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Medical Forum / Diseases and Disorders / Sinusitis / May 2006stenotrophomonas maltophilia
Doe anyone know if stenotrophomonas maltophila in the sinuses needs to be treated. I looked it up on this group and couldn't find it. I've looked it up on some other sites and can't seem to find agreement as to whether it is pathogenic or not. I have had it cultured from my sinuses and have excruciating pain and pressure. I took bactrim for 3 weeks, but it hasn't helped. Any information appreciated. Thanks, Kathyw Kathy, what is it? Symptoms from it? I've sinus problems the last 2 months and nothing seems to be helping me either. Nasacort, Spectracef, Allegra, saline rinses/. shirley I doubt that you have this if you've only been having problems for 2 months. I've had ongoing problems for many years and been on multiple antibiotics. I've also had Serratia marcescens and blastomyces cultured from my sinuses. I was on sporanox for 2 months for the blasto; the last culture only showed the steno and coagulase negative staph. Beside feeling like I'm going to die, I've had excruciating pain and pressure, but nothing much shows up on CT scans. When my sinuses finally open up (there is no actual blockage), I have a clear glue like slime that drains out of my head; I was having brown and white stuff before the sporanox. I've had the slime for over a year now. I worked in a school that had multiple mold problems and was exposed to a lot of toxins. The stuff has also grown out several of the molds I was exposed to in that school, but all of that is gone now. I had to quit my job. The ENT that did the cultures said there wasn't any pus, but there was a film. He had never heard of the steno. I would think that actual cultures would be more informative than a CT scan. An infectious disease doctor treated me for the blasto, but since it didn't show up on the last culture (I was sitll on the sporanox), he doesn't want to see me any more. I'm sitll sick and can't find anyone to treat me. Be careful with antibitoics. Make sure you take all of it when prescribed and don't keep taking the same one over and over. If you have an actual infection try to find an ENT to do a culture and not just blindly treat you (if you can find such a person). In my experience ENTs only want to do surgery and if they don't think you need it they just send you somewhere else. I just keep getting sent in a circle from one doctor to another. I have been on bactrim before and afraid this may be resistant to it and that is the only drug that is supposed to work. I don't want to take it any longer if the Steno is not pathogenic, but I'm getting different opinions from doctors. Kathy That's one that I haven't had....and I've had some bizarre ones....Doc said that lots of times the bizarre ones are opportunistic - they just kind of sit and smolder. Turned out that all of these opportunistic problems were related to a deeper seated anerobic infection that was causing most of the swelling..... Hi, Kathy. I've no medical training, but plenty of experience searching the National Library of Medicine "Medline" database for information. A quick look at gateway.nlm.nih.gov searching for "stenotrophomonas maltophila" came up with 12 hits. Here's the one that seemed pertinent, but there's no abstract, it's in Spanish, and likely only available through a hospital medical library or medical school library. [Bacteremia caused by Stenotrophomonas (Xanthomonas) maltophila] Campos-Herrero MI, Pena MJ, Perez MC, Bordes A, Mosquera M. Enferm Infecc Microbiol Clin. 1997 Apr;15(4):223-5. Spanish. No Abstract More interesting was what was found searching for "Xanthomonas AND infection AND mucosal". <>Mucocutaneous and soft tissue infections caused by Xanthomonas maltophilia. A new spectrum. Vartivarian SE, Papadakis KA, Palacios JA, Manning JT Jr, Anaissie EJ. Ann Intern Med. 1994 Dec 15;121(12):969-73. University of Texas M.D. Anderson Cancer Center, Department of Medical Specialties, Houston 77030. OBJECTIVE: To describe the mucocutaneous and soft tissue infections caused by Xanthomonas maltophilia in patients with cancer. DESIGN: A retrospective 15-month clinical study. SETTING: Academic, referral-based cancer center. PATIENTS: Of 237 patients with X. maltophilia isolated from all sites during the 15-month study period, 114 patients were judged to have true X. maltophilia infections. Only patients with mucocutaneous and soft tissue infections were included in the study. RESULTS: 17 (15%) of the 114 patients with X. maltophilia infection had mucocutaneous and soft tissue infections: Six patients had metastatic cellulitis, 5 had primary cellulitis usually associated with catheter use, and 6 had infected mucocutaneous ulcers. The metastatic cellulitis consisted of previously undescribed multiple, hard, tender nodules with surrounding and distant cellulitis (5 patients) or ecthyma gangrenosum (1 patient). Four of these patients died of the infection. Metastatic cellulitis and mucocutaneous infections occurred in hospitalized, neutropenic patients who received broad-spectrum antibiotics (beta-lactams, quinolones), often with in vitro activity against the infecting organisms. Response usually correlated with recovery from myelosuppression and administration of trimethoprim-sulfamethoxazole with or without ticarcillin-clavulanate. Catheter removal contributed to response in the treatment of primary cellulitis. CONCLUSIONS: Mucocutaneous and soft tissue infections caused by X. maltophilia are not uncommon, and X. maltophilia can cause metastatic nodular skin lesions that mimic disseminated fungal infections. It also causes serious morbidity and high mortality in patients with metastatic skin nodules and can cause superinfections in patients receiving broad-spectrum beta-lactam or quinolone antibiotics to which the organisms are susceptible when the infections develop. Catheter removal contributes to a favorable outcome in patients with catheter-associated cellulitis without bacteremia. Xanthomonas maltophilia infection should be added to the differential diagnosis of mucocutaneous or soft tissue infection in patients with cancer. Trimethoprim-sulfamethoxazole with or without ticarcillin-clavulanate is the current treatment of choice for culture-proven infections, but early empiric therapy may improve outcome. ---------------------- For the entire paper see http://www.annals.org/cgi/pmidlookup?view=full&pmid=7978724 One thing to keep in mind.. sinus infections can take weeks or even months of treatment to clear up. You should ask a good ENT about how long Bactrim (Trimethoprim-sulfamethoxazole) might be required. Some ENTs don't seem to understand understand how difficult it is to clear up an embedded infection in the sinuses. They perhaps seem to prefer surgical methods too often. Another rare and unusual possibility other than Xanthomonas might be an autoimmune vasculitis, not a bacterial infection.. but that's very unlikely. You could ask about Churg-Strauss syndrome, Wegener's granulomatosis, etc. A blood test for ANCA, anti-PR3, and anti-MPO should reveal some vasculitis if present. With CSS, eosinophils are often elevated. With WG, neutrophils are usually elevated. Best wishes.. -- Bruce (WG '97) > Doe anyone know if stenotrophomonas maltophila in the sinuses needs to > be treated. I looked it up on this group and couldn't find it. I've [quoted text clipped - 4 lines] > Thanks, > Kathyw Thanks for the reply. I've done a search on about everything I know. Medline only has one article about Steno and sinusitis and it was resistant to bactrim and they had to use IV piperacillin. When I do a general search it is listed as being one of the bacteria of chronic sinusitis and there doesn't seem to be a lot of treatment other than IV antibiotics if the Bactrum doesn't work. I've had all the tests you mentioned above many times, always negative. I've posted here before. I coughed up brown junk for over 8 years; then it came out of my head. I've been on about every oral antibitioc there is and am afraid I'm resistant to them. . My primary care doctor tried to help me. I've been to Mayo and even National Jewish. I had a bronchcoscopy there and had pururent secretions in my left lung and it bled so they couldn't get a culture. Said it was probably reflux. I've seen 2 gastroenterologists since, and I do have reflux, but both said it wouldn't cause this. I'm on 3 nexiums anyway. Noone has even offered to do a culture until this past August because my CT scans don't ever show a lot. I cultured out blastomyces and heavy growth of Serratia marcescens then. I was on Sporanox for 2 months after seeing an infectious disease doctor but I've gotten worse instead of better. I had another culture at the first of December that cultured the Stenotrophomonas and coagulase negative staph. There wasn't any blasto, but I was still on the sporanox when I had it done. The ID doc did reluctently put me on bactrim and clindamycin for 10 days, but when I called him to tell him I wasn't getting better, he said that the 10 days should have treated it. I went over there to try to get to see him or another infectious disease doctor a couple of days ago and was told he doesn't want to see me anymore since the blasto is clear. I've been to the ER, my PC doctor, and my allergist. I can't get any help. Yesterday I finally unstopped and this clear glue-like slime drained down my chest and I felt like I was going to suffocate. This has been going on for over a year after being on a low dose of prednisone for several months for possible hypersensitivity pneumonitis. I woke up at 2:30 a.m this morning drenched in sweat, but no fever. I'm stopping back up again. I've used the Grossam technique for several years and tried everything ever mentioned on this site as an additive to it. I've even