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Medical Forum / Diseases and Disorders / Sinusitis / March 2006Ampho-B and Allergic Fungal Sinusitis
Ok - let me try this one more time. Some of you have read my experience with Ampho-B. I was given it to nebulize full strength by my ENT. I got really sick from it and it took forever to recover. There has been much criticism of me and my posts and I my intelligence and lack of knowledge has been attacked repeatedly. However, I need to ask a serious question here and I am asking for some civil and legitimate and useful responses. I am not a healthcare professional I am a patient. When I was given the SinuNeb and ampho b to nebulize I made the huge and incorrect assumption that my physcian new what he was doing and that I could trust him. The ampho b vials were not labeled with any label other than "ampho-B", there was no "strenght" on them because them came from the sinuneb pharmacy. Again I trusted my doctor who works in a huge prestigious research facility in Chicago. What should I have done differently in this case? I am trying to gain some knowledge for me personally going forward so that I if this ever happens to me again and I can approach it differently. You also have to remember that I was sick as a dog at the time and had little energy to work to research my problem. Lauren > Ok - let me try this one more time. Some of you have read my > experience with Ampho-B. I was given it to nebulize full strength by [quoted text clipped - 3 lines] > ask a serious question here and I am asking for some civil and > legitimate and useful responses. No one here has attacked you, which leads to... First helpful hint; stop your adoption of the role of victim. I'm truly sorry you've suffered hardships, but so have we all, including debilitating sinusitis, that's why we're here. It would help keep us all on an even footing if you were to consistently avoid redirecting readers here to your site (though having the url in your sig line is acceptable usenet protocol) or urging folks to click on your ads. > I am not a healthcare professional I am a patient. When I was given > the SinuNeb and ampho b to nebulize I made the huge and incorrect [quoted text clipped - 10 lines] > You also have to remember that I was sick as a dog at the time and had > little energy to work to research my problem. We've all been terribly sick with sinusitis when seeking treatment, why else would we have done so? You're not at all unique in that regard. In fact, I was already disabled for years before sinusitis debilitated me further, but you won't find me whining about it here. What you should have done (and should do with any proposed treatment in the future) was research the medication on a site like rxlist.com or in a print PDR. You should have checked Medline (www.nih.nlm.gov, then pubmed) for any studies of the treatment regimen your doctor prescribed and adverse events related to it. You should have paid especially careful attention to the absence of any studies using it in the manner prescribed to you, as well as the warnings and contraindications listed for its use even in a more conventional manner. I often find contraindications for treatment I'm rx'ed that the prescribing doc isn't aware of. Don't ever take even the best doctor's word for anything is how I operate; trust but verify. The only one who's going to live with the consequences of your treatment choices is you. Just my $.02; before setting yourself up in business as a central source of information for sinusitis sufferers, you should have mastered the ability to do all the above. Otherwise, you run the risk of harming unsuspecting others, much as you claim to have been harmed yourself. Susan Do you find it difficult to have conversations with your physicians when you are in a situation where you think that they are making a mistake? I have found even when using diplomatic efforts with physicians it is hard to have a conversation with some of them because they become so defensive. My experience with ampho-b was the first experience I have ever had in which I had a dangerous outcome. I was naive going into the treatment because I really trusted my doc "to do no harm". I am now in a different position and as a result I am a stronger advocate for myself and my children. I think we could all learn more about how to be a better advocate for ourselves and our family. For instance, through my ampho-b experience I learned I have a sensitivity to inhaled asthma medications. I took my daughter to the ER last week and as it turned out she had pneumonia. The ER staff was giving her Albuterol breathing treatments which I OK'd and her pulse ox was stable. Then they gave her a 3rd treatment and her pulse ox plunged. I ran out of the room asking what they gave her and they added Atrovent to the Albuterol without telling me. As a result she had a horrible reaction to it and had to spend two days in the hospital. They asked me if she was allergic to anything but they never asked me if I had any sensitivities or allergies to medication. I am not whining here or being a victim - I am just saying this because I personally learned a lot and I have figured out that I have to be a "control