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Medical Forum / Diseases and Disorders / Sinusitis / July 2007

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Corticosteroid Nasal Spray ineffectiveness compared to oral or iv based?

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surfinventures@spacemail.com - 12 Jul 2007 03:56 GMT
Why do oral and IV corticosteroids usually bring relatively much
stronger and immediate relief/reducing of inflammation/swelling where
the nasal spray based ones take much longer and generally much less
effective?  Is it because the active ingredients used in nasal spays
much milder, the amount of the active ingredient in them very small,
or  that the sprays fail to reach deep into the sinuses (which i'm
sure is part of it)?  A nebulized delivery system might probably help
reach deep into all the sinuses but I rarely hear about ent's
recommending that.
Susan - 12 Jul 2007 06:11 GMT
> Why do oral and IV corticosteroids usually bring relatively much
> stronger and immediate relief/reducing of inflammation/swelling where
[quoted text clipped - 5 lines]
> reach deep into all the sinuses but I rarely hear about ent's
> recommending that.

It also suppresses your immune system, leaving you less able to fight
infections.

Susan
rocketsman@talktalk.net - 12 Jul 2007 18:42 GMT
> x-no-archive: yes
>
[quoted text clipped - 13 lines]
>
> Susan

I tried nebulized delivery of steroid solution, it spread my infection
throughout my sinuses
Susan - 12 Jul 2007 19:55 GMT
> I tried nebulized delivery of steroid solution, it spread my infection
> throughout my sinuses

Which is a risk with any amount of any kind of steroid for any length of
time.  They're immunosuppressive, they lessen your ability to fight
infections.  That immediate anti inflammatory relief comes at a very
high cost.

Susan
august - 12 Jul 2007 21:46 GMT
> x-no-archive: yes
>
[quoted text clipped - 7 lines]
>
> Susan

Millions of people use small amounts of inhaled steroids with few or no side
effects.

I would not be able to breathe at night without some small level of steroid
usage and the same is true for millions of other people with chronic lung
diseases and asthma.

Let me weigh my options - suffocating inability to take a deep breath vs
very slight and avoidable known risks.  Easy choice for me to make.

back to the OP.  The reason why inhaled steroids do not seem to work as well
as oral steroids is that the oral steroids are much stronger and systemic in
action but maybe even more important - inhaled steroids are poorly absorbed
and take a long time to work if you are already very congested. You might
need to use a nasal decongestant like Sudafed or nasal spray like Afrin for
a few days until the inhaled steroid has a chance to start working properly.
It is also my experience that oral steroids are often used at too high of
dosage for many people. A person with acute sinusitis might not really need
to take 40mg of prednisone to shrink swollen sinuses when 5 mg oral
prednisone will often shrink swollen sinuses if taken for 2-3 days. I am
talking about acute sinusitis conditions and not minor sinusitis.

AW
Susan - 12 Jul 2007 22:12 GMT
> Millions of people use small amounts of inhaled steroids with few or no side
> effects.

More likely with undiagnosed side effects blamed on other things.

> I would not be able to breathe at night without some small level of steroid
> usage and the same is true for millions of other people with chronic lung
> diseases and asthma.

Maybe finding the inflammatory basis of the disease and maximizing
healthy immune and endocrine function is a better way to treat for the
long term?

> Let me weigh my options - suffocating inability to take a deep breath vs
> very slight and avoidable known risks.  Easy choice for me to make.

If you think those are your only choices and you've stopped searching, I
feel sorry for you.

Minimizing carb consumption quitel literally has many folks throwing
away their ashtma inhalers.  I finally learned why recently; insulin
lowers cortisol binding globulin, the protein that delivers cortisol to
cells.  Hyperinsulinemia simultaneously inhibits steroid biosynthesis.
This is how high carb diet promotes inflammation and lowering carbs
reduces it.

In some folks, higher CRH expression is involved; a novel new anti
anxiolytic drug that should be approved soon may be of use to folks like
you; it's called Antalarmin.

Susan
Steven L. - 12 Jul 2007 23:48 GMT
> x-no-archive: yes
>
[quoted text clipped - 10 lines]
> healthy immune and endocrine function is a better way to treat for the
> long term?

That's easier said than done.

