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  • 1 year later...

Tony

While you are speaking with your Dr.'s at Mayo, ask them about Churg-

Strauss Syndrome. This is rare syndrome (although possibly often

undiagnosed), characterized by asthma, high eosiniphil counts,

chronic sinusitis, and a few other symptoms.

One theory is that it is more prevalent in asthmatics than is

diagnosed, because so many of us take prednisone, and pred will mask

the symptoms. Only when the pred is tapered due to an alternate

therapy do the symptoms become apparent.

I was diagnosed with this about 6 years ago and for this reason take

prednisone, not so much to handle my asthma but to deal with the

eosninphil count.

One source for information is

http://www.emedicine.com/derm/topic78.htm

but there are others on the web.

I believe that my CSS was either caused or exacerbated by

Singulair. The web site above does reference the use of leukotrine

inhibitors as a possible connection.

The good news for me is that the last time I saw my hematologist, my

eo count was low despite a reduction in the amount of prednisone I

have been taking.

Greg

--- In , " tonymason2001 " <robs@c...>

wrote:

>

>

> I have been having multitudes of test run at the Mayo

> Clinic. They do not do alot of xolair there so I am

> an interesting experiment for them.

>

> They made me repeat a test that showed " eosinophils " in

> my sputum because it showed a lower amount than expected.

> I don't have the repeated results yet. However, they say

> this is found in asthmatics in the lungs and that the xolair

> may be reducing it, but at a rate so slow that I can having

> a hard time noticing it. This may partially explain why for

> some people it takes well over a year to notice any difference.

> Just thought I would pass this along. I have been on xolair for

> over a year. They did some basic skin tests. Some molds were

reduced

> from my usual reaction but the grasses, trees and dust mites still

> showed the usual massive hive from the tests. If I learn anything

> I will pass it along. Also, some of you with sinus problems may

> want to make sure you don't have GERD. I had surgery to correct

GERD

> but apparently it wasn't effective enough and they may be causing

> sinuses and asthma to flare up (I won't know for sure until more

> tests are run but this is what they are thinking).

>

> tony

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-Thanks Greg,

I will ask them although I will wait until they finish

the latest batch of tests. I don't want to encourage

them for more tests! They are testing me into the ground!

I was a test patient with Singulair. I didn't stay on it

for more than a year. I felt I was getting side effects.

Thanks for bringing that to my attention. I remember reading

about it.

Tony

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  • 1 year later...

Make sure they have tested this child for IgA Deficiency, before they go trying

to turn off

parts of her immune system. More information available here:

http://www.primaryimmune.org/pid/whatis_pid.htm

Vitamin A is very necessary to the body and may help. Vitamin A from fish oil

is preferable

to beta carotene in these situations--but if she is allergic, you might look for

a vitamin

with retinol instead of trying CLO.

Peace,

Kathy E.

>

> hi i posted this on another board and thought i might try here as well.

> does anyone have good info on eosinophils and their relation to asd,

> leaky gut, autoimmune conditions, epilepsy? has anyone heard anything

> about or tried the cincinnati childrens hospital that has a drug

> therapy to turn off eosinophil production. my understanding is

> eosinophils are a white blood cell type that go to an area of allergic

> response( an allergen area) and colonize there and call in the other

> immune agents to attack the invader. i found the cincinnati group

> identified that food allergies have a relationship to interleuken-5

> and developed an anti-interleuken-5 agent that turns off eosinophil

> production.

> my daughter has leaky gut that just worsens and worsens despite many

> attempts to improve it. diet enzymes,etc have not helped. she is

> scheduled for a biopsy on feb 3rd. she has become reactive to every

> single food i have fed her despite enzymes, gfcfsf, and scd- allergic

> to nuts. chelation and antivirals have not improved the gut. i have

> not done the vit A protocol, still considering that one. i heard about

> the cincinnati study from a nurse practitioner friend who is exploring

> it for her own son, and am just starting research on it. any thoughts

> or experience? thanks in advance...teresa c

>

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  • 2 weeks later...

