Re: frustrated

May 17, 1999

Hi,

The sequence sounds about right. Scope/biopsy do elemental diet for 2-3

months and then rescope/biopsy. From my understanding Gastrocrom is for

intestinal eos's not for esophagus eos's. He should be on either something

like Flonase or Steroids (Prednisone or Prelone). What medications is he on

right now besides the gastrocrom (which my son has severe eos's everywhere

and it didn't do a darn thing). Is he on Prilosec or Previcid? Elemental

diet will require a tube of some form unless your child will be willing to

eat something that tastes like ****! Unless you use Neocate juice boxes and

they are still really bad. Especially if he likes to vomit it won't be good

without a tube.

Love,

[eosinophilic gastroenteritis] frustrated

From: garyarm@...

Hi everyone,

I always read all the posts for the board but seldom

post myself because it seems that everyone else is much

worse than my son . But I am very frustrated

today. has EE, and basically no other symptoms

no vomitting, no tummy aches, no reaction to eating food

and no allergies that we can find. His esophagus however

is quite severe. Very inflamed, eosinophils, and recently

been bleeding whenever he does throw up. He is very

stubborn, and tries to make himself throw up when he

is disciplined by gagging and retching ( I think this

is to try to get attention because he knows it upsets

us - he is 7 years old) Well, last night after being

on time out, he made himself throw up and there was

blood in it. He was in the hospital twice in March

for the same thing (overnight for observation).

Does anyone know...Can he have food allergies without

any apparent symptoms? Can he have allergies that don't

show up on rast and skin prick testing? I am assuming

that if it is an allergy it must be something he eats

fairly frequently due to the severity of his esophagus

when they scope/biopsy him.

We are taking him back to the GI in several weeks,

and are going to explore the possibility of putting him

on an elemental diet to see what happens. How hard is

this for an otherwise healthy, active 7 year old?

Would an elemental diet positively rule in or out allergies

as the culprit? How long would he have to be on it to

at least determine without a doubt that allergies are

in fact to blame? I am guessing it would go something like

this... Scope/biopsy him, do the elemental diet for ? weeks,

Scope/biopsy again to see if any improvement. Is that

the correct sequence?

He has been taking Gastrocrom along with his prilosec

now for 4 months.

Thanks for any input, and I truly sympathize with those

of you with young ones with feeding problems.

mom to Nate (8), (7 - EE) and Lance(5)

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May 17, 1999

>Does anyone know...Can he have food allergies without

>any apparent symptoms?

EE is often a symptom of a food allergy... but I have not been able to find

information on whether EE/EG is typically caused by an immediate IgE

mediated response, or an IgG delayed food sensitivity. (anyone know?)

>Can he have allergies that don't

>show up on rast and skin prick testing?

Both the RAST and skin prick only test for the IgE response. If the EE is

caused by an IgG delayed food sensitivity, you wont find it via those tests.

The IgE and IgG are different blood antibodies, and respond to different

foods, and cause different symptoms. For example, my once severe eczema was

mostly caused by numerous IgG food reactions.

While still a personal theory, both my doctor and I have tended to believe

that my internal problems (EG, reflux, colitis, ulcers) might be due to

" internal " eczema. There is no scientific evidence (that we know of) to

suggest this, but the idea that if my outside skin was a bloody wreck due to

food allergens, that my insides could also be responding in a similar

fashion.

How many foods were tested with the RAST and skin prick? My personal

frustration with doctors is they often only test for the ~10 " major "

allergens (wheat, dairy, peanut etc) but often dont test for all allergens

that could be tested for. A blood test method called ELISA can test for

around 100 food types for both a IgE and IgG response. The ELISA test is my

personal favorite (and the preferred method from all the people on the Food

Allergy Survivors Together LIST

(http://www.angelfire.com/mi/FAST/index.html)

In my case, there are a number of foods that cause me IgE and IgG responses

to that have not shown positive in the tests. I only found these by careful

food elimination and observation.

