Re: Re: Report on compounded nasal spray - gentamycin, amphotericin B and steroid

[Guest guest]

Hi Barb, I first heard of this spray via my former ENT and several patients (including lyme patients) who had a lot of success with it. As I understand it, she got the original formulation from Stanford docs. Unfortunately, she refused to prescribe it for me because she said that it wouldn't work against my organisms and later that my sinuses appeared to be "clear" Pffft. So based on the continuos glowing reports, I had a friend give me a copy of the prescription and I gave it to my GP who wrote the script. He didn't really quite get it and it can only be done through a compounding pharmacy so there was a little confusion about the mixture, but I used the same pharmacist who has filled it for my ENT in the past so it got worked out. It's a bit difficult to read the script, but here's what I can make out.

Amphotericin-B .0170 Dexamethasone .170 (can be less) Gentamycin 80mg in NL Saline 60ml 2 sprays each nostril twice daily for 6 weeks (my doc gave me 3 refills, which I plan to use) So far my insurance has refused to pay, but it was $45 for 6 weeks. Something I can definitely handle for this much success. So far this is making a huge difference for me. Energy's up, headache's & head pressure way down, overall body pain levels down. Not waking up feeling like there's goo stuck somewhere between my ears that I can't quite locate or discharge. It's definitely one of the better things I've

tried so far, and I've heard this numerous times from other patients. It's just taken a long time for me to get the whole thing together and to get the script. Bleu's always been a big Amphotericin B nasal spray proponent so that alone might help a lot of people with chronic infections. But I think there's really something to having the mixture of anti-fungal and antibiotic. I also have to say that I haven't yet been able to stop taking penicillin VK or the Cipro but I'm seeing the possibility of cutting back there after a while since I forgot one evening dose and woke up headache free. Strangely, my cipro/tendon issues seem to be resolving event thought I've been on Cipro for several months now. They're feeling much better. If your friend is interested in the forumula but needs more specifics, he could always have his doc contact the ENT (or the compounding

pharmacist) for specifics. I'd be happy to provide that info as I'd be really happy if it helps others as well. penny p.s. I think there are some studies out there that talk about this combination of drugs. Your friend might want to do a search. Barb Peck <egroups1bp@...> wrote: Penny- That's great..What Doc prescribed that for you? And what exactly are the amounts in it- etc.. I have a friend with similar condition as you ( a Bone-headed guy - not

taking care of it at this time- but says he will soon...).Any additional info you can give me- I'll pass it along to him.Barb>> It's been about a week since I started the Compounding Pharmacy's nasal spray of Gentamycin, Amphotericin B with a minute amount of steroid in a saline base. And it really IS helping. Most surprising to me is I've noticed a big change in my inflammation levels and tendon issues. The best news is I'm waking up headache free almost every day since I started the spray. Before I started the spray I was feeling some infection symptoms, stiff neck, having migraines again, etc. After the spray, all of these symptoms are way down. It sure would be nice if this spray could actually clear away some of the

mess in my head.> > I still have to take the Penicillin VK and Cipro & antifungal (currently Ketokonazole) or symptoms return. I hope this spray (or something) can help beat this infection back to the point that I won't have to keep adding new antibiotics and anti-fungals just to maintain the same level of suppression. > > penny>

[Guest guest]

Penny,

Someone I know has had very bad sinus probs for years. He keeps having to be on abx several times a year, recently he had a strep throat followed by bronchitis and flare of sinusitis of course. He is about ripe this time to embark on some form of serious treatment. He also has a high titer for Chl pn).

I know you tried to copy the script to give us the info re drugs and dosages. Would you by any chance be able to answer a couple of queries (because it looks like we're going to have to make the spray on the kitchen table)

Amphotericin-B .0170 (ml?; mg? ) we have powder but not sure how much to use, we would dilute it in some saline

Dexamethasone .170 (can be less) same thing: what the unit to measure it with and is it liquid that has been pre-diluted. any idea whether Dexamethasone can be swapped for another form of corticosteroids (prednisone etc)

Gentamycin 80mg (I huess that's the powder that gets disoved into the saline)

in NL Saline 60ml

2 sprays each nostril twice daily for 6 weeks anything special about the sprays -nebuliser?)

(my doc gave me 3 refills, which I plan to use)

Penny, it would be great if we could have more info totry it out BEFORE he goes to infectious doctor and to ENT. They are not exactly the sharpest from what I understand. Did you say there has been stuff published re this approach?

Thanks

Nelly (tired, it's nearly 1 am here, I'm falling asleep)

Hi Barb,

I first heard of this spray via my former ENT and several patients (including lyme patients) who had a lot of success with it. As I understand it, she got the original formulation from Stanford docs. Unfortunately, she refused to prescribe it for me because she said that it wouldn't work against my organisms and later that my sinuses appeared to be "clear" Pffft. So based on the continuos glowing reports, I had a friend give me a copy of the prescription and I gave it to my GP who wrote the script. He didn't really quite get it and it can only be done through a compounding pharmacy so there was a little confusion about the mixture, but I used the same pharmacist who has filled it for my ENT in the past so it got worked out.

It's a bit difficult to read the script, but here's what I can make out.

Amphotericin-B .0170

Dexamethasone .170 (can be less)

Gentamycin 80mg

in NL Saline 60ml

2 sprays each nostril twice daily for 6 weeks

(my doc gave me 3 refills, which I plan to use)

So far my insurance has refused to pay, but it was $45 for 6 weeks. Something I can definitely handle for this much success.

So far this is making a huge difference for me. Energy's up, headache's & head pressure way down, overall body pain levels down. Not waking up feeling like there's goo stuck somewhere between my ears that I can't quite locate or discharge. It's definitely one of the better things I've tried so far, and I've heard this numerous times from other patients. It's just taken a long time for me to get the whole thing together and to get the script.

