Re: Fungal sinusitis on top of your Samter's Syndrome?

[Guest guest]

Bob,

Yes, I have had fungal at least 3 times, maybe more undiagnosed. My ENT had me participate in a study, a few years ago now, that used medication thru a nebulizer. The first time it did work, however the second time it did not and we had to use traditional antibiotics along with suction. However after being desen I have not had the fungal problems again.

Dawn

[Guest guest]

In a message dated 7/13/03 10:35:28 AM Mountain Daylight Time, mkdawnt@... writes:

Yes, I have had fungal at least 3 times, maybe more undiagnosed

Dawn,

What kind of symptoms did you have? And do you know which fungus caused the infection?

Thanks,

Bob

[Guest guest]

Dear Bob,

I was diagnosed with fungus in my sinuses at the Mayo clinic. The treatment was amphitericin B and an antibiotic used in a sinus rinse twice a day. I got so sick from the amphitericin B that I had to take a leave at work. My regular specialist got me off of it and put me on celebrex. After a year and a half since my last surgery I'm happy to say I have very few polyps and can smell. Too bad most doctors are afraid to prescribe celebrex to us Samterites in fear of being sued. In the past my polyps were always back in three months. My doctor has had good results with other Samterites using Celebrex. The only thing that really gets my now is high mold count.

Tami

Fungal sinusitis on top of your Samter's Syndrome?

Hi,I am wondering how many people in the group have ever had problems with, or been diagnosed with fungal sinusitis (on top of their Samter's Syndrome). That is: have you ever had a fungal infection of the sinuses after you already had Samter's Syndrome? If so, what kind of symptoms did you have, and how was it treated?Thanks,Bob McGinnis

[Guest guest]

In a message dated 7/14/03 8:28:15 AM Mountain Daylight Time, tami@... writes:

Dear Bob,

I was diagnosed with fungus in my sinuses at the Mayo clinic. The treatment was amphitericin B and an antibiotic used in a sinus rinse twice a day.

Tami,

What kind of Amphotericin B did they use? Did they use Amphotericin B drops in the nose or some kind of spray or was it intravenous (IV) Amphotericin B? Or did you take it some other way? Do you know which fungus it was?

Thanks,

Bob

[Guest guest]

In a message dated 7/13/03 3:05:10 PM Mountain Daylight Time, msbfford@... writes:

Bob,

It isn't unusual for me to get a fungal sinus infection after having a bacterial one that was treated with more than one regimine of antibiotics, and larger doses of steroids.

Do you know which fungus/fungi have caused your sinus infections? How have these infections been treated? Do you know which anti-fungals have been used, e.g. Amphotericin B or itraconazole? How did they make the diagnosis of a fungal infection, was it by culture?

Thanks,

Bob McGinnis

[Guest guest]

In a message dated 7/14/03 5:18:52 PM Mountain Daylight Time, msbfford@... writes:

Bob,

I don't remember much about it, but at least one infection was diagnosed by swap/culture. The other(s) were just a process of elimination. After a few rounds of various antibiotics, if it's still around the dr. tries the ant-fungal drug.

That sounds reasonable, I think that is often how it's done. In fact, I think that I personally may have a fungal infection based on just such a process of elimination.

We've used clotrimazole before, but I don't remember any others. Sorry not to be more help. If you can give me brand

names, I might recognize more

I'd be interested in knowing whether people used pills, intravenous (IV) medication, or topicals (such as nasal spray or drops). Some brand names (the generic name is in parentheses) of anti-fungal medications are: Diflucan (Flucanonazole), Cancidas (Caspofungin), Nizoral(Ketoconazole), Sporanox(Itraconazole), Vfend(Voriconazole), Grisfulvin V (griseofulvin), Fungizone (Amphotericin .

It is possible you used clotrimazole (Mycelex Troches, Mycostatin) for oral candida (yeast). This can happen with oral prednisone or asthma medications. There may also be some form of clotimazole that could have been used for sinus infections that I am not aware of.

Thanks,

Bob

THE INFORMATION PROVIDED HERE REPRESENTS THE PERSONAL OPINIONS OF THE AUTHOR (WHO ALSO SUFFERS FROM THE DISEASE "ASPIRIN TRIAD" OR "SAMTER'S SYNDROME") AND IS NOT PROFESSIONAL MEDICAL ADVICE.

THERE IS NO DOCTOR-PATIENT RELATIONSHIP FORMED BETWEEN THE AUTHOR AND ANYONE READING THIS INFORMATION. AND THE AUTHOR ENCOURAGES INDIVIDUALS TO BECOME ACTIVE AND INFORMED ABOUT RISKS AND BENEFITS, AND TO WORK WITH THEIR OWN DOCTOR(S) ON TREATMENT STRATEGIES FOR THEIR OWN PERSONAL DISEASE.

