Medical Forum / Diseases and Disorders / Sinusitis / August 2005
Chronic sinus infection thought to be tissue issue, Mayo Clinic scientists show it's snot
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afdr9lk - 29 Jul 2005 04:51 GMT http://www.eurekalert.org/pub_releases/2005-07/mc-csi072805.php
MS - 29 Jul 2005 09:42 GMT > http://www.eurekalert.org/pub_releases/2005-07/mc-csi072805.php Ha! Good pun! (in thread title) ;-)
And interesting article. One wonders though--in order to create so much bad mucous, don't the mucous membranes also have to be screwed up? So could the problem really "only" be the mucous, and not the mucous membrane. the tissue discussed?
kathywb2001@yahoo.com - 01 Aug 2005 18:56 GMT So does anyone think this may be possibly why so many of us blow out all of this snot and it doesn't show on CT scans?
Kathy
Don Brady - 01 Aug 2005 19:09 GMT >So does anyone think this may be possibly why so many of us blow out >all of this snot and it doesn't show on CT scans? Personally, I doubt it has much practial signficance at this time.
Just another Mayo research hypothesis which will help them get more research grants..
By the way, how does it fit in with their last grand theory?
Steven L. - 01 Aug 2005 19:57 GMT >>So does anyone think this may be possibly why so many of us blow out >>all of this snot and it doesn't show on CT scans? [quoted text clipped - 5 lines] > > By the way, how does it fit in with their last grand theory? Which one? The Allergic Fungal Sinusitis Theory or the Biofilm Theory?
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Don Brady - 01 Aug 2005 20:15 GMT They certainly do have a magnificent publicity machine, don't they?
Their ability to get these arcane theories translated into layman's language and out into the popular media is amazing.....
kathywb2001@yahoo.com - 01 Aug 2005 20:40 GMT So why would anyone want to go to them for chronic sinusitis? I went to Mayo, Jacksonville several years ago. I saw a very good allergy doctor there who was the first to do endoscopy and saw the purulent drainage from my sinuses and suggest sinusitis. He put me on antibiotics and I started coughing up the stuff for months. I went back later and saw a pulmonologist and an ENT, who both looked at CT scans and said there was nothing wrong with my sinuses or lungs. I later had surgery and did have chronic ethmoid sinusitis. I personally believe noone really has a clue as to what causes it or how to treat it.
Don Brady - 01 Aug 2005 22:54 GMT >So why would anyone want to go to them for chronic sinusitis? I went >to Mayo, Jacksonville several years ago. I saw a very good allergy [quoted text clipped - 6 lines] >believe noone really has a clue as to what causes it or how to treat >it. They are very conservative about surgery at Mayo for some reason.
Steven L. - 02 Aug 2005 16:23 GMT >>So why would anyone want to go to them for chronic sinusitis? I went >>to Mayo, Jacksonville several years ago. I saw a very good allergy [quoted text clipped - 8 lines] > > They are very conservative about surgery at Mayo for some reason. Then I may not go there after all.
I am convinced there are lingering pockets of infection in my sinuses--maybe even in the frontals or sphenoids.
I want to find the most *aggressive* surgeons in America. Any ideas?
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Don Brady - 02 Aug 2005 18:56 GMT >> They are very conservative about surgery at Mayo for some reason. > [quoted text clipped - 5 lines] >I want to find the most *aggressive* surgeons in America. >Any ideas? U. of Penn. or many surgeons trained there - after all they believe in removing more bone. http://www.uphs.upenn.edu/news/News_Releases/dec00/Sinusitis.shtml
I know that you saw one trained there and he for one did not currently use that approach though.
I think there are quite a few who do.
You could call Dr. Kennedy's office and ask for the name of some who do.....
kathywb2001@yahoo.com - 03 Aug 2005 00:09 GMT I sent my scans to Dr. Kennedy and I think he did look at them. I called several times and finally the nurse told me that he said I wasn't a candidate for surgery at the time. I finally got the scans back after 2 months. It might be worth a call to his office to see if he or someone else will look at the scans before you go back. (One scan even showed possible old bone infection in the ethmoids; From what I read about him and his work, he even said that the infection didn't have to be active to cause a problem.) But anyway, I saved the money for a trip up there. I still think there is something going on in my ethmoids. I did better on the IV antibiotics, but have gone downhill after being off. The IV Vfend (antifungal) didn't help at all, so I don't know what that does to the allergic fungal sinusitis theory. I did have mold isolated from sinuses on 2 occassions, but I'm not sure the antifungals are the answer. I've been using Ketek with some success with a bactrim nasal spray.