used nebulized amphotericin B and coughed up goobs of the brown junk then. I've had several molds cultured from the "slime": positive for molds that I show an abnormal IgG antibody response to and that were also present in the school where I worked. I also showed abnormal exposure to t-2 and vomitoxin (both very potent toxins), produced by the mold Fusarium and found at my school. I had to quit my job. I'm sorry I keep rambling, but I"m desperate. I was hoping one of the doctors here could point me in the right direction. I'm losing hope and can't stand this much longer. I feel sick, can't concentrate and am either in tremendous pain and pressure or have this stuff running into my chest. The docs just keep passing me around from one to the other. If I can't get help, maybe I can help some of you. PLEASE DEMAND ENDOSCOPIC CULTURES IF YOU KEEP HAVING SYMPTOMS AFTER BEING ON ANTIBITOICS FOR A WHILE. DON'T JUST GO FROM ONE ANTIBIOTIC TO ANOTHER. I THINK THERE IS SOME DANGER IN HAVING THEM DONE SO THAT PROBALBY SHOULD'NT BE A FIRST OPTION (SOME ONE CAN CORRECT ME IF I'M WRONG). EVEN IF THE ENTS SAY YOUR CT SCANS ARE CLEAR, DEMAND THE CULTURE IF YOU HAVE TO PAY FOR IT YOURSELF, BUT MAKE SURE YOUR'VE BEEN OFF OF ANTIBIOTICS FOR A WHILE. Ii'VE HAD 3 UNUSUAL "BUGS" CULTURED OUT WITH SUPPOSEDLY NEGATIVE CT SCANS. IF SOMEONE WOULD HAD DONE A CULTURE YEARS AGO AND LISTENED TO ME INSTEAD OF TREATING (OR NOT) A CT SCAN, I MIGHT NOT BE IN THE SHAPE THAT I'M IN. THIS MAY HAVE BEEN THE BLASTOMYCOSIS (WHICH IS A MOLD) ALL ALONG AND I SHOULD HAVE BEEN ON ANTIFUNGALS INSTEAD OF ANTIBIOTICS ORIGINALLY. SO NOW I DON'T KNOW WHAT IS WRONG AND EVERYONE HAS GIVEN UP ON ME. DON'T LET YOURSELF GET IN THIS SHAPE. GOOD LUCK TO ALL!! KATHYW kathywb2001 - I find it interesting to read your post that you have GERD symptoms and the clear, thick mucous. I have recently been diagnosed with GERD. I am in my early 40's and prior to this had heartburn may be 2 or 3 times in my life. About 6 months ago, I was getting the clear, thick mucous like you've described (mine was almost like jello or gelatin). Then the GERD symptoms started 2 months ago. The clear, thick mucous seems have cleared after keeping a strict schedule of irrigating 2 times a day. My sinuses seem to be ok right now but I still have these GERD symptoms. I am taking Prilosec. I wonder if there is a connection to the GERD and this type of mucuous? May be due to the bacteria. I am bummed to have GERD. My doctor is preplexed why I have this as I eat a healthy diet (cholestrol levels good), don't drink or smoke and am of thin build. Anyone else have these two symptoms together? That is an interesting question. As a matter of fact I have an appointment (in a couple of months) with an ENT at Wake Forest who deals with something called larygeal esophageal reflux. It is supposed to be different from regular GERD in that the reflux goes beyond the larynx and possibly into the sinuses. They use a double probe, one at a higher level than the other. I take 4 nexiums a day as it is and still have symptoms. But the interesting thing is that when my head is stopped up, I don't have this. It is only when the gunk is draining, so I suspect most of it is from the drainage, although I do have reflux. You might want to ask that question in a new discussion. I almost didn't find your post here. Kathy did you have any luck with the Stenorophomonas? I got a culture and it came back that result. I took Bactrim for 3 weeks and now I have been off it for a week and half and I think it is back again because I have green stuff again. Any advice you can give me what drugs did you take? Andrea > Kathy did you have any luck with the Stenorophomonas? I got a culture and > it came back that result. I took Bactrim for 3 weeks and now I have been > off it for a week and half and I think it is back again because I have > green stuff again. Any advice you can give me what drugs did you take? > Andrea Andrea, I'm sorry to hear that you have had this cultured. I just now saw the message. I've been out of town. As a matter of fact, I've been to see the ENT who did my original surgery. I'm not sure if I'm over the Stenotrophomonas or not. Bactrim is supposed to be the only thing that it is almost always sensitive to. I had a moderate amount cultured out last fall, took Bactrim for a month and in the winter, another culture grew many. I was on IV Timentin for 7 weeks in the spring. It helped somewhat, but I don't think it ever got rid of it. I also used nebulized Bactrim for a month. They've all kept everything draining, but there is something still there. I am awaiting a call from the ENT (it was an) 8 hour drive. He is talking about putting me back on IV antibiotics. He did another culture. I don't know the results yet. I will let you know what I find out. BTW, what other symptoms have you had? Do you have terrible pain/pressure with this? I've also been diagnosis with