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Medical Forum / Diseases and Disorders / Sinusitis / June 2006Unrelenting since November
Since last November, basically one long infection resistant to several types of antibiotics but finally reactive to doxycycline ! However, only when on it. ENT keeps coming up with clear CT scans , despite worsening infections. I have had full FESS surgery, ( total abliteration of ethmoids, all ostia opened) 9 years ago, and septum fixed in an earlier surgery. Sick 1/2 of every year, negative for allergies. Just had radio-frequency turbinatectomy right side for some improved air flow. The resultant trauma to mucosal has me all the more infected even though I am on the antibiotics. ( pre-op culture reacted to doxycycline). I am asking internist for referral to true immunologist referral ---skilled in disorders etc. Will pursue again allergies. Long and short of it : I dont clear infections medically or surgically despite nice looking CT scans. Skilled ENT ( surgically) but gets very thin skinned when I come in armed with Dr . David Kennedy et al books and papers suggestive of more aggresive and keen follow up. No offense to dos reading this, I am sick of doctors. Literally. Part of the downward spiral results from inadequate and slow response by docs to prescribe appropriate antibiotics and long enough to clear infections and let tissues restore. However, to this ENTs credit, we have tried lots of things. Antibiotic rinses; amphocerin ( I think more prophylactic if I ever get out of ths acute cycle). I have hypothyroid and am adequatley treated with thyroid meds. A paternal 1st cousin just informed me he was diagnosed with an immune deficiency. Clue? I am pursuing. Worst year for sinus and colds I have had in ten years --------and I have had some BAD years !!! >Since last November, basically one long infection resistant to several >types of antibiotics but finally reactive to doxycycline ! However, [quoted text clipped - 20 lines] >informed me he was diagnosed with an immune deficiency. Clue? I am >pursuing. Worst year for sinus and colds I have had in ten years Yes my guess is that has a systemic origin in your case. You could try Mayo for a really thorough investigation of immune status ...... >--------and I have had some BAD years !!! After many years of similar problems, I was found to have an IgG subset 1 and 3 deficiency. Well, it explains the problem, but no easy solution. I'm not interested in intravenous gamma globulin, but what has helped me considerably is low dose biaxin. I have an article in Chest that explains it. My older daughter began to develop the same symptoms, and was found to have IgA deficiency. Now my younger daughter has a sinus infection that just won't go: everytime we stop the antibiotics, it's back. Her immunoglobulins are pending. Recurrent sinus infections run in my family. Other than standard immune deficiencies (and you need to order a complete blood count and quantitative immunoglobulins to diagnose them), there's some thought that syndromes like a variant of cystic fibrosis--where you create thick mucous, but don't have full blown cystic fibrosis might explain why we suffer despite clear CT scans and multiple surgeries. After 5 surgeries, I started one 250 biaxin pill/day in 2002, and cut down my infectons from nearly constant to less than yearly--after twenty or more years of constant infections. There is a type of patient who responds: low IgE levels, not too much allergies (although I get allergy shots)--not everyone responds. But for some people, it works very well. Although there are no formal studies, my ENT also uses zithromax 250 once or twice a week with good results, on selected patients. Here's the Chest article: http://www.chestjournal.org/cgi/content/full/125/2_suppl/52S Dr. Anders Cervin recently published the first randomized controlled, double blind study, and it showed decent results. Hope that helps. Judy > >Since last November, basically one long infection resistant to several > >types of antibiotics but finally reactive to doxycycline ! However, [quoted text clipped - 26 lines] > > >--------and I have had some BAD years !!! > After many years of similar problems, I was found to have an IgG subset > 1 and 3 deficiency. Well, it explains the problem, but no easy [quoted text clipped - 55 lines] > > > > >--------and I have had some BAD years !!! VERY interesting. I have tried on more than one occassion to get the ENT to consider low dose long term antibiotic based on a similar article. He is very against it. However, he said he was taking a tissue sample during this last surgery to biopsy. He was hinting he would be open to it if the cilia proved defective. After all these infections I have to think they dont work very well. I have to push again next week . I am coming up on having to involve an infectious disease doc and immunologist . I have already alerted my docs I want the work ups. Scary. Sick with no solution. I am betting I am going to come up with some defiency. I too would be very reticent to take the gamma