(No subject)

[Guest guest]

I also get blank emails from e...

[Guest guest]

Just an FYI: the test was most likely a "peak flow" done with what is called a peak flow meter. She should have scored probably about 300 based on her size.The score also depends on how well she was able to blow out. Sometimes less is ok, judging by size. This is a test kids with asthma do frequently (at least my son does when his asthma is flaring). As they get older obviously the base reading gets higher. If she is wheezing or having trouble breathing, she should probably get an albuterol inhaler (she is old enough to use one). This drug will dialate the bronchial tubes and relieve the cough and help her breathe. Even if she is just coughing alot without the wheezing etc., she can use one. My daughter, while not diagnosed with asthma exactly, gets a hacking cough whenever she is recovering from an upper respitory cold. She takes two puffs on the inhaler (with dr ok, of course) and it really helps her. Just some info for you, Michele

-----Original Message-----From: KAmitchemalways@... [mailto:KAmitchemalways@...] Sent: Tuesday, March 12, 2002 2:05 PM Subject: (no subject)I wrote to you all and ask about a cough that my daughter has been having and has had in the past. Her ped. wanted to see her so I took her in. Again, she has inflammation in her lungs and is now on a 5 day supply of prednisone. I so happen to know our pharmacist pretty well and I told him what all has been going on with her. He looked up MTX and he feels that her problems are stemming from the MTX. When I asked her ped. about this, he didn't feel the same. I plan on contacting the rheumy tomorrow and let him know what all is going on. When she was given some breathing test (can't recall the name of it) at the doctors office she only has 2/3 of her lung functioning and her "score" was a 140. According to the parmacist she should have scored at least a 300. Of course, I don't know for sure what all of this means. Anyway, this is where we stand for now. Thanks for the input that you all sent. It was helpf;ul in asking the right questions.

[Guest guest]

Tabithas pedy rheumy has stated to me before that this can be caused by

methotrexate..plus can cause a dry cough. Make sure you stress this to the

doctor..

good luck

karen(tab17..poly)

From: KAmitchemalways@...

Reply-

Subject: (no subject)

Date: Tue, 12 Mar 2002 15:05:22 EST

I wrote to you all and ask about a cough that my daughter has been having

and

has had in the past. Her ped. wanted to see her so I took her in. Again,

she has inflammation in her lungs and is now on a 5 day supply of

prednisone.

I so happen to know our pharmacist pretty well and I told him what all has

been going on with her. He looked up MTX and he feels that her problems are

stemming from the MTX. When I asked her ped. about this, he didn't feel the

same. I plan on contacting the rheumy tomorrow and let him know what all is

going on. When she was given some breathing test (can't recall the name of

it) at the doctors office she only has 2/3 of her lung functioning and her

" score " was a 140. According to the parmacist she should have scored at

least a 300. Of course, I don't know for sure what all of this means.

Anyway, this is where we stand for now. Thanks for the input that you all

sent. It was helpf;ul in asking the right questions.

_________________________________________________________________

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

[Guest guest]

This amy still be pluerisy (inflamation of lining of the lung) It often very hard to take a deep breath and in that case you breath very shallow and so she would not ahave been able to get a 300. As her to take a very large breath as deep as she can and see if she comes that it hurts around he side , anywhere by the rib cage, even in the back. It once took me about six months of pred. treatment to finally kick the pluerisy. It's just like the arthritis has settled their instead of a joint. An interist may be the doctor to better diagnose.. if rhuemmy is not sure. :):)good luck my prayers are with you both for a speedy diag. and recovery :):)Tree:):) (no subject) I wrote to you all and ask about a cough that my daughter has been having and has had in the past. Her ped. wanted to see her so I took her in. Again, she has inflammation in her lungs and is now on a 5 day supply of prednisone. I so happen to know our pharmacist pretty well and I told him what all has been going on with her. He looked up MTX and he feels that her problems are stemming from the MTX. When I asked her ped. about this, he didn't feel the same. I plan on contacting the rheumy tomorrow and let him know what all is going on. When she was given some breathing test (can't recall the name of it) at the doctors office she only has 2/3 of her lung functioning and her "score" was a 140. According to the parmacist she should have scored at least a 300. Of course, I don't know for sure what all of this means. Anyway, this is where we stand for now. Thanks for the input that you all sent. It was helpf;ul in asking the right questions.