We are a long way off from a cure for asthma.
Unlike sinusitis, there is evidence of genetic predisposition to asthma:

http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=600807

The chronic inflammation of the lungs that accompanies asthma is
persistent and continuous (hopefully at a low level unless there is an
acute attack).

Right now, suppressing that chronic inflammation and avoidance of acute
triggers are the standard treatment.

Chronic sinusitis is a little bit better in that if the sinusitis has an
identified cause (infection, anatomical, dental, etc.), this can be
found and corrected, and the sinusitis may be cured.

But that's not true in all cases.  I'm one of the patients for which no
underlying cause of the inflammation can be found.  In such cases, again
the disease (including the inflammation) must be managed, not cured.

>> Let me weigh my options - suffocating inability to take a deep breath
>> vs very slight and avoidable known risks.  Easy choice for me to make.
[quoted text clipped - 4 lines]
> Minimizing carb consumption quitel literally has many folks throwing
> away their ashtma inhalers.  

Please don't give that kind of suggestion to an asthma sufferer.  You
don't know the severity of this patient's asthma or much else about him.
 To imply that he could "throw away" his prescribed treatments and
pursue a nutritional approach (which you must admit is NOT part of the
standard medical treatment protocol for asthma) is a very risky thing to
do.  It's easy for a hopeful or desperate patient to be fooled by
placebo effects from nonstandard treatments.  And the wrong treatment
for an asthmatic patient can literally kill him.

At the very least, you should have reminded this patient not to change
the treatment program he's already been prescribed in ANY way, until and
unless he gets his physician's consent.  Asthma is NOT something to play
around with.

Signature

Steven D. Litvintchouk
Email:  sdlitvin@earthlinkNOSPAM.net
Remove the NOSPAM before replying to me.

Susan - 13 Jul 2007 00:31 GMT
> That's easier said than done.
>
> We are a long way off from a cure for asthma.

True, and longer because the money is in keeping it chronic and
inventing patentable treatments that folks are kept on while their
healht continues to decline.

> Unlike sinusitis, there is evidence of genetic predisposition to asthma:
>
[quoted text clipped - 6 lines]
> Right now, suppressing that chronic inflammation and avoidance of acute
> triggers are the standard treatment.

Yes, as usual, standard treatment is short sighted and toxic, though.
I'm not just blowing smoke when I tell you that asthma is dramatically
reduced in severity, down to a non issue for many, by low carb dieting,
as one avenue.

There's no question in my mind that endocrine and immune function run in
families.

> Chronic sinusitis is a little bit better in that if the sinusitis has an
> identified cause (infection, anatomical, dental, etc.), this can be
> found and corrected, and the sinusitis may be cured.

You keep sayin', but I keep not seein' cures.

> But that's not true in all cases.  I'm one of the patients for which no
> underlying cause of the inflammation can be found.  In such cases, again
> the disease (including the inflammation) must be managed, not cured.

Steven, make a distinction between cannot be found, and isn't being
looked for.

> Please don't give that kind of suggestion to an asthma sufferer.  You
> don't know the severity of this patient's asthma or much else about him.

All I suggested was low carbing, not throwing away his inhaler, for
pete's sake! It's true, and there's no harm, only potential gain in
trying it.  The diet comes first, not tossing the inhaler!

>  To imply that he could "throw away" his prescribed treatments and
> pursue a nutritional approach (which you must admit is NOT part of the
> standard medical treatment protocol for asthma) is a very risky thing to
> do.  It's easy for a hopeful or desperate patient to be fooled by
> placebo effects from nonstandard treatments.  And the wrong treatment
> for an asthmatic patient can literally kill him.

Steven, sometimes you're so concrete thinking that it's hard to believe
you're serious.  I'm suggesting that he try changing his diet.  If it
helps, then he can decide, with or without his doctor, what to do with
his meds.

You had to twist what I said beyond all recognition to come up with that
interpretation.  For someone like you, who routinely offers prescriptive
recommendations, it's pot calling kettle black.  I made a statement, not
a treatment recommendation.  It was based upon my lengthy observations.

In addition, I no longer have asthma; it's possible with allergic
desensitization, dietary modification to make it a non issue for many
folks. It's not as if the steroids aren't as harmful, just in a more
subacute way til sh.t meets fan, as the asthma.

