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Medical Forum / Diseases and Disorders / Sinusitis / June 2006can you tell me about amphotericin b?
i had endoscopic sinus surgery in march and endured a series of nasty infections right after. i was put on a course of antibiotics (keflex). since then i continue to have incredible sinus pressure in my face, behind my eyes, and in my head. i know that i have been exposed to molds in the past and my doctor suggested that i irrigate with topical amphotericin b. i began last night and have several questions: 1. what is the best way to administer the drug? i used a 20 ml syringe and just squirted the ampho b up each nostril. less solution seemed to come out of my nose than with a neti pot or grossan irrigator, which i've used in the past. which is the best delivery method? is it okay to have solution come out the other nostril? 2. what is the best way to warm the drug? i just ran the syringe under hot water. 3. how long before i'm likely to see results? also, is there an advantage to combining topical ampho b with a systemic antifungal such as sporanox? thanks, grateful >i had endoscopic sinus surgery in march and endured a series of nasty >infections right after. i was put on a course of antibiotics (keflex). [quoted text clipped - 16 lines] >also, is there an advantage to combining topical ampho b with a >systemic antifungal such as sporanox? I've got similar questions, but can compare notes with you: I picked up my Ampho-B yesterday. I was going to use my waterpik BUT ... the bucket on mine is 1,000ml, so ... the first "ml" mark appears at 100ml. Not good for 40ml dosing, 20ml per side. Also, 40ml is just a puddle in the bottom meaning that you really CAN'T get it all into your sinuses. Problem. My thought; I have an ear bulb syringe, AND the rubber Grossan tip FROM a waterpik that fits on the bulb syringe BUT ... like you ... I don't think enough goes in and comes out. I'm not sure I want a highly toxic drug hanging around any more than necessary. For me, then, I'd *rather* it come out the other nostril. That's irrigation, right? So my thought was: pour 500ml of the Ampho (or 200 or whatever) into the waterpik bucket, then just watch it go down by (about) 20ml. Switch sides. Watch it go down again, then stop. Pour the remaining back into the bottle so I can rinse the unit through. I figure: I'm using a well cleaned waterpik reservoir, so I'm not *likely* to contaminate a potent antifungal in 2 minutes. As to warming it: your method would work, as would using a Pyrex cup/measuring cup and microwaving it briefly, as would putting that Pyrex cup IN a bowl of warm water first. From the studies I've looked at, it seems like it's best to keep at the nasal ampho-b thing for a few months, at least, though some courses, it seems, have been only 4 weeks. ??? Results? Surely by a month, based on the studies I've seen. Maybe quicker. As to systemic antifungals: I'm surely NOT a doctor, but HAVE been looking closely at this fungal connectino to sinus issues. I have had toenail/foot fungus for *decades*. It goes away with a course of systemic antifungals but *always* comes back. *I think* my body just has a problem with fungi (could I be wrong? Sure. I don't think I am, though). For me, then (and for my podiatrist, AND for my ENT), Sporanox by mouth is a good idea. It fixed me up before (until I took a long course of doxycycline for an eye issue and everything came back). I'm taking it again. If you're like me: I HATE all these meds, especially when I read more about them, but .... I hate being sick even more! Put this post in a time capsule. I think we're going to find more and more and more that fungi are the underlying problem for many or most of us, and I think we'll find that crappy western diets and overuse of antibiotics are the primary culprits. Love to be wrong..... Good luck, Grateful! Neil dear neil, thanks for your thoughts. so we're ampho buddies! it sounds like you're going the grossan route. tichenor describes a method, using the grossan, that begins with irrigating with 500ml of saline and then adding 40 ml ampho at the end, to be divided between the nostrils. you can find it at: http://www.sinuses.com/fungal.htm. honestly, it sounds a bit complicated to me--i worry about the ampho mixing with the saline. and also about dividing it equally between the nostrils. i think i may stay low tech to start--either neti pot or syringe. it was good to hear that the solution is supposed to pour out the other nostril--that's the way i've always done it. but i wonder, how does the medicine get to where it's needed in the sinuses? i have lots of deep pressure, possibly in the sphenoids, and i just don't see how it reaches back. i'm used to warm salty water when i irrigate and i wonder if we are inflaming our