freak" when it comes to any medication that is put in my mouth or my children's. Lauren, if you could quote a bit of what you're responding to, then reply below it, it would be easier to follow the conversation. It's not always clear what you're replying to this way. > Do you find it difficult to have conversations with your physicians > when you are in a situation where you think that they are making a > mistake? I have found even when using diplomatic efforts with > physicians it is hard to have a conversation with some of them because > they become so defensive. Yes, that's commonplace. Often it will help to put the concern into a question that defers, such as, "what do you think about the research that says...?" A physician who is more concerned about being right or deferred to or who makes claims that run counter to what you've found in the literature is a danger to your health or will need constant egolingus. Shop carefully for a doctor who will be a partner, and cultivate the relationship, then choose your battles carefully. Sometimes just nod, then go home and ignore what you know to be bad advice based upon your experience or your research. > My experience with ampho-b was the first experience I have ever had in > which I had a dangerous outcome. I was naive going into the treatment > because I really trusted my doc "to do no harm". I am now in a > different position and as a result I am a stronger advocate for myself > and my children. You may not be that lucky in the future; listen to all advice, confirm everything with research first. > I think we could all learn more about how to be a better advocate for > ourselves and our family. I was a professional advocate before I became ill, so I have more of an issue with learning how to tone it down. > For instance, through my ampho-b experience > I learned I have a sensitivity to inhaled asthma medications. I took > my daughter to the ER last week and as it turned out she had pneumonia. > The ER staff was giving her Albuterol breathing treatments which I [quoted text clipped - 8 lines] > "control freak" when it comes to any medication that is put in my mouth > or my children's. Anything potent enough to help is potent enough to do harm; it behooves us to know what we're getting beforehand. Unfortunately, there are emergency situations in which that's not possible. I don't regard the above as a victim statement, just an informative account of a harrowing medical experience. Susan > x-no-archive: yes > [quoted text clipped - 45 lines] > prescribed to you, as well as the warnings and contraindications listed > for its use even in a more conventional manner. Then what? When it comes to treating sinusitis, even respected institutions like the Cleveland Clinic and Mayo Clinic are now giving their patients experimental drugs *before completing* controlled clinical trials. (Have you ever heard of a controlled clinical trial evaluating gentamicin irrigation?) AFAIK, Mayo has not done any controlled studies comparing the efficacy and safety and side effect profiles of ampho irrigation vs. Sporanox irrigation or other antifungal irrigation. It's physician's discretion. My own ENT refuses to prescribe antibiotic irrigation because there haven't been controlled clinical trials of it. But that hasn't stopped the ENTs at Mayo or Cleveland Clinic. And many, many physicians are prescribing SinuNeb nebulized formulations of prescription meds that were NEVER approved by the FDA for that use. But then, AFAIK, there has only been ONE, exactly ONE, controlled study to show the effectiveness of FESS surgery either. And many FESS operations were performed around the world. before that study was concluded. Finally, some ENTs are starting to embrace a "GERD connection" and have actually recommended funduplication surgery to their sinus patients. Even though there isn't the slightest scientific evidence that fixing your esophagus is going to fix your sinuses. With sinusitis, we've run off the end of what has been scientifically proven long ago. We're all in experimental territory now. > I often find > contraindications for treatment I'm rx'ed that the prescribing doc isn't > aware of. Don't ever take even the best doctor's word for anything is > how I operate; trust but verify. For some reason, irrigation and nebulization seem to be doing an end-run around the usual FDA requirements for proving safety and effectiveness.  SignatureSteven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net Remove the NOSPAM before replying to me. > Then what? Fair question. In my case, I then opt for the treatment with the least likelihood for harm balanced against the greatest likelihood of benefit, in my own estimation. This is important to me especially because I tend to be in the 1/10th of a percent of folks who get adverse reactions docs don't even know about. :-/ Or I decide whether to proceed with the treatment in question or to continue doctor shopping. Or I just ask a lot more pointed questions before making my assessment. > When it comes to treating sinusitis, even respected institutions like > the Cleveland Clinic and Mayo Clinic are now giving their patients [quoted text clipped - 6 lines] > because there haven't been controlled