Bleu's always been a big Amphotericin B nasal spray proponent so that alone might help a lot of people with chronic infections. But I think there's really something to having the mixture of anti-fungal and antibiotic. I also have to say that I haven't yet been able to stop taking penicillin VK or the Cipro but I'm seeing the possibility of cutting back there after a while since I forgot one evening dose and woke up headache free. Strangely, my cipro/tendon issues seem to be resolving event thought I've been on Cipro for several months now. They're feeling much better.

If your friend is interested in the forumula but needs more specifics, he could always have his doc contact the ENT (or the compounding pharmacist) for specifics. I'd be happy to provide that info as I'd be really happy if it helps others as well.

penny

p.s. I think there are some studies out there that talk about this combination of drugs. Your friend might want to do a search.

Barb Peck <egroups1bp@...> wrote:

Penny- That's great..What Doc prescribed that for you? And what exactly are the amounts in it- etc.. I have a friend with similar condition as you ( a Bone-headed guy - not taking care of it at this time- but says he will soon...).Any additional info you can give me- I'll pass it along to him.Barb>> It's been about a week since I started the Compounding Pharmacy's nasal spray of Gentamycin, Amphotericin B with a minute amount of steroid in a saline base. And it really IS helping. Most surprising to me is I've noticed a big change in my inflammation levels and tendon issues. The best news is I'm waking up headache free almost every day since I started the spray. Before I started the spray I was feeling some infection symptoms, stiff neck, having migraines again, etc. After the spray, all of these symptoms are way down. It sure would be nice if this spray could actually clear away some of the mess in my head.> > I still have to take the Penicillin VK and Cipro & antifungal (currently Ketokonazole) or symptoms return. I hope this spray (or something) can help beat this infection back to the point that I won't have to keep adding new antibiotics and anti-fungals just to maintain the same level of suppression. > > penny>

[Guest guest]

Yeah, unfortunately that's exactly the info I've got on my sheet. No ml/mg etc. I'll see if I can get anymore info from people I know. Otherwise it will be the next time I talk to the pharmacist. And yes, I do believe there's been stuff written up about this spray (or similar combos) but I don't recall where I saw them. I'd just try doing some googling with some of the key words. Maybe also try fungal infection sinus spray, stanford sinus infection spray, things like that. I'll dig around too. good luck! penny Nelly Pointis <janel@...> wrote: Penny, Someone I know has had very bad sinus probs for years. He keeps having to be on abx several times a year, recently he had a strep throat followed by bronchitis and flare of sinusitis of course. He is about ripe this time to embark on some form of serious treatment. He also has a high titer for Chl pn). I know you tried to copy the script to give us the info re drugs and dosages. Would you by any chance be able to answer a couple of queries (because it looks like we're going to have to make the spray on the kitchen table) Amphotericin-B .0170 (ml?; mg? ) we have powder but not sure how much to use, we would dilute it in some saline Dexamethasone .170 (can be less) same thing: what the unit to measure it with and is it liquid that has been pre-diluted. any idea whether Dexamethasone can be swapped for another form of corticosteroids (prednisone etc) Gentamycin 80mg (I huess that's the powder that gets disoved into the saline) in NL Saline 60ml 2 sprays each nostril twice daily for 6 weeks anything special about the sprays -nebuliser?) (my doc gave me 3 refills, which I plan to use) Penny, it would be great if we could have more info totry it out BEFORE he

goes to infectious doctor and to ENT. They are not exactly the sharpest from what I understand. Did you say there has been stuff published re this approach? Thanks Nelly (tired, it's nearly 1 am here, I'm falling asleep) Hi Barb, I first heard of this spray via my former ENT and several patients (including lyme patients) who had a lot of success with it. As I understand it, she got the original formulation from Stanford docs. Unfortunately, she refused to prescribe it for me because she said that it wouldn't work against my organisms and later that my sinuses appeared to be "clear" Pffft.

So based on the continuos glowing reports, I had a friend give me a copy of the prescription and I gave it to my GP who wrote the script. He didn't really quite get it and it can only be done through a compounding pharmacy so there was a little confusion about the mixture, but I used the same pharmacist who has filled it for my ENT in the past so it got worked out. It's a bit difficult to read the script, but here's what I can make out. Amphotericin-B .0170 Dexamethasone .170 (can be less) Gentamycin 80mg in NL Saline 60ml 2 sprays each nostril twice daily for 6 weeks (my doc gave me 3 refills, which I plan to use) So far my

insurance has refused to pay, but it was $45 for 6 weeks. Something I can definitely handle for this much success. So far this is making a huge difference for me. Energy's up, headache's & head pressure way down, overall body pain levels down. Not waking up feeling like there's goo stuck somewhere between my ears that I can't quite locate or discharge. It's definitely one of the better things I've tried so far, and I've heard this numerous times from other patients. It's just taken a long time for me to get the whole thing together and to get the script. Bleu's always been a big Amphotericin B nasal spray proponent so that alone might help a lot of people with chronic infections. But I think there's really something to having the mixture of anti-fungal and antibiotic. I also have to say that I haven't yet been able to stop taking penicillin VK or the Cipro but

