's great news

[Guest guest]

> Dear all Samterites,

My name is (from Michigan, 16 years old), who by the way

has an ENT in the same practice as Dr. Terrell of the University of

Michigan in Ann Arbor.

, thank you for writing such a complete post. It was very

interesting. I have been through the allergy testing and was found

not be allergic to any foods, though dust, dust mites, mold, mildew,

bees, and antibiotics were on the list. I was told by Dr. Terrell

that if I had anaphylaxsis from aspirin I couldn't be

desensitized...though it sounds like you were and did? I had Dr.

when he was at AA and then went to Cleveland Clinic for the

past two years. I too am on loads of meds and am currently at the end

of my rope. Here is the list right now:

Singulair, Advair, Albuterol, Allegra, Ultram, Prednisone, Nasalcrom,

Dexamethasone nasal drops, and Xanax if I need it. I am drinking raw

cherry juice as an anti-inflammatory but only started a few days ago.

My diet consists of most of the things you listed in the exclude

group! As do most others I presume. Hey, if it works, go with it so

maybe there is a chance the foods we eat are causing the problems.

When you are on the meds I am, and still can't breath (my asthma is

out of control) and am covered with hives, their has to be something

else wrong. Thanks again for the post and good luck! Trudy...in

Northern Michigan.

[Guest guest]

> Trudy: I am probably a good person to help you with questions and

issues re: Churg Strauss. I am a patient and physician with both

Samter's and Churg Strauss.I am also the director /Founder of the

Churg Strauss Association. ( WEb site will be up in a couple of

weeks.) If I remember correctly you had a high eosinophil ct and

symptoms suggestive of CSS. Let me know how I can help. Carol

CSS

Carol, thank you so much for your reply. So far I haven't been given

the diagnosis but it is what they are leaning toward. I have chronic

sinus, polyps, asthma, hives which need to be biopsied, high

eosinophil count and elevated sed rate, all over myalgia, fatigue. I

am currently taking 60 mg. prednisone daily with no relief. Also on

40 mg. Ultram QID, Allegra 180, Sinulair 10 mg., Advair, Albuterol,

Nasacort, and now today adding Atarax and Zantac. Geez, I feel like a

floating pharmacy. My weight is now escalating without eating

calories and my body feels like it is gonna just shut down soon, if

that makes sense. Let me know when your website is up, as I would

love to see it. I guess my main concern is the treatment available

that is safe to use with my allergies and other meds. Trudy.

[Guest guest]

i am so glad that you are feeling better especially since the school

year is starting again. i am curious about your diet - it seems well

rounded and nutritious except for calcium. are you taking

supplements or are you getting calcium through the foods that you

are eating? is your ent the dr that gave you this diet? is he an

allergist as well?

jennifer

> Dear all Samterites,

>

> My name is (from Michigan, 16 years old), who by the way

has an

> ENT in the same practice as Dr. Terrell of the University of

Michigan in Ann

> Arbor. I'll start at the beginning and tell you all the things

that I did that

> did not work for me.

> -I had 2 polyp surgeries

> -I had 1 aspirin desensitization (I am still desensitized)

> -I tried acupuncture

> -I tried some NAET

> -I tried homeopathic stuff

> -I tried eliminating dairy

> -I tried Low Dose Naltrexone

> -And I tried and am on a boat load of medicine.

> The medicine that I am currently taking is:

> *nasacort

> *singulair

> *advair 250

> *zyrtec (Zyrtec D sometimes)

> *Ibuprofen (instead of aspirin, same chemical reaction)

> *astelin

> *Naltrexone

> When I would get so bad that I couldn't stand it or I needed to

fly on an

> airplane I took Predisone, an antibiotic, and a nasal antibiotic

rinse

> (bactroban?) because I was so congested my ears were plugged. I

have not been on

> these for about 2 months.

>

> Ok, now the good part. Do you all remember who stopped

posting

> because she felt so good thru diet? Well, guess what-after 3

allergy immunology

> specialist, 2 from the University of Michigan Ann Arbor telling me

it was not

> allergy related, mine is allergy related and yes I had those

scratch tests where

> they test you for what you are allergic to! My biggest problem is

nasal

> congestion and sinus infection (I have had a chronic one for about

3 years)

> which I believe irritates the polyps and makes them grow. My

theory is that the

> body is responding to something that is irritating it creating

inflammation.

> This diet I am on is like a miracle if you will- I feel so much

better and I

> can breath- I even got a whiff of a candle one afternoon for

about a minute. I

> have not been able to smell things for about 4 years (except the

candle and

> one time I took Prednisone I could smell a perfume).

