodies STRONGER ....

while i never had the measles or the mumps ---- i wonder if these illnesses are so terrible * as long as they are being monitored properly by a doc and the kids are given good remedies to help the body with the illness.......

good luck - and welcome to the forum! you'll find AWESOME information here -- as well as a GREAT support system! deb On Thu, Sep 23, 2010 at 10:23 AM, Venita Garner <nitagarner@...> wrote:

 

Welcome too and think for a

little more: are measles REALLLLLLY that *awful*?? Really? This is where

a good immune system can overcome a friendly childhood disease that wasn’t

anything to be worried about. Once a vaccine comes out suddenly it’s a

dreaded thing! In the 60’s my mom remembers measles being nothing

 

*I* remember being a new mom and chicken pox was nothing…

soup, stay inside for a while, watch lots of TV and take lots of baths.

 

Then the vaccine came out and suddenly chicken pox is as dreaded

as the plague.

 

Keep listening to the voice that says don’t do it. That’s

a good voice to listen to. Who was it that said that we humans are about the

only species that totally ignore our sense of intuition. How we all stay alive

is beyond me sometimes!  Course then there is alive and then there is

living and for some, they’re not really living. They’re just alive

and that is not what I want. I don’t want bottles and bottles of RX meds

in my cabinet. I don’t want the RX products in my body. Even “safe”

OTC! We have none of that in the house

 

Nita,

mom to: 17, Jon 15, 13, 11, 9, Christian (7/16/03 to

8/22/04), 4, Isaac 2 and one cooking due 3/2011

http://momof6.dotphoto.com for

possibly current pictures and http://nitasspot.blogspot.com

Learn from the mistakes of others.  Trust me... you can't live long enough

to make them all yourself.

[Guest guest]

I will admit Rubella makes me neverous becuase of what I heard about a woman

getting it & making her unborn child blind. Im still relatively new to not

vaccinating my children. SOME out there make me so neverous.

Re: Hello!

I asked my grandma about measles as she said all of her 4 kids had it. I asked

her how bad it was and she said " I dont really remember... " And let me clarify

my grandma was not a great mother and her kids ate TERRIBLY as children. They

are all alive and my mom doesnt even remember the measles.....sounds to me it

was just another childhood illness now blown out of proportion, just like they

are starting to do with the chickenpox

>

> Welcome too and think for a little more: are measles REALLLLLLY that

> *awful*?? Really? This is where a good immune system can overcome a friendly

> childhood disease that wasn't anything to be worried about. Once a

[Guest guest]

I asked my grandma about measles as she said all of her 4 kids had it. I asked

her how bad it was and she said " I dont really remember... " And let me clarify

my grandma was not a great mother and her kids ate TERRIBLY as children. They

are all alive and my mom doesnt even remember the measles.....sounds to me it

was just another childhood illness now blown out of proportion, just like they

are starting to do with the chickenpox

>

> Welcome too and think for a little more: are measles REALLLLLLY that

> *awful*?? Really? This is where a good immune system can overcome a friendly

> childhood disease that wasn't anything to be worried about. Once a

[Guest guest]

Hi ,

You might ask for a TSI screening test as well while you're at it.

If it's positive, you could be on your way to the joys of hyperthyroidism of some kind. I was undiagnosed Hypo for years because my doctor wasn't paying attention , and then without warning I flipped to having Grave's disease with symptoms very close to what you describe and my blood pressure shot up to 180/120 (and I weighed 105 pounds) and that was the ONLY reason my disease was caught before something REALLY bad happened like a stroke. Something like 30% of Grave's patients start out hypothyroid for some period of time.

If you turn out to have Grave's disease, definitely look into the option of a trial of long term medication (2-4 years) with antithyroid drugs along with the other two more popular treatment options (RAI/Surgery). There's

choices! Not the dozens you might have when you're hypo, but at least there's 3

Good luck!

***

"This year, after feeling 'hypo' for years, steadily gaining weight for no reason etc, I'm too hot, racy heart and have unaccountably lost weight, to the tune of approx 10lbs! Now totally unable to regulate body temp, get cold to the point of can't move, after ten minutes under a throw to warm up, can hardly breathe for uncontrollable heat! Aaaaah!"

