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Medical Forum / Diseases and Disorders / Sinusitis / August 2005

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Chronic sinus infection thought to be tissue issue, Mayo Clinic scientists show it's snot

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afdr9lk - 29 Jul 2005 04:51 GMT
http://www.eurekalert.org/pub_releases/2005-07/mc-csi072805.php
MS - 29 Jul 2005 09:42 GMT
> http://www.eurekalert.org/pub_releases/2005-07/mc-csi072805.php

Ha! Good pun! (in thread title) ;-)

And interesting article. One wonders though--in order to create so much bad
mucous, don't the mucous membranes also have to be screwed up? So could the
problem really "only" be the mucous, and not the mucous membrane. the tissue
discussed?
kathywb2001@yahoo.com - 01 Aug 2005 18:56 GMT
So does anyone think this may be possibly why so many of us blow out
all of this snot and it doesn't show on CT scans?

Kathy
Don Brady - 01 Aug 2005 19:09 GMT
>So does anyone think this may be possibly why so many of us blow out
>all of this snot and it doesn't show on CT scans?

Personally, I doubt it has much practial signficance at this time.

Just another Mayo research hypothesis which will help them get more research
grants..

By the way, how does it fit in with their last grand theory?
Steven L. - 01 Aug 2005 19:57 GMT
>>So does anyone think this may be possibly why so many of us blow out
>>all of this snot and it doesn't show on CT scans?
[quoted text clipped - 5 lines]
>
> By the way, how does it fit in with their last grand theory?

Which one?  The Allergic Fungal Sinusitis Theory or the Biofilm Theory?

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Don Brady - 01 Aug 2005 20:15 GMT
They certainly do have a magnificent publicity machine, don't  they?

Their ability to get these arcane theories translated into layman's language
and out into the popular media is amazing.....
kathywb2001@yahoo.com - 01 Aug 2005 20:40 GMT
So why would anyone want to go to them  for chronic sinusitis?   I went
to Mayo, Jacksonville several years ago.  I saw a very good allergy
doctor there who was the first to do endoscopy and saw the purulent
drainage from my sinuses and suggest sinusitis.  He put me on
antibiotics and I started coughing up the stuff for months.  I went
back later and saw a pulmonologist and an ENT, who both looked at CT
scans and said there was nothing wrong with my sinuses or lungs.  I
later had surgery and did have chronic ethmoid sinusitis.  I personally
believe noone really has a clue as to what causes it or how to treat
it.
Don Brady - 01 Aug 2005 22:54 GMT
>So why would anyone want to go to them  for chronic sinusitis?   I went
>to Mayo, Jacksonville several years ago.  I saw a very good allergy
[quoted text clipped - 6 lines]
>believe noone really has a clue as to what causes it or how to treat
>it.

They are very conservative about surgery at Mayo for some reason.
Steven L. - 02 Aug 2005 16:23 GMT
>>So why would anyone want to go to them  for chronic sinusitis?   I went
>>to Mayo, Jacksonville several years ago.  I saw a very good allergy
[quoted text clipped - 8 lines]
>
> They are very conservative about surgery at Mayo for some reason.

Then I may not go there after all.

I am convinced there are lingering pockets of infection in my
sinuses--maybe even in the frontals or sphenoids.

I want to find the most *aggressive* surgeons in America.
Any ideas?

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Don Brady - 02 Aug 2005 18:56 GMT
>> They are very conservative about surgery at Mayo for some reason.
>
[quoted text clipped - 5 lines]
>I want to find the most *aggressive* surgeons in America.
>Any ideas?

U. of Penn.  or many surgeons trained there - after all they believe in
removing more bone.
http://www.uphs.upenn.edu/news/News_Releases/dec00/Sinusitis.shtml

I know that you saw one trained there and he for one did not currently use that
approach though.

I think there are quite a few who do.

You could call Dr. Kennedy's office and ask for the name of some who do.....
kathywb2001@yahoo.com - 03 Aug 2005 00:09 GMT
I sent my scans to Dr. Kennedy and I think he did look at them.  I
called several times and finally the nurse told me that he said I
wasn't a candidate for surgery at the time.  I finally got the scans
back after 2 months.  It might be worth a call to his office to see if
he or someone else will look at the scans before you go back.  (One
scan even showed possible old bone infection in the ethmoids;  From
what I read about him and his work, he even said that the infection
didn't have to be active to cause a problem.)  But anyway, I saved the
money for a trip up there.  I still think there is something going on
in my ethmoids.  I did better on the IV antibiotics, but have gone
downhill after being off.  The IV Vfend (antifungal) didn't help at
all, so I don't know what that does to the allergic fungal sinusitis
theory.  I did have mold isolated from sinuses on 2 occassions, but I'm
not sure the antifungals are the answer.   I've been using Ketek with
some success with a bactrim nasal spray.

