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Medical Forum / Diseases and Disorders / Sinusitis / June 2005

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Chronic AFS

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Peggy Rooney - 24 May 2005 16:50 GMT
Just wondering if anyone else has been diagnosed with this. Perhaps we can
discuss how our ENT's are trying to minimize the symptoms
Steven L. - 24 May 2005 22:02 GMT
> Just wondering if anyone else has been diagnosed with this. Perhaps we can
> discuss how our ENT's are trying to minimize the symptoms

AFAIK, the only treatments for Allergic Fungal Sinusitis are topical
antifungals like amphotericin B irrigation and Sporonox irrigation.

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Steven D. Litvintchouk
Email:  sdlitvin@earthlinkNOSPAM.net

Remove the NOSPAM before replying to me.

kathywb2001@yahoo.com - 25 May 2005 03:01 GMT
 I totally agree with the statement about many ENTS minimizing the
symptoms of sinusitis, period, or even admiting it is there without
definite radiological evidence, which most of the time is "limited CT
scans."  I even went to National Jewish Medical Center (ranked the # 1
respiratory hospital in the world) and had a CT scan that showed "mild"
chronic ethomoid sinusitis with possible osteomyelitis and was just
told to use Flonase twice a day.   Nobody even mentioned the
possibiltiy of bone infection.  I only found out when asking for
records.  I've been to a few ENTs in my hometown and told I didn't have
sinusitis because they didn't see anything at the time of the exam.
Then I could go home and wash tons of junk out of my head, but because
they didn't see it at the time, it wasn't there.

  After 6 months of total misery and pain behind my nose so bad I had
to get a morphine shot in the ER to stop the pain for a while, then use
Lortabs,  I was finally diagnosed with allergic fungal sinusitis and
osteomyelitis by an infectious doctor who treats difficult to treat
sinusitis.  He subcribes to the Mayo theory of fungi being the
underlying problem in many cases.   I'm not sure if he feels it is in
all cases.  His theory says that it is due to an abnormal immune
response to the molds which is probably genetic.  This sets up the
"climate" for bacterial infections.  Molds are sometimes very difficult
to culture from the sinuses;  I've had several cultures done, and it
has only shown up when sent to a specific lab that only cultures mold.)
   I am on IV Vfend (voriconazole) and am slowly making progress. My
situation is a little bizarre, and hopefully noone will have to take
these drastic measures, but it just shows how so many doctors don't
listen to their patients.
   I might add that other doctors think that AFS should be treated
with steroids, but it only made my situation worse.  But then I have an
actual fungal infection going on too, which I think I got from not
being properly diagnosed and treated to begin with.

Regards,
Kathy
loxaluck - 25 May 2005 15:10 GMT
Hello:

can someone please tell me exactly what i need to tell the doctor in order
to have myself diagnosed properly in regards to AFS?  when i mentioned this
to the last ENT that i saw i was told that he would have seen evidence of
this on the CAT scan and that this was not something that i wanted to
waste time with.  a previous ENT had told me that this "was all just
theoretical".  i have been to several ENTs and several immunologists and
none have ever taken a culture of the slop that is in my sinuses.  should
they?

my main complaint is persistent relentless sinus drip (if it can be called
that, its more like thick cement).  i am always aware of the activity that
is going on in my sinuses.  i irrigate from 2 to 5 times a day.  there is
always color to my mucous.  my general practioner will prescribe
anti-biotics at the drop of a hat and always says i have a sinus infection
however, although maybe they have made me better (more tolerable) i
sometimes get better (more tolerable) without them.  i have had several
surgeries, spent a year on alergy shots, and went through allegra,
claritan, flonase and others.  right now i take zyrtek at night and,
although i dont think it is doing anything to help my condition it does
seem to knowck me out so i can sleep.        
kathywb2001@yahoo.com - 26 May 2005 03:40 GMT
I think you should have a culture done, but from my understanding mold
is sometimes difficult to culture out.  At least if you have a culture
done and it shows something, you would have something to go on.    I
had difficulty getting anyone to take me seriously until I had the
cultures done.  What color is the drainage?  Brown is often times
associated with fungal growth and white can be too.  But then again, if
you have the abnormal immune response to the mold, then you can get the
bacterial infections too.  In my opinion I would try to find an ENT who
will do a culture based on symptoms.  Also, this may sound gross, but
taking a sample of the mucus might not hurt either.