osteitis, so don't know yet whether this is still contributing to symtpoms or if it is the STenotrophomonas. I hope you have better luck than I've had getting rid of this. Kathyw Kathy, I got the results back from the second culture done in September and this one showed moderate Pseudomonas Aeruginosa which my Doctor (Dr. Palmer in U. Penn said is a kissing cousin to Steno. It also showed a rare yeast that we have to wait 2-3 weeks to get a result, I called today 2 weeks after and nothing more had been added to the culture. He put me on a wash of Gentimician and that seemed to work with the green in my nose but then I starting coughing up green in the morning so then he gave me 20 days of Leviquin at 750ml. I am going to see a doctor of Infectious dease tomorrow in my local hospital to go over everything with her. The two things are related but different and different drugs work on both. We'll see what she says tomorrow. I have two children 4 and 8 and they get many colds this is my main problem. I am going to have all other blood work to be done too, to check other factors. On 10/3/05 1:15 PM, in article ae8fd87601de2ec6ad74b6cf2e1743e3@localhost.talkaboutsupport.com, > He put me on a wash > of Gentimician and that seemed to work with the green in my nose Can you describe this? Was the Gentamycin via pulsatile irrigation? What concentration? How much solution? I am not sure how much Gentamincin is in there it was a sulfate sodium solution and I used a neti pot to put it in. I am afraid to use the waterpik because the type of infection and how much it loves water that if could get in the machine and I wouldn't know it. I boil my water, which I suggest everyone should do and I only use a neti pot. I am not sure how much Gentamincin is in there it was a sulfate sodium solution and I used a neti pot to put it in. I am afraid to use the waterpik because the type of infection and how much it loves water that if could get in the machine and I wouldn't know it. I boil my water, which I suggest everyone should do and I only use a neti pot. I hope that you get this under control. Believe it or not, I also just had Pseudomonas cultured; that's a first for me. At least the last 2 cultures have not shown the Stenotrophomonas. I'm using nebulized tobramycin right now and amphotericin wash, but may be going back on IV antibitoics. Please let me know your progress. Kathyw Cathy did you get green discharge when you had the Stenotrophomonas I really did not get much green when I had it they found a small mass and cultured that was that your experience. The infectious diease person I went to was kind of worthless. She said you find these infections all the time in the sinus and that maybe I should leave it alone, at the time I saw her she didn't see the problem because she is not a sinus doctor. My problem seems to be finding a doctor that whats to help treat the sinus and the infection. My doctor in U. Penn. basically told me that he did all he could do and that is kind of it. I went there for my last culture which he didn't even do and then he called with pills. He gave me a name of someone in U. Penn. that does infectious diease and knows the sinus but the man was not taking any new patients. So I just went to my local Infectious diease person, she suggested having my sinuses taken out - I don't think they can do that. If the infection comes back and which one is coming back is the question. I don't know where to go from here any suggestions? I have had the exact same situation. I wish I knew what to tell you to do. I've had some ongoing sinus problems for years and was on a lot of antibitotic. I mainly had dark brown drainage and coughed up lots of brown mucus before this. I think a lot of my problems are related to a pretty intense mold exposure at my workplace. I don't know if these infections are related or not, or if they are from taking too many antibiotics, or from contaminated water. I do boil all of my water now. At the time the Steno was cultured I was having severe pain and pressure behind my nose in the ethmoid area. It would occur when the mucus wouldn't come out. It was not colored at that time, but very thick glue-like translucent that is difficult to wash out. When it does drain, the pain lets up, the the mucus is so copious I feel like I'm going to drown in it. I am still haveing these symtpoms, but not to the same degree. The last ENT I saw was supposed to call my PC doctor about IV antibitotics again since he also said I could still have infection in the bone. But when I talked to him, he just said he was going to send the report with the culture results and that I should contact my PC doctor. I haven't had a chance to do that yet, and don't think my PC doctor will do this without his instructions to do so. So I guess I will request a copy of my records and give them to my PC doctor to see what he will do or go back to the ID doctor in Atlanta. This is a