Just Joined

[Guest guest]

Hi Sissi,

Oh my, you have so much on your plate. I can't imagine.

I'm sure your daughter will be fine. My son had spinal surgery for scoliosis

at the age of 16 and was back in marching band with his trombone several

weeks later. Kids are quite resiliant and recover quickly. The surgery is

hard for a parent to contemplate as it seems so frightening and dangerous.

It is not a walk in the park, but it is not as dangerous as it may first

appear. And you have us for support. Write in with any questions you may

have or just to vent, at any time.

Bonnie

[Guest guest]

Hello Sissi,

My name is Peggy and I had surgery with a Harrington rod back in 1975. I

was 12 years old at the time and am now 37. I don't remember the exact

degrees of my curve but I would say it was pretty similar to your daughter's

curvature. I had surgery at a time when I had to wear a full body cast for

a year. I am sure the methods used today are much better than they were

back then! I grew up to live a normal life, well, a fairly normal one. I

was never allowed to play contact sports but that is the only limitation I

remember. I've been married twice and I have two daughters. Both

pregnancies were normal and both were natural childbirth - the fusion did

not cause any problems at all. I've even forgotten about the fine scar line

on my back when I put on a bathing suit. I am sure your daughter will be

fine. I remember my Mom being much more scared than I but she never let on.

I'm sorry you not only have one " ill " child to deal with but three. I will

keep you in my prayers. Your daughter is also welcome to direct any

questions she might have to those of us that have been through surgery.

Peggy Greene

JPG Unlimited

Antiques & Collectibles

jpgreene@...

Just joined

>

>

> My Groups | Scoliosis Treatment Main Page | Start a new group!

>

>

> Hi,

> I joined this egroup because my 16-year-old daughter, Amber, has been

> referred to a surgeon at Emory Spine Center for spinal fusion. Amber

> has an " S-shaped " curve with a 59% curve in the T-9 level and a 38%

> curve in the L-2 level.

> We see this new surgeon in two weeks and I'm scared to death. Hi

> sname is Dr. Horton.

> To make matters worse, (as if they needed to be worse) our two

> younger children also have medical issues. Dillon (age 8) is

> recovering from a long illness which nearly destroyed his kidneys and

> Boone (age 3) has recently been diagnosed with autism and hyperlexia.

> Boone's diagnosis came just two weeks before we learned Amber would

> require surgery.

> I have taken a leave of absence from my job partly to make

> arrangements for Amber's surgery and aftercare, partly to find

> suitable therapy for Boone and partly to have a nervous breakdown.

> I know zilch about scoliosis other than my brother in law has a

> pretty severe case that went untreated and now he cannot even turn

> his head unless he turns his entire upper body. He's also very

> hunchbacked and looks much older than he really is. I cannot let this

> happen to my daughter but the risks of surgery frighten me beyond

> reason. It seems so unfair that someone so young has to go through

> such an ordeal at the height of her teen life.

> I keep an online journal to keep distant family members abreast of

> the latest in our medical nightmare.

> http://home.isoa.net/~nitetrax/dillon.htm

> Sometimes I wonder if my husband and I should have ever met.

> I guess I've rambled long enough. Thanks for listening.

> Sissi

>

>

>

>

>

[Guest guest]

Dear Sissy,

I just wanted to say that you are very brave to be holding up so

well under so much pressure and bad luck. But as others on the list have

told you, Amber's surgery should go just fine. She will be in excellent

hands and she is young. The techniques are so different from even 15 years

ago. And kids are wonderfully matter-of-fact and resiliant. I'm 55 years

old, and when I was diagnosed, the Harrington surgery was in its infancy

and was not recommended for me. I was miserable because they told me that

the best they could do was stop the curves from getting worse - of course

they got worse anyway and I finally had the Harrington surgery in 1977. If

I had been able to have my back straightened at 16 I would have had much

happier teen years - I remember shopping for clothes was a nightmare (it

still is but that's because of my fat hips - Ive come to terms with the

scoliosis part) - all I did was look for clothes that would " hide " the

lumps and bumps and the hip that was higher than the other.

All this to say that you are doing the right thing, and I know

Amber will be glad she's done this. As the others have said, any time you

want to write, do. There are a lot of knowledgeble people on the list - so

somebody can usually answer your questions or direct you to a web-site that

has information.

