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Interesting

thought, but I for one know I have actual allergies. I have known I was

allergic to horses since I was 2. And I was allergy tested many years

before being diagnosed with Samter’s and the things I wasn’t

allergic to then (like my dogs) I am still not allergic to. However, I either

don’t seem to have as bad of Samter’s symptoms as other people or I

caught it really early and nipped it in the bud. Don’t get me

wrong, if my sinuses get stuffy, my asthma kicks in. My sense of smell

has a mind of its own and wanders away for no apparent reason. But my

asthma has never put me in the hospital (knock on wood!) and since my last

surgery in December for the most part I can breathe normally. However,

come pollen season, my allergies kick in and without my antihistamine I am

itchy and stuffy. Heck, without my drugs I cannot spend time at the barn

with my horse without getting stuffy, wheezy and itchy (yes, I am allergic to

horses. Horses are in fact an addiction. I have loved them since I was

old enough to know what one is and have been riding for over 20 years and owned

my horse for over 18 yrs. Allergies have not stopped me for one second in

my pursuit of horsey happiness.) Of course, most of my allergies seemed

to have come about as I got older, or maybe because I moved to NC, I don’t

know which, and maybe that was the start of Samter’s. My husband is

still not totally convinced it is a real disease. It would be nice for

more people and esp. doctors to know more about it. My cardiologist

definitely does not understand the extent of my sinus troubles! She is

still trying to get me to stop taking my Singulair and Allegra to see if that

is causing my tachycardia. I dropped my Allegra my 60 mg for 2 days and

couldn’t smell, couldn’t breathe, and itched like crazy. So that

is sooo not happening during grass season! Anyway, I think I am rambling

a bit now.

K.

Allergies

Still on my rampage

through the archives - mid October now ('s trip to Scripps).

I've always had a personal theory that everyone is reactive (fill the room with

enough smoke

and anyone will start to cough and wheeze) but that I (WE) are just more sensetive.

The more

I learn about the arachidonic acid cascade, lukatrimine production, and

eosinophil cells, the

more it seems like my theory is right.

I was thinking. Do you think that WE even have allergies? Isn't it more likely

that because our

immune system in in a constant state of alert that ANY antagonist is going to

result in a

reaction? Has anyone done pre- / post- ASA desen allergy tests?

ie

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I would love to know who your ENT thinks is researching the cause of Samters. I say this because first of all I don't really know that I believe anyone is, but if they are I really think we should have more information about who these people are -- they might want to help us with the foundation (because we could raise money for their research!) and it wouldn't take us as long to find out the results of what's going on in the field, which usually happens by chance because someone is doing a research PubMED search or something.

Thanks for that web site, I will check it out. Basically I think a big part of it is cutting out all the processed foods because those are higher in omega 6s.

I truly think a big part of the cause of this is genetics. That does not mean that you can't alleviate the symptoms in other ways but the research I have seen shows there is a genetic component.

Lori

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P.S. I don't really see how they could be finding the cause of it, even though genetics studies, without recruiting patients for studies ... and I do not know of any studies for Samters. So another reason to ask your ENT if he knows who is studying the cause of Samters. It would be nice if some of us could be involved in clinical or genetic studies into this, if they are really happening.

Lori

..

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Hi Lori, I've only met with him once... but he is a professor at UVA. He looked at all my information and then told me I had the aspirin triad which I already knew from my allergist. He then lit up and said, "this is what I love... it is my passion... and have done papers on it." When my boyfriend asked him why I got it now.... he said it is because of my 'genes'. My boyfriend then asked, "what causes it?" And he said, "if I knew... well, I'd be famous. But ask me in 5 years and I think we'll have an answer." At that point I lit up and said, "Really?" And he said, "yes, i think we will." Now, it might just be that they are studying how genetics plays a role in asthma... or something of that sort. I'm not sure if it is specific to Samter's... though he sure lit up on the subject. And that's all I

know. Is he being a little over confident? Again, I don't know. I will ask him more... but I don't have an appointment with him until the end of July. MicheleLori Baur <lori@...> wrote: I would love to know who your ENT thinks is researching the cause of Samters. I say this because first of all I don't really know that I believe anyone is, but if they are I really think we should have more information about who these people are -- they might want to help us with the foundation (because we could raise

money for their research!) and it wouldn't take us as long to find out the results of what's going on in the field, which usually happens by chance because someone is doing a research PubMED search or something. Thanks for that web site, I will check it out. Basically I think a big part of it is cutting out all the processed foods because those are higher in omega 6s. I truly think a big part of the cause of this is genetics. That does not mean that you can't alleviate the symptoms in other ways but the research I have seen shows there is a genetic component. Lori __________________________________________________