I apologize to those on the list if I ask about your elimination diet

methodology... it is only with care that I ask. I react to very small

traces of foods... I even had to get rid of all my vitamins since they all c

aused problems. Totally eliminating a food is difficult process, and not

many people know how store-bought food is prepared (i.e. most contain common

allergens). I am still on 2 medications (Pepcid & Asacol) and I suspect they

may be contributing to my still (mild but acceptable) eczema.

>I am assuming

>that if it is an allergy it must be something he eats

>fairly frequently due to the severity of his esophagus

>when they scope/biopsy him.

I would tend to agree. Any food reaction symptom that is chronic (daily)

event is probably caused by a food that is ingested on a regular basis.

Could be daily, or could be a food eaten every few days if it is an IgG

reaction.

>>and are going to explore the possibility of putting him

on an elemental diet to see what happens.

If the total food assay panel of 100+ foods have note been tested for both

the IgG and IgE antibodies, I would suggest doing these before the

elimination diet. You may find some allergens, which would be the first

phase of elimination, rather then an a full elimination diet. Even if you

go on a " standard " rotation diet, there still could be foods that you react

to. It's helpful if you go into an elimination diet armed with some

positive test evidence.

>Would an elemental diet positively rule in or out allergies

>as the culprit?

If the problem is food based, then the elimination diet is the first step.

Eosinophils are typcially found with food reactions (also with parasites),

so it is logical to remove the foods. I " suspect " that the EE will

noticably improve if food based... but you never know. I've been on my

very restricted diet for about 1.5 years, and my EG is in remission, but can

be triggered by accidential food-allergen ingestion.

>How long would he have to be on it to

>at least determine without a doubt that allergies are

>in fact to blame?

It's hard to say. There could be relatively immediate response (few days)

or longer (weeks). It varies. But if food allergens are found via testing,

the prudent thing to do is to eliminate them regardless.

> I am guessing it would go something like

>this... Scope/biopsy him, do the elemental diet for ? weeks,

>Scope/biopsy again to see if any improvement. Is that

>the correct sequence?

How long ago was the last scoping? If in the past few months, I would

suggest that this is a good enough base line. No need to go throught the

extra trauma. If food allergens are found via blood testing, stay on the

diet for a few months (in my opinion) and then if positive changes are

noticed, get rescoped to confirm. If there are still symptoms after being

on the elimination diet, it is still a sign that the EE is still there.

>Thanks for any input, and I truly sympathize with those

>of you with young ones with feeding problems.

Me too. Though my comments come from an adult dealing with major food

allergies.

Take care,

Kenny

May 17, 1999

Thanks for the input everyone. is doing fine today

and did not go to the hospital this time after vomitting

blood.

I am going to call and find out exactly what they tested

for with his RAST testing, and ask for/about the ELISA

testing. This is just so hard because he doesn't have

any outwardly visible signs or symptoms that anything

is wrong.

As a matter of fact, we had no idea had any health

probs until he got the flu and started throwing up blood.

That was 2.5 years ago. We always think he is doing

great and then they scope/biopsy and they tell us how

severe it is. It has just been lately (since March) that

he has thrown up blood again. He hasn't done that in 2.5

years. I am guessing right now that the Gastrocrom is

not working. He is also taking Prilosec. I still

wonder if it could possibly be due to reflux since he

doesn't have any other " typical " food allergy symptoms.

However, he passed two 24 hr ph probes with flying

colors. Wondering if it could possibly be " bile reflux " .

Well I am starting to ramble. Thanks again for all

the input/suggestions.

May 17, 1999

Dear Ken-

Thanks for the FAST web site. It is always great to have new places for

info. I know a lot of docs poo-poo the ELISA test, but it was a life saver

for us!!!!!!! AJ was 18 months, losing pounds by the day-literally, only

AWAKE 6 hours a day, gray.....and I was basically getting, you have a

cranky kid. We did the ELISA test without any docs blessings and it came up

with 22 food allergies. A few of the foods, she had never had-alfalfa,

zucchini...,but it gave us a starting point for eliminating foods. We

didn't know about elemental formulas or anything at the time. We saw an

immediate change. It gave us hope and we knew we were on the right track.