You are in my thoughts.

Best,

from Italy

[Guest guest]

Thanks everybody for the support. I'll try to get Amber to post any

questions she might have. She's a bit shy though.

Sissi

nitetrax@...

Kids' Page

http://home.isoa.net/~nitetrax/dillon.htm

Re: Just joined

>

> Dear Sissy,

> I just wanted to say that you are very brave to be holding up so

> well under so much pressure and bad luck. But as others on the list have

> told you, Amber's surgery should go just fine. She will be in excellent

> hands and she is young. The techniques are so different from even 15 years

> ago. And kids are wonderfully matter-of-fact and resiliant. I'm 55 years

> old, and when I was diagnosed, the Harrington surgery was in its infancy

> and was not recommended for me. I was miserable because they told me that

> the best they could do was stop the curves from getting worse - of course

> they got worse anyway and I finally had the Harrington surgery in 1977. If

> I had been able to have my back straightened at 16 I would have had much

> happier teen years - I remember shopping for clothes was a nightmare (it

> still is but that's because of my fat hips - Ive come to terms with the

> scoliosis part) - all I did was look for clothes that would " hide " the

> lumps and bumps and the hip that was higher than the other.

> All this to say that you are doing the right thing, and I know

> Amber will be glad she's done this. As the others have said, any time you

> want to write, do. There are a lot of knowledgeble people on the list - so

> somebody can usually answer your questions or direct you to a web-site

that

> has information.

> You are in my thoughts.

> Best,

> from Italy

>

>

>

>

>

[Guest guest]

Hi ! Welcome to the group :-) Glad to have you! You do have a

good question that I've never really though of before. I don't know how

often we should get scoped...just as a checkup type deal. I know the

last time I did go in and get scoped I couldn't finish the

procedure...they gave me the full amount of drugs that they could and I

was still hyperventilating and fighting them off. Not sure what's going

to happen if I suddenly need to be scoped again. They may have to put

me completely out!! Anyway, welcome to the group. I'd also like to

know opinions on that question.

bmw240@... wrote:

> Hello everyone,

>

> I was very excited when I came across your site. I felt so alone.

> I was diagnosed with achalasia in 1992. I have some questions that

> nobody seems to be able to answer. I would like to know how often

> I need to be scoped. Does anyone know what the risk for esophagus

> cancer? I have asked three doctors, and got three different answers.

> Has anyone been told not to drink alcohol? Some of my questions

> have been answered by reading about other members.

>

>

>

>

>

>

>

[Guest guest]

Hello ,

My doctor suggests that I should be checked yearly at the moment and

then if everything seems ok perhaps every two or three years. I'm

quite bad with the endoscopes. I've had two so far, the first time I

was given a mild sedative and ended up fighting and swearing at the

staff. They then gave me the max dose and I felt as high as a kite

for a day or two. My doctor then said that he would give me a general

aneasthetic as I obviously react quite badly under sedation. I hope

everything works out.

Jess

[Guest guest]

I was wondering if anyone knew of a web site that made this real simple. The

idea of having to look through the Beneficial/Neutral/Avoid lists all the time

is not something I feel I have time for.

Guess I need a pocket thing or something " easy " Any ideas?

Glenny (Capriella)

~~God Bless America~~~

[Guest guest]

http://curezone.com/ER4YT/

Click on the above website and print out.

Although you need the LiveRight4YourType book to update info.

And welcome aboard, Glenny.

Gaye

> Guess I need a pocket thing or something " easy " Any ideas?

> Glenny (Capriella)

[Guest guest]

Well, i've always been interested in nuitrition and diets

since teens, but detoured based on my parents' business influence.

Discovered ER4YT (Apr '99) just after going to the dermatologist

which I was prescribed steroid shots for nearly 6 yrs.

Told " do you want to die of a heart attack or live with this the rest

of your life? " .

ER was the way to go, after reading how some were being " cured " of

their conditions.

I have not had to go back for Dr. visits.

I do use an ointment when i eat avoids, and breakout in hives.