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ok... i looked his info up and his research is in: Genetics of chronic rhino sinusitis which i would guess we are a part of. and then i found this about a new drug: http://www.pslgroup.com/dg/257D12.htmLori Baur <lori@...> wrote: P.S. I don't really see how they could be finding the cause of it, even though genetics studies, without recruiting patients for studies ... and I do not know of any studies for

Samters. So another reason to ask your ENT if he knows who is studying the cause of Samters. It would be nice if some of us could be involved in clinical or genetic studies into this, if they are really happening. Lori .

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and this article shows they might be making some progress: http://www.springerlink.com/(fs04fk55fw5jdivt2baenr55)/app/home/contribution.asp?referrer=parent & backto=issue,2,16;journal,30,510;linkingpublicationresults,1:100421,1 Lori Baur <lori@...> wrote: P.S. I don't really see how they could be finding the cause of it, even though

genetics studies, without recruiting patients for studies ... and I do not know of any studies for Samters. So another reason to ask your ENT if he knows who is studying the cause of Samters. It would be nice if some of us could be involved in clinical or genetic studies into this, if they are really happening. Lori .

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Sorry... this is my last post today I promise! But at the bottom of that link... is 8 more recent articles about the genetics of asa. I find it interesting that the studies are by Koreans (the first one of polish populations). My doctor is Korean, too. Lori Baur <lori@...> wrote: P.S. I don't really see how they could be finding the cause of it, even though genetics studies, without recruiting patients for studies ... and I do not know of any studies for Samters. So another reason to ask your ENT if he

knows who is studying the cause of Samters. It would be nice if some of us could be involved in clinical or genetic studies into this, if they are really happening. Lori .

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Michele, I cannot get to that link. It just takes me to a main page.

Lori

Re: Allergies

and this article shows they might be making some progress:

http://www.springerlink.com/(fs04fk55fw5jdivt2baenr55)/app/home/contribution.asp?referrer=parent & backto=issue,2,16;journal,30,510;linkingpublicationresults,1:100421,1

Lori Baur <lori@...> wrote:

P.S. I don't really see how they could be finding the cause of it, even though genetics studies, without recruiting patients for studies ... and I do not know of any studies for Samters. So another reason to ask your ENT if he knows who is studying the cause of Samters. It would be nice if some of us could be involved in clinical or genetic studies into this, if they are really happening.

Lori

..

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My ENT is Dr. ph Han at University of Virginia. Yes, I'm hopeful too. Sometimes hope can carry one a good distance... MicheleLori Baur <lori@...> wrote: What's his name? Thanks for this information, makes me feel hopeful. Lori __________________________________________________

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That brings back memories! It is hard to believe that it almost 4

years since I was desensed at Scripps. I have been faithful about

taking my aspirin and, for the most part, I think it has helped.

My asthma is controlled almost entirely by Singulair. I still have

swelling and polyps in the nose but haven't had to have surgery since

2001. I did a burst of prednisone earlier this month and I even got

back my sense of smell. I guess I went almost 5 years without having

to do prednisone which is a record for me.

-

>

> Still on my rampage through the archives - mid October now ('s

trip to Scripps).

>

> snip

>

> ie

>

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  • 4 weeks later...
Guest guest

Dear Diane,

I have been driven to use an " air filter " to filter out most of the inhalant

allergens, that I am exposed to during Spring, Summer and Fall...Allergy

exposure, for me, has become worse over time, probably people my body is too

overloaded. Winter is my best time for not having allergy problems..

It is possible that you have developed a new allergy to something in the

environment or something new you are ingesting.

Have you heard about what the Mayo Clinic says about Chronic Sinusitis,

indicating that it is due to Fungal issues, not Bacterially induced?..

Have you used any saline solutions, to clean your sinuses? some people use

a Neti pot...

Allegra and other pharmaceutical never helped me...but it is possible what

you say, if a tolerance has built up to the medication. Flonase, usually, can

get rid of allergy symptoms, termporarily, but may come back worse, than

before.