> At the very least, you should have reminded this patient not to change
> the treatment program he's already been prescribed in ANY way, until and
> unless he gets his physician's consent.  Asthma is NOT something to play
> around with.

Steven, I don't TELL people what to do about treatment, I'm not a
clinician.  I share information, I don't offer prescriptive advice.

As usual, you pull the straw man out so you can make a tangential,
unresponsive argument.

Susan
Susan - 13 Jul 2007 17:41 GMT
I began by searching for info on ketotifen and its effects on cortisol,
and came across this.

http://www.blackwell-synergy.com/doi/abs/10.1111/j.1365-2222.1980.tb02132.x

http://www.erj.ersjournals.com/cgi/reprint/10/1/65.pdf

I know of the drug because an acquaintance with mast cell activation
disorder uses it to stave off anaphylaxis.  I wonder if ketotifen plus
low insulinogenic diet would yield more impressive results, since
insulin reduces available endogenous steroids and its delivery system?

In addition, my search yielded this, as good a case as any for someone
who's currently in need of any form of steroid treatment to keep
searching for less damaging interventions to at least minimize the risks.

http://adc.bmj.com/cgi/content/full/89/11/1055

Susan
Neil Brooks - 13 Jul 2007 19:07 GMT
>Steven, sometimes you're so concrete thinking that it's hard to believe
>you're serious.  

If that were true about Steven, then it would be mighty difficult to
distinguish between the two of you.
Susan - 13 Jul 2007 19:14 GMT
> If that were true about Steven, then it would be mighty difficult to
> distinguish between the two of you.

Nanny nanny boo boo to you, too.

Susan
truehawk - 13 Jul 2007 20:42 GMT
> x-no-archive: yes
>
[quoted text clipped - 4 lines]
>
> Susan

Steven:
I know that you have asthma, and are very intelligent and have
probably gone though a mound of research.
I think that the evidence is falling out that there is a 50/50 chance
that a given case of asthma will respond to macrolides.
I think the University of Wisconson is still recruiting asthma
patients for a clinical trial of 12 weeks of AZithroMycin.

http://clinicaltrials.gov/show/NCT00266851

I also believe that you are a lawyer?
You probably know in formal logic there is a form called the
disjunctive syllogism,
the condition is due to either A or B
Not A
So B.

For ashama, this often takes the presumption
The inflammation is due to either an infection, or an allergic
reaction.
Ashma does not respond to antibiotics,
therefore it is not caused by an infection but by
an allergic response, or an idiopathic inflammatory syndrome. or
whatever.
Now you know that once a biofilm forms it is very resistant to
antibotics, so a treatment failure with an antibotic like
amoxicillin only means the biofilm has already formed.
AND
The guys that rule out infection are not people who have ever looked
at the sputum
using stains that light up live bacteria regardless of their
identification.
Those that do call asthma, bronchiectasis.

Chronic macrolides have been found to reduce both the inflammation and
the sputum volume
in cases of bronchiectasis.
http://www.ncbi.nlm.nih.gov/sites/entrez

Now also with UNC's finding that bisphosphonates short circuit lataral
gene transfer
maybe there will be less hand ringing about treating with an antibotic/
antiresistance combo.

I think that we will eventually find that most of the other 50% of
asthma cases are caused by some other form of microbiota not sensitive
to macrolides, such as fungus or actinomycetes.

Anyway I have been wondering about the legality of MD's "ruling things
out" on the basis of tests that have a better than 50% proportion of
false negatives in vio.

I also have personal experience with steroids making me feel better
while I was getting worse.
Hopefully the quality time that steroids buy will enable a cure to be
found before the bill comes due.
Susan - 13 Jul 2007 21:39 GMT
Elizabeth, I could be wrong, but I'm pretty sure Steven is a non
ashtmatic engineer?