Thank God for Dr Dadamo,

Gaye

> How did all of you get started with this...It all seems so

complicated to me right now

> Glenny (Capriella)

>

[Guest guest]

This is good for individual look

ups.http://www.dadamo.com/database/database.cgi or

http://www.dadamo.com/csv/database.html but I don't think either is as

accurate as the LR book. I used Worcestershire Sauce and it showed avoid for

all on both list. The book shows that it is Nuetral for Secretors and avoid

for N-S

> I was wondering if anyone knew of a web site that made this real simple.

The idea of having to look through the Beneficial/Neutral/Avoid lists all

the time is not something I feel I have time for.

>

> Guess I need a pocket thing or something " easy " Any ideas?

> Glenny (Capriella)

>

> ~~God Bless America~~~

[Guest guest]

Murray wrote:

> This is good for individual look

> ups.http://www.dadamo.com/database/database.cgi or

> http://www.dadamo.com/csv/database.html but I don't think either is as

> accurate as the LR book. I used Worcestershire Sauce and it showed avoid for

> all on both list. The book shows that it is Nuetral for Secretors and avoid

> for N-S

>

I think Worchestershire Sauce has soy sauce in it which is usually made with

wheat - you might want to check the label.

[Guest guest]

I've been wondering which is the " ultimate authority " . ER4YT has low

fat, low sugar mayo as neutral. Some resource (I believe the database

below) had mayo as an avoid. Could be it was referring to the full

fat variety. I know that some folks referred to LR4YT with some

modifications/refinements. Where does the ultimate authority lie?

Clarification please.

Thanks.

> Re: Fw: Just joined

>

>

> Murray wrote:

>

> > This is good for individual look

> > ups.http://www.dadamo.com/database/database.cgi or

> > http://www.dadamo.com/csv/database.html but I don't think

> either is as

> > accurate as the LR book. I used Worcestershire Sauce and

> it showed avoid for

> > all on both list. The book shows that it is Nuetral for

> Secretors and avoid

> > for N-S

> >

>

> I think Worchestershire Sauce has soy sauce in it which is

> usually made with wheat - you might want to check the label.

>

>

>

[Guest guest]

Hi ,

Welcome to the group. We are always happy to help new people by answering

any questions they might have. Never think a question is foolish. We may

have had to ask it at one time our selves.

I know it gets a little confusing with ER, CR, and LR. It's best to read and

understand one book at a time. Remember that the first book Dr. Dadamo wrote

was Eat Right and it was the ultimate authority at that time. He added more

that he had learned in Cook Right. Now there is more sophisticated equipment

for testing and he has written Learn Right to update us. That would be the

ultimate authority. Mayonnaise needs to be checked for ingredients, just

like any other condiment or prepared food. Be sure of the oil used. You also

need to check that it is made with apple cider vinegar, and not white

vinegar. Regular vinegar is an avoid, just like corn oil, Castor oil,

Cottonseed oil, Peanut oil, Safflower oil, Soy oil, Sunflower oil,

Wheat-germ oil, and Evening Primrose oil. I'm giving the list from The Live

Right book. There are other oils that it would depend on whether you are a

Secretor or Non- Secretor ( the definition is in the back of the ER book).

The online references are improvements on the ER book.

I hope you enjoy this way of eating that you find yourself feeling so much

better by using it.

> I've been wondering which is the " ultimate authority " . ER4YT has low

> fat, low sugar mayo as neutral. Some resource (I believe the database

> below) had mayo as an avoid. Could be it was referring to the full

> fat variety. I know that some folks referred to LR4YT with some

> modifications/refinements. Where does the ultimate authority lie?

> Clarification please.

>

> Thanks.

>

>

[Guest guest]

Hi !<br><br>I developed hypothyroidism

approximately 5 or 6 months after my son Cody was born (he is 2

1/2). He was also born by c-section, but I did not have

a blood transfusion. In researching hypothyroidism

I found that it often will be brought on after a

pregnancy. Some women eventually stop having problems and

some don't. I unfortunately have never

stopped.<br>Symptoms are different with everyone. My TSH level was

over 80 and I thought I was going to die I felt so

horrible! But I am pretty regulated with synthroid and then

with my vitamins I have felt a definite improvement in

energy level. Everyone is different, so weight may not

be an issue for you...be happy about

that!<br>Welcome to the

club!<br><br>a:o}<br><a href=http://robertas.themomteam.com

target=new>http://robertas.themomteam.com</a>

[Guest guest]

Thanks a! I'm so glad I found this club! I

never met anyone else with a thyroid problem, but I now

I know there's a lot of us out there going through

the same ordeal.<br><br>Hope everyone has a safe and

happy holiday!