[Guest guest]

> 15 Things You Probably Never Knew or Thought About

1. At least 5 people in this world love you so much they would die for you.

2. At least 15 people in this world love you in some way.

3. The only reason anyone would ever hate you is because they want to be just

like you.

4. A smile from you can bring happiness to anyone, even if they don't like

you.

5. Every night, SOMEONE thinks about you before they go to sleep.

6. You mean the world to someone.

7. If not for you, someone may not be living.

8. You are special and unique.

9. Someone that you don't even know exists loves you.

10. When you make the biggest mistake ever, something good comes from it.

11. When you think the world has turned its back on you, take a look: you

most likely turned your back on the world.

12. When you think you have no chance of getting what you want, you probably

won't get it, but if you believe in yourself, probably,sooner or later, you

will get it.

13. Always remember the compliments you received. Forget about the rude

remarks.

14. Always tell someone how you feel about them; you will feel much better

when they know.

15. If you have a great friend, take the time to let them know that they are

great. Send this letter to all the people you care about, Including the

person who sent this to you. If you do so, You will certainly brighten

someone's day and might change their perspective on life, for the better.

[Guest guest]

Exactly - some teachers have been threatened before about their jobs. I went

to Asst Prinicpal and told him my challenge was friendly. I promised myself

to bring this up so no one else would have to go through this

[Guest guest]

, glad to hear from you. You know, you COULD contact OSH and have them look into the situation with all of the autoimmune problems. We think at our school, we have mold which has caused us to be very ill. But, like you, we are fearful to call them for fear of having repercussions of calling them. Even though it is supposed to be anonymous, it never is....but good luck!

debby

[ ] (no subject)

Hello one and all,I know you guys think I have forgotten you. I havent. I have been so busy since I returned to Montana andto my job at the high school. I am directing Dancing at Lughnasa, and If I can blow my own horn, it is my best work yet. And yes, , I am so tired in the evenings. The doctors are weeking me off the prednisone. 40mg to 30mg to 20 mg - now to 10mg. The jump from 20 to 10 was especially harsh. I feel lethargic and I am now gaining the weight that I thought I would be gaining at the beginning. So far blood work looks good. I have blood drawn again on Monday.ANother thing I have noticed either because of my illness and all the emotional tags associated or the prednisone itself is that I dont ake crap from anyone anymore. Not that I did before. But I have really challenged my adminstrators about the safety of our building as well as other unimportant issues. I have just been approached about taking over for next year the head of the speech team. Our present head speech coach is stepping down because - YOU GUESSED IT - her autoimmune disease has reemerged. All in all, I am feeling better than I have in a long time. I thank everyone once again for their strength and encouragement when things were bleak. When summer is here and I am more idle I hope to be a better support member than I have recently.XO(dx AIH 1/02)

[Guest guest]

Good for you!

I have noticed the same effect with the

prednisone or the realization that I have this disease and to make the most of

everything, every day. I found myself telling it like it is and I felt good

about it too! No more meek mouse me!

[ ] (no

subject)

Hello one and all,

I know you guys think I have forgotten you.

I havent. I have been so busy

since I returned to Montana andto my job at the

high school. I am directing

Dancing at Lughnasa, and If I can blow my own

horn, it is my best work yet.

And yes, , I am so tired in the

evenings. The doctors are weeking me

off the prednisone. 40mg to 30mg to 20 mg -

now to 10mg. The jump from 20

to 10 was especially harsh. I feel lethargic

and I am now gaining the weight

that I thought I would be gaining at the

beginning. So far blood work looks

good. I have blood drawn again on Monday.

ANother thing I have noticed either because of my

illness and all the

emotional tags associated or the prednisone itself

is that I dont ake crap

from anyone anymore. Not that I did

before. But I have really challenged my

adminstrators about the safety of our building as

well as other unimportant

issues. I have just been approached about

taking over for next year the head

of the speech team. Our present head speech

coach is stepping down because -

YOU GUESSED IT - her autoimmune disease has

reemerged.