Susan

>>x-no-archive: yes
>>
[quoted text clipped - 61 lines]
> Hopefully the quality time that steroids buy will enable a cure to be
> found before the bill comes due.
truehawk - 13 Jul 2007 22:10 GMT
> x-no-archive: yes
>
> Elizabeth, I could be wrong, but I'm pretty sure Steven is a non
> ashtmatic engineer?
>
> Susan

Susan:
I guess we will find out.
august - 13 Jul 2007 22:50 GMT
>> x-no-archive: yes
>>
[quoted text clipped - 58 lines]
> Email:  sdlitvin@earthlinkNOSPAM.net
> Remove the NOSPAM before replying to me.

I do not have asthma but sarcoidosis of the lungs.  One squirt of Flovent
daily provides some much needed symptomatic relief.

Susan's blanket statements against all use of corticosteroids are about as
logical as those of ironjustice's postings about iron consumption. When she
has spent some length of time walking in the shoes of all the people she
tells not to use corticosteroids then maybe she will have a true basis of
experience from which to speak. Until then she is just another Usenet poster
stuck in a rut.    AW
Susan - 13 Jul 2007 23:31 GMT
I do not have asthma but sarcoidosis of the lungs.  One squirt of Flovent
daily provides some much needed symptomatic relief.

Susan's blanket statements against all use of corticosteroids are about as
logical as those of ironjustice's postings about iron consumption. When she
has spent some length of time walking in the shoes of all the people she
tells not to use corticosteroids then maybe she will have a true basis of
experience from which to speak. Until then she is just another Usenet
poster
stuck in a rut.    AW <<

You aren't a very astute reader, are you?

I have *never* made any recommendation to anyone to stop using their
steroids.  I have shared information provided in the endocrinology
research literature about how to minimize the adverse effects for those
who have no choice about using them.  These include dosing only in the
a.m. if possible; steroids in the a.m. suppress the HPA for 12 hours;
steroids at night suppress for 24 hours.  Every other day dosing is
recommended where possible, in order to preserve adrenal function.

The endocrinology literaturs says that patients on glucocorticoids "must
eat a high protein diet."

I urge anyone using steroids of any strength to read the literature, do
as much research as it takes to mimize their use as much as possible.
Anyone who keeps taking adrenal suppressive meds without a second
thought or careful monitoring is begging for trouble, and the doctors
are not monitoring adrenal function (as they're supposed to, according
to the endo lit), nor observing even the most blatant signs of it.

I don't know what kind of shoes *you're in*, but I have iatrogenic
Cushing's disease, both a large pituitary tumor and a hyperplastic
adrenal gland that will likely both have to come out. Cure rate looks to
be about 56%, particularly after longstanding disease and large tumor.
This surgery performed by passing an endoscope through the sphenoid
sinus and drilling into the center of the skull. I guess removing the
adrenal will be a walk in the park, by comparison.  I have no choice but
to consider their removal because Cushing's will continue to destroy my
health and stamina, my vision, balance and ability to live anything like
a normal life.

I got this problem by obediently following the instructions of my
university based practitioners for decades during which they ignored all
the signs and symptoms of my adrenal crises, Cushing's syndrome and even
when I became immune compromised and disabled, a condition I've been in
since 1991.  They gave me none of the advice I've found in the
endocrinology literature, three endocrinologists failed to diagnose it,
too, even after labs showed adrenal crisis, PCOS without insulin
resistance, weight gain on a bird's diet, labile hypertension and
diabetes, again, without IR.

Perhaps you find ignorance is bliss; I'll never just take my medicine
unquestiongily again.

Don't ever try to stack your suffering up against someone else's; it's
whiny and cowardly.

Susan
truehawk - 14 Jul 2007 05:24 GMT
> x-no-archive: yes
>
[quoted text clipped - 57 lines]
>
> Susan

Susan:
I agree that cortisone and predisone scripts are handed out a palative
treatment with far too little monitering of their
long term effects.
I was in a a car wreck in 1985 and while the insurance companys were
argueing who was going to pay for surgery on my knee
was given cortisone shots once a month.
When my knee was finally sorted out it heeled very quickly but I began
to wheeze and cough,
so they prescribed steroids again for that
I declined, and had to put up with some flack for doing so.
I had read some reports of adverse results from chronic cortisteroids
in Science News and did
some follow up reading at the UCLA library.
I had to put up with comments from a family member that I thought that
I knew better than the doctor. Etc, etc.
I eventually chased it back out of my lungs.