Good luck! Kathyw
Steven L. - 03 Aug 2005 02:19 GMT > I sent my scans to Dr. Kennedy and I think he did look at them. I > called several times and finally the nurse told me that he said I [quoted text clipped - 11 lines] > not sure the antifungals are the answer. I've been using Ketek with > some success with a bactrim nasal spray. Have you found Ketek to work better than other antibiotics?
My ENT gave me some Ketek to try. But I'm beginning to wonder if I should bother, given how many other antibiotics have failed me.
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kathywb2001@yahoo.com - 03 Aug 2005 04:07 GMT The Ketek has helped me more than anything I've tried. I took two rounds of it 2 tablets a day for 5 days twice in June. Since then my PC doctor has me trying a maintenance of 1 a day. I'm not really thrilled about taking it long term, but it seems to be the only thing that keeps me half way functional. I might add that he now thinks that I have an autoimmune reaction to the coagulase negative staph that I also keep culturing out of my sinuses. This has been discussed here before, and I know it is controversial as it is a part of the normal flora, but as someone else pointed out, the sinuses are supposed to be sterile and there are some studies that suggest that it can act as a pathogen in chronic sinusitis. To be honest, I really don't know. I've had all this stuff cultured out, yet my sinuses look OK, but I still either have this tremendous drainage (mostly white to jelly-like now, but has been dark brown in the past) or when it doesn't drain I have tremendous pain and pressure. I'm using the bactrim spray also because I'm not sure I'm rid of the Stenotrophomonas. That's why I warn people not to take antibiotics if their symtpoms clear up without them. I'm in a vicious cycle now of having to take them to stay functional, but then run the risk of getting more resistant infections, plus I then have to take antifungals to get rid of the yeast. I don't know how much more my liver can take.
If you do take the Ketek, be aware that it can cause blurred vision. I havn't been bothered with that especially with one a day.
Kathyw
MS - 04 Aug 2005 05:48 GMT I took Ketek once, not sure if it helped. But it was only prescribed for me for five days (very common with this, like Zpac, it comes in a five day "pac"). I think chronic sinusitis probably needs a longer dosage, no matter what the antibiotic.
From what I've read, however, it is supposed to be very good. There is supposed to be something about its make-up, which would make it difficult for bacteria to become resistant to it. Sinusitis is listed as one if its indications. Otherwise, I think very similar to macrolides, like azithromycin (zithromax, zpac).
Speaking of the latter, I came across an article saying that some doctors prescribe long-term azithromycin to cystic fibrosis patients. Not only for its bactericidal properties (which I assume would wane over time with long-term usage, resistance, etc.), but that it has a good anti-inflammatory effect, without the negative effects of oral steroids or NSAIDS. I wonder if that has even been tried for chronic sinusitis? (I read in another article about some research showing genetic similarities between cystic fibrosis and chronic sinusitis patients.)
Without insurance that (long term usage of azithromycin) would be extremely expensive. And I wonder if insurance companies would cover such an "off-label" use of the medicine, when it is usually only prescribed for five days.
> The Ketek has helped me more than anything I've tried. I took two > rounds of it 2 tablets a day for 5 days twice in June. Since then my [quoted text clipped - 22 lines] > > Kathyw kathywb2001@yahoo.com - 05 Aug 2005 04:21 GMT > I took Ketek once, I think chronic sinusitis probably needs a longer dosage, no matter what the antibiotic. Yes, I agree.
> From what I've read, however, it is supposed to be very good. There is > supposed to be something about its make-up, which would make it difficult > for bacteria to become resistant to it. Sinusitis is listed as one if its > indications. Otherwise, I think very similar to macrolides, like > azithromycin (zithromax, zpac). Yes, I've read that too. The only thing that I'm concerned about is that it doesn't cover very many gram negative bacteria, so there is a possibility that some nasty gram negative bacteria would grow that are very hard to get rid of.
> Speaking of the latter, I came across an article saying that some doctors > prescribe long-term azithromycin to cystic fibrosis patients. Not only for [quoted text clipped - 4 lines] > about some research showing genetic similarities between cystic fibrosis and > chronic sinusitis patients.) There are some studies that show that patients with chronic sinusitis have a varient of the cystic fibrosis gene without the lung involvement. I believe that the Ketek is supposed to be better than azithromycin for sinusitis.
> Without insurance that (long term usage of azithromycin) would be extremely > expensive. And I wonder if insurance companies would cover such an > "off-label" use of the medicine, when it is usually only prescribed for five > days. I've been very lucky with insurance. Most would cover, I think, if the doctor diagnoses chronic sinusitis.
MS - 05 Aug 2005 16:01 GMT > There are some studies that show that patients with chronic sinusitis > have a varient of the cystic fibrosis gene without the lung > involvement. Yes, that is very interesting. Since CF involves overly thick mucous, I wondered if there was some connection.