All in all, I am feeling better than I have in a

long time. I thank

everyone once again for their strength and

encouragement when things were

bleak. When summer is here and I am more

idle I hope to be a better support

member than I have recently.

XO

(dx AIH 1/02)

[Guest guest]

Welcome Amy,

I am sorry you are having so many things going wrong. I am newly

diagnosed with AIH in March, and also have M.S. and underactive

thyroid. I don't have tremors exactly but I have noticed shakiness

in my hands making it difficult to write and hold on to things. I am

wondering if for me is a side effect of meds. I take 40 mg of

predisone, and 50 mg of azathioprine. I hope you stay with us there

are some great people who really care and I tremendous help in

understanding AIH and other liver diseases.

Take Care,

Ruth

> Greetings from Renton, WA. We are just southeast of Seattle.

My name is

> Amy, I'm married to Dave and have 2 adult children, Carl 23 and

21, who

> are living at home at the moment.

>

> I was dx with AIH in the spring of 1998 because the dr who took

my gall

> bladder out during emergency surgery saw that I had cirrhosis.

About 2 years

> before that I had been diagnosed with Sjogrens Syndrome

(autoimmune) with

> lupus markers. My lupus has since been declared " official " . In

Feb. 2000 I

> was hospitalized for spontaneous bacterial peritonitis. This fall

after a

> lupus flare which was being difficult to treat, I developed

multiple

> infections which also were helped along by my liver disease. So I

also had a

> more severe bout with encephalopathy and acites that kept going

into my lung

> lining. Since then I have had another bout of peritonits but not

as severe.

> I have been placed on the transplant list but I don't know my MELD

number yet

> - I'm not sure it's too high because my liver tests have constantly

remained

> only mildly elevated.

>

> Anyway, so that's my story - sounds similar to many of yours

that I have

> been reading over the past few weeks. I have enjoyed the banter

and

> appreciated " listening in " - it helps validate what I've been going

through.

>

> I haven't been working since November and don't seem to be able

to build

> any stamina up like I did 2 years ago. I am a first grade teacher,

so it was

> very hard to have such a rough fall and leave " my babies " to a

series of

> substitutes until it was apparent that I really wouldn't be back

soon!

>

> I have lots of questions as we all do but I am interested in

those who

> have had tremors. What did they look like? I have tremors that

get worse

> and better in both hands and up my left arm - a palsy type tremor.

My drs

> think it might be the meds and one said that liver tremors were of

a hand

> waving type. Any experiences you have had would be interesting.

>

> Take care:)

> Amy

[Guest guest]

This may apply to your autistic/seizure prone child, take note

Kathy

(no subject)

Scientists Warns 'No-Phenol' Digestive Enzymes 'Dangerous' Autism Treatment

Enzymes, amino acids and phenol in autism

[The giving of digestive enzymes that purport to mediate the effects of

gluten and casein in the diet of one's autistic child is the current trend

du jour in the autism community by many parents. This is readily witnessed

by the mercurial rise of enzymes and autism oriented email groups on the

Internet, replacing the spot once enjoyed by secretin. Dr. Jon Pangborn is

an early creator of such products, now being marketed by Kirkman Labs,

Klaire Labs and a newer company, Houston Labs. In a commentary in the

current Autism Research Review International, Pangborn issues a warning on

the risks of a new " enzyme supplement that destroys all dietary phenols " -

the kind recently introduced by Houston Labs, apparently.

Dietary supplements are not government regulated. The consumer relies

on a company's reputation, and the word-of-mouth endorsements of other

consumers to gauge product safety and efficacy.

So, especially in such an environment of lesser science, dire warnings

issued by an industry scientist must be taken seriously, and so this one is

presented here.

In an article in the same publication that accompanies this warning

entitled " Autism, digestive enzymes, the Internet, and fraud " , Dr. Bernard

Rimland, founder of the Autism Research Institute and the DAN! Conferences

goes into detail on the unseemly underside of this business. Excerpts of

that expose appear following this article. Immediately below is the full

text of Dr. Pangborn's warning and contains technical language.