You have every right to be enraged, but not at Augest or Steven.
There is a lot of pressure to use these drugs.
If one refuses them they act as if one just wants to be difficult and
choke to death for attention.
Not cool.

That said, I am sure that these drugs have a place as brief therapy in
treating accute allergic reactions.
and I don't think the inhalers are as bad as the shots and pills.
I think that the inhalers may muck with the bugs more than the human,
but the set it and forget it
way they are currently used is a disgrace.
ENTs are comfortable with the cortisone based sprays, but shy away
from prescribing the antifungals
which have a lower risk profile.
Susan - 14 Jul 2007 15:22 GMT
> You have every right to be enraged, but not at Augest or Steven.

Elizabeth, I am not enraged, first of all.

Second all, both Steven and August have responded to information and
citations with straw man arguments, accusing me of saying and doing what
I have never done.

Steven, for instance, routinely offers prescriptive medical advice here,
which I *never* do, and then accuses me of doing so when I clearly have not.

August posted nothing of use to the thread and mischaracterized my
posting on this issue; which has had everthing to do with minimizing the
risks of steroid use, not throwing it away where necessary.

> There is a lot of pressure to use these drugs.
> If one refuses them they act as if one just wants to be difficult and
> choke to death for attention.
> Not cool.

Yeah, well.  I'm the living proof of what happens to compliant patients
who accept bland assurances from doctors who, I've learned, rarely even
have a *clue* as to the true risks of the drugs they rx.

> That said, I am sure that these drugs have a place as brief therapy in
> treating accute allergic reactions.

No question about it.

> and I don't think the inhalers are as bad as the shots and pills.

I don't know why you think that, since shots and pills are used for a
shorter duration, often, while the unwarranted presumption of safety has
folks using inhalers and sprays for years, twice per day, suppressing
the HPA around the clock.  Some folks have psychotic symptoms from their
first dose of spray, some have insidious worsening health, as I did from
topicals, never suspecting the steroids.

> I think that the inhalers may muck with the bugs more than the human,
> but the set it and forget it
> way they are currently used is a disgrace.

No, Elizabeth, the inhalers are efficiently delivering  a dose of
steroids to the bloodstream.  There're few routes more efficient at
doing so.

> ENTs are comfortable with the cortisone based sprays, but shy away
> from prescribing the antifungals
> which have a lower risk profile.

Doctors are dopes, mostly.  Antifungals, BTW, shut down the adrenals,
some more than others.  In fact, ketoconazole does it so well, it's a
Cushing's disease treatment.

Itraconazole and fluconazole do it, too, but not as reliably.

Susan
Neil Brooks - 14 Jul 2007 17:44 GMT
>x-no-archive: yes
>
>> You have every right to be enraged, but not at Augest or Steven.
>
>Elizabeth, I am not enraged, first of all.

You seem to be the only person who holds that position.

Maybe it's worth re-examining?

I mean: the REST of us could be wrong, but ....
Susan - 14 Jul 2007 19:22 GMT
> You seem to be the only person who holds that position.
>
> Maybe it's worth re-examining?
>
> I mean: the REST of us could be wrong, but ....

Is it your position that the majority is usually right just by dint of
numbers?

I prioritize thinking over herding.

Susan
Neil Brooks - 14 Jul 2007 21:42 GMT
>x-no-archive: yes
>
[quoted text clipped - 6 lines]
>Is it your position that the majority is usually right just by dint of
>numbers?

Uh, no.  I was actually quite okay with my observation solely BASED on
my observation, but thought you might take it to heart if other
people, too, found you more than a bit caustic.

>I prioritize thinking over herding.

And most things over sensitivity, compassion, kindness or diplomacy.

Thick skin and an angry demeanor really aren't laudable virtues.

Take care now.  

Buh-bye.
Susan - 14 Jul 2007 23:47 GMT
> Uh, no.  I was actually quite okay with my observation solely BASED on
> my observation, but thought you might take it to heart if other
> people, too, found you more than a bit caustic.

I'll definitely own to wandering into caustic at times.

>>I prioritize thinking over herding.
>
[quoted text clipped - 5 lines]
>
> Buh-bye.