clinical trials of it. But that > hasn't stopped the ENTs at Mayo or Cleveland Clinic. I don't respect Mayo any more than any other place, given their lousy track record with CFS and Lyme, as examples. I've been screwed around medically at academic medical centers and been endangered by them more than anywhere else. In cases like this, one has to decide whether to trust the clinic's case reports as accurate and weigh that against what's known about the drugs used in more traditional fashion. I'd want to see their internal case reports, sans identifying info. > And many, many physicians are prescribing SinuNeb nebulized formulations > of prescription meds that were NEVER approved by the FDA for that use. Which I wouldn't touch with a ten foot pole. I do consider anecdotal reports if I see a trend, too, but I don't make decisions on them alone. Anecdote is what led to my child's cure from 3 1/5 years of hell with tick borne diseases; but I did a lot of homework on the treatment in question before proposing it to the doc. > But then, AFAIK, there has only been ONE, exactly ONE, controlled study > to show the effectiveness of FESS surgery either. And many FESS > operations were performed around the world. before that study was > concluded. I so rarely see posts from successful FESS patients, but I guess if they're successful, they don't post here. > Finally, some ENTs are starting to embrace a "GERD connection" and have > actually recommended funduplication surgery to their sinus patients. > Even though there isn't the slightest scientific evidence that fixing > your esophagus is going to fix your sinuses. Docs get paid for procedures, handsomely. Medicine has become very procedure oriented driven by the economics. > With sinusitis, we've run off the end of what has been scientifically > proven long ago. We're all in experimental territory now. Which makes it even more important for the patient to do her own research and be self informed about potential risks vs. benefits. Frankly, I've been in a number of FDA protocols, and I'd never use an experimental tx again unless death were imminent; I'm still paying for what researchers assured me wasn't likely to happen during "(mis)informed consent." > For some reason, irrigation and nebulization seem to be doing an end-run > around the usual FDA requirements for proving safety and effectiveness. Yer not kidding. I thought chronic fatigue syndrome had cornered the market on opportunistic entrepreneurs and quack cures til I discovered the chronic sinusitis underground economy. Susan For some reason, irrigation and nebulization seem to be doing an end-run > around the usual FDA requirements for proving safety and effectiveness. What can I do to stop this? Who do I write and who do I complain to? > For some reason, irrigation and nebulization seem to be doing an > end-run > >>around the usual FDA requirements for proving safety and effectiveness. > > What can I do to stop this? Who do I write and who do I complain to? IIRC, the FDA has an adverse event reporting page on their website. In your case, the attorney general in your state (and the home state of the nebulized med providers) may also be interested, since the nebulized form has not been studied and found safe and your results were potentially life threatening and unpredicted. You might also report the prescribing doctor to the medical licensing agency in your state (in NY it's the Dept. of Education). I'd pursue it to protect others and to right a wrong done to me, if I were you. Susan >For some reason, irrigation and nebulization seem to be doing an >end-run >> around the usual FDA requirements for proving safety and effectiveness. > >What can I do to stop this? Who do I write and who do I complain to? The only thing they pay any attention to is a law suit. If you were adversely affectd (I think it was you) I would see if I could find a lawyer to take it on contingency. Then sue the doctor, the seller, everyone..... I will be pursuing it. I feel as if I was taken advantage of among many other things. > Ok - let me try this one more time. Some of you have read my > experience with Ampho-B. I was given it to nebulize full strength by [quoted text clipped - 11 lines] > the sinuneb pharmacy. Again I trusted my doctor who works in a huge > prestigious research facility in Chicago. Most of us have made similar mistakes (or our parents did) which is why we are chonically ill now. > What should I have done differently in this case? Don't trust doctors; don't trust pharmacies & pharma co's; Take responsibility for your own healthcare & research the risks & benefits of any treatments yourself beforehand. Here is a good place to start. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi If you do enough research you may conclude as I have that chronic sinusitis is mainly iatrogenic and is caused by Antibiotics. But keep in mind that many of the research studies are backed by special interests and therefore suspect. Woody I am trying to gain > some knowledge for me personally going forward so that I if this ever > happens to me again and I can approach it differently. [quoted text clipped - 3 lines] > > Lauren
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