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Medical Forum / Diseases and Disorders / Sinusitis / August 2007

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Sinus symptoms that don't let up...

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dygerati@gmail.com - 10 Aug 2007 21:12 GMT
I've posted a few times before regarding my condition, and received a
lot of support from you guys(thanks!). Summary of just what my
condition is:

Symptoms:

Post-nasal drip
chronic cough
brain fog
headaches
light sensitivity seems to worsen the previous two

At least some of these symptoms have been around for about 18 months,
and all of them for about 12.

Attempted Treatment:

Several rounds of anti-biotics (augmentin, cipro, levaquin)
Flonase/Allegra for over a month (so far)
prednisone for 2 weeks

None of the above has had any effect. At first the theory was that I
have a sinus infection, which an MRI actually pointed to, hence the
anti-biotics. I had two subsequent CT scans that were negative. Then,
a couple months ago, I saw an allergist and received a very positive
allergy test which concluded that I was allergic to pretty much
everything except for dogs. Next came the flonase, allergra, and most
recently the prednisone, which I just finished a couple days ago. No
effect, and I believe the brain fog/etc has actually gotten worse due
to the prednisone.

I've been given the impression that a person with chronic sinusitis
has symptoms that come and go. Mine never do. Sometimes they're bad,
other times they're worse, but always present. This is one reason why
allergies seemed to fit (although I thought it a bit of a stretch for
them to cause year-around symptoms). Now I've been told that due to
the prednisone not helping, it's a good bet that allergies isn't my
problem. Suddenly I find myself on square one.

My main question is, in everyone's experience, what can cause CONSTANT
symptoms like mine? Could it still be a sinus infection? Or what else?

Thanks for your help!
Steven L. - 10 Aug 2007 22:23 GMT
> I've been given the impression that a person with chronic sinusitis
> has symptoms that come and go. Mine never do. Sometimes they're bad,
> other times they're worse, but always present.

Just like me.  Before I had my surgery, some days I was literally choking, other days I could go to work and run errands, but NEVER did I have a symptom-free day.

Chronic sinusitis varies in severity.  Dr. Robert Ivker classifies patients into three types: Type 3 (the mildest), in which patients don't really consider themselves "sick" and put up with mild annoyance; Type 2 (medium), in which patients have few or no symptoms in between acute flareups but get sick on acute flareups; and then the big one, Type 1, the continuous low-level infection whose symptoms never fully let up.  Those patients consider themselves chronically ill, and they're often depressed and/or worried over their loss of their former health.

It sounds like you are a Type 1.  And I'm sort of Type 1.3 now.

> My main question is, in everyone's experience, what can cause CONSTANT
> symptoms like mine?

Key question: When you irrigate your sinuses, or when you cough up phlegm, what color is your mucus and phlegm?

If it's colored yellow or green or brown, then it's likely a continuous low-level sinus infection, in some tiny pockets deep in your sinuses that the radiologist and ENT missed when they looked at your CT scan.  That too was my experience.  I strongly suggest you take those CT scan films to another ENT or two, for a second opinion (or even a third opinion).  And you STAND RIGHT THERE while he goes over them with you.  You don't want an ENT who just goes by the radiologist's report.

And in that case, surgery is not only the best treatment, but the only remaining diagnostic tool.  I had two other ENTs swear, based on my negative CT scan, that I did not have chronic sinusitis.  I finally found an ENT willing to operate on me despite the negative CT scan.  And he found blockages in my ethmoids that he himself could not see on the CT scan.  My ENT has learned the hard way that these indirect scans are NOT 100% reliable.

My experience is unusual but not unheard of.  There is still no substitute for direct observation.  But to directly view the sinuses, the physician has to push the endoscope all the way through the ducts into the sinus cavities.  And for that you need to be anesthetized, something they only do as part of a surgical procedure.