FEAT has no independent means for evaluating this warning, nor the

comments made by Dr. Rimland following. The material is reproduced here

without endorsement, as clippings for the readers' information only. -LS]

One purpose for providing special digestive enzymes is to aid the

complete breakdown of dietary proteins and peptides into single, free-form

amino acids. An objective is to reduce or nearly eliminate harmful peptides

that can act as false neurotransmitters and disregulators of immune

response. For this objective, both dietary restrictions and enzyme

supplementation are advisable.

Free-form amino acids can be easily absorbed and utilized in body

tissues. Each then has work to do in the body. The amino acid tyrosine is

needed for formation of thyroglobulin, catecholamines hormones (dopamine,

noradrenalin), melanin pigment molecules, and other essential metabolites.

When tyrosine is deficient, thyroid functions, mood, behavior and attitude

can be affected as can rest and sleep patterns and cognitive abilities.

Tyrosine is a phenol; simply stated, it is phenol-alanine

(4-hydroxyphenylalanine). While some phenols, such as pentachlorophenol, can

inhibit sulfation, other phenol molecules, especially tyrosine, are

essential to human life. In this author’s opinion, it is absolutely wrong to

provide an enzyme supplement that destroys all dietary phenols. A “no-phenol

regimen†invites metabolic disorder, especially for individuals who may have

problems with tyrosine adequacy.

Many autistics do seem to have a problem in this area. They do not

make enough tyrosine from its essential precursor, phenylalanine, and they

then depend much more heavily on dietary tyrosine. In fact, individuals with

disordered phenylalanine metabolism and deficient tyrosine were among the

first to have a metabolic explanation for their autism. A product that

destroys the phenol tyrosine is certain to be harmful or dangerous to such

individuals. I emphatically urge that any such product not be used for human

consumption.

—Jon Pangborn, Ph.D., F.A.I.C.

* * *

Autism, Digestive Enzymes, The Internet, And Fraud

[This is by Dr. Bernard Rimland and appears in the current Autism

Research Review International newsletter. It accompanies the article above

which gives warning to " No-Phen " digestive enzymes as treatment for autistic

children. These comments are the author's only and are not necessarily the

opinions of FEAT. The material is presented here for the reader's

information only.]

www.autismresearchinstitute.com

The Internet has become a major source of information on many

subjects, including autism. The information ranges all the way from good,

useful and reliable, through well intentioned but incorrect or partially

correct, to postings that are fraudulent and potentially harmful.

During the past few months many friends have called my attention to

what appears to be an Internet scam, operated by people with questionable

ethics, which may harm autistic children or their families both physically

and financially.

The Enzymes for Autism Story. Best to start quite a bit earlier: As

long ago as the 1960s I began to hear from parents whose autistic children

improved remarkably when put on a strict dairy-free or wheat-free diet.

Solid research—often reported on these pages—supported the parents’

observations and provided an understanding of why the diet worked. The

casein in dairy products and the gluten in wheat (and other grains) were not

properly digested by autistic children. Peptides, very small fractions of

these foods, escaped through the intestinal wall, into the bloodstream and

disrupted the brain.

In January 1995, pediatrician Sid Baker, chemist (and fellow parent)

Jon Pangborn and I convened the first Defeat Autism Now! (DAN!) think tank

of 30 carefully chosen physicians and scientists to jump-start the

agonizingly slow pace of productive research in autism. Unraveling the

mysteries of the gluten/casein free (gf/cf) diet was a top priority. It was

hard for mothers to maintain such a diet, since even tiny amounts of casein

or gluten could be severely disruptive to the child’s behavior. Since our

group included the world’s top experts, I was eager to ask a question I had

been saving for the occasion:

“How about digestive enzymes?†Jon Pangborn had long considered the

problem.

“The trouble with digestive enzymes is that they are mostly proteases,

designed to break down proteins. Our problem is breaking down the smaller

particles, the peptides.â€

“Can’t we design and produce peptidase enzymes that will break down

peptides?†I asked. Jon thought a moment and said “Yes, I think it can be

done.†“Let’s do it†I said. “The ARI will fund your efforts.â€

Using our Institute’s funds, supplemented by his own money, Jon

designed the chemical structure of the needed peptidase enzymes, and then

undertook a worldwide search for companies that could manufacture the

product to his specifications.