[Guest guest]

Debbie,Welcome to the group....I hope someone with more experience chimes in as my leaky gut experience is not like your son's ....other than the extreme food sensitivities. Perhaps someone can tell you about the new GAPS book and cookbook.I can do absolutely NO DAIRY of any kind.Joan

Hello! We soon will be starting the GAP diet still have lots to learn. I have a 13 year old son that has seizures (the last almost 9 years) this year has been the hardest yet. Long story. My son was very ill this summer from I believe was aseptic meningitis caused by his seizure medicine. My son couldn't hardly communicate and didn't even no his own name. He was given 3 IV antibodics while in the hospital and a week later his health even more down hill. My son started having drop episodes...where he would just faint. We broke a toilet and had many closes calls. My son would have a lot of seizures in the morning..then he would go 7 hours seizure free then he would have them close to 2 pm....4pm....6:30pm...some times even when he would be eating. My son started on the Modified Adkins diet in April of this year he went seizure free during the day the first time in 8 years but he still had them allot of seizure activity at night so the doctor wanted to change his medicine. I really was scared to and it was the biggest mistake I have made. My son doesn't react well at all to any medicines at all. And since being on the Modified Adkins diet...we really react violently to anything he is allergic too. Three weeks ago we went off cream and butter and added probodics and enzymes and he has had only a few episodes in 3 weeks. Nights the seizures are still there but have gotten some better. I now think most of seizures are caused by a leaky gut which is causing his food allergies. Today he had 2 episodes, I now no he can't do any coconut flour...if he gets any he will have a seizure within 2 1/2 hours. And he got into decaf flavoured tea...and had a seizure with in minutes. I need to get started quickly. I have started doing some broth. Any suggestions? Does anyone on here have anyone with seizures? I know the GAP diet has been successful with some cases of epilepsy. I really think if we can fix his gut we will fix the seizures. My son started his seizures almost 9 years ago with a bad virus he vomited in his sleep for 3 days he has never been the same. My son was a very ill little guy and I believe he always had trouble with gluten. He has been gluten free for at least 2 years. We only do stevia for sweetners. Eat low carb, high good fat, moderate protein. He is very sensitive to lots of things and developing food allergies it seems every day. We need to get started soon.

Debbi

[Guest guest]

I am wondering if we will have to cut all the dairy out too. He has reacted

violently to the tea....now we have done 4 seizures from this. They are scary

because you don't know when he is going to go down and if he is standing it is

very dangerous. We have learned allot in 3 weeks....with just probodics and

enzymes. But if it is an allergy, enzymes won't matter he will still have a

seizure.

We will get it....just need to get started soon on the diet.

thanks

Debbi

>

>

> Debbie,

>

> Welcome to the group....I hope someone with more experience chimes in as my

leaky gut experience is not like your son's ....other than the extreme food

sensitivities. Perhaps someone can tell you about the new GAPS book and

cookbook.

>

> I can do absolutely NO DAIRY of any kind.

>

> Joan

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Hello! We soon will be starting the GAP diet still have lots to learn.

I have a 13 year old son that has seizures (the last almost 9 years) this year

has been the hardest yet. Long story. My son was very ill this summer from I

believe was aseptic meningitis caused by his seizure medicine. My son couldn't

hardly communicate and didn't even no his own name. He was given 3 IV

antibodics while in the hospital and a week later his health even more down

hill. My son started having drop episodes...where he would just faint. We

broke a toilet and had many closes calls. My son would have a lot of seizures

in the morning..then he would go 7 hours seizure free then he would have them

close to 2 pm....4pm....6:30pm...some times even when he would be eating. My

son started on the Modified Adkins diet in April of this year he went seizure

free during the day the first time in 8 years but he still had them allot of

seizure activity at night so the doctor wanted to change his medicine. I really

was scared to and it was the biggest mistake I have made. My son doesn't react

well at all to any medicines at all. And since being on the Modified Adkins

diet...we really react violently to anything he is allergic too. Three weeks

ago we went off cream and butter and added probodics and enzymes and he has had

only a few episodes in 3 weeks. Nights the seizures are still there but have

gotten some better. I now think most of seizures are caused by a leaky gut

which is causing his food allergies. Today he had 2 episodes, I now no he can't

do any coconut flour...if he gets any he will have a seizure within 2 1/2 hours.

And he got into decaf flavoured tea...and had a seizure with in minutes. I need

to get started quickly. I have started doing some broth. Any suggestions?

Does anyone on here have anyone with seizures? I know the GAP diet has been

successful with some cases of epilepsy. I really think if we can fix his gut we

will fix the seizures. My son started his seizures almost 9 years ago with a

bad virus he vomited in his sleep for 3 days he has never been the same. My son

was a very ill little guy and I believe he always had trouble with gluten. He

has been gluten free for at least 2 years. We only do stevia for sweetners.