If on the other hand, when you are off your medications, you have NEVER seen discolored mucus even on your sickest days, then it may not be a sinus infection after all.  It could simply be non-allergic rhinitis caused by irritants in the environment.  Air pollution then becomes the prime suspect.  As I've been recommending to others, check your air pollution levels at www.scorecard.org and find out about indoor air pollution in your home (sick building syndrome).

If your neighborhood air is high in sulfur dioxide content, it's no wonder your mucosa are going crazy.  In that case, your only option may be relocation to a relatively unpolluted area.

And throw away your wall-to-wall carpets.  Don't clean them, junk them.  Linoleum is inherently cleaner.  Wood floors look great just by themselves too.

Good luck.

Signature

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

truehawk - 11 Aug 2007 01:38 GMT
> dyger...@gmail.com writes:
> > I've been given the impression that a person with chronic sinusitis
[quoted text clipped - 30 lines]
> Email:  sdlit...@earthlinkNOSPAM.net
> Remove the NOSPAM before replying to me.

Go to pubmed.gov and run a search on biofilm sinusitis.

Predisone only makes it worse. Does not reliably show up on cultures
or CT scan.
One fairly reliable palative treatment is macrolide antibotics, either
biaxin or azrithromycian.
These treatments work only gradually and can cause dizziness at first.
You can also get rid of a lot of the goo with prilosec and mouthwash,
dilute H2O2 by holding them in your mouth laying with your head
supported so that you are slightly head down and the mouthwash will
trickle into the space where the esophagas joins the sinuses.  This is
often the area that is actually blocked and keeps everything else from
draining.

Hope you get better.

Elizabeth
ellen - 12 Aug 2007 01:42 GMT
> dyger...@gmail.com writes:
> > I've been given the impression that a person with chronic sinusitis
[quoted text clipped - 30 lines]
> Email:  sdlit...@earthlinkNOSPAM.net
> Remove the NOSPAM before replying to me.

wait a second steven, did i read that right?  you had discolored mucus
& they said that you didn't have chronic sinusitis because the ct scan
was clear?

ellen
dygerati@gmail.com - 12 Aug 2007 04:25 GMT
Thanks for your responses, much appreciated.

> Key question: When you irrigate your sinuses, or when you cough up phlegm, what color is your mucus and phlegm?

I'll say that MOST of the time it's been clear, but I do get
occasional thick yellow gobs. Though I'm not sure I've seen much of
that at all since my last round of anti-biotics (the only effect it
had).

Unfortunately it seems that I've exhausted just about all of the ENT's
I have in my area. Pretty sad, as I've only gotten one real opinion.
The first one that I saw refused to meet with me post CT scan on
account of the fact that it was negative. The second one that I saw
also denied the possibility of a sinus infection, but wants to do
corrective surgery for my "mild" deviated septum. I may have to look
out of my area, or perhaps just insist that the 2nd ENT poke something
in my sinus's while he's in there.

>These treatments work only gradually and can cause dizziness at first.
>You can also get rid of a lot of the goo with prilosec and mouthwash,
>dilute H2O2 by holding them in your mouth laying with your head
>supported so that you are slightly head down and the mouthwash will
>trickle into the space where the esophagas joins the sinuses.

Prilosec? For heartburn relief? Interesting... I've also heard of the
biofilm sinusitis, though I fear that no one qualified to do anything
about it in my area has.

I'll say that I think I'm leaning towards the low-level infection,
partially due to the prednisone making it worse. It seems that it
actually dampens the immune system leaving you open for a spreading
infection. Hell, maybe someone can actually find something now.

Thanks again guys.

'Joel
Steven L. - 13 Aug 2007 15:47 GMT
> I'll say that MOST of the time it's been clear, but I do get
> occasional thick yellow gobs. Though I'm not sure I've seen much of
> that at all since my last round of anti-biotics (the only effect it
> had).

Sounds like a low-level infection.