In 1996, Farr, whom I had known for 30 years, the owner of

Klaire Laboratories, a small manufacturer of high-quality hypoallergenic

supplements, joined the project, investing her funds and expertise in the

effort, even though sales of the product were expected to be miniscule.

(This was long before the coming autism epidemic was recognized.) She

assigned her top aide, Ilene Buchholz, R.N., to assist in the project.

Several firms were contacted in a search for a palatable, effective

embodiment of Jon’s formula. One of these was the National Enzyme Company,

which specializes in such products. On September 18, 1998, Ilene’s records

show, she spoke with representatives of National Enzymes, then sent them a

sheaf of Jon’s technical papers and specifications.

The product produced by National Enzymes was promising enough to

warrant a field tryout. Ilene recruited six careful and competent

pediatricians with whom she had worked closely in the past to provide

medical supervision of the tryout of the new product, which Klaire Labs

named SerenAid. Special evaluation forms designed by ARI were completed

weekly for each child and collected and compiled by ARI. The purpose of

SerenAid was not to replace the gf/cf diet, but to provide a safety net, so

the small amounts of gluten and casein that escaped the mother’s

surveillance could be digested. SerenAid was a success. The children showed

significant improvement. Jon announced the positive findings at our 1999

DAN! Conference in Cherry Hill, New Jersey.

Although Jon and I (especially Jon) were the inventers, we did not apply for

a patent. We each had several patents, but this invention was to be a gift

to our fellow parents.

In the meantime, Farr sold Klaire Laboratories and retired. Ilene

went to work for Kirkman Laboratories, which, at my request, had started

making a flavored vitamin B6 product in 1967, when there was almost no

market for the product. Kirkman hired Jon as a consultant and soon began

producing and medically field-testing its own enzyme product, named

EnzymAid.

[…] What really concerns me is the No-Fenol product the chemist has

started selling to parents of autistic children, skillfully marketed by his

agent. When Jon Pangborn—probably the world’s top expert on the biochemistry

of autism—learned of No-Fenol, he was alarmed. “This could be very

harmful!â€

he told me. Sure enough, mothers are now reporting to the chat room that

their children are experiencing side effects including extreme

hyperactivity, aggression, hot flushed face and ears, profuse sweating,

bedwetting, and constipation or diarrhea.

+The full article appears the ARI website: www.autismresearchinstitute.com.

_______________________________________________________

[Guest guest]

Ok, these are offically on my refrigerator! I will read them often. Thank

you, Carolyn

[Guest guest]

Generalized itching is common with HCV

Blessed Be....Peace, Laurie

[ ] (no subject)

Can anyone tell me about HCV and this generalized itching.

[Guest guest]

Thank you, people told me that EPO and Flaxseed increase or induce seizures.

do you have any sites I can go to, for more information.

Thank you

Lori

[Guest guest]

Lori- my daughter is 5 and has epilepsy-petit mal seizures. She was having

165 daily and we put her on Evening primrose oil and it reduced her seizures

to 80 than we added fish oil(omega 3) and she went down to 40. she is now on

EPO, fish oil- codliver- and flax seed oil. She is doing great and we took

her off of all the AEDs too.

Feel free to call me at 702-655-3042

-- [ ] (no subject)

Question does any parents give there children Flaxseed Oil?

Does anyone take it that has " E " ?

Does anyone know if Omega 6 can induce seizures?

My son has been constipated and I wanted to try flaxseed oil, with helping

constipation it will help with many other things, but I wasn't sure on the

omega 6

thanks

lori

[Guest guest]

Dear Lori,

It's not unusual for a doctor to do a follow-up MRI one year later to be sure

that there are no changes occuring in the brain. Usually, this is a

preventative measure to rule out a progressive disease pattern, or something

that may be changing within the brain. I wouldn't worry about it until you hear

something concrete.

The MRS should just give a more in-depth look, and hopefully, will also rule out

certain problems.

