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Medical Forum / Diseases and Disorders / Sinusitis / March 2006Amphotericin B
Hi folks, First, let me say that I checked the FAQ and only saw a minor mention of the above subject. Hopefully y'all have some experiences with it. Doc #1 recommended sinus surgery (right ethmoid). Went to Doc #2 for second opinion. Although he said that Doc #1's opinion was *reasonable* he took a culture from inside my right nostril, and sent it away for analysis. Got a call from Doc #2 that it was fungus. Arranged to have Amphotericin B rx. The company making this shipped it Fed Ex (it has to be refrigerated) and I got it yesterday. What I got was four bottles of gatorade-looking solution, and a bulb syringe. (Now, the purpose of Amphotericin B is to provide a sinus wash and I presume that it is designed to get rid of the fungus that causes sinusitis. Apparently, there is a Mayo Clinic test that shows this medicine helps, but it's still in the clinical stages. I need to dig deeper into the Mayo's site, but my questions below are more practical for right now.) In the meantime, I checked with the lab's pharmacy about taking that along with Astelin and Nasonex, which I already take. Their pharmacist said it should be taken by itself. But she said to ask the doctor. So I called up Doc #2, and he said (via his assistant) that taking it along with the others is ok. So, there's my dilemma, at least right this minute. Here (finally!) are my questions (or points for discussion, at least): 1. For those of you who are using Amphotericin B, are you using a nasal spray (i.e. Nasonex, Astelin, etc.) with it? 2. In a general sense, what are your experiences with using this medicine? 3. Is it helping? (The contact at the drug company said some people get instant relief, some take 3 months for it to work.) The website that explains the therapy is at www.sinuseducation.com. That's all for now. TIA, Rick Ampho-B nearly killed me - proceed cautiously. > Ampho-B nearly killed me - proceed cautiously. That's not enough information. What was the dose, the regimen, the length of treatment? What was your near fatal reaction to it, and did it respond to intervention or did you get over it on your own? Susan diagnosed with allergic fungal sinusitis - fusarium. nebulized 1 small vial (don't have exact amount) 3 times a day using sinuneb for 6 weeks. Hospitalized with severe asthma, unable to breathe with a pulse ox of 79, coughing up blood, on 5 separate occasions one of which was a 2 day stay at the ICU. Treatment was: 80mg/day of prednisone, pulmicort 3 times a day, atrovent 3 times a day, 2 hits of advair/day, vfend for approximately 8 weeks post ampho-b. I didn't respond to this intervention, intervention made it worse. I checked myself out of the hospital AMA and went to a different facility where they discovered ampho-b had stripped the lining of my respiratory tract, the medications given for intervention I am allergic too, it made it worse. One year later I started feeling normal again. Are you happy now? > diagnosed with allergic fungal sinusitis - fusarium. nebulized 1 small > vial (don't have exact amount) 3 times a day using sinuneb for 6 weeks. [quoted text clipped - 10 lines] > > Are you happy now? The information that you had a near deadly problem with the drug is not, by itself, helpful to anyone reading here whose doctor might rx the drug. The additional information you've provided above can be *very* helpful, because it describes an adverse reaction and the potential effect Amphotericin-B can have on the respiratory tract. It lets folks who may be on the drug (and numerous folks have mentioned taking it here before, but without such reactions) know to be watchful for such symptoms. Is the treatment you were presecribed with the drug and nebulizer a standard on-label use for it, and at that dosage, or was that a mega hit, dosage wise? Susan I can't answer that question accurately because I am not sure. > I can't answer that question accurately because I am not sure. It might be very useful to know the actual dosage and regimen. The problem may not be with the drug, but rather with the way it was used in your case. Susan I am going to look up my medical records and post the detailed information on my website. Lauren >I am going to look up my medical records and post the detailed >information on my website. > >Lauren Lauren, if it's not too much trouble, would you mind posting here that you have added that info to your website? Or you could email me at rickspam.burt@google.com (leave out spam, of course). Thanks, Rick No problem Rick..... On 3/18/06 1:07 PM, in article 1142716031.228016.132230@e56g2000cwe.googlegroups.com, "lrhone11" <lauren@rhone.us> wrote: > diagnosed with allergic fungal sinusitis - fusarium. nebulized 1 small > vial (don't have exact amount) 3 times a day using sinuneb for 6 weeks. [quoted text clipped - 10 lines] > > Are you happy now? Sounds like you used the Ampho full strength rather than diluted, and with sinu neb it goes to the lungs, rather than the sinuses. > Sounds