membranes by using a non-saline, room temperature solution. of course, that's what's been used, and with success in some people. i think my biggest worry is that it won't work. i had surgery thinking things would get better and they are actually worse. i guess the good news is that the surgery may make it easier to deliver the ampho b solution. and i do agree that molds and fungi are going to be seen to be the hidden enemy in a variety of chronic conditions. good luck to you! grateful p.s. any thoughts about using a steroid (flonase) while on ampho b? of course the fewer meds the better.... >dear neil, > [quoted text clipped - 6 lines] >honestly, it sounds a bit complicated to me--i worry about the ampho >mixing with the saline. I've read that it should *not* be mixed with saline, so ... I think you're right to worry. I do the lavage (now with sea salt), then run 1 liter of warm water (pure) through, then the ampho in the way I described, then another liter of plain warm water to clean. >and also about dividing it equally between the >nostrils. i think i may stay low tech to start--either neti pot or >syringe. I can't imagine there's anything wrong with that. I'm just looking to go that extra centimeter back with the extra pressure. If the syringe or neti pot will do that (even just by tilting your head back??), then you'll probably do just fine. > it was good to hear that the solution is supposed to pour out >the other nostril--that's the way i've always done it. but i wonder, >how does the medicine get to where it's needed in the sinuses? i have >lots of deep pressure, possibly in the sphenoids, and i just don't see >how it reaches back. Again, the pressure (IIIRC, 5psi on a Grossan) moves it as deep as it should go. A bulb syringe or equivalent should, too. As to Neti pots, though ... I don't quite know. Maybe just tilting your head way over to let gravity help would work. >i'm used to warm salty water when i irrigate and i wonder if we are >inflaming our membranes by using a non-saline, room temperature >solution. of course, that's what's been used, and with success in some >people. I don't know of any downsides to warming the ampho one of the ways that I mentioned (or you already do). Might be some, but I haven't seen any. >i think my biggest worry is that it won't work. i had surgery thinking >things would get better and they are actually worse. i guess the good >news is that the surgery may make it easier to deliver the ampho b >solution. I've had four surgeries, so ... I hear ya' >and i do agree that molds and fungi are going to be seen to >be the hidden enemy in a variety of chronic conditions. as long as they figure out *something* ;-) >good luck to you! and to you.... >grateful > > p.s. any thoughts about using a steroid (flonase) while on ampho b? of >course the fewer meds the better.... Hmmm. Don't know anything about that one. Other than drug interactions (fairly common with antifungals, though I'm not sure about intranasal applications), one issue is always ... how do you know what worked and what didn't?? If you can bear it ... I might recommend one thing at a time. If not, talk to the ENT about the 'roids ;-) All the best, Neil thanks neil! i irrigated using the syringe last night and this morning and i feel like i'm nailing down a routine that works for me. the syringe is exactly 20 ml. i squirt two syringefuls into a glass, microwave for about 16 seconds til slightly warm and then squirt 20 ml into each nostril. using a slightly warm solution feels so much better--i hope the microwave is not destroying the medicine! i have felt no difference yet--still huge sinus pressure. of course, it's early days. so you had 4 surgeries? i wonder, how long did it take after each one for you to feel like your sinuses had healed? my surgery was 3 months ago and i'm feeling so poorly but maybe it's because my membranes are still recovering from the trauma. or is that wishful thinking? grateful p.s. you're so right about the steroids--one thing at a time. >thanks neil! > [quoted text clipped - 11 lines] >membranes are still recovering from the trauma. or is that wishful >thinking? I really haven't had much luck ... winding up with a sinus infection pretty much a week or two after each surgery :-( Probably by a month post-op, though, things would be relatively good, but ... I think polyps are a major issue for me (which is one of the things that the Ampho has been tested against ... with *some* successes (and failures!)). The last time I looked at the FESS stats, it was something like 85% found dramatic relief. 