Good luck!
Kathyw
Steven L. - 03 Aug 2005 02:19 GMT
> I sent my scans to Dr. Kennedy and I think he did look at them.  I
> called several times and finally the nurse told me that he said I
[quoted text clipped - 11 lines]
> not sure the antifungals are the answer.   I've been using Ketek with
> some success with a bactrim nasal spray.

Have you found Ketek to work better than other antibiotics?

My ENT gave me some Ketek to try.  But I'm beginning to wonder if I
should bother, given how many other antibiotics have failed me.

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Remove the NOSPAM before replying to me.

kathywb2001@yahoo.com - 03 Aug 2005 04:07 GMT
The Ketek has helped me more than anything I've tried.  I took two
rounds of it 2 tablets a day for 5 days twice in June.  Since then my
PC doctor has me trying a maintenance of 1 a day.  I'm not really
thrilled about taking it long term, but it seems to be the only thing
that keeps me half way functional.  I might add that he now thinks that
I have an autoimmune reaction to the coagulase negative staph that I
also keep culturing out of my sinuses.  This has been discussed here
before, and I know it is controversial as it is a part of the normal
flora, but as someone else pointed out, the sinuses are supposed to be
sterile and there are some studies that  suggest that it can act as a
pathogen in chronic sinusitis.  To be honest, I really don't know.
I've had all this stuff cultured out,  yet my sinuses look OK, but I
still either have this tremendous drainage (mostly white to jelly-like
now, but has been dark brown in the past) or when it doesn't drain I
have tremendous pain and pressure.  I'm using the bactrim spray also
because I'm not sure I'm rid of the Stenotrophomonas.  That's why I
warn people not to take antibiotics if their symtpoms clear up without
them.   I'm in a vicious cycle now of having to take them to stay
functional, but then run the risk of getting more resistant infections,
plus I then have to take antifungals to get rid of the yeast.  I don't
know how much more my liver can take.

If you do take the Ketek, be aware that it can cause blurred vision.  I
havn't been bothered with that especially with one a day.

Kathyw
MS - 04 Aug 2005 05:48 GMT
I took Ketek once, not sure if it helped. But it was only prescribed for me
for five days (very common with this, like Zpac, it comes in a five day
"pac"). I think chronic sinusitis probably needs a longer dosage, no matter
what the antibiotic.

From what I've read, however, it is supposed to be very good. There is
supposed to be something about its make-up, which would make it difficult
for bacteria to become resistant to it. Sinusitis is listed as one if its
indications. Otherwise, I think very similar to macrolides, like
azithromycin (zithromax, zpac).

Speaking of the latter, I came across an article saying that some doctors
prescribe long-term azithromycin to cystic fibrosis patients. Not only for
its bactericidal properties (which I assume would wane over time with
long-term usage, resistance, etc.), but that it has a good anti-inflammatory
effect, without the negative effects of oral steroids or NSAIDS. I wonder if
that has even been tried for chronic sinusitis? (I read in another article
about some research showing genetic similarities between cystic fibrosis and
chronic sinusitis patients.)

Without insurance that (long term usage of azithromycin) would be extremely
expensive. And I wonder if insurance companies would cover such an
"off-label" use of the medicine, when it is usually only prescribed for five
days.

> The Ketek has helped me more than anything I've tried.  I took two
> rounds of it 2 tablets a day for 5 days twice in June.  Since then my
[quoted text clipped - 22 lines]
>
> Kathyw
kathywb2001@yahoo.com - 05 Aug 2005 04:21 GMT
> I took Ketek once,  I think chronic sinusitis probably needs a longer dosage, no matter  what the antibiotic.

Yes, I agree.

> From what I've read, however, it is supposed to be very good. There is
> supposed to be something about its make-up, which would make it difficult
> for bacteria to become resistant to it. Sinusitis is listed as one if its
> indications. Otherwise, I think very similar to macrolides, like
> azithromycin (zithromax, zpac).

Yes, I've read that too.  The only thing that I'm concerned about is
that it doesn't cover very many gram negative bacteria, so there is a
possibility that some nasty gram negative bacteria would grow that are
very hard to get rid of.

> Speaking of the latter, I came across an article saying that some doctors
> prescribe long-term azithromycin to cystic fibrosis patients. Not only for
[quoted text clipped - 4 lines]
> about some research showing genetic similarities between cystic fibrosis and
> chronic sinusitis patients.)

There are some studies that show that patients with chronic sinusitis
have a varient of the cystic fibrosis gene without the lung
involvement.  I believe that the Ketek is supposed to be better than
azithromycin for sinusitis.

> Without insurance that (long term usage of azithromycin) would be extremely
> expensive. And I wonder if insurance companies would cover such an
> "off-label" use of the medicine, when it is usually only prescribed for five
> days.

I've been very lucky with insurance.  Most would cover, I think, if the
doctor diagnoses chronic sinusitis.
MS - 05 Aug 2005 16:01 GMT
> There are some studies that show that patients with chronic sinusitis
> have a varient of the cystic fibrosis gene without the lung
> involvement.

Yes, that is very interesting. Since CF involves overly thick mucous, I
wondered if there was some connection.