Eat low carb, high good fat, moderate protein. He is very sensitive to lots of

things and developing food allergies it seems every day. We need to get started

soon.

>

> Debbi

>

[Guest guest]

Hi Debbi,

The seizures sound fairly serious. Have you considered consulting with an M.D.

who specializes in overseeing the GAPS diet, or consulting with Dr.

-MacBride, directly? IMHO I'd do that if my child was having so many

seizures.

You can write to me directly; I think I have a link for Dr. -MacBride.

At one time she was offering one-time consults, for free (if I'm not mistaken).

Would need to research that info. & verify its accuracy.

S.

>

> Hello! We soon will be starting the GAP diet still have lots to learn. I

have a 13 year old son that has seizures (the last almost 9 years) this year has

been the hardest yet. Long story. My son was very ill this summer from I

believe was aseptic meningitis caused by his seizure medicine. My son couldn't

hardly communicate and didn't even no his own name. He was given 3 IV

antibodics while in the hospital and a week later his health even more down

hill. My son started having drop episodes...where he would just faint. We

broke a toilet and had many closes calls. My son would have a lot of seizures

in the morning..then he would go 7 hours seizure free then he would have them

close to 2 pm....4pm....6:30pm...some times even when he would be eating. My

son started on the Modified Adkins diet in April of this year he went seizure

free during the day the first time in 8 years but he still had them allot of

seizure activity at night so the doctor wanted to change his medicine. I really

was scared to and it was the biggest mistake I have made. My son doesn't react

well at all to any medicines at all. And since being on the Modified Adkins

diet...we really react violently to anything he is allergic too. Three weeks

ago we went off cream and butter and added probodics and enzymes and he has had

only a few episodes in 3 weeks. Nights the seizures are still there but have

gotten some better. I now think most of seizures are caused by a leaky gut

which is causing his food allergies. Today he had 2 episodes, I now no he can't

do any coconut flour...if he gets any he will have a seizure within 2 1/2 hours.

And he got into decaf flavoured tea...and had a seizure with in minutes. I need

to get started quickly. I have started doing some broth. Any suggestions?

Does anyone on here have anyone with seizures? I know the GAP diet has been

successful with some cases of epilepsy. I really think if we can fix his gut we

will fix the seizures. My son started his seizures almost 9 years ago with a

bad virus he vomited in his sleep for 3 days he has never been the same. My son

was a very ill little guy and I believe he always had trouble with gluten. He

has been gluten free for at least 2 years. We only do stevia for sweetners.

Eat low carb, high good fat, moderate protein. He is very sensitive to lots of

things and developing food allergies it seems every day. We need to get started

soon.

> Debbi

> dsprang@...

>

[Guest guest]

Hello !

We do need help quickly. I would love to talk with Dr. This has been the

hardest year that I have ever lived. It is so hard to see your child go down

hill. Drop seizures...attacks...are horrible and we are no longer able to live

a normal life. The enzymes have helped but my son is developing food

intolerance quickly and I don't know when they are going to hit and down he

goes. This week it has been lemons....pure, lemons (just a 1/2)in water with

stevia. He had been able to do this for weeks now with know problem. Our

doctor (who talked at the annual meeting Weston Price) wanted him to start on

florasor along with his probodic and enzymes. His seizures are worse...so he

isn't going to be able to. We have been on the GAP diet for a week now....he

had been doing the Modified Adkins diet since April so he was on limited foods

before. I am scared my son will keep developing these allergies and not be able

to eat at all with out these drop attacks. These drop attacks didn't start

until his illness....3 antibiotics IV....with the aseptic meningitis. I could

just cry....this is the first year in 9 years that with his seizures he has had

problems with going to school and leading a normal life. He always had seizures

but was able to stand and he would never fall. Falling....is horrible and

dangerous.

thanks for any info I appreciate it. Please use the email below because my

emails in my account gets lost. Thanks again.

Debbi Sprang

dsprang@...