I'm seeing the possibility of cutting back there after a while since I forgot one evening dose and woke up headache free. Strangely, my cipro/tendon issues seem to be resolving event thought I've been on Cipro for several months now. They're feeling much better. If your friend is interested in the forumula but needs more specifics, he could always have his doc contact the ENT (or the compounding pharmacist) for specifics. I'd be happy to provide that info as I'd be really happy if it helps others as well. penny p.s. I think there are some studies out there that talk about this combination of drugs. Your friend might want to do a search. Barb Peck <egroups1bp > wrote: Penny- That's

great..What Doc prescribed that for you? And what exactly are the amounts in it- etc.. I have a friend with similar condition as you ( a Bone-headed guy - not taking care of it at this time- but says he will soon...).Any additional info you can give me- I'll pass it along to him.Barb>> It's been about a week since I started the Compounding Pharmacy's nasal spray of Gentamycin, Amphotericin B with a minute amount of steroid in a saline base. And it really IS helping. Most surprising to me is I've noticed a big change in my inflammation levels and tendon issues. The best news is I'm waking up headache free almost every day since I started the spray. Before I started the spray I was feeling some infection symptoms, stiff

neck, having migraines again, etc. After the spray, all of these symptoms are way down. It sure would be nice if this spray could actually clear away some of the mess in my head.> > I still have to take the Penicillin VK and Cipro & antifungal (currently Ketokonazole) or symptoms return. I hope this spray (or something) can help beat this infection back to the point that I won't have to keep adding new antibiotics and anti-fungals just to maintain the same level of suppression. > > penny>

[Guest guest]

First thing I found...but can't access paper. Winston C. Vaughan1 (1) Stanford Sinus Center, R135, 300 Pasteur Drive, 94305 Stanford, CA, USA Abstract Chronic sinusitis with recurrent acute infections continues to be a significant medical problem. Even after aggressive medical and surgical management, some patients continue to have recurrent infections. These infections are often multidrug-resistant. Topical delivery of

medications into body cavities has been practiced for decades. Recently, the use of prescription antibiotic, antifungal, and anti-inflammatory topical medications has increased for sinus patients. This article examines emerging data on nebulized antimicrobials for patients with sinusitis. http://www.springerlink.com/content/q5j0t17g4924663v/ Penny Houle <pennyhoule@...> wrote: Yeah, unfortunately that's

exactly the info I've got on my sheet. No ml/mg etc. I'll see if I can get anymore info from people I know. Otherwise it will be the next time I talk to the pharmacist. And yes, I do believe there's been stuff written up about this spray (or similar combos) but I don't recall where I saw them. I'd just try doing some googling with some of the key words. Maybe also try fungal infection sinus spray, stanford sinus infection spray, things like that. I'll dig around too. good luck! penny Nelly Pointis <janelpiedbauge (DOT) net> wrote: Penny, Someone I know has had very bad sinus

probs for years. He keeps having to be on abx several times a year, recently he had a strep throat followed by bronchitis and flare of sinusitis of course. He is about ripe this time to embark on some form of serious treatment. He also has a high titer for Chl pn). I know you tried to copy the script to give us the info re drugs and dosages. Would you by any chance be able to answer a couple of queries (because it looks like we're going to have to make the spray on the kitchen table) Amphotericin-B .0170 (ml?; mg? ) we have powder but not sure how much to use, we would dilute it in some saline Dexamethasone .170 (can be less) same thing: what the unit to measure it with and is it liquid that has been pre-diluted. any

idea whether Dexamethasone can be swapped for another form of corticosteroids (prednisone etc) Gentamycin 80mg (I huess that's the powder that gets disoved into the saline) in NL Saline 60ml 2 sprays each nostril twice daily for 6 weeks anything special about the sprays -nebuliser?) (my doc gave me 3 refills, which I plan to use) Penny, it would be great if we could have more info totry it out BEFORE he goes to infectious doctor and to ENT. They are not exactly the sharpest from what I understand. Did you say there has been stuff published re this approach? Thanks Nelly (tired, it's nearly 1 am here, I'm falling asleep) Hi Barb, I first heard of this spray via my former ENT and several patients (including lyme patients) who had a lot of success with it. As I understand it, she got the original formulation from Stanford docs. Unfortunately, she refused to prescribe it for me because she said that it wouldn't work against my organisms and later that my sinuses appeared to be "clear" Pffft. So based on the continuos glowing reports, I had a friend give me a copy of the prescription and I gave it to my GP who wrote the script. He didn't really quite get it and it can only be done through a compounding pharmacy so there was a little confusion about the mixture, but I used the same pharmacist who has filled it

for my ENT in the past so it got worked out. It's a bit difficult to read the script, but here's what I can make out. Amphotericin-B .0170 Dexamethasone .170 (can be less) Gentamycin 80mg in NL Saline 60ml 2 sprays each nostril twice daily for 6 weeks (my doc gave me 3 refills, which I plan to use) So far my insurance has refused to pay, but it was $45 for 6 weeks. Something I can definitely handle for this much success. So far this is making a huge difference for me. Energy's up, headache's & head pressure way down, overall body pain levels down. Not waking up feeling like there's goo stuck somewhere between

my ears that I can't quite locate or discharge. It's definitely one of the better things I've tried so far, and I've heard this numerous times from other patients. It's just taken a long time for me to get the whole thing together and to get the script. Bleu's always been a big Amphotericin B nasal spray proponent so that alone might help a lot of people with chronic infections. But I think there's really something to having the mixture of anti-fungal and antibiotic. I also have to say that I haven't yet been able to stop taking penicillin VK or the Cipro but I'm seeing the possibility of cutting back there after a while since I forgot one evening dose and woke up headache free. Strangely, my cipro/tendon issues seem to be resolving event thought I've been on Cipro for several months now. They're feeling much better. If your friend is interested in the