You know, I share information, not warm fuzzies, it's true.  I search as
assiduously as I do through the science in order to help myself, and I
share it to help others have a direction to search/research in if
they're also suffering from similar things and want to know how to
better protect and help themselves.  That's my way of demonstrating how
I care; it's an effort to be of assistance.

If that's not the kind of help you want, you should kill file me,
because there is surely nothing of value to you in my posts.

If irritation at being misquoted and misrepresented is evidence of lack
of virtue, then, hey, GUILTY.

Susan
truehawk - 15 Jul 2007 06:55 GMT
> x-no-archive: yes
>
[quoted text clipped - 28 lines]
>
> Susan

Susan;
The main objection that I have to your comments and research
is that you have requested that they not be archived.
Snark aside I think that your research has real value, and should not
be self redacted for what ever reason.

The  problem of over use of coristeroids  is real.
I have corrosponded with AT LEAST a half dozen people over years that
were suffering from bone loss
or Cushings-like symptoms after using steroids prescribed for
'allergy" for years.
In fact I think the whole rational behind calling Fungal Sinusitis
"Allergic Fungal Sinusitis" is so that
the docs can prescribe steroids for the "allergic inflammation", and
see some quick reduction in swelling.

Which would be okay if they then got rid of the infection but unless
that happens, I feel it is kind of like
deadening the pain in the leg of a racehorse so he can run.
I remember readling one report where the a researcher exposed
"Allergic Fungal Sinusitis" patients to
killed fungus and got no elevation in allergic reaction markers,
however these were strongly activated in the
same individuals by live fungus.
august - 14 Jul 2007 21:20 GMT
> x-no-archive: yes
>
> I do not have asthma but sarcoidosis of the lungs.  One squirt of Flovent
> daily provides some much needed symptomatic relief.

susan wrote:

> Don't ever try to stack your suffering up against someone else's; it's
> whiny and cowardly.
>
> Susan

If that comment is "stacking up suffering" then I must be confused as to
what constitutes stacking up suffering.

This seems like a much better example of "stacking up suffering".

susan wrote:

I don't know what kind of shoes *you're in*, but I have iatrogenic
Cushing's disease, both a large pituitary tumor and a hyperplastic
adrenal gland that will likely both have to come out. Cure rate looks to
be about 56%, particularly after longstanding disease and large tumor.
This surgery performed by passing an endoscope through the sphenoid
sinus and drilling into the center of the skull. I guess removing the
adrenal will be a walk in the park, by comparison.  I have no choice but
to consider their removal because Cushing's will continue to destroy my
health and stamina, my vision, balance and ability to live anything like
a normal life.

I got this problem by obediently following the instructions of my
university based practitioners for decades during which they ignored all
the signs and symptoms of my adrenal crises, Cushing's syndrome and even
when I became immune compromised and disabled, a condition I've been in
since 1991.  They gave me none of the advice I've found in the
endocrinology literature, three endocrinologists failed to diagnose it,
too, even after labs showed adrenal crisis, PCOS without insulin
resistance, weight gain on a bird's diet, labile hypertension and
diabetes, again, without IR.

......................

And - no - you do not know what shoes I am in.     AW
judy - 15 Jul 2007 12:46 GMT
> x-no-archive: yes
>
[quoted text clipped - 13 lines]
>
> Susan

I have read all these posts with much interest because after many
months (years) of pain, surgery, medications, tests (no allergies) I
find that oral steroids are the only treatment that provide real (of
course not total) relief...I am aware of all the risks (I am sixty
five years old and have been in this awful mess for 25 years) but want
to know if anyone is using oral steroids on an ongoing basis (every
other day?) and at what dosage??  Judy
august - 16 Jul 2007 01:54 GMT
> I have read all these posts with much interest because after many
> months (years) of pain, surgery, medications, tests (no allergies) I
[quoted text clipped - 3 lines]
> to know if anyone is using oral steroids on an ongoing basis (every
> other day?) and at what dosage??  Judy

Judy,   While I might use Rhinacort or Flonase for maybe 8-9 months of the
year I personally would never use oral steroids on a regular basis for
sinusitis. While terribly uncomfortable sinusitis is usually not a life and
death or organ failure type situation. Oral steroids act very differently
when taken regularly than when taken for a few days every couple years
during an acute sinus infection. At 65 the risk of osteoporosis is very real
for you so you need to be having bone density scans done if you are using
oral steroids often.