[Guest guest]

,<br> I have been diagnosed being

hypothyroid since I was very young . anyways I too Do not

have weight problem but have all the other

symptoms<br> To the next thing does anyone here seem to have

worse pms since diagnosed??? My doc. just increased my

synthroid and my pms is like extremely bad.being a nurse I

feel crazy asking that but I deal with the alzheimers

so this is not in my " cards "

[Guest guest]

You possibly have postpartum thyroid

dysfunction-- It's another crummy autoimmune process where your

body attacks it's own tissues for no good reason.

That's when my problems started as well. For some women

the condition is transitory and the thyroid gland

will resume full function. For others (like me) there

is an initial spike of hyperthyroidism, then you go

hypo and stay that way.<br><br>I know a couple of very

thin women who are hypothyroid. I have read that it

doesn't necessarily mean you will be overweight, but

that:<br><br>a) Most hypo women just don't have the energy they

once did to move about and exercise, so they start

gaining.<br><br> And metabolism slows way down, so you gain if you

don't cut caloric intake. <br><br>I can't see the blood

transfusion connection, so try not to worry about that.

<br><br>Also,<br>

[Guest guest]

the thing I found very helpful with my spasms is a supplement called

L'argenine if you look at past posting and look for " JOOP " this will explain

most thins on this subject.Might I just add that this works for myself and a

few others on this group but may not help you I have to put this in just in

case it does not help your spasms at all.

Take Care and I hope this helps you

South Wales U.K.

Just Joined

> Hi folks,

> I just joined the group after finding it surfing the web. I now know

> what my crazy swallowing problem is. I am sick and tired of people

telling

> me I'm not chewing enough, or that I should just drink some water. The

> first episode for me was about 15 years ago. I would get a spasm which

> wouldn't allow me to swallow every once in a while. These days it seem to

> be a daily occurrance. Since I just discovered what causes my problem,

> could you all be so kind as to inform me of what non surgical methods you

> use to controll yours ?.

>

> Thanks

> Love

>

>

>

>

>

>

>

[Guest guest]

Cj,

Welcome to the group. I'm so sorry to hear about your boyfriend. The

main reason for a denial from SSDI would be that he has no liver

biopsy report to give them an idea of how much liver damage he may

have. If he hasn't had a CT scan or an ultrasound, see if the Dr will

do that for him. Possibly, one of those may help give you some idea

as to his livers real condition.

Is the dr he is seeing a Hepatologist or Gastroenterologist? If not,

get him to one as soon as you can. They can also do laproscopic

biopsies for people with low platelets. The treatment will make his

platelets drop even lower so not treating right now is most likely

the best decision until they come back up.

Feel free to post as often as you want here. There are many wonderful

people on this group and all are very supportive!

LeighAnn

[Guest guest]

thanks for the welcome, he was turned down on the grounds that his

liver was still working well enough and he can still stand and walk

on his own, but his lawyer he is using for work injurys is helping

him go for reconsideration. and they did take a ultra sound and are

doing a ct scan thursday also the doctor said maybe changing

his " happy pills " will help keep his platlet count from going down

more the other ones caused them to go a little lower he's at 44.000

(i think thats right..LOL)the doctor he is seeing is in a liver and

hep clinic and when we checked around about him we were told that he

was a great doctor but then again i always think they are not

telling us everything and i always feel that way about doctors..lol,

and wanted to say that i'm glad i found this group, my b/f went

through some of the past post and found some things others are or

went through that he is going through and i think it made him feel

better...cj & frank

[Guest guest]

It is so good of you to do some research on behalf of your boyfriend. I had

gotten so sick I couldn't do any of that for myself, and if not for good

friends, I would be dead now.

I recovered three years ago after the docs told me I would be dead in 6

months. I had HCV for 28 years and had reached end stage. I refused to do

interferon because I had done my homework and learned just how dangerous and

inneffective it really is, despite fraudelent Pharmaceutical industry

statistics.

People recover from HCV everyday without the drug treatments, so if yoru

boyfriedn canb't get on it, its no big loss...in fact, it may be the best

thing that could ever happen to him, if he is willing to take responsibility

for his recovery, take charge and provide his body with what it needs to

recover.