like you used the Ampho full strength rather than diluted, and with > sinu neb it goes to the lungs, rather than the sinuses. I was wondering, too, why her docs would've had her inhaling it and getting it systemically through her lungs, rather than targeting her sinuses? Very high risk, compared to local treatment. Susan Just to clarify - I was nebulizing through a nasal canula - which were the instruction from SinuNeb - not my doc. I realize this still goes into the lungs. > Just to clarify - I was nebulizing through a nasal canula - which were > the instruction from SinuNeb - not my doc. I realize this still goes > into the lungs. Right, which raised the risk enormously. What's more efficient than lung tissue for distributing a drug systemically? Susan Rick, I have posted my Allergic Fungal Sinusitis Story on my website: www.sinusgroup.org Go to the menu item Sinusitis on the left hand side of the page and look for the sub-category "Stories About Sinusitis". I am looking for more people to "write their story". If anyone is interested I will post it on my site. Lauren www.sinusgroup.org > Rick, > [quoted text clipped - 5 lines] > I am looking for more people to "write their story". If anyone is > interested I will post it on my site. Could you post it here, too, since this is where you posted your warnings about the drug and your experience? That would reach the most readers. Susan On 3/19/06 9:07 AM, in article 1142788066.131009.238590@u72g2000cwu.googlegroups.com, "lrhone11" <lauren@rhone.us> wrote: > www.sinusgroup.org It is unfortunate that this web site advertises products that the medical profession advises against such as colloidal silver. > On 3/19/06 9:07 AM, in article > 1142788066.131009.238590@u72g2000cwu.googlegroups.com, "lrhone11" [quoted text clipped - 4 lines] > It is unfortunate that this web site advertises products that the medical > profession advises against such as colloidal silver. What a shock. Susan On 3/19/06 7:34 AM, in article 485c0hFhqgonU2@individual.net, "Susan" <nevermind@nomail.com> wrote: > Right, which raised the risk enormously. What's more efficient than > lung tissue for distributing a drug systemically? Not so much that, but the size of the particles are DESIGNED to go to the lungs. On 3/19/06 5:56 AM, in article 48568aFg8g8hU3@individual.net, "Susan" <nevermind@nomail.com> wrote: > x-no-archive: yes > [quoted text clipped - 6 lines] > > Susan In the original Mayo method it was severely diluted and given by nasal irrigation. This, at Mayo, none into the lungs. > On 3/19/06 5:56 AM, in article 48568aFg8g8hU3@individual.net, "Susan" > <nevermind@nomail.com> wrote: [quoted text clipped - 11 lines] > In the original Mayo method it was severely diluted and given by nasal > irrigation. This, at Mayo, none into the lungs. Even so, a few Mayo patients developed systemic symptoms from irrigation with gentamicin. I *shudder* to think what would happen if zillions of patients started inhaling gentamicin into their lungs via SinuNeb.  SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. > Even so, a few Mayo patients developed systemic symptoms from irrigation > with gentamicin. I *shudder* to think what would happen if zillions of > patients started inhaling gentamicin into their lungs via SinuNeb. I'm always amazed when someone has undertaken medical treatment without looking it up first and educating herself about the risks. The OP still isn't clear on what her treatment regimen consisted of. It boggles the mind. Susan > x-no-archive: yes > [quoted text clipped - 5 lines] > I'm always amazed when someone has undertaken medical treatment without > looking it up first and educating herself about the risks. A representative for SinuNeb once told me proudly that his company can create a nebulized form of nearly *any* prescription medication. But as I'm sure you're aware, the data on safety and effectiveness that a pharma company submits to the FDA to get approval for their drug usually doesn't cover its nebulization--usually either its oral or intravenous forms. The nebulized formulations SinuNeb is creating have never gotten FDA approval for safety and effectiveness. And if you want an example of the difference, compare the side effects of oral N-acetyl-cysteine vs. MucoMyst, a nebulized form that existed long before SinuNeb. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. > Hi folks, > [quoted text clipped - 8 lines] > it Fed Ex (it has to be refrigerated) and I got it yesterday. What I > got was four bottles of gatorade-looking solution, and a bulb syringe. Sounds about right. I've been to the Mayo Clinic recently, and now they've backed off from their original claims that antifungals can cure most sinusitis. They now claim it only works for a specific "subpopulation"--i.e. a minority of patients. > Here (finally!) are my questions (or points for discussion, at least): > [quoted text clipped - 3 lines] > 2. In a general sense, what are your experiences with using this > medicine? I couldn't tolerate it. It contains no saline, so it was very irritating to my nose, caused me much *more* nasal congestion, and I had to give it up. I'm going to try Sporonox irrigation instead. Sporonox contains saline so it should be less irritating. > 3. Is it helping? (The contact at the drug company said some > people get instant relief, some take 3 months for it to work.) The Mayo Clinic doesn't claim that anyone can get instant relief. They claim that it takes 3 months for any improvement. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. >Mayo Clinic recently, and now they've backed off from >their original claims that antifungals can cure most sinusitis. They >now claim it only works for a specific "subpopulation"--i.e. a minority >of patients. Steven, If you have the time, could you possibly post a summary of your overall impressions of Mayo? Thanks, Don Susan and Dr. Grossan, Why are you saying such mean things about me and my website? What have I ever done to you? If you don't know what I am talking about I would be happy to quote the sentences. Can't you just leave me alone? I am a human being with feelings. I am not perfect and have never claimed to be. I work very hard trying to do the right thing. I am a mom to 2 children, I rescue dogs in my spare time, I volunteer in my community to help uneducated and low income families, I am a wife and I am daughter. I am also a recovering alcoholic, and incest survivor. Perhaps now that you know more about me you guys can lay off with the mean and hurtful comments because there is a person behind these messages on this usenet board. You can't judge me without walking in my shoes. Susan - why don't you archive your messages? You seem to be so knowledgable about this subject I would think that you would want them archived to help other people. > Susan and Dr. Grossan, > > Why are you saying such mean things about me and my website? No one said any mean things, just factual observations. You forgot to accuse Don of victimizing you, too. > What have > I ever done to you? If you don't know what I am talking about I would > be happy to quote the sentences. Can't you just leave me alone? Not as long as you keep attempting to redirect traffic from this non-commercial site to one with links to commercial products and not very good information about sinusitis, all the while endeavoring to discredit medical treatments for chronic sinusitis. I am > a human being with feelings. Sadly, you're a supposedly informative sinusitis sufferer who doesn't even know what her previous treatment consisted of. IMO, that makes you an extremely poor source of information about sinusitis. I am not perfect and have never claimed > to be. I work very hard trying to do the right thing. I am a mom to 2 > children, I rescue dogs in my spare time, I volunteer in my community > to help uneducated and low income families, I am a wife and I am > daughter. I am also a recovering alcoholic, and incest survivor. Omigosh, is there any way in which you *haven't* been victimized?? > Perhaps now that you know more about me you guys can lay off with the > mean and hurtful comments because there is a person behind these > messages on this usenet board. You can't judge me without walking in > my shoes. No way we lay off of commercial posts here, or very bad sinusitis information. I will promise that what I post will be true and accurate. > Susan - why don't you archive your messages? You seem to be so > knowledgable about this subject I would think that you would want them > archived to help other people. My posting habits are none of your business. Susan > Susan and Dr. Grossan, > [quoted text clipped - 14 lines] > knowledgable about this subject I would think that you would want them > archived to help other people. If anyone has said anything inaccurate about your website, please address it. Susan >Susan and Dr. Grossan, > [quoted text clipped - 6 lines] >to help uneducated and low income families, I am a wife and I am >daughter. I am also a recovering alcoholic, and incest survivor. Your web site is a huge accomplishment for you and I know that everyone would be congratulating you wishing you the best of luck on a personal basis. God bless you in your personal efforts. I know though, that you also would not want anyone to make any special allowances either in the areas of too much or too overt advertising on this newsgroup (regardless of by whom) ...... >Perhaps now that you know more about me you guys can lay off with the >mean and hurtful comments because there is a person behind these [quoted text clipped - 4 lines] >knowledgable about this subject I would think that you would want them >archived to help other people. > Susan and Dr. Grossan, > [quoted text clipped - 14 lines] > knowledgable about this subject I would think that you would want them > archived to help other people. Usenet is a harsh place. You either have to learn to deal with it or leave. > Susan and Dr. Grossan, > [quoted text clipped - 14 lines] > knowledgable about this subject I would think that you would want them > archived to help other people. Ok so I went to your site to see how great it was and had a laugh... The