Are you irrigating regularly and if so, what type phelgm is coming out? Are
you having repeated sinus infections?     AW
judy - 16 Jul 2007 13:44 GMT
> > I have read all these posts with much interest because after many
> > months (years) of pain, surgery, medications, tests (no allergies) I
[quoted text clipped - 15 lines]
> Are you irrigating regularly and if so, what type phelgm is coming out? Are
> you having repeated sinus infections?     AW

thanks for responding AW...I am irrigating like crazy, using topical
steroids and antibiotics when necessary. Altho the infections seem to
have slowed , I have a constant dripping and irritation of the tissues
with frequent purulent discharge that have now spread to my
nasapharanx and right side of my chest..Yet, they cannot see the
discharge when they examine me as it comes from a very deep place...I
believe that some of what they call my "mucosal problem" stems  from
scarring and inflammation and post surgical problems (ENS?).  I use
alot of Ponaris too just to help manage the incredible pain....Even
tho this is not life threatening, I often find it unbearable and
wouldn't care if it were..Somehow I continue to live a normal active
life! ..Sometimes I will have a week or two where it is more
manageable and that is cause for celebration (!!) so that is why I
would rather use the  oral steroids which give a bit of relief and let
the chips fall where they may! .Although I pushed for my (5) surgeries
I think now they may have been a mistake...BEWARE   judy
august - 16 Jul 2007 22:42 GMT
>> > I have read all these posts with much interest because after many
>> > months (years) of pain, surgery, medications, tests (no allergies) I
[quoted text clipped - 36 lines]
> the chips fall where they may! .Although I pushed for my (5) surgeries
> I think now they may have been a mistake...BEWARE   judy

Hi Judy,    I was not familiar with Ponaris. Appears to be a concentrate
form of substances similar to Alkalol. I'll have to buy a bottle and try it.

I was also pushed towards surgery three years ago. I've had several non
nasal surgeries and one thing for sure is that things in the body are always
different post surgery and even the best planned surgery often has
unexpected repercussions of some type or another.

Your sinus situation appears very complicated and I can understand why a few
days of relief might seem to be worth the risk of the oral steroids.

Have you considered allergy retesting from a different type allergy
physician?  If your symptoms change with the seasons this might be helpful.

Have they done any sinus cultures that indicated what you might be fighting
or do you think the surgery has just mucked up your sinus function?

I'd watch that chest involvement carefully. I was recently treated with
Cipro for a UTI and after a week I realized that I also had a concurrent
deep chest infection going on that the Cipro was working on positively. I've
now been coughing major gunk out for a week. I'm hoping this clearer
breathing lasts a while now that I am off the Cipro. I'd been feeling so
generally crappy that I did not even realize that I had the chest infection
going on for at least a month or more.  go figure.    AW
truehawk - 18 Jul 2007 01:00 GMT
> >> "judy" <eyelash...@aol.com> wrote in message
>
[quoted text clipped - 65 lines]
> generally crappy that I did not even realize that I had the chest infection
> going on for at least a month or more.  go figure.    AW

Judy/Augest:
I don't know what your financial situation is, but I have been
thinking seriously of going to Russia
to try phages and consider the $7000.00 cost as a down payment on the
rest of my life.
judy - 19 Jul 2007 13:32 GMT
> > "judy" <eyelash...@aol.com> wrote in message
>
[quoted text clipped - 77 lines]
>
> - Show quoted text -

Well if you know that you have a chronic bacterial infection (mine is
mostly, I think, damaged tissue) that sure makes sense to go to Russia
if the phage treatment cannot be available here!  It's only money
compared to the possibility of the rest of a happy life.  I am going
to research it more and keep it in mind...thanks for the suggestion!!
judy
judy - 18 Jul 2007 19:15 GMT
> >> "judy" <eyelash...@aol.com> wrote in message
>
[quoted text clipped - 67 lines]
>
> - Show quoted text -