Lots of Luck!!
Kathy
uuperiwinkle - 26 May 2005 16:32 GMT
> Just wondering if anyone else has been diagnosed with this. Perhaps we can
> discuss how our ENT's are trying to minimize the symptoms

The thing that has helped the most is daily fluconazole (Diflucan); I
have been taking it for several years.  You have to get a monthly blood
test to make sure your liver can handle the medication. Irrigation with
Sporanox solution has also helped me (I couldn't tolerate the Ampho-B)
and I also noticed a significant difference when I started taking
Singulair (I also take Allegra but I don't think it does anything).  I
also get allergy shots; not sure if it helps with the AFS but it has
helped with other allergies.

I never did get a positive mold culture; diagnosis was made by
symptoms, strong allergy to molds, and positive response to
fluconazole.  I also never got any help at all from ENT's (three of
them); one ENT, a specialist at a famous medical center, told me he
thought I needed a vacation! I responded that I had unfortunately had
to cancel my long-planned vacation because I was too sick to go.

I had to find an allergist who specialized in chronic sinusitis before
I got an accurate diagnosis.   The first allergist I saw told me to
just keep doing what I was doing (allegra and nasal steroids, at that
time)

Good luck; hopefully medical research will come up with more
satisfactory treatments before we're too old to benefit!
kathywb2001@yahoo.com - 28 May 2005 01:41 GMT
Do you not have to take antibiotics at all now?  How long did it take
for the treatment you are using now to work?
uuperiwinkle - 02 Jun 2005 04:43 GMT
I am off antibiotics now, but improvement has been very slow.  Whenever
I get a flare-up of acute infection, usually secondary to a cold, I
struggle through multiple courses of antibiotics that help until I go
off them.  It usually takes six to nine months before I go back to my
usual mildly uncomfortable but tolerable state.
Peggy Rooney - 29 May 2005 17:03 GMT
I am taking Sporonax orally and am irrigating with Ampho B solution. I also
am spraying with Nasonex and I do take Singulair. I am also inhaling
Pulmicort once in the evening.  How long have you been dealing with this?
Have you had polyps also?

>> Just wondering if anyone else has been diagnosed with this. Perhaps we
>> can
[quoted text clipped - 23 lines]
> Good luck; hopefully medical research will come up with more
> satisfactory treatments before we're too old to benefit!
Peggy Rooney - 29 May 2005 17:05 GMT
Forgot to tell you I was on prednisone for about 9 months also. It helped
tremendously but the side effects are terrible.

>> Just wondering if anyone else has been diagnosed with this. Perhaps we
>> can
[quoted text clipped - 23 lines]
> Good luck; hopefully medical research will come up with more
> satisfactory treatments before we're too old to benefit!
kathywb2001@yahoo.com - 29 May 2005 17:21 GMT
I have been dealing with this for years, but I've never had polyps.  I
was on low dose prednisone for about the same amount of time as you
were.  When I came off my sinusitis got much worse.  But before that I
was  having to use inhalers both steroid and albuterol because I had so
much junk in my lungs.  I don't have the lung problems now.  I've been
on the VFend almost 5 months.   I would rather be on oral meds but I'm
on Nexium and they don't absorb well.  How long have you been on the
sporanox and how long will you have to stay on it?  I don't want to
take this stuff forever.  I'm hoping to switch to irrigation solutions
soon.  What is your doctor's opinion?
kathywb2001@yahoo.com - 29 May 2005 17:27 GMT
I meant to say I have been on the VFend for almost 5 weeks, not months.
kathywb2001@yahoo.com - 29 May 2005 18:01 GMT
I meant to say I have been on the VFend for almost 5 weeks, not months.
Peggy Rooney - 29 May 2005 23:50 GMT
Kathy , were are you located?  I am on Vancouver Island in Canada.
>I meant to say I have been on the VFend for almost 5 weeks, not months.
Peggy Rooney - 29 May 2005 23:45 GMT
My specialist says it is incurable. He will adjust my dosage every six weeks
after examining my nasal passages and sinus's and checking my blood work for
abnormalties. I have  been on sporonax for approx 6 months now.
>I have been dealing with this for years, but I've never had polyps.  I
> was on low dose prednisone for about the same amount of time as you
[quoted text clipped - 6 lines]
> take this stuff forever.  I'm hoping to switch to irrigation solutions
> soon.  What is your doctor's opinion?
kathywb2001@yahoo.com - 30 May 2005 02:48 GMT
I live in East Tennessee.  How were you diagnosed?  Did you have an
abnormal CT scan?  How long did it take to see improvement?  What
dosage are you on?