globulin ( not that the insurance would approve).... Here is somethiong interesting. In a Medline abstract I was reading about this yesterday, a tie in to squamous cell carcinoma was referred to ( I only skimmed and do not recall if they even understood the connection). I had a skin cancer , squamous ! removed off my arm 5 years ago that popped up out of no where. > After many years of similar problems, I was found to have an IgG subset > 1 and 3 deficiency. Well, it explains the problem, but no easy [quoted text clipped - 55 lines] > > > > >--------and I have had some BAD years !!! Judy, have you been on the low daily does of Biaxin since 2002? And what do you do when a flare up infection hits? No issues with taking antibiotics that longterm? > After many years of similar problems, I was found to have an IgG subset > 1 and 3 deficiency. Well, it explains the problem, but no easy [quoted text clipped - 55 lines] > > > > >--------and I have had some BAD years !!! Yes, I've been on it for four years and decreased my rate of infection from >6-10 year to <1. When I flare, I"ve used Augmentin and don't stop the biaxin. Once, I was put on levaquin, and had to stop the biaxin (the two together can lead to heart problems: prolong the Q-T interval.) The mechanism is anti-inflammatory, not anti-infective. It reduces mucous production and repairs the mucosa. It's been used in Japan for years. My ENT and I decided the risk outweighed the benefit, and lots of people with acne or rosacea would be on the anitibiotics for that long. I have a review article from Chest in 2003 where it summarized that the low dose use of macrolides didn't lead to resistance. Again, it only works for some people. The articles say to give it 12 weeks to determine benefit. When I first went on it, I actually emailed Anders Cervin in Sweden for advice when I got a flare: and he emailed back! It's not the solution for everyone, but it clearly works for both myself and my daughter. (And we both have immune deficiencies.) It's not like I didn't give surgery a decent try, after 5 procedures.... Judy > Judy, have you been on the low daily does of Biaxin since 2002? And > what do you do when a flare up infection hits? No issues with taking [quoted text clipped - 58 lines] > > > > > > >--------and I have had some BAD years %2 I knew of the low does clindamyicine (?) as an anti-inflammatory use in Japan and had tried to show that to my ENT even as far back as two years ago. He was annoyingly closed minded. Old school in many ways. Good grief, I think many of these chronic conditions are CAUSED by assembly line ENT approaches. By the time you get in you are ten days infected (or they stab at an Rx over the phone which misses the bug on chronic patients as they will use pos gram target only etc., ). As a chronic patient, you are then two weeks out at best before the right Rx gets prescribed. Then, seldom will they dose be for longer than 3 weeks. About the time the inflammation ( or even infection) is finally settling down, off you go toward a rebound from hell. This is where the tissue damage and superbugs get developed--in my opinion. I call that lazy ENTs. A real cycnic would say the ENTs care less as this makes for suregery opportunites. Trouble is , after the second or third surgery and no quality of life, the ENTs still have the arrogance to nearly blame the patient for being sick. I know more ( non-clinically) than the ENT on how to treat these recalcitrant cases. The few succesful infection free periods were when I begged or insisted on cultures, longer course treatment, rinses , etc. This time, I am stuck.Well, I have had enough so when I see him next week, I am pushing to try anything ---or doc shopping. I am in this far with one doc so I hate to transfer. I will be doing the immune system workups, this is for certain. I am hopeful as well he will go for your idea. I am presenting it again --to the break point frankly-- and thank you very much for all the info in your post. Concise and I think going to prove very applicable to my situation ! I will post how my immune system testing comes out. > Yes, I've been on it for four years and decreased my rate of infection > from >6-10 year to <1. When I flare, I"ve used Augmentin and don't stop [quoted text clipped - 78 lines] > > > > > > > > >--------and I have had some BAD years %2 Good luck. I was speaking to my ENT the other day, and he is planning to give a grand rounds on the use of low dose macrolides in selected patients. He told me that he goes to national meetings and speaks to the experts, and almost all of them are unfamiliar with the articles nor have they tried it. Instead, they talk about the latest surgical technique. He has a busy practice and he has only about a dozen patients on the macrolides, but he carefully selected them, and tracks them, and he's had very good results. I've always respected and appreciated him because he's open to new ideas and he truely cares and is willing to manage patients medically. He's very special. I really hope you get the answers and care you need. I