15%, then ... uh ... didn't ;-) I think that's me, I'm just not quite sure why ... but I'm working on it! >grateful > >p.s. you're so right about the steroids--one thing at a time. I still have two refills of Rhinocort Aqua up in the cabinet that wave to me every couple of days, but ... here's more of *my nonsense:* IF there is anything to the notion of an eosinophil reaction (some allergic type thing) to fungi, then ... do I really want to use immunosuppressants to treat it? Even the Merck Manual (finally) says that immune suppression (HIV, chemo, radiation, long-term use of antibiotics, etc.) can give rise to systemic fungal issues. Finally. ;-) I could be wayyyy off the mark here. I know that--years ago--Restasis came out for treating dry eyes. Its ophthalmic cyclosporine (immunosuppressant). While I used it, I got a sinus infection (maybe totally unrelated, but). Took Bactrim ... as I had many times before ... and had what they call a "fixed drug eruption." Don't ask. What was different? Maybe ... just *maybe* the immune suppressing therapy I was using. So I'm just a *tad* leery of 'roids. YMMV. Glad you got your ampho-groove on. Hope it fixes you up! >I picked up my Ampho-B yesterday. I was going to use my waterpik BUT >... the bucket on mine is 1,000ml, so ... the first "ml" mark appears >at 100ml. Not good for 40ml dosing, 20ml per side. Also, 40ml is >just a puddle in the bottom meaning that you really CAN'T get it all >into your sinuses. Problem. Yes you can. Do 20 each nostril. Turn it on the lowest setting. If you were given a couple of measuring cups, slowly pour and aim for the little hole in the water pik, while the other is holding the attachment in your nostril. You should be able to bend your head over the sink and do this. It will seem awkward, but you'll catch on. The other way of doing it, I found, was to pour the 20 ml in, turn it on, and when it gets to the bottom, pick up the water pik and tilt it until the remaining ampho gets all the way in. Or, like I said in *grateful*'s post, if you put in 25 ml, you'll probably only use 20 of it, and still have some left over. >My thought; I have an ear bulb syringe, AND the rubber Grossan tip >FROM a waterpik that fits on the bulb syringe BUT ... like you ... I >don't think enough goes in and comes out. I'm not sure I want a >highly toxic drug hanging around any more than necessary. For me, >then, I'd *rather* it come out the other nostril. That's irrigation, >right? Hmmmm...as far as being *highly toxic* I wouldn't know, but I doubt it. But from what I read from this group (which got me started to irrigate), in one nostril and out the other (doing it correctly and with the correct substances) is what successful irrigation is. >So my thought was: pour 500ml of the Ampho (or 200 or whatever) into >the waterpik bucket, then just watch it go down by (about) 20ml. >Switch sides. Watch it go down again, then stop. Pour the remaining >back into the bottle so I can rinse the unit through. Maybe you could do that. Sounds like too much trouble to me. See above for what worked for me. I'd rather not expose this stuff to the elements, just to put it right back where it came from. In - out - works for me. >I figure: I'm using a well cleaned waterpik reservoir, so I'm not >*likely* to contaminate a potent antifungal in 2 minutes. I always rinse my basin and attachment in hot soapy water, leaving it set for the next time. >As to warming it: your method would work, as would using a Pyrex >cup/measuring cup and microwaving it briefly, as would putting that >Pyrex cup IN a bowl of warm water first. Since the ampho-b wasn't a success for me, I've gone to the method of using pickling salt, baking soda, and distilled water. I never warmed the ampho-b, just set it out until it neared room temperature. >From the studies I've looked at, it seems like it's best to keep at >the nasal ampho-b thing for a few months, at least, though some >courses, it seems, have been only 4 weeks. ??? I tried it for 2 months, then my doc and I gave up on it. That's not to say you should. I have awful allergies, and am prone to infections that don't go away easily, and have just avoided sinus surgery by a 21 day course of Levaquin, prednisone and decongestant. >Results? Surely by a month, based on the studies I've seen. Maybe >quicker. I don't know. I play a patient in real life. >As to systemic antifungals: I'm surely NOT a doctor, but HAVE been >looking closely at this fungal connectino to sinus issues. I have had >toenail/foot fungus for *decades*. It goes away with a course of >systemic antifungals but *always* comes back. *I think* my body just >has a problem with fungi (could I be wrong? Sure. I don't think I >am, though). That I don't know. I do know they prescribe ampho-B in some form to AIDS patients, who can't risk infections, so it is a pretty potent drug. But, as you'll see from other posters, it's not the end-all that the Mayo Clinic thought it was. Not to burst your bubble - I hope it works out for you. Just be realistic and not too disappointed if it doesn't. Keep