I personally believe that some of AJ's EG symptoms are IgG delayed

reactions. It can take a few days before we see an improvement when

eliminating a food or before we realize that AJ is getting into something

she shouldn't. If it were milk, she would have hives immediatly-even from

touching it. It would be a lot easier to figure out if the reactions were

IgE.

Phyllis

mom of AJ (12/22/95) EG, GERD, Allergies a plenty, Asthma, a newly found

hearing loss and speech delay

& Remi (8/3/92) Spina Bifida, Latex, shellfish, nut, peanut, &

alvocado allegies

who was just de-classifed as developmentally delayed (YES)

May 17, 1999

Hi Phyliss,

>Thanks for the FAST web site. It is always great to have new places for

>info.

No problemo. The FAST list is my favorite hang-out. I've learned from the

group, and I am also able to contribute.

> I know a lot of docs poo-poo the ELISA test, but it was a life saver

>for us!!!!!!! ... We did the ELISA test without any docs blessings and it

came up

>with 22 food allergies.

Amazing aint it!? Doctors poo-poo the only test that is fairly accurate.

Mostly this is due to the attitude that food allergies are either begnin, or

psycho-sematic. Nuts! (pun intended) Also, the ELISA test has really

gained reliability in the past few years, and most doctors are not aware of

this yet.

>It gave us hope and we knew we were on the right track.

that's great. And that's what I view the ELISA tests as: a guiding light

to help you get on the right track. Once you discover the first food that

causes an impact, you soon become a beleiver, and quickly become informed,

and tackle the other foods with vigor.

>I personally believe that some of AJ's EG symptoms are IgG delayed

>reactions. .... It would be a lot easier to figure out if the reactions

were

>IgE.

IgG reactions are a little trickier to figure out, but if you keep a good

diary of the foods eaten (quantity, mfg name, other foods eaten etc), and

note any reactions when ever they occur, you should be able to deduce a

causal-effect relationship.

take care,

Kenny

May 18, 1999

,

Absolutely positively I would think you would want to try Flonase FIRST.

Then a short trial (4-8 weeks) of high dose prednisone BEFORE you put

the boy through an elemental diet. The Flonase may just control the

entire picture in and of itself. If not, then prednisone would

certainly prove the whole allergy issue.

Putting a " normal " 7-year-old suddenly on an elemental diet is very very

difficult. My 7.yo is a very laid back kid and still has some trouble

with it. ONce we proved it would work (5 weeks through an NG), we

placed a GT and he didbetter

May 18, 1999

,

WE have 6 affected members with EE in this family. My 11/yo has had an

esophagus as bad as mine since the age of 7. He had very few symptoms

at the time, some mild trouble swallowing.

If you do not control this disease, he can wind up with a seriously

damaged, malfuntioning esophagus. Mine is destroyed, my 11/yo's is very

strictured.

You have to find a solution and PROVE it is working by biopsy.

ood luck

May 18, 1999

Just a little input on the whole allergy issue.

We've done so much testing, on all of us. What we have finally

determined.. is that it simply does not matter what " negative " blood

allergy tests say. If a food causes any symptom, or any symptom occurs

while trying a food -- it's out.

May 18, 1999

In a message dated 5/17/99 6:09:02 PM Pacific Daylight Time,

pmzf@... writes:

<<

Thanks for the FAST web site. It is always great to have new places for

info. I know a lot of docs poo-poo the ELISA test, but it was a life saver

for us!!!!!!! >>

Can someone post that site again, I couldn't get last time.

Thanks,

Cathy

May 18, 1999

>Absolutely positively I would think you would want to try Flonase FIRST.

>Then a short trial (4-8 weeks) of high dose prednisone BEFORE you put

>the boy through an elemental diet. The Flonase may just control the

>entire picture in and of itself. If not, then prednisone would

>certainly prove the whole allergy issue.

>

How does prednisone prove the whole allergy issue?

I have read the talk about flonase. We use a flovent puffer twice a day,

gastrocrom 4x day, and are 8 days scince our last dose of prednisone, which

was tapered down to 1/4 teaspoon day. I can't say how we are doing because

I don't want to jin_ myself. I was never superstitious before. Do you

take the flonase orally? Appreciate any help with this.