Lori,

Thank you, Thank you, Thank you!!! What an answer to prayer you are! I

haven't posted in a long time, but I've been reading the lists on and

off. To be honest, I was so busy today, and wasn't even going to read

the posts until I saw one re: eosinophils. My son, , also has

eosinophylic enteritis. We, too, have gone through the stomach biopsies

and working with the ped.GI. Just like you, we eliminated everything

from his diet that could possibly be an issue. We did have a 'grace'

period where he didn't vomit and have the horrible stomach cramps and

diarrhea for about 2 months. We thought, YES, this is it, we finally

have a solution. Because of the eosinophylic enteritis, also

suffered from malabsorption issues. This child is now 5' 4 " and weighs

67 lbs. There have been so many times that I have wondered if he will

live to see adulthood. He looks like a concentration camp victim. The

vomiting and stomach problems have started back in again, and like you,

the diet doesn't seem to be making a difference anymore. My heart has

been breaking. Because of 's Aspergers, I had ordered the

Houston Enzymes, and we had just started on them, when we received this

other diagnosis. So I thought it best not to give him the enzymes until

we had the other problem under control. I did ask the GI if we could use

the enzymes, as well, and he highly discouraged it. Yet, this is

probably the solution!! DUH, do I feel stupid. Thank you so much for

sharing this!! We'll get started back on the enzymes today!! Re: the

osteoporosis, that is a big concern for me. My husband, his sister and

brother as well as his Mom and Dad have this. My husband and his

siblings were worked up when they were in their late 30's, early 40's.

According to the DEXA scan they all had hips of 80 year olds. They have

done better now with tx, but my husband, who is a rheumatologist, said

he is almost certain will have problems with this. My husband

and his siblings all have AS traits. I wonder if there is a connection

somehow. will be so excited that he can try eating his old

favorites again!! What a blessing you are!! THANKS !! Penny

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Hi Penny-

I sincerely hope that you have the results I had. I don't know if my son is the

exception more than the rule, but I've always given faith and hope just as much

weight in my world as scientific results!

Food has always been an issue for him. We used to joke that it didn't matter

what he ate or at what time; in two hours he'd be leaping from the furniture,

and eventually he'd throw it all up anyway, with lots of mucous (pardon the

graphics). I forgot to mention - he threw up every day from the time he was 8

months old until he was 22 months old. Sometimes 3,4,5 times a day, all

completely undigested..and usually more than 24 hours old. Even when the

constant vomiting ceased, he'd still bring up undigested food when he had a

stomach bug. Really gross!!! I had two doctors tell me it was reflux. He also

had a seizure after I unknowingly gave him rice milk with barley in it when he

was GFCF/other-free (could be a coincidence, but the GI we had at the time

supported me on that one). My pediatrician was the one who knew enough to look

into some immune tests, which really started the ball rolling for us. So you can

see, enzymes were a no-brainer for us.

I know I'm painting a rosy picture here, but I want you to realize that there

are still some problems that didn't go away with enzymes. And our son's GI

system didn't take to the enzymes like a fish to water - we had to ride out the

first three weeks, and it was hard. But things, from a GI standpoint, are

WAAAAAAAAAAAAAAY better than we ever could have hoped. And I hope that you are

able to say the same thing one day.

Best of luck to you! And I'd like to know your results after a while on the

enzymes.

Lori Getz

re: eosinophils

Lori,

Thank you, Thank you, Thank you!!! What an answer to prayer you are! I

haven't posted in a long time, but I've been reading the lists on and

off. To be honest, I was so busy today, and wasn't even going to read

the posts until I saw one re: eosinophils. My son, , also has

eosinophylic enteritis. We, too, have gone through the stomach biopsies

and working with the ped.GI. Just like you, we eliminated everything

from his diet that could possibly be an issue. We did have a 'grace'

period where he didn't vomit and have the horrible stomach cramps and

diarrhea for about 2 months. We thought, YES, this is it, we finally

have a solution. Because of the eosinophylic enteritis, also

suffered from malabsorption issues. This child is now 5' 4 " and weighs

67 lbs. There have been so many times that I have wondered if he will

live to see adulthood. He looks like a concentration camp victim. The

vomiting and stomach problems have started back in again, and like you,

the diet doesn't seem to be making a difference anymore. My heart has

been breaking. Because of 's Aspergers, I had ordered the

Houston Enzymes, and we had just started on them, when we received this

other diagnosis. So I thought it best not to give him the enzymes until

we had the other problem under control. I did ask the GI if we could use

the enzymes, as well, and he highly discouraged it. Yet, this is

probably the solution!! DUH, do I feel stupid. Thank you so much for

sharing this!! We'll get started back on the enzymes today!! Re: the

osteoporosis, that is a big concern for me. My husband, his sister and

brother as well as his Mom and Dad have this. My husband and his

siblings were worked up when they were in their late 30's, early 40's.

According to the DEXA scan they all had hips of 80 year olds. They have

done better now with tx, but my husband, who is a rheumatologist, said

he is almost certain will have problems with this. My husband

and his siblings all have AS traits. I wonder if there is a connection

somehow. will be so excited that he can try eating his old

favorites again!! What a blessing you are!! THANKS !! Penny

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