trying and don't give up. >If you're like me: I HATE all these meds, especially when I read more >about them, but .... I hate being sick even more! I don't hate the meds, it takes too much of an effort to pay for and use them to hate them. ;-) >Put this post in a time capsule. I think we're going to find more and >more and more that fungi are the underlying problem for many or most >of us, and I think we'll find that crappy western diets and overuse of >antibiotics are the primary culprits. Love to be wrong..... You might be wrong there. Too early to tell. Luckily, I had a doctor who believed in long-term (well, at least 3 weeks) antibiotics, or I'd probably be sitting here with the effects of an unnecessary ethmoid sinus surgery, and never have gotten even on the road to find a solution. I wish you good luck. Rick >i had endoscopic sinus surgery in march and endured a series of nasty >infections right after. i was put on a course of antibiotics (keflex). >since then i continue to have incredible sinus pressure in my face, >behind my eyes, and in my head. i know that i have been exposed to >molds in the past and my doctor suggested that i irrigate with topical >amphotericin b. i began last night and have several questions: If you read earlier posts of mine, you'll see my experiences with using ampho-b with a water pik and an attachment similar to the Grossnan tip (although mine has a machine steel shaft compared to plastic) >1. what is the best way to administer the drug? i used a 20 ml syringe >and just squirted the ampho b up each nostril. less solution seemed to >come out of my nose than with a neti pot or grossan irrigator, which >i've used in the past. which is the best delivery method? is it okay to >have solution come out the other nostril? You don't say how much your doctor prescribed. I got four bottles for a month. I put 20-25 ml in (the extra 5 was to make up for the ampho that was wasted). Even doing that, and knocking some over by accident, I still had a day or two left at the end of the month, and that was with irrigating twice a day. And yes, it's fine to have it come out the other nostril. I did sneeze strongly each time I did it, so be careful. If you have a bad back to begin with, you could make it worse, so I bend my knees and as I'm sneezing, I bring my head backwards so as not to strain my neck and back. YMMV. >2. what is the best way to warm the drug? i just ran the syringe under >hot water. Everything I read said room temperature. The bottle said don't expose to light. So what I did was pour my dosage into the two dosage cups, put them in a cabinet, close it, and go away for about a half hour or more (I forget which), then use it. >3. how long before i'm likely to see results? Well, with me...never. I was on it 2 months, but I had an infection that wasn't being treated properly, so I can't say it really helped. I avoided an unnecessary surgery and I'm going to an allergist now. >also, is there an advantage to combining topical ampho b with a >systemic antifungal such as sporanox? I don't know sporanox, but I wouldn't think so, if you're meaning *combining* as in mixing the two. Do the full strength, it may work for you. >thanks, > >grateful Good luck! Someone mentioned oral sporanox: it has been used by Lahey Clinic, by Dr. Peter Catalano. I know someone who was on a course of oral and topical rinses for around a year, after a failed sinus surgery, and got good results. I'm not sure if they are still using the protocol. Judy Why couldn't you use a small spray bottle or Neilmed rinse bottle to deliver the amphotericin B. My sister used it, after much convincing of her Kaiser Permanente doctor, and I believe she used either a neti pot, or a sterilized nasal steroid pump bottle. I'll check with her. > >i had endoscopic sinus surgery in march and endured a series of nasty > >infections right after. i was put on a course of antibiotics (keflex). [quoted text clipped - 50 lines] > > Good luck! judy, did you actually see peter catalano? he was ranked as a 'top doc' in boston magazine. often those docs are pretty conventional in their approach so it's good to see one listed who takes a more alternative approach. grateful After my colleague had such great results, my older daughter met with him. He's very approachable and open. It does take a while to get an appointment with him---but afterwards he responds to emails immediately. For my daughter, he did suggest surgery, which she declined. But he wrote that he is her doctor no matter what decisions she makes. He made his recommendation based on her history of infection, immunodeficiency and abnormal CT. She's just not ready to go that route yet. My colleague had heard about the sporanox at a national allergy meeting, and discovered that Dr. Catalano was the only ENT locally who