Pete

May 19, 1999

In order for Flovent to treat EE, it HAS to be taken orally, in much

larger doses, and NOT followed by water or anything to eat/drink for

15-30 minutes. It works like a topical steroid (will only work where it

lands)so the volume/administration is extremely important.

Flonase is a very safe drug, no metabolism through the liver, none of

the side effects that prednisone has.

If the inflammation (and eos) are from reflux or other sources,

prednisone will NOT help the situation. As a matter of fact, it would

make it worse. If the inflammation is allergy-based, prednisone will

improve (histologically at least) the espohageal biopsies.

October 27, 1999

In a message dated 10/26/1999 9:32:34 AM Central Daylight Time,

juli@... writes:

<< I said this is crazy and ate 6 cookies >>

Juli

I did the same thing the day before yesterday and then woke up in the middle

of the night throwing up. So much for the I'll show you attitude. I didn't

even lose any weight after being ill all night long. So... back to square one

Barbara

May 2, 2002

Deborah,

I almost hate to suggest adding yet another doctor to the mix, but

have you thought about an allergist? For instance, I have an allergy

to adhesive tape, and the rash you describe is what happens to me

with prolonged exposure to adhesive tape. Since you have it all over

your body, I would suspect an allergy to something common, like a

laundry soap or even a food.

I know it's a shot in the dark, but it's all I can think of!

Carol & Rob

Thinking of you in Lexington, MA

PS -- Is liver function normal?

> Hi Everyone, Maybe someone can help me help the doctors figure this

one out.

>

> I am miserable. I am back in the hospital again with a rash

covering my

> body head to toe. I burn and itch. My skin is bright red. My

fingernails

> have almost no color. My muscles hurt and the joints in my body

feel like I

> have been hit with a baseball bat every time I move anything.

>

> So far, CAT scan is normal, chest x-ray is normal, white blood

cell count

> is normal. glucose level is high, iron level low, cholesterol is

high. I

> have been running a temperature up to 103 degrees though my normal

temp is

> 97.4 The infectious disease specialist almost went rounds with

this

> morning when he told that I couldn't have a normal temp of

97.4 and

> that he goes by the standard and 101 is low grade no matter what we

think my

> normal temp is.

>

> Strep culture came back normal.

>

> What should we do? We have an internest and infectious disease

doc that

> has showed up. We have been waiting for 2 days for the

dermatologist and

> neurologist and rhumatologist to show up. This is the 3ed out

break of this

> rash since February. We are at a loss to all of this an I am sick

of

> hurting and itching and being the receipent of any more " I really

don't

> know's " from the docs. Surely there is something that they can do

to

> figure this out! Today marks my 4th hospitalization and my 27th

day in the

> hospital since Dec. 20. Enough is enough.

>

> Deborah

> aka Tenacity

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger:

http://messenger.msn.com

May 2, 2002

Deborah,

I almost hate to suggest adding yet another doctor to the mix, but

have you thought about an allergist? For instance, I have an allergy

to adhesive tape, and the rash you describe is what happens to me

with prolonged exposure to adhesive tape. Since you have it all over

your body, I would suspect an allergy to something common, like a

laundry soap or even a food.

I know it's a shot in the dark, but it's all I can think of!

Carol & Rob

Thinking of you in Lexington, MA

PS -- Is liver function normal?

> Hi Everyone, Maybe someone can help me help the doctors figure this

one out.

>

> I am miserable. I am back in the hospital again with a rash

covering my

> body head to toe. I burn and itch. My skin is bright red. My

fingernails

> have almost no color. My muscles hurt and the joints in my body

feel like I

> have been hit with a baseball bat every time I move anything.

>

> So far, CAT scan is normal, chest x-ray is normal, white blood

cell count

> is normal. glucose level is high, iron level low, cholesterol is

high. I

> have been running a temperature up to 103 degrees though my normal

temp is

> 97.4 The infectious disease specialist almost went rounds with

this

> morning when he told that I couldn't have a normal temp of

97.4 and

> that he goes by the standard and 101 is low grade no matter what we

think my

> normal temp is.

>

> Strep culture came back normal.