forumula but needs more specifics, he could always have his doc contact the ENT (or the compounding pharmacist) for specifics. I'd be happy to provide that info as I'd be really happy if it helps others as well. penny p.s. I think there are some studies out there that talk about this combination of drugs. Your friend might want to do a search. Barb Peck <egroups1bp > wrote: Penny- That's great..What Doc prescribed that for you? And what exactly are the amounts in it- etc.. I have a friend with similar condition as you ( a Bone-headed guy - not taking care of it at this time- but says he will soon...).Any additional info you can give me- I'll pass it along to him.Barb>> It's been about a week since I started the Compounding Pharmacy's nasal spray of Gentamycin, Amphotericin B with a minute amount of steroid in a saline base. And it really IS helping. Most surprising to me is I've noticed a big change in my inflammation levels and tendon issues. The best news is I'm waking up headache free almost every day since I started the spray. Before I started the spray I was feeling some infection symptoms, stiff neck, having migraines again, etc. After the spray, all of these symptoms are way down. It sure would be nice if this spray could actually clear away some of the mess in my head.> > I still have to take the Penicillin VK and Cipro & antifungal (currently Ketokonazole) or symptoms return. I hope this spray

(or something) can help beat this infection back to the point that I won't have to keep adding new antibiotics and anti-fungals just to maintain the same level of suppression. > > penny>

[Guest guest]

I just saw a partial recipe in one google synopsis... The Laryngoscope - Fulltext: Volume 110(6) June 2000 p 875-880 .. The infection rate of this fungal disease has been quoted to be between 5% and .... Gentamicin has been used as a nasal spray (80 mg in 45 mL saline) or a ...www.laryngoscope.com/pt/re/laryngoscope/fulltext.00005537-200006000-00001.htm - That looks like it would jive with the dosage I'm taking. Not sure what happens when you add in the

other ingredients. Unfortunately, clicking on the link doesn't take you to the quoted material unless you have access to their libray. Here's the abstract in case you can access it. Perhaps a whole formula is in there? State of the Art Review: Current Status of Topical Nasal Antimicrobial Agents. Triological Papers Laryngoscope. 110(6):875-880, June 2000.Goh, Yau Hong FRCS; Goode, L. MD Abstract: The nasal cavity and paranasal sinuses are probably one of the last frontiers in the head and neck region where the use of topical antimicrobial agents is not yet established. Although the anatomy of the nasal cavity and the paranasal sinuses can theoretically be exploited for the administration of antimicrobials in rhinosinusitis, very

few studies have been conducted to test the feasibility of this mode of therapy. We review the anatomical and physiological factors that should be considered in the use of topical nasal antimicrobial agents and the current status of topical nasal antimicrobial usage, and we make recommendations for the administration of topical nasal antimicrobial agents. © The American Laryngological, Rhinological & Otological Society, Inc. penny Penny Houle <pennyhoule@...> wrote: First thing I found...but can't access paper. Winston C. Vaughan1 (1) Stanford Sinus Center, R135, 300 Pasteur Drive, 94305 Stanford, CA, USA Abstract Chronic sinusitis with recurrent acute infections continues to be a significant medical problem. Even after aggressive medical and surgical management, some patients continue to have recurrent infections. These

infections are often multidrug-resistant. Topical delivery of medications into body cavities has been practiced for decades. Recently, the use of prescription antibiotic, antifungal, and anti-inflammatory topical medications has increased for sinus patients. This article examines emerging data on nebulized antimicrobials for patients with sinusitis. http://www.springerlink.com/content/q5j0t17g4924663v/ Penny Houle <pennyhoule > wrote: Yeah, unfortunately that's exactly the info I've got on my sheet. No ml/mg etc. I'll see if I can get anymore info from people I know. Otherwise it will be the next time I talk to the pharmacist. And yes, I do

believe there's been stuff written up about this spray (or similar combos) but I don't recall where I saw them. I'd just try doing some googling with some of the key words. Maybe also try fungal infection sinus spray, stanford sinus infection spray, things like that. I'll dig around too. good luck! penny Nelly Pointis <janelpiedbauge (DOT) net> wrote: Penny, Someone I know has had very bad sinus probs for years. He keeps having to be on abx several times a year, recently he had a strep throat followed by bronchitis and flare of sinusitis of course. He is about ripe this time to embark on some form of serious

treatment. He also has a high titer for Chl pn). I know you tried to copy the script to give us the info re drugs and dosages. Would you by any chance be able to answer a couple of queries (because it looks like we're going to have to make the spray on the kitchen table) Amphotericin-B .0170 (ml?; mg? ) we have powder but not sure how much to use, we would dilute it in some saline Dexamethasone .170 (can be less) same thing: what the unit to measure it with and is it liquid that has been pre-diluted. any idea whether Dexamethasone can be swapped for another form of corticosteroids (prednisone etc) Gentamycin 80mg (I huess that's the powder that gets disoved into the saline) in NL Saline

60ml 2 sprays each nostril twice daily for 6 weeks anything special about the sprays -nebuliser?) (my doc gave me 3 refills, which I plan to use) Penny, it would be great if we could have more info totry it out BEFORE he goes to infectious doctor and to ENT. They are not exactly the sharpest from what I understand. Did you say there has been stuff published re this approach? Thanks Nelly (tired, it's nearly 1 am here, I'm falling asleep) Hi Barb, I