Find other forums and talk to as many people on treatemtn as you can find,

and then decide for yourself if the Pharms are telling the truth about

recovery rates and safety... the prood is in the people.

Copy and print out this info for him, then click on the link and read the

details from the Drug manufacturer. Peg permanantly damages the red blood

cells and destroys the immune system, and completely screws up the endocrin

system. This info came from the Pegasys site.

If I can help with anything, let me know. hepc@...

Peace, Jeanine

http://hepchelp.homestead.com

First they ignore you,

then they laugh at you,

then they fight you,

then you win.

Mahatma Ghandi

Alpha interferons, including PEGASYS (peginterferon alfa-2a), may cause or

aggravate fatal or life-threatening neuropsychiatric, autoimmune, ischemic,

and infectious disorders. Patients should be monitored closely with periodic

clinical and laboratory evaluations. Therapy should be withdrawn in patients

with persistently severe or worsening signs or symptoms of these conditions.

In many, but not all cases, these disorders resolve after stopping PEGASYS

therapy (see CONTRAINDICATIONS, WARNINGS, PRECAUTIONS and ADVERSE EVENTS in

complete product information).

Use with Ribavirin. Ribavirin, including COPEGUS™, may cause birth defects

and/or death of the fetus. Extreme care must be taken to avoid pregnancy in

female patients and in female partners of male patients. Ribavirin causes

hemolytic anemia. The anemia associated with ribavirin therapy may result in

a worsening of cardiac disease. Ribavirin is genotoxic and mutagenic and

should be considered a potential carcinogen (see CONTRAINDICATIONS,

WARNINGS, PRECAUTIONS and ADVERSE EVENTS in complete product information).

PEGASYS, peginterferon alfa-2a, alone or in combination with COPEGUS, is

indicated for the treatment of adults with chronic hepatitis C virus

infection who have compensated liver disease and have not been previously

treated with interferon alpha. Patients in whom efficacy was demonstrated

included patients with compensated liver disease and histological evidence

of cirrhosis (Child-Pugh class A).

PEGASYS is contraindicated in patients with hypersensitivity to PEGASYS or

any of its components, autoimmune hepatitis, and decompensated hepatic

disease (Child-Pugh class B and C) before or during treatment with PEGASYS.

PEGASYS is also contraindicated in neonates and infants because it contains

benzyl alcohol. Benzyl alcohol is associated with an increased incidence of

neurological and other complications in neonates and infants, which are

sometimes fatal. PEGASYS and COPEGUS therapy is additionally contraindicated

in patients with a hypersensitivity to COPEGUS or any of its components, in

women who are pregnant, men whose female partners are pregnant, and patients

with hemoglobinopathies (eg, thalassemia major, sickle-cell anemia).

COPEGUS THERAPY SHOULD NOT BE STARTED UNLESS A REPORT OF A NEGATIVE

PREGNANCY TEST HAS BEEN OBTAINED IMMEDIATELY PRIOR TO INITIATION OF THERAPY.

Women of childbearing potential and men must use two forms of effective

contraception during treatment and during the 6 months after treatment has

concluded. Routine monthly pregnancy tests must be performed during this

time. If pregnancy should occur during treatment or during 6 months

post-therapy, the patient must be advised of the significant teratogenic

risk of COPEGUS therapy to the fetus. To monitor maternal-fetal outcomes of

pregnant women exposed to COPEGUS, the COPEGUS Pregnancy Registry has been

established. Physicians and patients are strongly encouraged to register by

calling 1-800-526-6367.

The most common adverse events reported for PEGASYS and COPEGUS combination

therapy observed in clinical trials (N=451) were fatigue/asthenia (65%),

headache (43%), pyrexia (41%), myalgia (40%),

irritability/anxiety/nervousness (33%), insomnia (30%), alopecia (28%),

neutropenia (27%), nausea/vomiting (25%), rigors (25%), anorexia (24%),

injection site reaction (23%), arthralgia (22%), depression (20%), pruritus

(19%) and dermatitis (16%).