>

> What should we do? We have an internest and infectious disease

doc that

> has showed up. We have been waiting for 2 days for the

dermatologist and

> neurologist and rhumatologist to show up. This is the 3ed out

break of this

> rash since February. We are at a loss to all of this an I am sick

of

> hurting and itching and being the receipent of any more " I really

don't

> know's " from the docs. Surely there is something that they can do

to

> figure this out! Today marks my 4th hospitalization and my 27th

day in the

> hospital since Dec. 20. Enough is enough.

>

> Deborah

> aka Tenacity

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger:

http://messenger.msn.com

May 2, 2002

Deborah,

I almost hate to suggest adding yet another doctor to the mix, but

have you thought about an allergist? For instance, I have an allergy

to adhesive tape, and the rash you describe is what happens to me

with prolonged exposure to adhesive tape. Since you have it all over

your body, I would suspect an allergy to something common, like a

laundry soap or even a food.

I know it's a shot in the dark, but it's all I can think of!

Carol & Rob

Thinking of you in Lexington, MA

PS -- Is liver function normal?

> Hi Everyone, Maybe someone can help me help the doctors figure this

one out.

>

> I am miserable. I am back in the hospital again with a rash

covering my

> body head to toe. I burn and itch. My skin is bright red. My

fingernails

> have almost no color. My muscles hurt and the joints in my body

feel like I

> have been hit with a baseball bat every time I move anything.

>

> So far, CAT scan is normal, chest x-ray is normal, white blood

cell count

> is normal. glucose level is high, iron level low, cholesterol is

high. I

> have been running a temperature up to 103 degrees though my normal

temp is

> 97.4 The infectious disease specialist almost went rounds with

this

> morning when he told that I couldn't have a normal temp of

97.4 and

> that he goes by the standard and 101 is low grade no matter what we

think my

> normal temp is.

>

> Strep culture came back normal.

>

> What should we do? We have an internest and infectious disease

doc that

> has showed up. We have been waiting for 2 days for the

dermatologist and

> neurologist and rhumatologist to show up. This is the 3ed out

break of this

> rash since February. We are at a loss to all of this an I am sick

of

> hurting and itching and being the receipent of any more " I really

don't

> know's " from the docs. Surely there is something that they can do

to

> figure this out! Today marks my 4th hospitalization and my 27th

day in the

> hospital since Dec. 20. Enough is enough.

>

> Deborah

> aka Tenacity

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger:

http://messenger.msn.com

May 2, 2002

Deborah,

What antibiotic do they have you on? You may be allergic to the antibiotic. I

broke out horribly from Bactrim a sulfa drug, which is commonly used for UTI's.

Did they check you for blood infection, and a UTI? Did they check you for a

yeast infection? The pain you mention sounds like a flu.

Most doctor's feel that temperatures above 100 deg are the same for normal or

autonomic failure patients so the doctor is telling you correctly there, it is

only a temperature of around 99-100 deg that is abnormal for MSA patients.

Hang in there, Bill Werre

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

Deborah Setzer wrote:

> Hi Everyone, Maybe someone can help me help the doctors figure this one out.

>

> I am miserable. I am back in the hospital again with a rash covering my

> body head to toe. I burn and itch. My skin is bright red. My fingernails

> have almost no color. My muscles hurt and the joints in my body feel like I

> have been hit with a baseball bat every time I move anything.

>

> So far, CAT scan is normal, chest x-ray is normal, white blood cell count

> is normal. glucose level is high, iron level low, cholesterol is high. I

> have been running a temperature up to 103 degrees though my normal temp is

> 97.4 The infectious disease specialist almost went rounds with this

> morning when he told that I couldn't have a normal temp of 97.4 and

> that he goes by the standard and 101 is low grade no matter what we think my

> normal temp is.

>

> Strep culture came back normal.

>

> What should we do? We have an internest and infectious disease doc that

> has showed up. We have been waiting for 2 days for the dermatologist and

> neurologist and rhumatologist to show up. This is the 3ed out break of this

> rash since February. We are at a loss to all of this an I am sick of

> hurting and itching and being the receipent of any more " I really don't

> know's " from the docs. Surely there is something that they can do to

> figure this out! Today marks my 4th hospitalization and my 27th day in the

> hospital since Dec. 20. Enough is enough.