first heard of this spray via my former ENT and several patients (including lyme patients) who had a lot of success with it. As I understand it, she got the original formulation from Stanford docs. Unfortunately, she refused to prescribe it for me because she said that it wouldn't work against my organisms and later that my sinuses appeared to be "clear" Pffft. So based on the continuos glowing reports, I had a friend give me a copy of the prescription and I gave it to my GP who wrote the script. He didn't really quite get it and it can only be done through a compounding pharmacy so there was a little confusion about the mixture, but I used the same pharmacist who has filled it for my ENT in the past so it got worked out. It's a bit difficult to read the script, but here's what I can make out. Amphotericin-B .0170 Dexamethasone .170 (can be less) Gentamycin 80mg in NL Saline 60ml 2 sprays each nostril twice daily for 6 weeks (my doc gave me 3 refills, which I plan to use) So far my insurance has refused to pay, but it was $45 for 6 weeks. Something I can definitely handle for this much success. So far this is making a huge difference for me. Energy's up, headache's & head pressure way down, overall body pain levels down. Not waking up feeling like there's goo stuck somewhere between my ears that I can't quite locate or discharge. It's definitely one of the better things I've tried so far, and I've heard this numerous times from other patients. It's just taken a long time for me to get the whole

thing together and to get the script. Bleu's always been a big Amphotericin B nasal spray proponent so that alone might help a lot of people with chronic infections. But I think there's really something to having the mixture of anti-fungal and antibiotic. I also have to say that I haven't yet been able to stop taking penicillin VK or the Cipro but I'm seeing the possibility of cutting back there after a while since I forgot one evening dose and woke up headache free. Strangely, my cipro/tendon issues seem to be resolving event thought I've been on Cipro for several months now. They're feeling much better. If your friend is interested in the forumula but needs more specifics, he could always have his doc contact the ENT (or the compounding pharmacist) for specifics. I'd be happy to provide that info as I'd be really happy if it helps others as well. penny p.s. I think there are some studies out there that talk about this combination of drugs. Your friend might want to do a search. Barb Peck <egroups1bp > wrote: Penny- That's great..What Doc prescribed that for you? And what exactly are the amounts in it- etc.. I have a friend with similar condition as you ( a Bone-headed guy - not taking care of it at this time- but says he will soon...).Any additional info you can give me- I'll pass it along to him.Barb>> It's been about a week since I started the Compounding Pharmacy's nasal spray

of Gentamycin, Amphotericin B with a minute amount of steroid in a saline base. And it really IS helping. Most surprising to me is I've noticed a big change in my inflammation levels and tendon issues. The best news is I'm waking up headache free almost every day since I started the spray. Before I started the spray I was feeling some infection symptoms, stiff neck, having migraines again, etc. After the spray, all of these symptoms are way down. It sure would be nice if this spray could actually clear away some of the mess in my head.> > I still have to take the Penicillin VK and Cipro & antifungal (currently Ketokonazole) or symptoms return. I hope this spray (or something) can help beat this infection back to the point that I won't have to keep adding new antibiotics and anti-fungals just to maintain the same level of suppression. > > penny>

[Guest guest]

Thanks, Penny, I will pass this on. I don't think he will be able to dictate to his doctor what abx should go into a nebuliser, but this might be a starting point for him to ask for some form of multiple topical treatment. He's not that medically pro-active (he's a friend's son), I don't think he'll be able to push really hard to get the exact same combo you got, but it might help him in his dealings with ENT.

Nelly

Re: [infections] Re: Report on compounded nasal spray - gentamycin, amphotericin B and steroid

First thing I found...but can't access paper.

Winston C. Vaughan1

(1)

Stanford Sinus Center, R135, 300 Pasteur Drive, 94305 Stanford, CA, USA

Abstract Chronic sinusitis with recurrent acute infections continues to be a significant medical problem. Even after aggressive medical and surgical management, some patients continue to have recurrent infections. These infections are often multidrug-resistant. Topical delivery of medications into body cavities has been practiced for decades. Recently, the use of prescription antibiotic, antifungal, and anti-inflammatory topical medications has increased for sinus patients. This article examines emerging data on nebulized antimicrobials for patients with sinusitis.

http://www.springerlink.com/content/q5j0t17g4924663v/

Penny Houle <pennyhoule@...> wrote:

Yeah, unfortunately that's exactly the info I've got on my sheet. No ml/mg etc. I'll see if I can get anymore info from people I know. Otherwise it will be the next time I talk to the pharmacist.

And yes, I do believe there's been stuff written up about this spray (or similar combos) but I don't recall where I saw them. I'd just try doing some googling with some of the key words. Maybe also try fungal infection sinus spray, stanford sinus infection spray, things like that. I'll dig around too.

good luck!

penny Nelly Pointis <janelpiedbauge (DOT) net> wrote:

Penny,

Someone I know has had very bad sinus probs for years. He keeps having to be on abx several times a year, recently he had a strep throat followed by bronchitis and flare of sinusitis of course. He is about ripe this time to embark on some form of serious treatment. He also has a high titer for Chl pn).

I know you tried to copy the script to give us the info re drugs and dosages. Would you by any chance be able to answer a couple of queries (because it looks like we're going to have to make the spray on the kitchen table)

Amphotericin-B .0170 (ml?; mg? ) we have powder but not sure how much to use, we would dilute it in some saline

Dexamethasone .170 (can be less) same thing: what the unit to measure it with and is it liquid that has been pre-diluted. any idea whether Dexamethasone can be swapped for another form of corticosteroids (prednisone etc)

Gentamycin 80mg (I huess that's the powder that gets disoved into the saline)

in NL Saline 60ml

2 sprays each nostril twice daily for 6 weeks anything special about the sprays -nebuliser?)

(my doc gave me 3 refills, which I plan to use)

Penny, it would be great if we could have more info totry it out BEFORE he goes to infectious doctor and to ENT. They are not exactly the sharpest from what I understand. Did you say there has been stuff published re this approach?