> >

> > Hello! We soon will be starting the GAP diet still have lots to learn. I

have a 13 year old son that has seizures (the last almost 9 years) this year has

been the hardest yet. Long story. My son was very ill this summer from I

believe was aseptic meningitis caused by his seizure medicine. My son couldn't

hardly communicate and didn't even no his own name. He was given 3 IV

antibodics while in the hospital and a week later his health even more down

hill. My son started having drop episodes...where he would just faint. We

broke a toilet and had many closes calls. My son would have a lot of seizures

in the morning..then he would go 7 hours seizure free then he would have them

close to 2 pm....4pm....6:30pm...some times even when he would be eating. My

son started on the Modified Adkins diet in April of this year he went seizure

free during the day the first time in 8 years but he still had them allot of

seizure activity at night so the doctor wanted to change his medicine. I really

was scared to and it was the biggest mistake I have made. My son doesn't react

well at all to any medicines at all. And since being on the Modified Adkins

diet...we really react violently to anything he is allergic too. Three weeks

ago we went off cream and butter and added probodics and enzymes and he has had

only a few episodes in 3 weeks. Nights the seizures are still there but have

gotten some better. I now think most of seizures are caused by a leaky gut

which is causing his food allergies. Today he had 2 episodes, I now no he can't

do any coconut flour...if he gets any he will have a seizure within 2 1/2 hours.

And he got into decaf flavoured tea...and had a seizure with in minutes. I need

to get started quickly. I have started doing some broth. Any suggestions?

Does anyone on here have anyone with seizures? I know the GAP diet has been

successful with some cases of epilepsy. I really think if we can fix his gut we

will fix the seizures. My son started his seizures almost 9 years ago with a

bad virus he vomited in his sleep for 3 days he has never been the same. My son

was a very ill little guy and I believe he always had trouble with gluten. He

has been gluten free for at least 2 years. We only do stevia for sweetners.

Eat low carb, high good fat, moderate protein. He is very sensitive to lots of

things and developing food allergies it seems every day. We need to get started

soon.

> > Debbi

> > dsprang@

> >

>

[Guest guest]

Welcome Martha!  My name is Stacey. I am a homeschooling mom of 5 kids. We live overseas. We've been here for 8 years now.  My baby is 6 months and I realized I had to get on the ball. I started at 304lbs. I am down to 290lbs now.  I have a long way to go, but taking it one day at a time.

StaceyOn Wed, Feb 9, 2011 at 4:14 AM, mzreid_1005 <mzreid_1005@...> wrote:

 

Hi My Name is Martha and I just wanted to introduce myself to the group!

I live in Michigan and it's been bitter cold!

I have had a hard time with my program lately so I'm hope that I'm able to find some support here and offer some if needed.

Take Care,

Martha

[Guest guest]

On 2/8/2011 8:14 PM, mzreid_1005 wrote:

> >Hi My Name is Martha and I just wanted to introduce myself to the group!

>

> >I live in Michigan and it's been bitter cold!

Hi, Martha, and welcome. It's been pretty darn cold here in NJ, too. At

least they're predicting that this time next week we'll be in the 40's -

a veritable heat wave! We'll hopefully get rid of these 5 foot high

piles of icy snow that we still have all over the city.

Are you on any special food and/or exercise plan or just winging it on

your own? As (co-list mom) always says - Baby steps! Drink your

water, watch your food, and journal everything. Just the act of writing

it all down makes it clearer what you have to do different to achieve

your goals.

Sue in NJ

[Guest guest]

My allergist, who is very familiar with Samters has me on a double dose of

Singulair(2-10mg tablets per day). This has kept the polyps away for three

years, with no side affects. He told me that in Europe dosages of up to 4

tablets a day have been used. As with any medicine, it all depends on the

patient since we are all different. The side affects for any drug may also

affect some patients and not bother others.

For insurance purposes, the prescription has to be written correctly or the

insurance will not pay for any more than 30 tablets a month.

None of this may help your friend but it appears that sometimes you have to

think outside the box with Samters.

I have not undergone aspirin desensitization and my doctor recommends against

it. That probably is just what works for me but I take no Prednisone and have no

sinus infections and I did regain my sense of smell.

Best of luck for her future recovery.

>

> Hello everyone!

>

> My name is Garrett and I am on this fourm on behalf of a good friend of mine

who suffers from Samter's Triad. I just wanted to get some feedback from anyone

who shares a similar situation with her, so here we go!

>

> My friend is a 28 year old female who has had Samter's now for about six

years. It was onset (seemingly) by a nasal infection that didnt want to go

away. Asthama was also onset around the same time, maybe a bit earlier.

>

> About two years ago it was discovered that polyps had been growing inside of

her sinus cavities. Soon after she had polyp removal surgery and all polyps were

sucessfully extracted. Witin a few months though, as all of you have probably

already guessed, the polyps returned with a vengance and her nasal tissue again

became inflamed.

>

> Fast forward to last week. My friend had saved up what she could and was

admitted to Scripps clinic in La Jolla, CA (or Carmel Valley, I forget which) to

undergo aspirin desensitization. The procedure went sucessfully and she was

desensitized.