was utilizing it--at that time, several years ago. He recommends him highly. Judy > judy, > [quoted text clipped - 4 lines] > > grateful On 6/22/06 5:44 AM, in article 1150980272.453363.84360@c74g2000cwc.googlegroups.com, "judy.n" > Someone mentioned oral sporanox: it has been used by Lahey Clinic, by > Dr. Peter Catalano. I know someone who was on a course of oral and [quoted text clipped - 60 lines] >> >> Good luck! Amphotericin B is difficult to use in a distilled water medium. However you can use it in saline the way we do. If your doctor needs this information please have them write or phone or e mail me. Murray Grossan, M.D. entconsult@aol.com dr. grossan, i just saw your post about using amphotericin b in a saline medium. could you please tell me more? would i just mix the ampho b solution to saline or does the ampho solution need to be prepared differently? also have you had success using this approach? grateful On 6/22/06 8:56 AM, in article 1150991800.071859.165620@b68g2000cwa.googlegroups.com, "grateful" <mlandau@hms.harvard.edu> wrote: > dr. grossan, > [quoted text clipped - 5 lines] > > grateful I would be pleased to discuss this with your doctor if they will contact me. Any discussion here can easily be misunderstood. > Amphotericin B is difficult to use in a distilled water medium. However you > can use it in saline the way we do. If your doctor needs this information > please have them write or phone or e mail me. > Murray Grossan, M.D. entconsult@aol.com Murray, IIRC, didn't you correct a post of mine about mixing it with saline by saying it should never be mixed with it??? I'm confused. Susan On 6/22/06 9:11 AM, in article 4fvtq7F1lal0vU1@individual.net, "Susan" <nevermind@nomail.com> wrote: > x-no-archive: yes > [quoted text clipped - 9 lines] > > Susan Susan, you are really sharp. You are correct. However there is a method of using it with saline. > Susan, you are really sharp. You are correct. However there is a method of > using it with saline. Well, now you've got me scratching my head. Either it can be done, or it can't. I thought you said never??? Susan >x-no-archive: yes > [quoted text clipped - 5 lines] > >Susan I have the distinct feeling that this is going to be one of those "I could tell you ... but then I'd have to kill you" scenarios <grin> rick, sorry the ampho b did not work for you. have you found something that does? grateful >rick, > >sorry the ampho b did not work for you. have you found something that >does? > >grateful Grateful, You must not have read my last posts thoroughly. I avoided sinus surgery by 21 days of Levaquin, prednisone and decongestant. That cleared up the infection so the 2nd set of CT scans showed clear on my suspicious ethmoids. I'm going to go to an allergist, and since I'm allergic to lots of stuff (mostly molds and trees) I'll have to have two shots twice a week for several months, on up to about 5 years. We'll see how it goes. I'm also continuing irrigation with the pickling salt/Waterpik solution, and started a 30 day dosage (prescribed by allergist) of PC333 (erythromycin). Also using Nasonex and Astelin. Rick Rick, The period of time to take the macrolides hasn't yet been determined. The 2002 article by Dr. Cervin that first described its use in patients who had sinusitis after surgeries, was a year long study, with the idea that benefit would show by 12 weeks, in those who responded. The first double blind study was published a couple of months ago, it showed a more modest benefit, but they sort of took "all-comers": it did show benefit. (Seriously, they measured a "SNOT" scale. Here's the abstract on PubMed. (It's in Laryngoscope 2006) http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstra ct&list_uids=16467702&query_hl=1&itool=pubmed_docsum (I just put Cervin, A into the search space--it's the first hit.) So, at one month, you may not have achieved the maximal benefit, and it's still not clear how long one should stay on the macrolides--whether the beneficial changes to the mucosa persist off the meds. It's made a big difference for me, and I've stayed on it for 4 years now. I also get allergy shots. The patients who seem to do best have low IgE levels, which I have, despite having lots of positive skin tests and a good response to allergy shots. It's very encouraging to hear how you and your ENT worked to avoid the ethmoid surgery. Judy > >rick, > > [quoted text clipped - 20 lines] > > Rick > (Seriously, they measured a "SNOT" scale. Here's the > abstract on PubMed. (It's in Laryngoscope 2006) Sadly, Judy, in my fifth decade on this earth, I'm still *nowhere near* not chuckling when I read that. "Smo-Nasal Outcome Test-20" or SNOT-20 scale. Somewhere out there ... is *at least* one ENT ... with whom I'd like to have a beer!
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