article you wrote "Internet Trolls on Sinus Message Boards" was way off. There is an occasional troll (remember paminifarn?) but right now you are about the closest we have. > Susan and Dr. Grossan, > [quoted text clipped - 10 lines] > messages on this usenet board. You can't judge me without walking in > my shoes. I am sorry that you have had a difficult time, but that should not innoculate you against legitimate critisism. In fact, bringing up such matters seems to be a gratuitous attempt to do just that. Good and accurate information should be source-neutral. > Susan and Dr. Grossan, > [quoted text clipped - 14 lines] > knowledgable about this subject I would think that you would want them > archived to help other people. You just cannot start a website over a such a serious matter like sinusitis as you do, certainly not with the adds. Now it looks like your intention is to make money out off people's missery. If you want to share usefull information with other people in the world, there are many other ways to do it without the adds etc. I personally am not a specialist on sinusitis, only a sufferer too, but i read always the newsgroup with a lot of interest. So don't ask me for my logs...lol! ok > Susan and Dr. Grossan, > > Why are you saying such mean things about me and my website? What have > I ever done to you? I think you're trying to do a good job, and I congratulate you on all the good things you've done with your life. There's nothing wrong with taking commercial advertising. Lots of legitimate websites do, such as www.rxlist.com. But those websites take advertisements from reputable companies with proven prescription medications that have passed FDA tests for safety and effectiveness. When you allow advertising on your website, you are associating your good name and good reputation with what they're selling. Even if you put a disclaimer on your website to the contrary, that's the impression you're leaving. For example, if you accepted advertising from Bayer for Avelox, I don't think anybody here would complain--not even Dr. Grossan--because Avelox has been approved by the FDA for treating sinus infections. That's the difference. So just be sure that you can stand behind each of the products and services being advertised on your website. It's your reputation that is at stake. SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. Steven, I appreciate the feedback and I completely agree with you. I am trying to figure out how to "filter" some of my ads so they don't show the remedies that are on www.quackwatch.com like colloidal silver. Google rotates their ads and at the moment I don't have "control" over them.....I don't have control because I haven't figured out how to control them - it is on my "to do" list. The other dilemna that I have is that I have to have a web page with outbound links on it to other websites. What this does is give me a higher ranking on the search engines. I don't believe in this methodology however in order for me to get ranked I have to have inbound links to my website and outbound links to other websites. I am thinking about making my outbound links completely unrelated to health or sinuses instead of trying to make them similiar. However I need to find out if that will hurt my google ranking.....the whole Search Engine Optimization thing is bizarre and I believe that i hvae to conform to some set of rules to make it happen - which may be in conflict with my mission. I feel like I am between a rock and hard place. I would concentrate on getting your content in order and getting some 'grassroots' members before you go 'mainstream'. Think of your site as a restaurant, and the Search Engines as advertising. You wouldn't want to launch a huge advertising campaign before your restaurant was ready for 'primetime'. If someone hits your site once, and isn't amazed by the content and community, then they may not give you another chance for a first impression. If I were you in your shoes, i'd just pull the ads off the site for the time being. From what i've witnessed, they've become more of a distraction than they're currently worth to you. Focus on continuing to build content. Find some trustworthy people that you feel can also submit quality news/information, and let them help you out. A good thing about your type of content is that it is mostly 'timeless'. That is, content created today will still hold much value a year from now. Some types of content can lose value over time, and it puts a heavy burden on the content creators. Also, a strong forum community can be the backbone of a site such as yours. Steven's advice on the adverts is true. However, it would be more difficult for you now to secure a sponsored ad from a bigger corporation. However, if you let your site grow and mature first, you'll have a much better chance. Tyler I just pulled the ads. I have so much content that I want to add that I think would be very useful for anyone who has a chronic sinus problem. Should I pull the web links off on my link exchange page? |
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