Let me explain how insidious this got with me: My CT scan did show a polyp, but it wasn't large and it wasn't blocking a sinus so it didn't appear to be worth surgery.  But when my ENT did the surgery, he found that a pus-filled mucocele had gotten itself wrapped *inside* the polyp and that mucocele had been giving me a lot of trouble (it kept oozing pus).  The CT scan couldn't distinguish between the two since it all looks like flesh on the CT scan.  My surgeon drained the mucocele and removed it.

The moral is: Nothing substitutes for direct observation by a trained ENT.

> Unfortunately it seems that I've exhausted just about all of the ENT's
> I have in my area. Pretty sad, as I've only gotten one real opinion.

Where do you live?  Maybe we can recommend someone good who isn't all that far from you.

Signature

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

truehawk - 13 Aug 2007 19:05 GMT
> dyger...@gmail.com writes:
> > I'll say that MOST of the time it's been clear, but I do get
[quoted text clipped - 5 lines]
>
> Let me explain how insidious this got with me: My CT scan did show a polyp, but it wasn't large and it wasn't blocking a sinus so it didn't appear to be worth surgery.  But when my ENT did the surgery, he found that a pus-filled mucocele had gotten itself wrapped *inside* the polyp and that mucocele had been giving me a lot of trouble (it kept oozing pus).  The CT scan couldn't distinguish between the two since it all looks like flesh on the CT scan.  My surgeon drained the mucocele and removed it.

Take a look at this.

There is at least one doctor in New York that is biofilm savvy.

http://www.stopsnoringnewyork.com/nyc_snoring_doctor/sinusitis_treatments_newyork.htm

And take a look at this

http://biology.fullerton.edu/biol302/302labf99/biofilm.html

Look polyp shaped don't they.

I have dissected my own polyps (the only ones that I can legally
process due to human tissue act restrictions) and seen photographs of
those removed from patients at the Mayo clinic.  They look identical.
They were NOT fleshy like moles or warts. Some people may have those,
but these polyps were bacterial communities.
Mine polyps had only a scattering of human cells. They were organized
layers of cells with channels that had cellulose in their cell walls
(fungus), alginate (goo produced by bacteria) bacteria, and ocassional
little black forked stick things that I finally found were
atinomycetes, held together by filaments. In other words, I think most
polyps ARE a biofilm, unless  you are preticularly prone to grow
moles.
dygerati@gmail.com - 27 Aug 2007 05:46 GMT
Couple quick questions...could the "mild" deviated septum that I'm
reported to have, and that one ENT wants to operate on, have anything
to do with this low level infection? Any chance of a benefit from
correcting this structural problem?

Also, the balloon treatment that I'm sure some of you have heard
about...can you see that doing any good? I'm trying to take the least
invasive course possible, at least to start. I realize it's difficult
to make recommendations with so little info, but any feedback's
appreciated!

Thanks!
Murray Grossan - 27 Aug 2007 18:11 GMT
On 8/26/07 9:46 PM, in article
1188189983.368008.58460@x40g2000prg.googlegroups.com, "dygerati@gmail.com"

> Couple quick questions...could the "mild" deviated septum that I'm
> reported to have, and that one ENT wants to operate on, have anything
[quoted text clipped - 8 lines]
>
> Thanks!

Nearly everyone has some sort of deviated nasal septum. Whether it causes
symptoms or not depends on many factors and can only be evaluated by history
and physical evaluation. Just because you have a deviated septum does not
immediately mean you will benefit by surgery. Sometimes the doctor can
estimate a 50 or 80% probability of benefit.
dygerati@gmail.com - 13 Aug 2007 23:15 GMT
> Let me explain how insidious this got with me: My CT scan did show a polyp, but it wasn't large and it wasn't blocking a sinus so it didn't appear to be worth surgery.  But when my ENT did the surgery, he found that a pus-filled >mucocele had gotten itself wrapped *inside* the polyp and that mucocele had been giving me a lot of trouble (it kept oozing pus).  The CT scan couldn't distinguish between the two since it all looks like flesh on the CT scan.  My surgeon >drained the mucocele and removed it.

Yikes, sounds most unpleasant...anything involving the words "pus-
filled" can't be good. I'm very glad you've improved somewhat since
then.