share your frustration. Judy > I knew of the low does clindamyicine (?) as an anti-inflammatory use in > Japan and had tried to show that to my ENT even as far back as two [quoted text clipped - 105 lines] > > > > > > > > > > >--------and I have had some BAD years %2 I could ( suppose you could) write a decent laymen's book on these experiences. I told my ENT ( based on some web article) four years ago about a split gene probability --whereby we are close to something akin to cystic fibrosis. He looked at me suprised, then muttered...it has to be something like that. For a long while we have both known my problem is "mucosal". Viscosity is that of super glue. I drink more water than 6 adults ! In his defense ( sort of) there are as many snippets on-line warning against long term low dose macrolides , as they do warn of resistence issues. Strong meds. But good grief , what shape is my system in anyway with 5-7 dumpings of antibiotics per year for ten years? My immune system is already a suspect in all this. And clear CT scans since the last major surgery in '96. Some ENTs are really surgeons at heart ( mine) . Once they do that stellar job of clearing out the routes, they trully are done ( and want to be done). My hunch is other patients of his or ENTs of this ilk move on. I just happen to be pushing for a little out of the box work . If it were possible, I would just ask him to let me sigh a waiver for liability ( his) such that I recognize any risk....now hand over clarithymicin ! I am hoping if he wont budge my internist will. I do not know her very well yet so hard to say. It is going to be tough to get an Indiana doc , right here by the University , to Rx a virually open long term script. Meantime, they are otherwise fine with a patient remaining with infections 5 cm from their brain ! Go figure . > Good luck. I was speaking to my ENT the other day, and he is planning > to give a grand rounds on the use of low dose macrolides in selected [quoted text clipped - 120 lines] > > > > > > > > > > > > >--------and I have had some BAD years %2 I know what you mean: the current dogma is to avoid antibiotics because of resistance. There was an article in Chest 2003 which stated that resistance at low doses did not appear to be an issue. I stumbled across the first article in 2002 and my ENT felt like we had nothing to lose at that point. My daughter's internist, a very smart woman, was quite concerned when she heard that we were starting her on biaxin this year: after two ER visits and a non-stop infection for months. Granted, my daughter just called to say she was getting a sinus infection, but it's the first she's had since March, and she was solidly infected from last September through this March. Surgery has been advised for her, but she's watched me go through 5 of them, and wants no part of it. It's weird: I know the surgery caused more problems than it helped and that it's not simple mechanics--open spaces don't translate into no infections, yet I still buy into the instant fix hopes.When she called, I asked if she'd reconsider surgery. As a surgeon told someone else: "I can open the door, but I can't change the wallpaper" My daughter does have one concha bullosa--an ossified, big turbinate that closes off her ostea, and it would probably help her to have it removed, but she's 21 and needs to make that decision herself. I agree with you: a book would help get the information out. Judy > I could ( suppose you could) write a decent laymen's book on these > experiences. I told my ENT ( based on some web article) four years ago [quoted text clipped - 143 lines] > > > > > > > > > > > > > > >--------and I have had some BAD years %2 I had one last thought: In the last few years, one of the most important advances in the treatment of cystic fibrosis has been the use of azithromycin. When cystic fibrosis patients get colonized with pseudomonas, their lung function declines. Although azithromycin is a lousy pseudomonas drug, it stops the bacteria from being so "sticky" and improves lung function in cystic fibrosis patients. Here's just one of many pubmed hits: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstra ct&list_uids=16279156&query_hl=5&itool=pubmed_docsum There has been some resistance, but the doses used are much higher: typically 500mg azithromycin around three times a week--relatively high doses. So, if some of the common issues here are overly thick mucous and colonization by bacteria, and the use of azithromycin has been proven to help the worse case of thick mucous--cystic fibrosis--it might be helpful in chronic sinusitis. Just another arguement. And, realistically, there is no one magic therapy that works for everyone, or this forum wouldn't exist, but novel ideas deserve investigation. Judy > I know what you mean: the current dogma is to avoid antibiotics because > of resistance. There was an article in Chest 2003 which stated that [quoted text clipped - 172 lines] > > > > > > > > > > > > > > > > >--------and I have had some BAD years %2
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