>

> Before I forget I would like to also note that during this entire time period

my friend has been taking advair which has worked like a charm on her asthma; it

is a nonfactor in her life at this time. She has taken many prednisone bursts

which enable her to regain her sense of smell (which has been lost since the

beginning), taste, squashed all inflammation, released the mucus from her sinus

cavities, and allowed her to sleep a full eight to ten hours. Of course these

are short lived. Also prior to her surgery and up until the point her polyps

and nasal inflammation returned she was taking singulair 10mg as well as a nasal

steroid.

>

> Now she is around ten days out from desensitization and her facial

pressure/nasal inflammation seems to be worse. This may be due to the fact that

her perscription for Advair and Singular had lapsed for two days and she was

unable to take them during this time.

>

> Unfortunatly she does not have the money (or insurance I should add) to have

another polyp removal surgery.

>

>

> So with all that being said, my questions are:

>

> 1) Is there anyone out there who has had sucscess (even minor) from aspirin

desensitization in combination with a leukotriene inhibitor and anything else

WITHOUT surgery?

>

> 2) Has anyone switched from Singular to Zyflo and experienced major results

(without having polyp surgery)?

>

> 3) Does anyone have any information regarding the nebulizer rinse (I have only

seen this in one topic, sorry for the ambiguity)?

>

> 4) Has anyone done any research regarding a combination aspirin desentization

and melatonin production (or inhibiting)?

>

> Thanks in advance and it's been a pleasure to read alot of these posts.

>

>

> -Garrett

>

>

> PS.I typed this up pretty quick as i'm on my lunch break so please pardon the

spelling/grammar issues and any ambiguity!

>

[Guest guest]

Hi I do take Zyflo and the pulmicort rinse, Once I go back on Xolair I will not have to take the Zyflo. Aspirin desensitized but had to stop the aspirin for surgery so will have to through process again, Symbicort, xoponex and allegra 180 mg for asthma abd epi-pen for analphylatic reactions. I just got a new nebulizer by Lin Care and far better than what I did have. Had surgery in Oct for polyps and found to have MRSA infection at the same time in my sinuses. From: garrett <garrettwake@...>samters Sent: Sat, February 26, 2011 11:00:27 PMSubject: Hello!

Hello everyone!

My name is Garrett and I am on this fourm on behalf of a good friend of mine who suffers from Samter's Triad. I just wanted to get some feedback from anyone who shares a similar situation with her, so here we go!

My friend is a 28 year old female who has had Samter's now for about six years. It was onset (seemingly) by a nasal infection that didnt want to go away. Asthama was also onset around the same time, maybe a bit earlier.

About two years ago it was discovered that polyps had been growing inside of her sinus cavities. Soon after she had polyp removal surgery and all polyps were sucessfully extracted. Witin a few months though, as all of you have probably already guessed, the polyps returned with a vengance and her nasal tissue again became inflamed.

Fast forward to last week. My friend had saved up what she could and was admitted to Scripps clinic in La Jolla, CA (or Carmel Valley, I forget which) to undergo aspirin desensitization. The procedure went sucessfully and she was desensitized.

Before I forget I would like to also note that during this entire time period my friend has been taking advair which has worked like a charm on her asthma; it is a nonfactor in her life at this time. She has taken many prednisone bursts which enable her to regain her sense of smell (which has been lost since the beginning), taste, squashed all inflammation, released the mucus from her sinus cavities, and allowed her to sleep a full eight to ten hours. Of course these are short lived. Also prior to her surgery and up until the point her polyps and nasal inflammation returned she was taking singulair 10mg as well as a nasal steroid.

Now she is around ten days out from desensitization and her facial pressure/nasal inflammation seems to be worse. This may be due to the fact that her perscription for Advair and Singular had lapsed for two days and she was unable to take them during this time.

Unfortunatly she does not have the money (or insurance I should add) to have another polyp removal surgery.

So with all that being said, my questions are:

1) Is there anyone out there who has had sucscess (even minor) from aspirin desensitization in combination with a leukotriene inhibitor and anything else WITHOUT surgery?

2) Has anyone switched from Singular to Zyflo and experienced major results (without having polyp surgery)?

3) Does anyone have any information regarding the nebulizer rinse (I have only seen this in one topic, sorry for the ambiguity)?

4) Has anyone done any research regarding a combination aspirin desentization and melatonin production (or inhibiting)?

Thanks in advance and it's been a pleasure to read alot of these posts.

-Garrett

PS.I typed this up pretty quick as i'm on my lunch break so please pardon the spelling/grammar issues and any ambiguity!