> Where do you live?  Maybe we can recommend someone good who isn't all that far from you.

Medford, Oregon. I'd certainly be willing to travel a bit in order to
find a good one. Thanks!
Murray Grossan - 12 Aug 2007 05:13 GMT
On 8/10/07 1:12 PM, in article
1186776744.524839.301830@x40g2000prg.googlegroups.com, "dygerati@gmail.com"

> I've posted a few times before regarding my condition, and received a
> lot of support from you guys(thanks!). Summary of just what my
[quoted text clipped - 39 lines]
>
> Thanks for your help!

I believe it would be useful to have your nasal cilia tested . That might
point at was to therapy. Need to rule out other sources of infection
including teeth.
Consider a possible food allergy or GERD.
judy.n - 12 Aug 2007 14:16 GMT
Does your office test nasal cilia? No one else appears to do that
outside research studies.
Judy

> On 8/10/07 1:12 PM, in article
> 1186776744.524839.301...@x40g2000prg.googlegroups.com, "dyger...@gmail.com"
[quoted text clipped - 48 lines]
> including teeth.
> Consider a possible food allergy or GERD.
judy - 13 Aug 2007 13:55 GMT
On Aug 10, 4:12 pm, dyger...@gmail.com wrote:
> I've posted a few times before regarding my condition, and received a
> lot of support from you guys(thanks!). Summary of just what my
[quoted text clipped - 39 lines]
>
> Thanks for your help!

sorry to say, my symptoms of chronic sinusitus (even after multiple
surgeries) are always there to one degree or another and have to be
managed with medication and irrigation to the best of my ability.  I
sincerely hope that you have much better luck!!  Judyj
Duke - 20 Aug 2007 15:01 GMT
On Aug 10, 4:12 pm, dyger...@gmail.com wrote:
> I've posted a few times before regarding my condition, and received a
> lot of support from you guys(thanks!). Summary of just what my
[quoted text clipped - 39 lines]
>
> Thanks for your help!

Possibly a need to remove all the allergens you showed positive for.
Shots take years to work, and they do not always work. If you were
taking a sedating antihistime, there is some of your fog as well.
Also, they dry sinuses and promote infection. Get a doc to test your
immune system. Tell them to include the subclasses. Others on the site
have noted noted long courses of low dose macrolides work. They do for
me as well.
Susan - 20 Aug 2007 16:16 GMT
> Possibly a need to remove all the allergens you showed positive for.
> Shots take years to work, and they do not always work.

Shots take weeks, not years to work, if properly administered!  Shots
that take longer are too weak to be of any benefit.

 Susan
Duke - 20 Aug 2007 16:26 GMT
> x-no-archive: yes
>
[quoted text clipped - 5 lines]
>
>   Susan

If too strong, they cause the swelling that creates an environment for
infection. Shots are worth it. And in the grand sense I agree with
you .But in terms of them being the bottom line curation for chronic
sinusitis, the clinical and anecdotal evidence is just not there
Susan.
Susan - 20 Aug 2007 16:48 GMT
> If too strong, they cause the swelling that creates an environment for
> infection.

Who said "too strong?"  I said strong enough to desensitize.  Too weak
resensitized me to all my allergies and caused me the increasingly
severe sinusitis that brought me here.

Every shot, for the years you're recommending, carries a risk of infection.

 Shots are worth it. And in the grand sense I agree with
> you .But in terms of them being the bottom line curation for chronic
> sinusitis, the clinical and anecdotal evidence is just not there
> Susan.

No one here called them a cure, you keep creating straw man arguments.
They are very helpful, if aggressive enough, in creating conditions less
likely to contribute to chronic sinusitis; inflammation, swelling of
tissues and thick, non drainng mucus.

Susan
Duke - 20 Aug 2007 21:55 GMT
> x-no-archive: yes
>
[quoted text clipped - 19 lines]
>
> Susan

Whatever works for you Susan, I say go for it.

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