Olive Leaf Extract (which works against many pathogens) helped me a great

deal, for several years.

There could be many factors, here, which you do need to explore, with

people, who are qualified and know all the factors.

Amelia

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Dear Diane,

My nasal passages used to have a feeling of " blockages " much of the time..I

would not be able to breathe out of one side or the other..Utilizing the

saline solution to clean out the the sinus cavity is quite helpful, every day

for

that...Also, the OLE really helped me for a long time, relative to the

blocked feeling..it has helped a lot of people with sinus issues..Also, I have

not had a sinus infection in several years, which, previously, I had a sinus

infection up to 4 X in one year...do you have sinus infections?

Amelia

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My understanding of allergies in general is that they become worse as, over

time, there are repeated exposures to the thing you are allergic to, (the

allergen). This is not good news. The thing to do is to discover if possible

what it is you are allergic to and treat that or avoid it.

That may very well be outside the expertise of the FFC docs.

Adrienne

Allergies

When I was put on CPAP in April just before my first visit to FFC, I was

prescribed Allegra and Flonase for sinusitis. That needed to be treated to

effectively use the CPAP machine. Several weeks ago I experienced an abrupt

onset of sneezing/watery eyes/runny nose allergy symptoms. Up till now, I've

not had such symptoms. I take the allegra/ flonase at bedtime, and next day

symptoms were much better.

I forgot the combination last night. In the night had some annoying throat

soreness, and today woke up sneezing again. With all the other goodies that go

with it. I'm curious if the Allegra/flonase has precipitated an increased need

for the medication. Or am I just becoming more symptomatic? I am on the 3rd

month of FFC treatment. Taking mostly the nutriceuticals for energy and

cognitive symptoms, and hormones, lots of hormones. I expect this week to begin

addressing infection issues. Recent discussion about the

bacteria/viruses/mycoplasm has been interesting, and a little daunting. I trust

FFC dr. will be able to ferret out the underlying causes and give direction in

eradicating the problems. I have not the first clue where else I'd go if she

tells me it's Lyme...so I'm not going to borrow that trouble till I know it's

mine.

Diane in MI

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I just saw my sleep dr., he requisitioned a blood test (rast) for

antigens/antibodies for dog and chicken. Both are present in my every day

environment. He won't test for environmental biggies like dust, leaf mold etc.

because they don't do the treatment fo r those kinds of allergies I guess. He'd

give me singulair for allergie to dogs or chickens. I want to pass that by my

ffc dr. first before I have the blood work done. I don't think that's an

accurate allergy test, but don't know for sure. I think you may be right, about

ffc dr not working outside their specialty. Which is as it should be I suppose.

Though it'd be real nice if they'd broaden their horizons enough to include such

things as Lyme...I'm hoping my dr. is well up on that, as I don't want to have

to find another care giver.

Diane in MI

Allergies

When I was put on CPAP in April just before my first visit to FFC, I was

prescribed Allegra and Flonase for sinusitis. That needed to be treated to

effectively use the CPAP machine. Several weeks ago I experienced an abrupt

onset of sneezing/watery eyes/runny nose allergy symptoms. Up till now, I've not

had such symptoms. I take the allegra/ flonase at bedtime, and next day symptoms

were much better.

I forgot the combination last night. In the night had some annoying throat

soreness, and today woke up sneezing again. With all the other goodies that go

with it. I'm curious if the Allegra/flonase has precipitated an increased need

for the medication. Or am I just becoming more symptomatic? I am on the 3rd

month of FFC treatment. Taking mostly the nutriceuticals for energy and

cognitive symptoms, and hormones, lots of hormones. I expect this week to begin

addressing infection issues. Recent discussion about the

bacteria/viruses/mycoplasm has been interesting, and a little daunting. I trust

FFC dr. will be able to ferret out the underlying causes and give direction in

eradicating the problems. I have not the first clue where else I'd go if she

tells me it's Lyme...so I'm not going to borrow that trouble till I know it's

mine.