Please let us know how these tests go and what results you receive. It is my

sincere hope that these will ease your mind, rather than reveal a bigger

problem.

Best wishes,

Carrol

PL9071@... wrote:Hi

I was wondering if someone could help, Will's metabolic doctor has schedule

him for an MRI (which he already and it was normal) and MRS? Is there any

chance that and MRI would be normal one year and Abnormal the next? What

should I expect from the MRS?

Thanks

Lori

[Guest guest]

Dear Lori,

I use flaxseed oil on a fairly regular basis, but I haven't noticed any

difference with my seizures, pro or con. There is a group that touts the

healing benefits of flaxseed oil and cottage cheese, relative to fighting

cancer. Apparently there is a large tome of personal testimonies about how

flaxseed oil and cottage cheese helped to heal the brains in these individuals.

Flaxseed oil, like any other nutrient, prescription or supplement, will have

different affects on different people. It might be a good idea to be certain

there is no allergy present before you use it.

There are also resources that suggest that Omega 3 oils are highly beneficial to

brain tissue.

One thought I had, regarding your post was that using nuts and seeds, in their

whole forms would help to provide the healthy oils and fiber that will aid in

reducing constipation. So many AED's cause intestinal distress that a little

extra help in this area might be a benefit.

I know this isn't much, but I hope it helps in some small way.

Best wishes,

Carrol

PL9071@... wrote:Question does any parents give there children Flaxseed

Oil?

Does anyone take it that has " E " ?

Does anyone know if Omega 6 can induce seizures?

My son has been constipated and I wanted to try flaxseed oil, with helping

constipation it will help with many other things, but I wasn't sure on the

omega 6

thanks

lori

[Guest guest]

Thank you everyone for all your comforting words. I will let everyone know

when we go for these test (in Sept).

thank you so much

Lori

[Guest guest]

HEY DAVID!!! I wondered how you were doing! We were up in that neck of the woods this past summer...a bit away from Bozeman, but hit the western side of the state.

I am on the 5 mg of prednisone. I feel really crappy on it. Truly your description of the unenergized bunny is correct! I too have that problem!

I have not been feeling good at all this weekend. I cannot move, I put my fingers on the keyboard and just try to spread them as best I can becuase it is so painful. I hurt in my middle like everything! Every one of my joints screams with pain this weekend. I was well acquainted with the "porcelain god" on Saturday morning. The splitting headache was more than I could take. It is much better now, but at least it is not hurting so badly! I can at least walk. But the sweats and shakes were a tad more than I wanted to deal with.

I just completed my first week back at school. I spent a lot of energy with the kids and went to the gym twice last week. Perhaps that was why I am sick this weekend. I must gather myself for tomorrow is another day with the children! I am planning on working each and every day this year, God willling!

How is school going now? Hopefully, you are doing OK....be certain to pace yourself. I guess I overdid it last week and am going to slow down. Just hope this pain goes away!

Debby

[ ] (no subject)

Hiya! It has been awhile since I have sent mail. Ever since my doctor started me on 40mg of prednisone and returned me back to Montana and to my teaching position I have been working at break-neck speed. However, we are now down to 5mg and I truly have become the Un-Energizer bunny. I am suffering sleepless nights - I sleep - Im just not rested in the morning. I feel listless and non-motivated. I ache and my stomach is like an accordian they way it expands and delates. I was so worried about the weight I gained and I weighed and I actually lost 5 pounds (but feel 25 pounds heavier). For those of you who are on the last 5mg plan - are these similar cries. I thought all the prednisone horrors would come at the beginning as my body was being ravaged by the wonder drug. But the 5mg has knocked the wind out of my sails. I do have a new puppy and that has been a tremendous comfort, Bozeman, Mt dx AIH 2/02

[Guest guest]

Dear ,

I feel tired, not sleepy, on 5 mg pred and 2.5 mg pred every other

day. I rest a lot, and it seems my energy starts coming in after 4:00 pm till midnight. Gee

that’s about when it’s time to go home from work!

I feel bloated too, on and off. I will ask

my doctor about it Tues. If its normal? I wonder if we

are at risk for West Nile virus because we are on these immunosuppressants.