I'm still having some brown drainage along with globs of whitish junk.
I'm not sure if this is all from the blastomycosis or the AFS or a
little of both .  The ID doctor I am now seeing is treating me for AFS,
but I don't think I was ever adequately treated for the blastomycosis
(which is also caused my a mold, but is an actual infection).  I'm
tired of running from doctor to doctor.  This guy seems to know what he
is doing so I guess I'll have to be more patient.  It seems like I'm
making quite a bit of improvement, but then I have setbacks and feel
like I'm starting all over again.  Do you notice more symptoms with
weather changes?
Peggy Rooney - 30 May 2005 04:07 GMT
My diagnosis came after I had Computer Assisted Sinus Surgery to remove
polyps from my sinus' and nasal passages.
Unlike you, my discharge is green in colour.
I irrigate twice a day with a mixture of 5500 Ampho B and 100mg of sterile
water. This is mixed is a bottle and I use 600 ml for each irrigation. 300
in each nostril.
Sporonax is 100mg / one capsule 2 times a day.
I spray my nose twice a day. 2 times in each nostril with Nasonex. My
initial dosage was more and I was doing well, so my specialist reduced the
dosage. I think I will probably be returning to the larger dosage. My
specialist has a web site perhaps you may be interested.  It is www.
drjaver.com     He is very knowledgeable and a skilled surgeon.   Hopes this
helps.
Peg
>I live in East Tennessee.  How were you diagnosed?  Did you have an
> abnormal CT scan?  How long did it take to see improvement?  What
[quoted text clipped - 10 lines]
> like I'm starting all over again.  Do you notice more symptoms with
> weather changes?
Peggy Rooney - 30 May 2005 04:20 GMT
Sorry Karen- forgot to tell you that weather has no effect to this
condition.

> My diagnosis came after I had Computer Assisted Sinus Surgery to remove
> polyps from my sinus' and nasal passages.
[quoted text clipped - 24 lines]
>> like I'm starting all over again.  Do you notice more symptoms with
>> weather changes?
kathywb2001@yahoo.com - 30 May 2005 11:13 GMT
Thanks for the information.  I'm seeing my ID doctor again  tomorrow
Steven L. - 01 Jun 2005 17:12 GMT
> Thanks for the information.  I'm seeing my ID doctor again  tomorrow

How did your ID doctor diagnose you with these infections?  Only an ENT
is equipped to take a culture off your sinuses, so did your ENT do the
culture and then refer you to an ID doctor?

Signature

Steven D. Litvintchouk
Email:  sdlitvin@earthlinkNOSPAM.net

Remove the NOSPAM before replying to me.

kathywb2001@yahoo.com - 01 Jun 2005 18:28 GMT
Yes, an ENT did the cultures, but I had to find  the ID doctor myself,
because he just tried nasal sprays that didn't work.  I took the
results to the ID doctor.
kathywb2001@yahoo.com - 02 Jun 2005 00:44 GMT
Peggy,
   I saw the ID doctor on Tuesday and I am having the PICC line taken
out at the end of the week.  He is going to start me on nebulized
steroids.  I'm not sure how well this is going to work. I thought it
would be nebulized antibiotics and/or antifungals, but we will see.

Kathy
Peggy Rooney - 02 Jun 2005 05:00 GMT
So, did he tell you if it was mold or fungus?
I am not sure of some of the acronyms you are using like ID doctor and PICC.
I am seeing an ear nose and throat specialist.

> Peggy,
>    I saw the ID doctor on Tuesday and I am having the PICC line taken
[quoted text clipped - 3 lines]
>
> Kathy
kathywb2001@yahoo.com - 02 Jun 2005 11:41 GMT
The PICC line is the line through which I have been receiving the IV
antibiotics and antifungals.  Mold is a type of fungus, so they are
usually used interchangablely when referring to the sinuses.  I am
seeing an infectious disease doctor.
uuperiwinkle - 02 Jun 2005 05:00 GMT
I have always had allergies, but about three years ago I came down with
a virus that turned into a bacterial sinus infection that wouldn't go
away.  My personal theory is that the repeated courses of antibiotics
turned my mold allergies into full-blown AFS.  It's been a horrible
three years, but I feel like I'm finally turning the corner, although I
don't think I'll ever return to normal.  Hard to explain to people that
haven't been through it- somehow "chronic sinusitis" doesn't sound as
bad as it is!
Peggy Rooney - 02 Jun 2005 17:01 GMT
Hi - i know exactly what you mean, how bad can having something wrong with
your nose get?
I been looking for someone chat with. Support groups are virtually nil, at
least I havent found one.
Even the orphan disease sites dont list afs. Where are you located?
>I have always had allergies, but about three years ago I came down with
> a virus that turned into a bacterial sinus infection that wouldn't go
[quoted text clipped - 4 lines]
> haven't been through it- somehow "chronic sinusitis" doesn't sound as
> bad as it is!
 
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