nightmare, because not much shows up on CT scan except there is some suggestion of osteitis. So I just get sent from one doctor to another. Have you had symptoms with this? If so, what are they? Kathyw Kathy, When I had the steno the in August I had pain as you said right to the side of my nose mostly on my right and my eyes burned at times and my throat hurt I have some discharge going down my throat and it is thick maybe like glue but not colored and it tastes very salty I think I had it in July too because I had the same symptoms and the sore throat gets worse and worse. I took bactrim at the time not knowing what it was and the sore throat went away in 3 days. I did read some stuff about steno gets stronger when you use lots of antibotics and it can become a super infection (great). Now I am on Leviquin for the Pseudomonas and this may make the steno stronger. I am getting a sore throat and the pain by my eye is coming back, I can tell when things don't feel like a normal cold, have to wait to see what happens. I mentioned that you used a liquid bactrim? for the steno did that help you and what exactly was it did it come mixed or does it have to be mixed at the pharmacy? the Gentamicin I used the pharmacy mixed and gave it to me in a sodium cholride container it works well for the Pseudomonas you might want to try that. I used nebulized Bactrim. The ID doctor in Atlanta prescribed it and ordered it from sinus pharmacy. It seemed to do better than the oral one. Bactrim is supposed to be the only reliable medication for the Steno, but the IV Timentin I was on is supposed to work too in theory, but I'm not sure I was on a theraputic dose. I think I've thrown all the vials of the bactrim away so I don't know what the strength was. The tobramycin that I am using now is also nebulized and is in the same family as the gentamicin and the Pseudomonas showed sensitivity to it. It does not work on the Steno, so I'm also concerned that it will come back. I've heard it is very difficult to erradicate. I found a picture of it on the internet and it looked more like a translucent colony similar to what I washed out of my sinuses. I also had an ammonia like smell with it. Now the smell is like a rotten smell, but just faint. I seem to be doing a little bit better on it. If you don't get better on the gentamicin, then maybe your doctor could prescribe the nebulized bactrim. If you have a compounding pharmacy in your area, they can probably make it. If not, your doctor could call sinus pharmacy and they can make it. You can look it up on the internet to get the information. The pseudomonas is supposed to be sensitive to it, but it evidently didn't kill it all. Mine didn't show heavy growth, so if this doesn't help, I may ask for the bactrim again to use longer before I go back on IV antibiotics. I am worried that the levequin I am using is going to make the Steno stronger and that now that is my problem and not Pseudomonas. The only way to find out is to get another culture but I feel the doctors think I should just live with it I have to wait till it gets bad for them to treat me. Since the Steno is clear it does not look like a problem. I am getting really depressed about this and I feel I will never be off antibiotics now having two problems instead of one. Have you seen the infectious disease doctor yet? What did he/she say about Stenotrophomonas? If not, let me know what is said about it. I saw one yesterday, she was kind of useless she thinks I should live with it both infections, unless they get real bad because I can't keep taking so many antibotics. She told me to stay on the leviquin and see how that goes but at the time I wasn't sure the steno was coming back so I did not mention it. The problem with ID doctors is that they can't do the cultures. And they don't know about sinuses. Can you get rid of Steno with your own immune system? I think it is back, I have a sore throat and clear think discharge and the type of smell you were refering to. Should I go back and get another culture done? I read that Steno was a slow growing infection. I don't know what to tell you. From what I have read and been told Steno can be very difficult to get rid of. There seems to be controversy as to whether it causes an infection or not. It doesn't matter to me because even if it is just colonizing, it forms this glue like junk that sticks to my sinuses and blocks them up and I have tremendous pain and pressure. When it breaks up, it drains into my chest and I have trouble breathing. I am still having some of this, but the last 2 cultures didn't show it. I am still trying to figure out what to do myself. Does it drain into your chest? Did the bactrim help? How long were you on it? Is there anyway you could get your primary care doctor to let you go back on it if it helped? Or maybe get him to let you try the nebulized form? I don't think the Levaquin will get rid of the Steno. My report