Hope you feel better soon!

P.S. My cousin lived in Bozeman too!

[ ] (no

subject)

Hiya! It has been awhile since I have sent

mail. Ever since my doctor

started me on 40mg of prednisone and returned me

back to Montana and to my

teaching position I have been working at

break-neck speed. However, we are

now down to 5mg and I truly have become the

Un-Energizer bunny. I am

suffering sleepless nights - I sleep - Im just not

rested in the morning. I

feel listless and non-motivated. I ache and

my stomach is like an accordian

they way it expands and delates. I was so

worried about the weight I gained

and I weighed and I actually lost 5 pounds (but

feel 25 pounds heavier).

For those of you who are on the last 5mg plan -

are these similar cries. I

thought all the prednisone horrors would come at

the beginning as my body was

being ravaged by the wonder drug. But the

5mg has knocked the wind out of my

sails.

I do have a new puppy and that has been a

tremendous comfort,

Bozeman, Mt dx AIH 2/02

[Guest guest]

Dear :

I feel your pain! I've been on 5mg. for two weeks now and I'm still

fatigued, but feel a since of detachment from the world as well.

I've been suffering headaches daily and nauseas to boot. I've

started having quadrant pain again since I ran out of Nexium. The rx

is so expensive that I can't afford it. I did have a bunch of

samples that lasted a couple of months, but I ran out a week ago. I

see my dr. on Sept. 10th, so maybe I can get some more.

I'm so sorry your suffering with this as well, but you're not alone;

especially since you've added a sweet baby to your family. Sometimes

my babies are all that keep me going some days.

Hang in there,

Rhonda/TN

> Hiya! It has been awhile since I have sent mail. Ever since my

doctor

> started me on 40mg of prednisone and returned me back to Montana

and to my

> teaching position I have been working at break-neck speed.

However, we are

> now down to 5mg and I truly have become the Un-Energizer bunny. I

am

> suffering sleepless nights - I sleep - Im just not rested in the

morning. I

> feel listless and non-motivated. I ache and my stomach is like an

accordian

> they way it expands and delates. I was so worried about the

weight I gained

> and I weighed and I actually lost 5 pounds (but feel 25 pounds

heavier).

>

> For those of you who are on the last 5mg plan - are these similar

cries. I

> thought all the prednisone horrors would come at the beginning as

my body was

> being ravaged by the wonder drug. But the 5mg has knocked the

wind out of my

> sails.

>

> I do have a new puppy and that has been a tremendous comfort,

>

>

> Bozeman, Mt dx AIH 2/02

[Guest guest]

Hi,Becki. It sounds like had a good day. How nice that the therapist is so helpful with dealing with teacher concerns. That must be a load off of you. Good luck for the rest of the school year. Michele

-----Original Message-----From: Sojramom@... [mailto:Sojramom@...] Sent: Monday, August 26, 2002 11:30 AM Subject: (no subject)Hi gang, had his first day at school.He was so excited he just walked in without saying bye.I was lucky to get a kiss before he ran off.As I was picking him up I seen his therapist,she had just come from seeing him and was on her way to talk to the gym teacher.She told me the teacher was full of questions but not to worry,she will be checking in with 3 times a week and to discuss things with his teacher.Her biggie of the day was could run around with the cast on?The therapist laughed and said he can do whatever he wants,thats why they put him in the cast to begin with,he can even go to gym class.The therapist is making a special trip first thing next Thursday morning to find out what the cast has done to his range of motion.That was a huge relief,because I was afraid we would have to go the private route and run it through insurance.His daddy is already in a daze about the Enbrel only costing us $25 so come April we will be looking at a $600-$700 insurance premium.Our Medicaid is called TennCare and its a HUGE mess,a total last resort. was on it when he was born and I had to take him to an internal specialist the first few visits before we could change providers to a ped.They litterally made me take him to a gasterointeroligist.Crazy!Anyway I have been upset about his teachers fearful attitude of being in pain,so am very relieved his PT is as dedicated as she is.s IEP states PT/OT consult 1 time a month.She doesnt work that way.She sees her kids every Mon,Wed,and Fri.She used to be a PT at the arthrits clinic in Memphis working with JRA kids so she has a soft spot for .Takes her back to the good ole days I guess.Sorry to ramble.I have to find my way back to Rusty room.Hugs Becki and 4systemic

