Re: Successful desense, SOS return, my timeline

[Guest guest]

Joe,

Can you give me more detail about the Amphotericin B/Betmethasone

solution? What are the concentrations of each as well as the total

volume inhaled during each treatment?

Thanks,

Carl

On 6/1/2011 8:47 AM, B ph wrote:

I wrote about the

logistics of going to Scripps in San Diego awhile ago.

I just wanted to follow up with some idea of my

timeline on desense and the return of sense of smell

(SOS). My polyps were removed around March 1 of

this year followed three weeks later by a Scripps

desense. For those who are considering this, I would

remind you that you cannot just walk into Scripps -

you must make an appointment and ideally three to

about seven weeks after surgery. My timing was

perfect so I got the desense right at three weeks

after. I was rather disappointed going home with no

SOS but at 1300 mg of ASA. The ASA bothered my

stomach for about three weeks but I did find some

relief with DGL - a pill form of licorice.

My "home" ENT doctor,

who is nice enough but not big on desense, did order

for me a misting machine from Sinus Dynamics and prescribed a three week, twice a day dosage

(via mail order pharmacy) of Amphotericin B

(fungacide) and Betamethasone (steorid), applied via

inhaled mist. He did have me continue ASA and my

Advair/Singulair/Allegra, but discontinue Nasonex.

This inhaled treatment occurred in May, about five

weeks after desense. At the start of treatment I had

no SOS and was producing plenty of gunk. I also used

Neilmed to help clear things out. About one week

ago, right at the end of the inhaled mist treatment,

my SOS came back and nearly to normal. No more nasal

discharges either, generally dry nose and I have

started up Nasonex again. My stomach has also calmed

down considerably with no ill effects of twice daily

650mg ASA. SOS is quite good. So the elapsed

time from surgery to SOS for me was March 1 to June 1.

[Guest guest]

These are provided as prepackaged vials. The inhaling is twice daily. These vials are placed into the liquid tray of the atomizer and inhaled as a mist. I believe the term is 'nebulizer'. Amphotericin B mg / 2.5 ml vial. Betamethoasone 0.5 mg/ 2.5 ml vial. Dosage total treatment was 21 days / 42 vials each in my case.From: Carl Ondry <ondry@...>To:

samters Sent: Thu, June 2, 2011 4:43:18 PMSubject: Re: Successful desense, SOS return, my timeline

Joe,

Can you give me more detail about the Amphotericin B/Betmethasone

solution? What are the concentrations of each as well as the total

volume inhaled during each treatment?

Thanks,

Carl

On 6/1/2011 8:47 AM, B ph wrote:

I wrote about the

logistics of going to Scripps in San Diego awhile ago.

I just wanted to follow up with some idea of my

timeline on desense and the return of sense of smell

(SOS). My polyps were removed around March 1 of

this year followed three weeks later by a Scripps

desense. For those who are considering this, I would

remind you that you cannot just walk into Scripps -

you must make an appointment and ideally three to

about seven weeks after surgery. My timing was

perfect so I got the desense right at three weeks

after. I was rather disappointed going home with no

SOS but at 1300 mg of ASA. The ASA bothered my

stomach for about three weeks but I did find some

relief with DGL - a pill form of licorice.

My "home" ENT doctor,

who is nice enough but not big on desense, did order

for me a misting machine from Sinus Dynamics and prescribed a three week, twice a day dosage

(via mail order pharmacy) of Amphotericin B

(fungacide) and Betamethasone (steorid), applied via

inhaled mist. He did have me continue ASA and my

Advair/Singulair/Allegra, but discontinue Nasonex.

This inhaled treatment occurred in May, about five

weeks after desense. At the start of treatment I had

no SOS and was producing plenty of gunk. I also used

Neilmed to help clear things out. About one week

ago, right at the end of the inhaled mist treatment,

my SOS came back and nearly to normal. No more nasal

discharges either, generally dry nose and I have

started up Nasonex again. My stomach has also calmed

down considerably with no ill effects of twice daily

650mg ASA. SOS is quite good. So the elapsed

time from surgery to SOS for me was March 1 to June 1.