[Guest guest]

Hi Bob,

After my last surgery in 2001, my doctor had a culture done (from the surgery), but found no evidence of fungus. Also, earlier this year I consented to try two months of Sporanox pills, even though we had not seen any evidence of fungus on various swab cultures. The medication didn't cause me any problems (they did a liver test), but didn't relieve me of any symptoms either. I guess I didn't have a fungus infection afterall.

Boy, that stuff is expensive. With Sporanox you take it for a week, then go three weeks without, then repeat. As I recall, a week's worth was way over $200.

However, I'm glad I tried it so that we could pretty much eliminate the possibility of my having a fungal infection.

Jim

Re: Fungal sinusitis on top of your Samter's Syndrome?

In a message dated 7/14/03 5:18:52 PM Mountain Daylight Time, msbfford@... writes:

Bob,I don't remember much about it, but at least one infection was diagnosed by swap/culture. The other(s) were just a process of elimination. After a few rounds of various antibiotics, if it's still around the dr. tries the ant-fungal drug. That sounds reasonable, I think that is often how it's done. In fact, I think that I personally may have a fungal infection based on just such a process of elimination.We've used clotrimazole before, but I don't remember any others. Sorry not to be more help. If you can give me brand

names, I might recognize moreI'd be interested in knowing whether people used pills, intravenous (IV) medication, or topicals (such as nasal spray or drops). Some brand names (the generic name is in parentheses) of anti-fungal medications are: Diflucan (Flucanonazole), Cancidas (Caspofungin), Nizoral(Ketoconazole), Sporanox(Itraconazole), Vfend(Voriconazole), Grisfulvin V (griseofulvin), Fungizone (Amphotericin . It is possible you used clotrimazole (Mycelex Troches, Mycostatin) for oral candida (yeast). This can happen with oral prednisone or asthma medications. There may also be some form of clotimazole that could have been used for sinus infections that I am not aware of. Thanks,BobTHE INFORMATION PROVIDED HERE REPRESENTS THE PERSONAL OPINIONS OF THE AUTHOR (WHO ALSO SUFFERS FROM THE DISEASE "ASPIRIN TRIAD" OR "SAMTER'S SYNDROME") AND IS NOT PROFESSIONAL MEDICAL ADVICE. THERE IS NO DOCTOR-PATIENT RELATIONSHIP FORMED BETWEEN THE AUTHOR AND ANYONE READING THIS INFORMATION. AND THE AUTHOR ENCOURAGES INDIVIDUALS TO BECOME ACTIVE AND INFORMED ABOUT RISKS AND BENEFITS, AND TO WORK WITH THEIR OWN DOCTOR(S) ON TREATMENT STRATEGIES FOR THEIR OWN PERSONAL DISEASE.

[Guest guest]

In a message dated 7/15/03 11:09:53 AM Mountain Daylight Time, msbfford@... writes:

Yes, I use the Mycelex Troche tabs and liquid, and Diflucan tabs for frequent candida. Good luck in getting yours diagnosed and under control!

Did they diagnose your Candida by culture? Have you found that the Mycelex and/or Diflucan helped? Did the Mycelex and /or Diflucan decrease nasal congestion, mucous and/or nasal discharge or other symptoms?

Thanks,

Bob

[Guest guest]

In a message dated 7/15/03 2:45:24 PM Mountain Daylight Time, tami@... writes:

All I can remember about the amphotericin B is that I had to use a needle to extract it from the small bottle it came in and mix it with saline. I don't remember the amount I used with saline. Then I had to keep it refrigerated.

Did you use Amphotericin B nasal drops Tami? I believe the Mayo Clinic has recently been using Amphotericin B nasal drops for sinusitis.

Thanks,

Bob

[Guest guest]

All I can remember about the amphotericin B is that I had to use a needle to extract it from the small bottle it came in and mix it with saline. I don't remember the amount I used with saline. Then I had to keep it refrigerated. I could probably call Mayo clinic and get my records for the type of fungus. I'll let you know.

Tami

Re: Fungal sinusitis on top of your Samter's Syndrome?

In a message dated 7/14/03 8:28:15 AM Mountain Daylight Time, tami@... writes:

Dear Bob,I was diagnosed with fungus in my sinuses at the Mayo clinic. The treatment was amphitericin B and an antibiotic used in a sinus rinse twice a day. Tami,What kind of Amphotericin B did they use? Did they use Amphotericin B drops in the nose or some kind of spray or was it intravenous (IV) Amphotericin B? Or did you take it some other way? Do you know which fungus it was?Thanks,Bob

[Guest guest]

How is Sporanox? My doctor may put me on it at teh end of this

month. I am finishing 5 weeks of an antibiotics, and prednisone...

she sees what she thinks is fungus in my CAT scans. I will also have

surgery next month. She thinks with surgery and the sporanox I will

have a better chance.... Perhaps go through desensitation too..

Anyone else have any experience with this?