Thanks

Nelly (tired, it's nearly 1 am here, I'm falling asleep)

Hi Barb,

I first heard of this spray via my former ENT and several patients (including lyme patients) who had a lot of success with it. As I understand it, she got the original formulation from Stanford docs. Unfortunately, she refused to prescribe it for me because she said that it wouldn't work against my organisms and later that my sinuses appeared to be "clear" Pffft. So based on the continuos glowing reports, I had a friend give me a copy of the prescription and I gave it to my GP who wrote the script. He didn't really quite get it and it can only be done through a compounding pharmacy so there was a little confusion about the mixture, but I used the same pharmacist who has filled it for my ENT in the past so it got worked out.

It's a bit difficult to read the script, but here's what I can make out.

Amphotericin-B .0170

Dexamethasone .170 (can be less)

Gentamycin 80mg

in NL Saline 60ml

2 sprays each nostril twice daily for 6 weeks

(my doc gave me 3 refills, which I plan to use)

So far my insurance has refused to pay, but it was $45 for 6 weeks. Something I can definitely handle for this much success.

So far this is making a huge difference for me. Energy's up, headache's & head pressure way down, overall body pain levels down. Not waking up feeling like there's goo stuck somewhere between my ears that I can't quite locate or discharge. It's definitely one of the better things I've tried so far, and I've heard this numerous times from other patients. It's just taken a long time for me to get the whole thing together and to get the script.

Bleu's always been a big Amphotericin B nasal spray proponent so that alone might help a lot of people with chronic infections. But I think there's really something to having the mixture of anti-fungal and antibiotic. I also have to say that I haven't yet been able to stop taking penicillin VK or the Cipro but I'm seeing the possibility of cutting back there after a while since I forgot one evening dose and woke up headache free. Strangely, my cipro/tendon issues seem to be resolving event thought I've been on Cipro for several months now. They're feeling much better.

If your friend is interested in the forumula but needs more specifics, he could always have his doc contact the ENT (or the compounding pharmacist) for specifics. I'd be happy to provide that info as I'd be really happy if it helps others as well.

penny

p.s. I think there are some studies out there that talk about this combination of drugs. Your friend might want to do a search.

Barb Peck <egroups1bp > wrote:

Penny- That's great..What Doc prescribed that for you? And what exactly are the amounts in it- etc.. I have a friend with similar condition as you ( a Bone-headed guy - not taking care of it at this time- but says he will soon...).Any additional info you can give me- I'll pass it along to him.Barb>> It's been about a week since I started the Compounding Pharmacy's nasal spray of Gentamycin, Amphotericin B with a minute amount of steroid in a saline base. And it really IS helping. Most surprising to me is I've noticed a big change in my inflammation levels and tendon issues. The best news is I'm waking up headache free almost every day since I started the spray. Before I started the spray I was feeling some infection symptoms, stiff neck, having migraines again, etc. After the spray, all of these symptoms are way down. It sure would be nice if this spray could actually clear away some of the mess in my head.> > I still have to take the Penicillin VK and Cipro & antifungal (currently Ketokonazole) or symptoms return. I hope this spray (or something) can help beat this infection back to the point that I won't have to keep adding new antibiotics and anti-fungals just to maintain the same level of suppression. > > penny>

[Guest guest]

Yeah, I realize that was a nebulized formula. I don't know how similar they would be in their formulas, but could help support the effectiveness of the combo. Believe me though, I've done nebulized stuff, and this spray is WAY easier and WAY more effective for me. I'm going to talk to some others who've done the spray, and see if they know the formula in any more detail. Otherwise, I've got to talk to the pharmacist face-to-face (and he's quite a distance away so it may be awhile). The rest of the staff just doesn't understand stuff like this at all. pennyNelly Pointis <janel@...> wrote: Thanks, Penny, I will pass this on. I don't think he will be able to dictate to his doctor what abx should go into a nebuliser, but this might be a starting point for him to ask for some form of multiple topical treatment. He's not that medically pro-active (he's a friend's son), I don't think he'll be able to push really hard to get the exact same combo you got, but it might help him in his dealings with ENT. Nelly Re: [infections] Re: Report on compounded nasal spray - gentamycin, amphotericin B and steroid First thing I found...but can't access paper. Winston C. Vaughan1 (1) Stanford Sinus

Center, R135, 300 Pasteur Drive, 94305 Stanford, CA, USA Abstract Chronic sinusitis with recurrent acute infections continues to be a significant medical problem. Even after aggressive medical and surgical management, some patients continue to have recurrent infections. These infections are often multidrug-resistant. Topical delivery of medications into body cavities has been practiced for decades. Recently, the use of prescription antibiotic, antifungal, and anti-inflammatory topical medications has increased for sinus patients. This article examines emerging data on nebulized antimicrobials for patients with sinusitis. http://www.springerlink.com/content/q5j0t17g4924663v/ Penny Houle <pennyhoule > wrote: Yeah, unfortunately that's exactly the info I've got on my sheet. No ml/mg etc. I'll see if I can get anymore info from people I know. Otherwise it will be the next time I talk to the pharmacist. And yes, I do believe there's been stuff written up about this spray (or similar combos) but I don't recall where I saw them. I'd just try doing some googling with some of the key words. Maybe also try fungal infection sinus spray, stanford sinus infection spray, things like that. I'll dig around too. good luck! penny Nelly Pointis <janelpiedbauge (DOT) net> wrote: Penny, Someone I know has had very bad sinus probs for years. He keeps having to be on abx several times a year, recently he had a strep throat followed by bronchitis and flare of sinusitis of course. He is about ripe this time to embark on some form of serious treatment. He also has a high titer for Chl pn). I know you tried to copy the script to give us the info re drugs and dosages. Would you by any chance be able to answer a couple of queries (because it looks like we're going to have to make the spray on the kitchen table) Amphotericin-B .0170 (ml?; mg? ) we