Diane in MI

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Thanks for the suggestions. I " ll ponder over them. I am aware of the fungal

association to sinusitis, and will continue to use the argentyn 23 (silber nasal

spray). I have been lax in using it, and have not been good at all using the

flonase. I have a severe suspicion of prescribed drugs. I take the Allegra

only because I need an open airway to use my cpap. Without it I toss and turn

all night to breath thru my nose, clearing first one side then the other as I

turn. I am pretty certain there is inflammation as I am unable to clear any

mucus yet I am stuffy. There is more sinus drainage now too. So, I do need to

get that silver solution out and use it with more persistence.

should that fail, I will look into the Neti pot and saline

Diane

Re: Allergies

Dear Diane,

I have been driven to use an " air filter " to filter out most of the inhalant

allergens, that I am exposed to during Spring, Summer and Fall...Allergy

exposure, for me, has become worse over time, probably people my body is too

overloaded. Winter is my best time for not having allergy problems..

It is possible that you have developed a new allergy to something in the

environment or something new you are ingesting.

Have you heard about what the Mayo Clinic says about Chronic Sinusitis,

indicating that it is due to Fungal issues, not Bacterially induced?..

Have you used any saline solutions, to clean your sinuses? some people use

a Neti pot...

Allegra and other pharmaceutical never helped me...but it is possible what

you say, if a tolerance has built up to the medication. Flonase, usually, can

get rid of allergy symptoms, termporarily, but may come back worse, than

before.

Olive Leaf Extract (which works against many pathogens) helped me a great

deal, for several years.

There could be many factors, here, which you do need to explore, with

people, who are qualified and know all the factors.

Amelia

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  • 8 months later...
Guest guest

hi tami. i have been tested over and over and they found i have

allergies to dust, mites, molds and mildews, but no pollens, leaves,

trees, flowers, grasses, etc. i am allergic to honey bees and no

other kinds or wasps, was allergic to shellfish and now am not for

some reason, even after having an anaphylatic response to it...though

i still don't eat it...too scared. something is going on right now

though cuz i am itching like mad and have a whopper of a headache

lately, though we are staying at a strange (in more ways than one)

house that houses three dogs, one cat, a rabbit, a gerbil, and is

very dusty. trudy.

>

> I've been reading that alot of people with samters are now dealing

with allergies. Didn't we discuss this last year and most people

with samters did not test positive for allergies.

> My allergies have been increasing as time goes on.

> Any thoughts on this.

> Tami

>

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Hi Guys-- Several years ago, my Allergist (one of the few "Samter Scholars" I've encountered) told me that most Samters patients "do not test any more positive for allergies than the rest of the population." But then people are developing allergies exponentially these days so whatever...LizTrudy <iamthezookeeper@...> wrote: hi tami. i have been tested over and over and they found i have allergies to dust, mites, molds and mildews, but no pollens, leaves, trees,

flowers, grasses, etc. i am allergic to honey bees and no other kinds or wasps, was allergic to shellfish and now am not for some reason, even after having an anaphylatic response to it...though i still don't eat it...too scared. something is going on right now though cuz i am itching like mad and have a whopper of a headache lately, though we are staying at a strange (in more ways than one) house that houses three dogs, one cat, a rabbit, a gerbil, and is very dusty. trudy.>> I've been reading that alot of people with samters are now dealing with allergies. Didn't we discuss this last year and most people with samters did not test positive for allergies. > My allergies have been increasing as time goes on. > Any thoughts on this.>

Tami>

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  • 2 years later...

do you have a link to the test so it's clear which test you mean?

thanks

chris

>

> Hi everyone,

>

> I was looking on the Allergy UK website and wondering if you have ever had

their test done for allergies, not food intolerance.

> Is it reliable, and would anyone be able to tell me how this is done, is it a

blood test?

>

> thanks

> Talita

>

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I have got the link now, so I have checked and it's not a blood test.

http://www.allergytest4you.co.uk/page_1156214.html

Since it costs 60£, I wouldn't like to spend this money if it's not very

reliable..any clue?

thanks!

talita

> >

> > Hi everyone,

> >

> > I was looking on the Allergy UK website and wondering if you have ever had

their test done for allergies, not food intolerance.

> > Is it reliable, and would anyone be able to tell me how this is done, is it

a blood test?

> >

> > thanks

> > Talita

> >

>

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  • 7 months later...
Guest guest

>

> , Would you be able to let me know the group I believe you host for

allergies? I just found out that my friend's little girl has alot of allergies

and they will be cutting out many things. I KNOW how much info is shared here

(and what can be learned even w/o a VitaMix) and would like to recommend this

group, but I thought yours would be helpful to her, also.