on the Pseudomonas says that it is susceptible to Bactrim also. So maybe if you stayed on it long enough it would get rid of it. When I do a search on Stenotrophomas and sinusits it usually brings up articles citing it as being found in chronic sinusitis, but not much on what to do for it except the bactrim. I had been on a lot of antibiotics in the past, but hadn't been on any for about a year when this started. But I had been on low dose prednisone for several months for possible hypersensitivity pneumonits. Had you been on a lot of antibiotics before this? Have you had a lot of sinus problems in the past? Have you been on prednisone? I have had 3 surgerys I have a problem with scarring and my first two doctors did not a address this after surgery so after the first 2 surgerys holes closed that were open and I was worse off. The second surgery was about 15 minutes and I was awake he just reopened the spheniods and right front. The last one (March) I went back to his office about 4 times and he had to cut the scar tissue of because it grew back. I have had problems with infections all the time I was cultered for Pseudomonas before which is also hard to get rid of . After the surgery I had to be on antibotics for a long time because of the scaring about 45 days. 2 weeks after I stopped the medication I started having problems again and went on and off various antibotics all summer, I never had a culture. Then at the end of the summer they found this crusted thing in my nose and it was cultured and was steno. I was not getting much green discharge at all at the time but had a sore thoat and pain and a constant think drip. I went on bactrim for 3 weeks and one week for Meta somthing. I was on bactrim during the summer for several weeks when she was just giving me antibotics to try to help.Two weeks after this course of antibotics I was cultured again because I had green and it was Pseudomonas so I tried just using the genticimin wash and that just about got rid of it until I started coughing green stuff ( not much) so I started taking Leviquin that the culture said would work because I figured the gentimican wasn't getting everwhere and I just want to get rid of this. So I am on 750Ml of leviquin now for just about a week and things still don't seem quite right I am getting a little green still and thick clear/white mucus that is giving me a sore thoat and a pain to the right of my eye again which makes me think that maybe the steno is back. My ent in Penn. did tell me that Steno does cause infection. My two kids both have a cold now so that could be the reason too. I was on prednisone for a week on June it does not work for me. The ID doctor mentioned something about the steroid spray could make infections happier ever hear that? Well what to do now? thanks for your help I makes me feel like I am not alone and crazy. Andrea I have had 3 surgerys I have a problem with scarring and my first two doctors did not a address this after surgery so after the first 2 surgerys holes closed that were open and I was worse off. The second surgery was about 15 minutes and I was awake he just reopened the spheniods and right front. The last one (March) I went back to his office about 4 times and he had to cut the scar tissue of because it grew back. I have had problems with infections all the time I was cultered for Pseudomonas before which is also hard to get rid of . After the surgery I had to be on antibotics for a long time because of the scaring about 45 days. 2 weeks after I stopped the medication I started having problems again and went on and off various antibotics all summer, I never had a culture. Then at the end of the summer they found this crusted thing in my nose and it was cultured and was steno. I was not getting much green discharge at all at the time but had a sore thoat and pain and a constant think drip. I went on bactrim for 3 weeks and one week for Meta somthing. I was on bactrim during the summer for several weeks when she was just giving me antibotics to try to help.Two weeks after this course of antibotics I was cultured again because I had green and it was Pseudomonas so I tried just using the genticimin wash and that just about got rid of it until I started coughing green stuff ( not much) so I started taking Leviquin that the culture said would work because I figured the gentimican wasn't getting everwhere and I just want to get rid of this. So I am on 750Ml of leviquin now for just about a week and things still don't seem quite right I am getting a little green still and thick clear/white mucus that is giving me a sore thoat and a pain to the right of my eye again which makes me think that maybe the steno is back. My ent in Penn. did tell me that Steno does cause infection. My two kids both have a cold now so that could be the reason too. I was on prednisone for a week on June it does not work for me. The ID doctor mentioned something about the steroid