>

> Deborah

> aka Tenacity

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger: http://messenger.msn.com

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

May 2, 2002

Deborah,

What antibiotic do they have you on? You may be allergic to the antibiotic. I

broke out horribly from Bactrim a sulfa drug, which is commonly used for UTI's.

Did they check you for blood infection, and a UTI? Did they check you for a

yeast infection? The pain you mention sounds like a flu.

Most doctor's feel that temperatures above 100 deg are the same for normal or

autonomic failure patients so the doctor is telling you correctly there, it is

only a temperature of around 99-100 deg that is abnormal for MSA patients.

Hang in there, Bill Werre

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

Deborah Setzer wrote:

> Hi Everyone, Maybe someone can help me help the doctors figure this one out.

>

> I am miserable. I am back in the hospital again with a rash covering my

> body head to toe. I burn and itch. My skin is bright red. My fingernails

> have almost no color. My muscles hurt and the joints in my body feel like I

> have been hit with a baseball bat every time I move anything.

>

> So far, CAT scan is normal, chest x-ray is normal, white blood cell count

> is normal. glucose level is high, iron level low, cholesterol is high. I

> have been running a temperature up to 103 degrees though my normal temp is

> 97.4 The infectious disease specialist almost went rounds with this

> morning when he told that I couldn't have a normal temp of 97.4 and

> that he goes by the standard and 101 is low grade no matter what we think my

> normal temp is.

>

> Strep culture came back normal.

>

> What should we do? We have an internest and infectious disease doc that

> has showed up. We have been waiting for 2 days for the dermatologist and

> neurologist and rhumatologist to show up. This is the 3ed out break of this

> rash since February. We are at a loss to all of this an I am sick of

> hurting and itching and being the receipent of any more " I really don't

> know's " from the docs. Surely there is something that they can do to

> figure this out! Today marks my 4th hospitalization and my 27th day in the

> hospital since Dec. 20. Enough is enough.

>

> Deborah

> aka Tenacity

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger: http://messenger.msn.com

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

May 2, 2002

Deborah,

What antibiotic do they have you on? You may be allergic to the antibiotic. I

broke out horribly from Bactrim a sulfa drug, which is commonly used for UTI's.

Did they check you for blood infection, and a UTI? Did they check you for a

yeast infection? The pain you mention sounds like a flu.

Most doctor's feel that temperatures above 100 deg are the same for normal or

autonomic failure patients so the doctor is telling you correctly there, it is

only a temperature of around 99-100 deg that is abnormal for MSA patients.

Hang in there, Bill Werre

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

Deborah Setzer wrote:

> Hi Everyone, Maybe someone can help me help the doctors figure this one out.

>

> I am miserable. I am back in the hospital again with a rash covering my

> body head to toe. I burn and itch. My skin is bright red. My fingernails

> have almost no color. My muscles hurt and the joints in my body feel like I

> have been hit with a baseball bat every time I move anything.

>

> So far, CAT scan is normal, chest x-ray is normal, white blood cell count

> is normal. glucose level is high, iron level low, cholesterol is high. I

> have been running a temperature up to 103 degrees though my normal temp is

> 97.4 The infectious disease specialist almost went rounds with this

> morning when he told that I couldn't have a normal temp of 97.4 and

> that he goes by the standard and 101 is low grade no matter what we think my

> normal temp is.

>

> Strep culture came back normal.

>

> What should we do? We have an internest and infectious disease doc that

> has showed up. We have been waiting for 2 days for the dermatologist and

> neurologist and rhumatologist to show up. This is the 3ed out break of this

> rash since February. We are at a loss to all of this an I am sick of

> hurting and itching and being the receipent of any more " I really don't

> know's " from the docs. Surely there is something that they can do to

> figure this out! Today marks my 4th hospitalization and my 27th day in the

> hospital since Dec. 20. Enough is enough.