yes, i'd have to say i'm "mucked up"....am sure that no alllergy...too
diffuse for that...I do love ponaris (it is much more xpensive than
Alcolol) but made of heavier oils (cajeput, pine) that relieve
irritation better...Thanks for your support and I hope that you stay
healthy...btw, if you know any great ent's on the East Coast please
share...I am ready for a return visit to David Kennedy who did my
first surgery but don't hold out much hope as my problems are with the
quality (now) of the respiratory tissue in general.. Also consulting
with a plastic surgeon for possible repair of nasal valve collapse
(another byproduct of surgery.....bwell..judy
judy - 19 Jul 2007 13:36 GMT
> >> "judy" <eyelash...@aol.com> wrote in message
>
[quoted text clipped - 67 lines]
>
> - Show quoted text -

Didn't see my reply post on here, AW, so writing again...I think I am
basically "mucked up" as far as my sinus and nasal linings are
concerned...I am glad that the Cipro is workoing for you as the
Prednisone seems to be giving me a breather.. I have been recently re
tested for allergy and it also does not seem to be season related but
maybe there is some other auto immune reaction I am missing as the
steroids certainly have an effect... I hope that you don't have to
have surgery...I am considering plastic surgery for nasal valve
collapse as perhaps that is contributing to my problems...By the way,
if you know if any great ENT's on the East Coast, please let me
know..I am thinking of revisiting my first surgeon, David
Kennedy...Hoping that you stay WELL...judy
august - 19 Jul 2007 22:44 GMT
>> Hi Judy,    I was not familiar with Ponaris. Appears to be a concentrate
>> form of substances similar to Alkalol. I'll have to buy a bottle and try
[quoted text clipped - 43 lines]
> know..I am thinking of revisiting my first surgeon, David
> Kennedy...Hoping that you stay WELL...judy

Hi Judy,   Sorry but I am not familiar with Drs on the east coast as I am
out west. If you make it out west I'd recommend Dr Peter Hwang at Stanford.

http://med.stanford.edu/ohns/faculty/hwang.html

I'm headed back to the Dr today because I have been having more asthma-like
symptoms. I'm hoping it is just the muggy weather.  Never a dull moment.

I do not know much about the nasal valve collapse but it sounds like
something that is not pleasant and probably difficult to fix. I hope you can
find a good surgeon.

all the best,     AW
truehawk - 20 Jul 2007 02:10 GMT
Judy:
It could be that you just have damaged tissue, but consider this.
http://www.phageinternational.com/doc/tbsordie.pdf

After looking at the problem the way a metallurgist looks at it, mass
balances, energy balances,
etc.  it looks like we have a mat of organisms with strata of
complementary metabolic process organized
to eat us as if we were an iron pipe. They are mostly hyland, that is
clear, and the
goo the "wild type organisms" make confound the ordinary gram staining
process that
standard bacterial identification and taxonomy is based on.
If you imaged the baceria using  SYTO live/ dead stain such as 11 or
13, there is an awful lot
there that never shows up in cultures. The first time I saw it my hair
stood on end.

No metagenomics have ever been done on CS mucus vs heathy mucus, but
it I posted a paper here
that stated that no gram negative rods were found in healthy sinuses.
But I would be willing to bet that if you could go to UM and have them
SEM a biopsy for you that
your "inflammed damaged tissue" is covered with a biofilm that is
inflamming the tissue in the process of
causing the tissue to weep the blood that it lives on.
Getting one of these biofilms requires nothing more than that the
protective lining of the sinuses be compromised by a
respiratory virus. . The bacteria in the biofilm appear
to spread from the adenoids, and they bullseye as if they spread a
step further each time you get the flu.
A guy that worked for the CDC proved that in 1980 or so. In fact the
way that St Jude's children's creates it's
mouse model for CS is to expose the mice to the flu and then staph.
Most ENTs are not microscope jocks, nor are they aware that most of
the bacteria present will not show up,
nor are they aware of the lousy sensitivity of the tests they use to
detect bacteria. Tests invented 80 years ago.
They don't find anything in the goo because they don't use any of the
tools invented in this century!!!!!

I expect some real breakthroughs when this changes, but I have also
seen real breakthough information like
that Staph produces an enzyme that destroys cystic fibrosis
transmembrane conductance factor vanish without
a ripple.

So I guess it is up to us to keep the info from vanishing.

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