Serious adverse events included neuropsychiatric disorders (suicidal

ideation and suicide attempt), serious and severe bacterial infections

(sepsis), bone marrow toxicity (cytopenia and rarely, aplastic anemia),

cardiovascular disorders (hypertension, arrhythmias and myocardial

infarction), hypersensitivity (including anaphylaxis), endocrine disorders

(including thyroid disorders and diabetes mellitus), autoimmune disorders

(including psoriasis and lupus), pulmonary disorders (dyspnea, pneumonia,

bronchiolitis obliterans, interstitial pneumonitis and sarcoidosis), colitis

(ulcerative and hemorrhagic/ischemic colitis), pancreatitis, and

ophthalmologic disorders (decrease or loss of vision, retinopathy including

macular edema and retinal thrombosis/hemorrhages, optic neuritis and

papilledema).

Call our toll-free number 1-877-PEGASYS (1-877-734-2797) to enroll in our

comprehensive support program.

Go

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[Guest guest]

Cj,

The best defense when going to see these dr's is self education. The

more knows the better off he will be. He also needs to let his

dr know that he is a well informed guy when it comes to his hepc and

that he expects the dr to be totally honest and upfront with him.

There are other ways to find out about his liver condition. A few

posts back was a discussion about a new thing called FIBROSpect. Have

him check that out. It's a non invasive way to find out what's up

with his liver and brand new. He may be able to take that info to the

dr and see if they can use this method on him. From what I understand

it's a blood test. One of the posts has the link for the maker's

website so he can read up on it.

Social Security tends to deny everyone on the first try. Without a

liver biopsy to show how much liver damage he really has, they won't

even think about approval. Be sure to provide SSDI with at least 6

months worth of labs and all tests that have been run on him. Don't

expect the Dr to do this as they usually don't want to and won't go

into as much detail as himself can.

Tell him to hang in there and keep reading up on this! The more he

knows, the better he will be able to be in command of his health care!

LeighAnn

[Guest guest]

Welcone Becky,I hope we can be of some help.

Hugs

Lesli

[Guest guest]

Welcome Judy,

We've had a lot of new members lately. I'm starting to wonder if it isn't as rare as I thought. There should be information on the web about Celebrex being a cox 2 inhibitor anti-inflamatory. Most people that are allergic to anti inflamatories are only allergic to cox 1 anti-inflamatories not cox 2. I take celebrex everyday (for 3 1/2 years now) for my polyps and have not had a reaction. I'm severly allergic to asa, tylenol and cox 1 anti inflamatories. It's worth checking into.

Tami

Just Joined

I am new here and am so glad to find out my problem is real and not a figment of my imagination.

My doctor thought I was crazy when I told him that aspirin was trigging my severe asthma attacks and after doing some researching I am scared to take any of the anti-inflammatory. I have arthritis and aspirin was the only thing that worked for me.

I am going to print out all that I have read and give it to him. I was especially intrigued about aspirin desensitization and may think about doing that.....my son is a nurse so he may be able to help me with it.

I show dogs and am on my feet all day when I go to a dog show and by the time I am done showing my back is hurting so bad it is hard to even move and the pain pills the doctor gave me to take while showing are useless. Tylenol helps but not as well as aspirin did.

Judy Young

GAELIC PRIDE WESTIES

http://gaelicpride.dogbreedersdirectory.com/index.htm

westies@...

Join the GROOMING LIST and learn to groom your own dog

Join Now

[Guest guest]

Interested in knowing how many of us possibly have MS. I go in for an MRI next week to rule it out. Didn't know if there was a link with Samters or not.....

Just Joined

I am new here and am so glad to find out my problem is real and not a figment of my imagination.

My doctor thought I was crazy when I told him that aspirin was trigging my severe asthma attacks and after doing some researching I am scared to take any of the anti-inflammatory. I have arthritis and aspirin was the only thing that worked for me.

I am going to print out all that I have read and give it to him. I was especially intrigued about aspirin desensitization and may think about doing that.....my son is a nurse so he may be able to help me with it.

I show dogs and am on my feet all day when I go to a dog show and by the time I am done showing my back is hurting so bad it is hard to even move and the pain pills the doctor gave me to take while showing are useless. Tylenol helps but not as well as aspirin did.

Judy Young

GAELIC PRIDE WESTIES

http://gaelicpride.dogbreedersdirectory.com/index.htm

westies@...

Join the GROOMING LIST and learn to groom your own dog

Join Now