What are all the treatments for CF? I wonder if any of them could help us as well. If they come up with some kind of major breakthrough for CF, I hope it can be tried on us as well.
>I believe that the Ketek is supposed to be better than >azithromycin for sinusitis. Well, of course, what is "better" for one case, might not be for another, depending on what micro-organisms one is infected with, etc. Ketek is newer, therefore doesn't have the same resistance developed to it among bacteria, and is supposed to be designed so that resistance is less likely to develop.
The problem with either of these is that most docs prescribe them only in the five day "pacs" (a way for pharma companies to charge a lot for a few pills), which is usually not sufficient for chronic sinusitis.
As I mentioned in the prior post though, the main reason some docs are prescribing long term usage of azithromycin to cystic fibrosis patients, is not for its antibacterial properties, but that it also has anti-inflammatory properties. I don't know if Ketek has the same anti-inflammatory properties or not.
Harry - 05 Aug 2005 16:52 GMT Hello, Let us assume a sinus condition started way back when; of course the first thing we do is go get an antibiotic to cure the "infection": INFECTION: First there is irritation; Second there is swelling; Third there is blockage; Fourth there is infection; Or four strikes and youare out (Women's baseball). Now we know sinus trouble is caused by the digestive system being out of order. We also know antibiotics totally destroy the digestive system (temporarily MAYBE). The Candida just loves this and proliferates . . . in your nose too . . . Then after years and years of this abuse, you wonder why your sinus trouble has gotten increasingly worse over the years, and are finally resorting to even surgery. Get the picture? Know thine enemy, and he is you, and what you are putting into your stomach and what youarenot putting into your stomach. If you put bad gas into your car, and you start getting "motor trouble" because of it, of course youare going to blame it on the motor and the mechanic will be more than happy to oblige you - you know the rest of the story, and itis no different with doctors, as they too are in it for the money, honey.
>> There are some studies that show that patients with chronic sinusitis >> have a varient of the cystic fibrosis gene without the lung [quoted text clipped - 24 lines] >properties. I don't know if Ketek has the same anti-inflammatory properties >or not.
Don Brady - 03 Aug 2005 03:33 GMT >I sent my scans to Dr. Kennedy and I think he did look at them That was a very good move potentially even though he did not follow up for you in this case. .
>called several times and finally the nurse told me that he said I >wasn't a candidate for surgery at the time. I finally got the scans [quoted text clipped - 13 lines] >Good luck! >Kathyw afdr9lk - 03 Aug 2005 03:41 GMT > I sent my scans to Dr. Kennedy and I think he did look at them. I > called several times and finally the nurse told me that he said I [quoted text clipped - 14 lines] > Good luck! > Kathyw How long were you on the IV antibiotic?
kathywb2001@yahoo.com - 03 Aug 2005 04:14 GMT I was on Timentin for 2 months.
MS - 04 Aug 2005 05:38 GMT > I've been using Ketek with > some success with a bactrim nasal spray. > > Good luck! > Kathyw Bactrim nasal spray? Is that available? Or home-made, crushing a Bactrim tablet in saline? (That would get excipients up your nose as well as the Bactrim.)
kathywb2001@yahoo.com - 04 Aug 2005 13:53 GMT The bactrim is a nasal spray that my current ENT prescribed through a compounding pharmacy.
MS - 05 Aug 2005 15:51 GMT > The bactrim is a nasal spray that my current ENT prescribed through a > compounding pharmacy. Does it work well in getting rid of infection?
kathywb2001@yahoo.com - 06 Aug 2005 02:50 GMT I guess it depends upon what kind of infection you have.
MS - 04 Aug 2005 05:35 GMT > I want to find the most *aggressive* surgeons in America. > Any ideas? Are you kidding, Steven? Too much surgery can make one's condition much worse.
If you see an allergist after having surgery, they'll tell you the surgery is the cause of your problem.
Didn't you have surgery before, Steven? I thought you had.
It certainly is no cure-all.
Perhaps you could get the info from Don to see his surgeon, Dr. Kennedy, one of the most famous sinus surgeons. Get more than one opinion though, before deciding on surgery.
MS - 04 Aug 2005 05:31 GMT >..... I >later had surgery and did have chronic ethmoid sinusitis. I personally > believe noone really has a clue as to what causes it or how to treat > it. Unfortunately that seems to be the case. It's all guesswork. Medical science really knows little about chronic sinusitis. I don't think much research has been done in that area. Not usually a "killer disease" like heart attack or cancer, but one that makes millions of people miserable throughout the world. I hope more research is done in this area. Perhaps with the advent of more genetic study, and gene-based medicine, perhaps with stem cells, there will be a breakthrough in this area. Perhaps only wishful thinking, but I sure wish more research would go into this condition.
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