>

> Deborah

> aka Tenacity

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger: http://messenger.msn.com

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

May 2, 2002

Many many medications do to me exactly what you are describing. Some of the

main ones are penicillin, codene and sulfa. The interesting thing is that

most other drugs have a pinch of sulfa as their binding agent. Thus we have

to really watch how much sulfa there might be to hold the medications

together. I like you have spent time in the hospital getting over severe

reactions. One time I spent an entire week trying to get over a reaction to

decadron. At that point doctors were giving decadron to relieve alergic

reactions. Not for me.

My comments are only to say that it might be some little portion of

medication that no one else has a problem with.

Good luck. Allergic reactions to medications can be worse than the illness.

Marilyn in TN

May 2, 2002

Many many medications do to me exactly what you are describing. Some of the

main ones are penicillin, codene and sulfa. The interesting thing is that

most other drugs have a pinch of sulfa as their binding agent. Thus we have

to really watch how much sulfa there might be to hold the medications

together. I like you have spent time in the hospital getting over severe

reactions. One time I spent an entire week trying to get over a reaction to

decadron. At that point doctors were giving decadron to relieve alergic

reactions. Not for me.

My comments are only to say that it might be some little portion of

medication that no one else has a problem with.

Good luck. Allergic reactions to medications can be worse than the illness.

Marilyn in TN

May 2, 2002

Many many medications do to me exactly what you are describing. Some of the

main ones are penicillin, codene and sulfa. The interesting thing is that

most other drugs have a pinch of sulfa as their binding agent. Thus we have

to really watch how much sulfa there might be to hold the medications

together. I like you have spent time in the hospital getting over severe

reactions. One time I spent an entire week trying to get over a reaction to

decadron. At that point doctors were giving decadron to relieve alergic

reactions. Not for me.

My comments are only to say that it might be some little portion of

medication that no one else has a problem with.

Good luck. Allergic reactions to medications can be worse than the illness.

Marilyn in TN

May 2, 2002

Hi Deborah,

Anne had something similar two years ago. It started with red itching

bubbles and we thought it was due to the blankets in the hospital (type of

washing powder). She was there because she had some examinations. After she

came home again, the bubbles started to burst and developed a maturing skin.

After a green liquid started leaking from her legs I could convince the

doctor to get her to a dermatologist. When I brought her in, the

dermatologist asked me wether my mother had this for a longer period. She

was rinkled as an old lady. The doc took a biopt, but couldn't guess what it

was up ubtil now. Also her fingernails and toenails envolved. They seem to

get horned. Twice to triple the thickness as normal. Just like claws. The

doc gave her some oily stuff to get her self rubbed with it and a medicin

called Tavegil. Tavegil she is using up until now and prevents the itching

and rash showing up again. I don't remember the name of the oily stuff, but

I can make inquiries if you like.

Hold on,

Timo

Frustrated

> Hi Everyone, Maybe someone can help me help the doctors figure this one

out.

>

> I am miserable. I am back in the hospital again with a rash covering my

> body head to toe. I burn and itch. My skin is bright red. My

fingernails

> have almost no color. My muscles hurt and the joints in my body feel like

I

> have been hit with a baseball bat every time I move anything.

>

> So far, CAT scan is normal, chest x-ray is normal, white blood cell

count

> is normal. glucose level is high, iron level low, cholesterol is high. I

> have been running a temperature up to 103 degrees though my normal temp is

> 97.4 The infectious disease specialist almost went rounds with

this

> morning when he told that I couldn't have a normal temp of 97.4 and

> that he goes by the standard and 101 is low grade no matter what we think

my

> normal temp is.

>

> Strep culture came back normal.

>

> What should we do? We have an internest and infectious disease doc that

> has showed up. We have been waiting for 2 days for the dermatologist and

> neurologist and rhumatologist to show up. This is the 3ed out break of

this

> rash since February. We are at a loss to all of this an I am sick of

> hurting and itching and being the receipent of any more " I really don't

> know's " from the docs. Surely there is something that they can do to

> figure this out! Today marks my 4th hospitalization and my 27th day in

the

> hospital since Dec. 20. Enough is enough.

>

> Deborah

> aka Tenacity

>

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May 2, 2002