Also (sorry so many questions) what is a bone scan - can it detect

deterioration from infections/fungus?? MRI??

thanks

sue

> Hi Bob,

> After my last surgery in 2001, my doctor had a culture done (from

the surgery), but found no evidence of fungus. Also, earlier this

year I consented to try two months of Sporanox pills, even though we

had not seen any evidence of fungus on various swab cultures. The

medication didn't cause me any problems (they did a liver test), but

didn't relieve me of any symptoms either. I guess I didn't have a

fungus infection afterall.

>

> Boy, that stuff is expensive. With Sporanox you take it for a week,

then go three weeks without, then repeat. As I recall, a week's worth

was way over $200.

> However, I'm glad I tried it so that we could pretty much eliminate

the possibility of my having a fungal infection.

>

> Jim

> Re: Fungal sinusitis on top of your Samter's

Syndrome?

>

>

> In a message dated 7/14/03 5:18:52 PM Mountain Daylight Time,

msbfford@y... writes:

>

>

>

> Bob,

> I don't remember much about it, but at least one infection was

diagnosed by swap/culture. The other(s) were just a process of

elimination. After a few rounds of various antibiotics, if it's still

around the dr. tries the ant-fungal drug.

>

>

>

> That sounds reasonable, I think that is often how it's done. In

fact, I think that I personally may have a fungal infection based on

just such a process of elimination.

>

>

> We've used clotrimazole before, but I don't remember any others.

Sorry not to be more help. If you can give me brand

>

> names, I might recognize more

>

>

> I'd be interested in knowing whether people used pills,

intravenous (IV) medication, or topicals (such as nasal spray or

drops). Some brand names (the generic name is in parentheses) of anti-

fungal medications are: Diflucan (Flucanonazole), Cancidas

(Caspofungin), Nizoral(Ketoconazole), Sporanox(Itraconazole), Vfend

(Voriconazole), Grisfulvin V (griseofulvin), Fungizone (Amphotericin

.

> It is possible you used clotrimazole (Mycelex Troches,

Mycostatin) for oral candida (yeast). This can happen with oral

prednisone or asthma medications. There may also be some form of

clotimazole that could have been used for sinus infections that I am

not aware of.

>

>

> Thanks,

>

> Bob

>

> THE INFORMATION PROVIDED HERE REPRESENTS THE PERSONAL OPINIONS OF

THE AUTHOR (WHO ALSO SUFFERS FROM THE DISEASE " ASPIRIN TRIAD "

OR " SAMTER'S SYNDROME " ) AND IS NOT PROFESSIONAL MEDICAL ADVICE.

>

> THERE IS NO DOCTOR-PATIENT RELATIONSHIP FORMED BETWEEN THE AUTHOR

AND ANYONE READING THIS INFORMATION. AND THE AUTHOR ENCOURAGES

INDIVIDUALS TO BECOME ACTIVE AND INFORMED ABOUT RISKS AND BENEFITS,

AND TO WORK WITH THEIR OWN DOCTOR(S) ON TREATMENT STRATEGIES FOR

THEIR OWN PERSONAL DISEASE.

>

>

[Guest guest]

In a message dated 7/16/03 7:35:32 AM Mountain Daylight Time, tami@... writes:

Bob

No I didn't use nasal drops. At the time it was called the Sherris Kern solution. I used 10 cc's of the mixed solution on each side

Thanks Tami.

Bob

[Guest guest]

Bob

No I didn't use nasal drops. At the time it was called the Sherris Kern solution. I used 10 cc's of the mixed solution on each side. I had to tip my head upside down and sideways in the bathtub and had to squirt the solution in and hold it in my sinuses for a minute (I think). Not a pleasant experience. I felt like I was drowning. I have a call into the Mayo clinic for exact info. Also checking on type of fungus.

Tami

Re: Fungal sinusitis on top of your Samter's Syndrome?

In a message dated 7/15/03 2:45:24 PM Mountain Daylight Time, tami@... writes:

All I can remember about the amphotericin B is that I had to use a needle to extract it from the small bottle it came in and mix it with saline. I don't remember the amount I used with saline. Then I had to keep it refrigerated. Did you use Amphotericin B nasal drops Tami? I believe the Mayo Clinic has recently been using Amphotericin B nasal drops for sinusitis.Thanks,Bob

[Guest guest]

In a message dated 7/15/03 5:19:26 PM Mountain Daylight Time, msbfford@... writes:

I don't remember ever having a culture for Candida, but I've done this so long, I might have forgotten an early test. The Mycelex and Diflucan helped the yeast infections almost immediately, and keep it at bay for awhile. After an initial treatment of the MT (a few days) I keep them handy and just pop them like TUMS when my mouth starts showing symptoms. The nasal congestion change isn't so obvious or immediate... like taste and smell functions, I tend to just notice when it's starting, then when it's gone. Guess I can pay closer attention for awhile and report what I find! It does usually clear up the sinus infection along the way..... along with all the other things!! Which actually is the "curative" agent may be harder to pinpoint. And of course, it always comes back again (and again, and again,....). I do have some good news to report.... had an endoscopic exam a few weeks ago, and am still polyp free after surgery (including "windows") done 7 years ago! Something is working.

Thanks,

Bob