[Guest guest]

Hi Becki, I'm so gald to hear was excited about going to

school today! He done the same thing Chey done to me a few times

last school year, almost forgot to say good bye..LOL It's great when

they like school that well,at least we don't have to worry that they

don't like being there. Chey had her PT evaluation done today. I

won't know if they approved her for sure until Sept. 5 after they've

done all the red tape stuff. The PT for the school gave me a list of

what Chey would need for PT, which is mainly her knees & ankles, so

maybe she'll get approved for it. The Rheumy wrote an excellent

letter in her behalf of what joints she has that are affected, what

meds she's on ect. The guy doing the paper work seemed impressed,

with the letter. I hope keeps feeling good & enjoying himself

at school.

Love & Hugs,

& Chey4 Poly

> Hi gang,

> had his first day at school.He was so excited he just walked

in without

> saying bye.I was lucky to get a kiss before he ran off.As I was

picking him

> up I seen his therapist,she had just come from seeing him and was

on her way

> to talk to the gym teacher.She told me the teacher was full of

questions but

> not to worry,she will be checking in with 3 times a week and

to discuss

> things with his teacher.Her biggie of the day was could run

around with

> the cast on?The therapist laughed and said he can do whatever he

wants,thats

> why they put him in the cast to begin with,he can even go to gym

class.The

> therapist is making a special trip first thing next Thursday

morning to find

> out what the cast has done to his range of motion.That was a huge

> relief,because I was afraid we would have to go the private route

and run it

> through insurance.His daddy is already in a daze about the Enbrel

only

> costing us $25 so come April we will be looking at a $600-$700

insurance

> premium.Our Medicaid is called TennCare and its a HUGE mess,a

total last

> resort. was on it when he was born and I had to take him to

an internal

> specialist the first few visits before we could change providers

to a

> ped.They litterally made me take him to a

gasterointeroligist.Crazy!Anyway I

> have been upset about his teachers fearful attitude

> of being in pain,so am very relieved his PT is as dedicated

as she

> is.s IEP states PT/OT consult 1 time a month.She doesnt work

that

> way.She sees her kids every Mon,Wed,and Fri.She used to be a PT at

the

> arthrits clinic in Memphis working with JRA kids so she has a soft

spot for

> .Takes her back to the good ole days I guess.Sorry to

ramble.I have to

> find my way back to Rusty room.

> Hugs

> Becki and 4systemic

[Guest guest]

I too have a question in reference to the melatonin. Has anyone given

melatonin along with Zonegran? If so what were the effects.

One of the things that is running through my mind right now is to improve

's sleep, maybe making the transition from one cycle to another easier.

Her seizures appear to be cycle related.

Should I check with the neuro prior to starting the melatonin to see if there

are any interaction with Zonegran?

Tracey

[Guest guest]

Carolyn, It is my understanding that MC is best served by maintaining a gluten free diet. I know of a group that deals with this sort of problem. In fact, they have a chat tonight at 9:00 PM Eastern. If you want to know the chat addy, please email me back.Debby

[ ] (no subject)

One of the strange symptoms I have with the PBC is a terrible itching sensation that seems to come from my stomach. I know the itching of the skin is a common symptom, but I only rarely have the itching on my skin, but the itching sensation from the inside drives me nuts. Has anyone else had this? I also have microscopic colitis and something going on with my pancreatis, so diet is a real problem. I cannot eat raw vegetables, red meat, raw fruits, etc. Has anyone has any success with a particular diet.I really appreciate hearing from anyone that will share their symptoms and any suggestions on making this illness easier to live with.Carolyn

[Guest guest]

In a message dated 9/19/2002 8:38:57 AM Eastern Daylight Time, vgionti8@... writes:

just to feel normal again???

Dear Vivian,

In all my years on this board, I NEVER have heard of ANYONE feeling "normal again" after RAI--they seem to just get sicker, and, of course, once you destroy your thyroid, it's not reversible.

AntJoan