>

> The cure might not be the same for all of us but we cannot afford

to leave

> any stone unturned. What have you got to lose with this diet? It

will take a

> while for it to start working (It took me about 2 weeks) but once

it does you

> will notice a difference. I have even tried other diets before so

I was

> skeptical at first too. Just try this diet for a month or more. I

hope this is one

> piece of the Samter's puzzle that we are trying to piece together.

>

> Before I get to the diet I want to tell you about nasal rinsing. I

used to

> rinse with 8 oz. of distilled water with 1/4 teaspoon sea salt and

1/4 teaspoon

> baking soda in a Neil med. bottle. But this combination was too

neutral. Now

> I still use the Neil med. bottle with 8 oz. of distilled water

but now I

> use 1/8 teaspoon of sea salt and 1/8 teaspoon of apple cider

vinegar (if you

> can take it you should increase the salt and vinegar to 1/4

teaspoon). Now the

> solution is more acidic. I also am using the Sinus Buster that's

all the rage!

>

> THE DIET: (It may be hard at first, but stick with it!)

> I eat natural food. I eat No preservatives, coloring, artificial

flavoring,

> or hydrogenated oils. This diet is from Dr. Harp and Ultra Clear.

> Food To Include

> Fruits: unsweetened fresh, frozen, water-packed, or canned

fruits; fruit

> juices (except orange)

> Vegetables: all fresh raw, steamed, sauteed, juiced, or roasted

vegetables.

> Starch: Rice, oats, millet, quinoa, amaranth, teff, tapioca,

buckwheat

> Bread/Cereal: products made from rice, oat, buckwheat, millet

potato flour,

> tapioca, arrowroot, amaranth, quinoa, teff

> Legumes (Vegetable protein): All beans, peas, and lentils

> Nuts and Seeds: Almonds, cashews, walnuts, sesame (tahini),

sunflower,

> pumpkin seeds; butters made from these nuts and seeds

> Meat and Fish: all canned (water-packed), frozen, or fresh fish,

chicken,

> turkey, wild game, lamb

> Dairy Products: Milk substitutes such as rice milk, almond milk,

oat milk,

> coconut milk, and other nut milk.

> Fats: Cold-expeller pressed olive, flax, canola, safflower,

sunflower,

> sesame, walnut, pumpkin, or almond oils

> Beverages: Filtered or distilled water, herbal tea, seltzer, or

mineral

> water.

> Spices/ Condiments: All spices unless otherwise indicated.

Examples:

> cinnamon, cumin, dill, garlic, ginger, carob, oregano, parsley,

rosemary, tarragon,

> thyme, turmeric, vinegar.

> Sweeteners: Brown rice syrup, fruit sweetener, blackstrap

molasses, stevia

> Foods To Exclude:

>

> Fruits: Oranges, grapefruits, lemons, limes

> Vegetables: corn, creamed vegetables

> Starch: wheat, corn, barley, spelt, kamut, rye; all gluten-

containing

> products

> Bread/Cereal: Products made from wheat, spelt, kamut, rye,

barley; all

> gluten-containing products

> Legumes (Vegetable protein): Soybeans, tofu, tempeh, soy milk,

other soy

> products.

> Nuts and Seeds: peanuts, peanut butter

> Meat and Fish: beef, pork, cold cuts, frankfurters, sausage,

canned meats,

> eggs, shellfish

> Dairy Products: ALL-milk, cheese, cottage cheese, cream, yogurt,

butter, ice

> cream, frozen yogurt, nondairy creamers

> Fats: Margarine, butter, shortening, processed and hydrogenated

oils,

> mayonnaise, spreads

> Beverages: Soda pop or soft drinks, alcoholic beverages, coffee,

tea, other

> caffeinated beverages

> Spices/ Condiments: chocolate, ketchup, mustard, relish, chutney,

soy sauce,

> barbecue sauce, or other condiments

> Sweeteners: White or brown refined sugar, honey, maple syrup,

corn syrup,

> high fructose corn syrup, candy, desserts made with these

sweeteners.

>

> I know Samter's has some connection with diet, I feel more

congested when I

> eat something from the foods to exclude list (after the 2 weeks

went by and

> now I am clearer I can tell a difference). Maybe this isn't

allergy related but

> I do feel better so please try this diet.

>

> *Please put down the state you live it, some still do but it would

be nice

> if everyone did. Thanks

>

> K. (Michigan)

[Guest guest]

Carol,

Do you think there's a connection between samters and churg strauss? Just curious.