have powder but not sure how much to use, we would dilute it in some saline Dexamethasone .170 (can be less) same thing: what the unit to measure it with and is it liquid that has been pre-diluted. any idea whether Dexamethasone can be swapped for another form of corticosteroids (prednisone etc) Gentamycin 80mg (I huess that's the powder that gets disoved into the saline) in NL Saline 60ml 2 sprays each nostril twice daily for 6 weeks anything special about the sprays -nebuliser?) (my doc gave me 3 refills, which I plan to use) Penny, it would be great if we could have more info totry it out BEFORE he goes to infectious doctor and to ENT. They are not exactly the sharpest from what I understand. Did you say there has been stuff published re this

approach? Thanks Nelly (tired, it's nearly 1 am here, I'm falling asleep) Hi Barb, I first heard of this spray via my former ENT and several patients (including lyme patients) who had a lot of success with it. As I understand it, she got the original formulation from Stanford docs. Unfortunately, she refused to prescribe it for me because she said that it wouldn't work against my organisms and later that my sinuses appeared to be "clear" Pffft. So based on the continuos glowing reports, I had a friend give me a copy of the prescription and I gave it to my GP who wrote the

script. He didn't really quite get it and it can only be done through a compounding pharmacy so there was a little confusion about the mixture, but I used the same pharmacist who has filled it for my ENT in the past so it got worked out. It's a bit difficult to read the script, but here's what I can make out. Amphotericin-B .0170 Dexamethasone .170 (can be less) Gentamycin 80mg in NL Saline 60ml 2 sprays each nostril twice daily for 6 weeks (my doc gave me 3 refills, which I plan to use) So far my insurance has refused to pay, but it was $45 for 6 weeks. Something I can definitely handle for this much success.

So far this is making a huge difference for me. Energy's up, headache's & head pressure way down, overall body pain levels down. Not waking up feeling like there's goo stuck somewhere between my ears that I can't quite locate or discharge. It's definitely one of the better things I've tried so far, and I've heard this numerous times from other patients. It's just taken a long time for me to get the whole thing together and to get the script. Bleu's always been a big Amphotericin B nasal spray proponent so that alone might help a lot of people with chronic infections. But I think there's really something to having the mixture of anti-fungal and antibiotic. I also have to say that I haven't yet been able to stop taking penicillin VK or the Cipro but I'm seeing the possibility of cutting back there after a while since I forgot one evening dose and woke up headache free.

Strangely, my cipro/tendon issues seem to be resolving event thought I've been on Cipro for several months now. They're feeling much better. If your friend is interested in the forumula but needs more specifics, he could always have his doc contact the ENT (or the compounding pharmacist) for specifics. I'd be happy to provide that info as I'd be really happy if it helps others as well. penny p.s. I think there are some studies out there that talk about this combination of drugs. Your friend might want to do a search. Barb Peck <egroups1bp > wrote: Penny- That's great..What Doc prescribed that for you? And what exactly are the amounts in it- etc.. I have a friend with similar condition as you ( a Bone-headed

guy - not taking care of it at this time- but says he will soon...).Any additional info you can give me- I'll pass it along to him.Barb>> It's been about a week since I started the Compounding Pharmacy's nasal spray of Gentamycin, Amphotericin B with a minute amount of steroid in a saline base. And it really IS helping. Most surprising to me is I've noticed a big change in my inflammation levels and tendon issues. The best news is I'm waking up headache free almost every day since I started the spray. Before I started the spray I was feeling some infection symptoms, stiff neck, having migraines again, etc. After the spray, all of these symptoms are way down. It sure would be nice if this spray could actually clear away some of

the mess in my head.> > I still have to take the Penicillin VK and Cipro & antifungal (currently Ketokonazole) or symptoms return. I hope this spray (or something) can help beat this infection back to the point that I won't have to keep adding new antibiotics and anti-fungals just to maintain the same level of suppression. > > penny>

[Guest guest]

If you guys send me your fax numbers, I can fax you a copy of the instructions I have from the original ENT and from the pharmacist, or I can scan them and send them to you via email. Your own pharmacists will probably understand these written instructions better than anything I can convey verbally. They can also call the pharmacy or the ENT, if they have more questions. Just remember, this same ENT told me this spray wouldn't help me. But other people kept saying how much it helped them so I went to my GP and had him write the prescription and hallelujah, it's helped a lot, proving the ENT wrong. penny pjeanneus <pj7@...> wrote: Penny, I will be seeing my doctor Friday. Thanks for any info you can share. I am printing out the stuff you mention. Hopefully she will be able to get this for me at a local compounding pharmacy. I am willing to pay for it, because it makes the most sense of anything I have tried so far.a>> Yeah, I realize that was a nebulized formula. I don't know how similar they would be in their formulas, but could help support the effectiveness of the combo. Believe me though, I've done nebulized stuff, and this spray is WAY easier and WAY more effective for me. > > I'm going to talk to some others who've done the spray, and see if they know the formula in any more detail. Otherwise, I've got to

talk to the pharmacist face-to-face (and he's quite a distance away so it may be awhile). The rest of the staff just doesn't understand stuff like this at all.> > penny> > Nelly Pointis <janel@...> wrote:> Thanks, Penny, I will pass this on. I don't think he will be able to dictate to his doctor what abx should go into a nebuliser, but this might be a starting point for him to ask for some form of multiple topical treatment. He's not that medically pro-active (he's a friend's son), I don't think he'll be able to push really hard to get the exact same combo you got, but it might help him in his dealings with ENT.> > Nelly> Re:

