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

[Guest guest]

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 for the details- If I need more I'll contact you.

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, is the cortisone a necessary component?

> >

> > 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, 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

> >

>