Tami in Wis

Re: Re: 's Great News

Trudy: I am probably a good person to help you with questions and issues re: Churg Strauss. I am a patient and physician with both Samter's and Churg Strauss.I am also the director /Founder of the Churg Strauss Association. ( WEb site will be up in a couple of weeks.) If I remember correctly you had a high eosinophil ct and symptoms suggestive of CSS. Let me know how I can help. Carol CSS Trudy <iamthezookeeper@...> wrote: > Dear Trudy,> Dr. Harp is in Birmingham, Michigan. You can call him at (248)645-6070, the > fax # is (248)645-2949. The address of the Birmingham Wellness Center, pllc is > 1775 E. 14 Mile Rd., Birmingham, MI 48009.Thank you ! I looked up the online site and it seems you need to be a healthcare professional to register. I would like to find out from Dr. Harp if this program supports treatment for Churg-Strauss Syndrome or Vasculitis. This is what the chronic use of meds and surgery has caused in my case. I am seeing a Rheumatologist soon for the problems and tomorrow will see my family doc about the hives again. I have another appointment with Dr. Terrell in 3 weeks also and will ask him too. Thanks again. Trudy.

[Guest guest]

No- not that I have been able to find. I do think that because I had Samter's -everything got written off as that instead of me getting the diagnosis of CSS. It took me about ten years to get a diagnosis Carol

Re: Re: 's Great News

Trudy: I am probably a good person to help you with questions and issues re: Churg Strauss. I am a patient and physician with both Samter's and Churg Strauss.I am also the director /Founder of the Churg Strauss Association. ( WEb site will be up in a couple of weeks.) If I remember correctly you had a high eosinophil ct and symptoms suggestive of CSS. Let me know how I can help. Carol CSS Trudy <iamthezookeeper@...> wrote: > Dear Trudy,> Dr. Harp is in Birmingham, Michigan. You can call him at (248)645-6070, the > fax # is (248)645-2949. The address of the Birmingham Wellness Center, pllc is > 1775 E. 14 Mile Rd., Birmingham, MI 48009.Thank you ! I looked up the online site and it seems you need to be a healthcare professional to register. I would like to find out from Dr. Harp if this program supports treatment for Churg-Strauss Syndrome or Vasculitis. This is what the chronic use of meds and surgery has caused in my case. I am seeing a Rheumatologist soon for the problems and tomorrow will see my family doc about the hives again. I have another appointment with Dr. Terrell in 3 weeks also and will ask him too. Thanks again. Trudy.

[Guest guest]

,

Congrats on your wonderful news and thanks for sharing with the group. Although

my twins are 8 now, they also didn't say anything until we introduced the ProEFA

(at 3) and I also questioned the " magic " as a COINCIDENCE....I think that

paragraph is even in the Late Talker Book...yet another coincidence on fish

oils?!....don't think so! Each day you'll hear more and more! Get the tissues,

camera and phone ready to share the news!!

kathy NJ

>

> Hi Everyone-

> I have read and learned here for months as I try to help my 2.5yr old apraxic

son

> grow a voice, and I have to share that last night he said " UP, MAMA! " I

couldn't be

> more excited and you guys are about the only people who grasp the

momentousness

> of this achievment, so I needed to tell an appreciative audience. He has

never put two

> words together before verbally -he only has about 8 approximations-and never

> directly addressed me as Mama (barely said it at all). Earlier in the evening

he

> independently climbed up the ladder to the very small slide and went down for

the

> first time. Today, he looked at two pizza boxes in front of him, pointed, and

said

> " two. " We were thrilled and said yes, that's right, two boxes. Which one is

bigger? He

> pointed at the big one and said " bi " ! Then he pointed at the smaller one and

made

> his noise for little (kind of a squeak, like a tiny mouse. It's really cute.)

I only

> expected a point, as he has never even attempted to say big. And in the pool

today

> he started jumping to me from a foot away, no hands, and splashing in with

part of

> his face. Three days ago I bumped up his efa dosage and hoped for progress

but this

> is fabulous. I also stopped giving the oil with oatmeal after reading the

high fiber/oil

> absorption discussion. He is no longer getting any speech therapy except what

I do,

> and I am definitely not a professional. To us, it looks like huge, instant

leaps in gross

> motor planning, cognition and speech development from this increase. We never

had

> this kind of surge to begin with or with previous increases. Are we

reality-based?

> Could it be a coincidence? Has anyone else seen this kind of global

explosion?

> Whatever it is, I couldn't be happier or more grateful. Thank you all for

listening to a

> proud, ecstatic " Mama. "

>

>

[Guest guest]

Yep, this is what we saw too. Hard to imagine that all of us have seen the same

" coincidence, " isn't it??

Congratulations!

Peace,

Kathy E.

>

To us, it looks like huge, instant leaps in gross

> > motor planning, cognition and speech development from this increase. We

never had

> > this kind of surge to begin with or with previous increases. Are we

reality-based?

> > Could it be a coincidence? Has anyone else seen this kind of global

explosion?

> > Whatever it is, I couldn't be happier or more grateful. Thank you all for

listening to a

> > proud, ecstatic " Mama. "

> >

> >

>