[infections] Re: Report on compounded nasal spray - gentamycin, amphotericin B and steroid> > > First thing I found...but can't access paper.> > Winston C. Vaughan1 > (1) Stanford Sinus Center, R135, 300 Pasteur Drive, 94305 Stanford, CA, USA> > Abstract Chronic sinusitis with recurrent acute infections continues to be a significant medical problem. Even after aggressive medical and surgical management, some patients continue to have recurrent infections. These infections are often multidrug-resistant. Topical delivery of medications into body cavities has been practiced for decades. Recently, the use of prescription antibiotic, antifungal, and anti-inflammatory topical medications has increased for sinus patients. This article examines emerging data on nebulized antimicrobials for patients with sinusitis. > > http://www.springerlink.com/content/q5j0t17g4924663v/> > > > Penny Houle <pennyhoule@...> wrote:> Yeah, unfortunately that's exactly the info I've got on my sheet. No ml/mg etc. I'll see if I can get anymore info from people I know. Otherwise it will be the next time I talk to the pharmacist. > > And yes, I do believe there's been stuff written up about this spray (or similar combos) but I don't recall where I saw them. I'd just try doing some googling with some of the key words. Maybe also try fungal infection sinus spray, stanford sinus infection spray, things like that. I'll dig around too.> > good luck!> > penny > > Nelly Pointis <janel@...> wrote:> Penny,> > Someone I know has had very bad sinus probs for years. He keeps having to be

on abx several times a year, recently he had a strep throat followed by bronchitis and flare of sinusitis of course. He is about ripe this time to embark on some form of serious treatment. He also has a high titer for Chl pn).> > I know you tried to copy the script to give us the info re drugs and dosages. Would you by any chance be able to answer a couple of queries (because it looks like we're going to have to make the spray on the kitchen table)> > Amphotericin-B .0170 (ml?; mg? ) we have powder but not sure how much to use, we would dilute it in some saline> Dexamethasone .170 (can be less) same thing: what the unit to measure it with and is it liquid that has been pre-diluted. any idea whether Dexamethasone can be swapped for another form of corticosteroids (prednisone etc)> Gentamycin 80mg (I huess that's the powder that gets disoved into the saline)> in NL Saline

60ml> > 2 sprays each nostril twice daily for 6 weeks anything special about the sprays -nebuliser?)> > (my doc gave me 3 refills, which I plan to use)> > > Penny, it would be great if we could have more info totry it out BEFORE he goes to infectious doctor and to ENT. They are not exactly the sharpest from what I understand. Did you say there has been stuff published re this approach? > > Thanks> > Nelly (tired, it's nearly 1 am here, I'm falling asleep) > Hi Barb,> > I first heard of this spray via my former ENT and several patients (including lyme patients) who had a lot of success with it. As I understand it, she got the original formulation from Stanford docs. Unfortunately, she refused to prescribe it for me because she said that it wouldn't work against my organisms and later that my sinuses appeared to be "clear" Pffft. So based on

the continuos glowing reports, I had a friend give me a copy of the prescription and I gave it to my GP who wrote the script. He didn't really quite get it and it can only be done through a compounding pharmacy so there was a little confusion about the mixture, but I used the same pharmacist who has filled it for my ENT in the past so it got worked out.> > It's a bit difficult to read the script, but here's what I can make out. > > Amphotericin-B .0170> Dexamethasone .170 (can be less)> Gentamycin 80mg > in NL Saline 60ml> > 2 sprays each nostril twice daily for 6 weeks> > (my doc gave me 3 refills, which I plan to use)> > So far my insurance has refused to pay, but it was $45 for 6 weeks. Something I can definitely handle for this much success. > > So far this is making a huge difference for me. Energy's up, headache's &

head pressure way down, overall body pain levels down. Not waking up feeling like there's goo stuck somewhere between my ears that I can't quite locate or discharge. It's definitely one of the better things I've tried so far, and I've heard this numerous times from other patients. It's just taken a long time for me to get the whole thing together and to get the script. > > Bleu's always been a big Amphotericin B nasal spray proponent so that alone might help a lot of people with chronic infections. But I think there's really something to having the mixture of anti-fungal and antibiotic. I also have to say that I haven't yet been able to stop taking penicillin VK or the Cipro but I'm seeing the possibility of cutting back there after a while since I forgot one evening dose and woke up headache free. Strangely, my cipro/tendon issues seem to be resolving event thought I've been on Cipro for several months now.

They're feeling much better.> > If your friend is interested in the forumula but needs more specifics, he could always have his doc contact the ENT (or the compounding pharmacist) for specifics. I'd be happy to provide that info as I'd be really happy if it helps others as well.> > penny> > p.s. I think there are some studies out there that talk about this combination of drugs. Your friend might want to do a search.> > > Barb Peck <egroups1bp@...> wrote:> Penny- That's great..> > What Doc prescribed that for you? And what exactly are the amounts in > it- etc.. I have a friend with similar condition as you ( a Bone-> headed guy - not taking care of it at this time- but says he will > soon...).> > Any additional info you can give me- I'll pass it along to him.> > Barb> > > >> > It's been about a week since I started the Compounding Pharmacy's > nasal spray of Gentamycin, Amphotericin B with a minute amount of > steroid in a saline base. And it really IS helping. Most surprising > to me is I've noticed a big change in my inflammation levels and > tendon issues. The best news is I'm waking up headache free almost > every day since I started the spray. Before I started the spray I was > feeling some infection symptoms, stiff neck, having migraines again, > etc. After the spray, all of these symptoms are way down. It sure > would be nice if this spray could actually clear away some of the > mess in my head.> > > > I still have to take the Penicillin VK and Cipro &

antifungal > (currently Ketokonazole) or symptoms return. I hope this spray (or > something) can help beat this infection back to the point that I > won't have to keep adding new antibiotics and anti-fungals just to > maintain the same level of suppression. > > > > penny> >>