What are all the treatments for CF? I wonder if any of them could help us as
well. If they come up with some kind of major breakthrough for CF, I hope it
can be tried on us as well.

>I believe that the Ketek is supposed to be better than
>azithromycin for sinusitis.

Well, of course, what is "better" for one case, might not be for another,
depending on what micro-organisms one is infected with, etc. Ketek is newer,
therefore doesn't have the same resistance developed to it among bacteria,
and is supposed to be designed so that resistance is less likely to develop.

The problem with either of these is that most docs prescribe them only in
the five day "pacs" (a way for pharma companies to charge a lot for a few
pills), which is usually not sufficient for chronic sinusitis.

As I mentioned in the prior post though, the main reason some docs are
prescribing long term usage of azithromycin to cystic fibrosis patients, is
not for its antibacterial properties, but that it also has anti-inflammatory
properties. I don't know if Ketek has the same anti-inflammatory properties
or not.
Harry - 05 Aug 2005 16:52 GMT
Hello,
Let us assume a sinus condition started way back when; of course the first
thing we do is go get an antibiotic to cure the "infection":
INFECTION:
First there is irritation;
Second there is swelling;
Third there is blockage;
Fourth there is infection;
Or four strikes and youare out (Women's baseball).
Now we know sinus trouble is caused by the digestive system being out of
order. We also know antibiotics totally destroy the digestive system (temporarily
MAYBE). The Candida just loves this and proliferates . . . in your nose too
. . . Then after years and years of this abuse, you wonder why your sinus
trouble has gotten increasingly worse over the years, and are finally resorting
to even surgery. Get the picture? Know thine enemy, and he is you, and what
you are putting into your stomach and what youarenot putting into your stomach.
If you put bad gas into your car, and you start getting "motor trouble" because
of it, of course youare going to blame it on the motor and the mechanic will
be more than happy to oblige you - you know the rest of the story, and itis
no different with doctors, as they too are in it for the money, honey.

>> There are some studies that show that patients with chronic sinusitis
>> have a varient of the cystic fibrosis gene without the lung
[quoted text clipped - 24 lines]
>properties. I don't know if Ketek has the same anti-inflammatory properties
>or not.

 
Don Brady - 03 Aug 2005 03:33 GMT
>I sent my scans to Dr. Kennedy and I think he did look at them

That was a very good move potentially even though he did not follow up for you
in this  case.
.
>called several times and finally the nurse told me that he said I
>wasn't a candidate for surgery at the time.  I finally got the scans
[quoted text clipped - 13 lines]
>Good luck!
>Kathyw
afdr9lk - 03 Aug 2005 03:41 GMT
> I sent my scans to Dr. Kennedy and I think he did look at them.  I
> called several times and finally the nurse told me that he said I
[quoted text clipped - 14 lines]
> Good luck!
> Kathyw

How long were you on the IV antibiotic?
kathywb2001@yahoo.com - 03 Aug 2005 04:14 GMT
I was on Timentin for 2 months.
MS - 04 Aug 2005 05:38 GMT
> I've been using Ketek with
> some success with a bactrim nasal spray.
>
> Good luck!
> Kathyw

Bactrim nasal spray? Is that available? Or home-made, crushing a Bactrim
tablet in saline? (That would get excipients up your nose as well as the
Bactrim.)
kathywb2001@yahoo.com - 04 Aug 2005 13:53 GMT
The bactrim is a nasal spray that my current ENT prescribed through a
compounding pharmacy.
MS - 05 Aug 2005 15:51 GMT
> The bactrim is a nasal spray that my current ENT prescribed through a
> compounding pharmacy.

Does it work well in getting rid of infection?
kathywb2001@yahoo.com - 06 Aug 2005 02:50 GMT
I guess it depends upon what kind of infection you have.
MS - 04 Aug 2005 05:35 GMT
> I want to find the most *aggressive* surgeons in America.
> Any ideas?

Are you kidding, Steven? Too much surgery can make one's condition much
worse.

If you see an allergist after having surgery, they'll tell you the surgery
is the cause of your problem.

Didn't you have surgery before, Steven? I thought you had.

It certainly is no cure-all.

Perhaps you could get the info from Don to see his surgeon, Dr. Kennedy, one
of the most famous sinus surgeons. Get more than one opinion though, before
deciding on surgery.
MS - 04 Aug 2005 05:31 GMT
>..... I
>later had surgery and did have chronic ethmoid sinusitis.  I personally
> believe noone really has a clue as to what causes it or how to treat
> it.

Unfortunately that seems to be the case. It's all guesswork. Medical science
really knows little about chronic sinusitis. I don't think much research has
been done in that area. Not usually a "killer disease" like heart attack or
cancer, but one that makes millions of people miserable throughout the
world. I hope more research is done in this area. Perhaps with the advent of
more genetic study, and gene-based medicine, perhaps with stem cells, there
will be a breakthrough in this area. Perhaps only wishful thinking, but I
sure wish more research would go into this condition.
 
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