>

> Thanks, too, everyone for the sympathy on my mixer--soon it will be good as

new!

>

> April :-)

Sure, April-the link for my allergy group is

foodallergynetwork/ I often talk about

the vitamix in this group as well.

>

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Guest guest

Thanks so much !

April :-)

> >

> > , Would you be able to let me know the group I believe you host for

allergies? I just found out that my friend's little girl has alot of allergies

and they will be cutting out many things. I KNOW how much info is shared here

(and what can be learned even w/o a VitaMix) and would like to recommend this

group, but I thought yours would be helpful to her, also.

> >

> > Thanks, too, everyone for the sympathy on my mixer--soon it will be good as

new!

> >

> > April :-)

>

> Sure, April-the link for my allergy group is

foodallergynetwork/ I often talk about

the vitamix in this group as well.

>

>

> >

>

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  • 4 months later...

Hi,

Just wondering whether anyone's had experience with iodine improving allergies.

My partner currently eats a gluten free, dairy free and chemical free diet.

This works most of the time and she's happy with this, but when we go out it's

really difficult. When we go away for a weekend and eat out a lot she'll come

back puffy, tired and feeling crappy.

Just wondering whether iodine can help with any of this. Even to the point that

she could eat some of these foods every now and then without so many problems?

Or are these allergies likely to be permanent?

Thanks!

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I am new to iodine list and not familiar with all it can or cannot do ... But LDN (low dose naltroxene) helps improve many people's allergies (including mine).  I have been able to go off allergy meds since starting LDN.

JaxiOn Thu, Nov 11, 2010 at 5:14 PM, Amy <amym5552@...> wrote:

Hi,

Just wondering whether anyone's had experience with iodine improving allergies. My partner currently eats a gluten free, dairy free and chemical free diet.

This works most of the time and she's happy with this, but when we go out it's really difficult. When we go away for a weekend and eat out a lot she'll come back puffy, tired and feeling crappy.

Just wondering whether iodine can help with any of this. Even to the point that she could eat some of these foods every now and then without so many problems? Or are these allergies likely to be permanent?

Thanks!

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

All off topic posts should go to the IodineOT group  IodineOT/

Commonly asked questions:   http://tinyurl.com/yhnds5e

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I know several folks on the ldn list also take iodine so I do not think there are any issues there.Prescription if you can get a doc to do it, or do what many of us do which is to order from alldaychemists in India and mix your own.  It is so much more cost effective to do it that way many with scripts still order from India.

JaxiOn Thu, Nov 11, 2010 at 6:03 PM, Amy <amym5552@...> wrote:

No digestive issues really, which is strange, but the modified diet has basically gotten rid of her chronic fatigue issues, which has been amazing.

She also has pcos, which someone on a previous post also recommended naltrexone for, so might be worth looking into. Lots of autoimmunity in the family too.

Is it only prescription?

And can you take it with iodine (once the iodine detox period is over)??

> > >

> > > > Hi,

> > > >

> > > > Just wondering whether anyone's had experience with iodine improving

> > > > allergies. My partner currently eats a gluten free, dairy free and

> > chemical

> > > > free diet.

> > > >

> > > > This works most of the time and she's happy with this, but when we go

> > out

> > > > it's really difficult. When we go away for a weekend and eat out a lot

> > > > she'll come back puffy, tired and feeling crappy.

> > > >

> > > > Just wondering whether iodine can help with any of this. Even to the

> > point

> > > > that she could eat some of these foods every now and then without so

> > many

> > > > problems? Or are these allergies likely to be permanent?

> > > >

> > > > Thanks!

> > > >

> > > >

> > > >

> > > > ------------------------------------

> > > >

> > > > All off topic posts should go to the IodineOT group

> > > > IodineOT/

> > > >

> > > >

> > > > Commonly asked questions:   http://tinyurl.com/yhnds5e

> > Links

> > > >

> > > >

> > > >

> > > >

> > >

> >

> >

> >

> >

> > ------------------------------------

> >

> > All off topic posts should go to the IodineOT group

> > IodineOT/

> >

> >

> > Commonly asked questions:   http://tinyurl.com/yhnds5e

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