spray could make infections happier ever hear that? Well what to do now? thanks for your help I makes me feel like I am not alone and crazy. Andrea What have your recent CT scans shown? Is it possible that the infection went into your sinus bones and you have osteomyelitis or osteitis? My most current ENT thinks that is what happened to me. Since you have been to UPenn several times, I assume you live near there. Don Brady told me about Dr. Kennedy there who is studying and I assume treating this. Could you make an appointment with him or send your scans to him? My last CT scan was done after I was off the bactrim and right before I was cultured for Pseudomonas. I showed build up in my spenoid but he said he was not concerned about it the holes are open. He works at UPenn his name is Dr. Palmer, Dr Kennedy works in the same group you have to wait like 4 months to get an appointment with him. I live about 1 hour and twenty minutes from there in NJ. I live about the same distance to NYC too. I think my issues are tough infections Palmer says he can't do anything else for me as far as surgery goes. He recommended an ID doctor to go to but the man is not taking anymore patients. So I called today to tell his nurse today to give her my recent details and she called in Bactrim for me and we lowered the leviquin she said she would get me the name of another ID doctor that he can recommend. Did you have more luck with your ENT of ID doctor for treatment? and If I go to an ID doctor will they be able to do a proper culture? I'm still waiting on the records for the ENT that I saw in Baltimore. It was 7 hours away so I'm not going to go back there unless all else fails. He told me that he was going to call an infectious disease doctor there and then prescribe the IV antibiotics, but instead he called and said that my Primary care doctor should take care of it since I am so far away. I don't have an appointment with him until November and I don't think he will do this without either talking to the ENT or reviewing his notes and even then I think he will be hesitant. Hopefully, he will refer me to an ID doctor closer to home, if I can wait that long. The problem is, I live in an area that doesn't have very many ID doctors. It's very frustrating. The pain is coming back and I'm afraid it will continue to get worse as colder weather sets in. The nebulized antibiotics seemed to work for a while, but don't seem to be working as well now. I do have some oral bactrim left that is still good, so I may go ahead and try it again. I don't think the ID doctor will do a culture, but maybe he will look at your culture results and CT scan and direct treatment from them. Since you live near NYC, have you thought of seeing Dr. Tichenor? He used to post on this group, but I haven't seen him post in a while. His website is http://www.sinuses.com Just keep on trying until you get someone to treat you appropriately. You may have to go on IV antibiotics. A sphenoid infection is serious. Are you able to function? Having two small children must be really hard being sick. I feel for you and hope you can get this taken care of. Kathy is there a way I can talk to you directly Can I give you my e-mail? I went to my local ENT on Tuesday and he told me that he has never had a patient with Steno and he sees a lot of patients. I asked him to do a culture and he looked at me like I was crazy because there is no green in my nose I am still on the leviquin. I told him that the steno is clear, he was the one that did the culture on me for the steno but that time there was a crusty thing he could take out, this time nothing seemed there, I keep getting this pain by the right side of my eye and I am wondering if the steno is back and he just can't see it. The culture he did this time was with a swab and he just wiped the inside of my nose I don't think this is going to come back with anything, have you ever had a reliable culture done this way? How are you doing? Has your doctor ever had a patient with Steno before? My stupid ID doctor said it was common in people with sinus problems to have this, but if this ent has never even seen it she is wrong. Andrea > Kathy is there a way I can talk to you directly Can I give you my e-mail? I don't like to give out my email address or phone number on an open forum, but I will give you an address that I don't use much anymore and am going to cancel soon. It is Kathywnb@yahoo.com. Email me at that address and I will give you my current one and my phone number if you want to call me. I'm going to be gone this afternoon, but will try to respond tonight. >My last CT scan was done after I was off the bactrim and right before I was >cultured for Pseudomonas. I showed build up in my spenoid but he said he >was not concerned about it the holes are open. He works at UPenn his name >is Dr. Palmer, Dr Kennedy works in the same group you have to wait like 4 >months to get an appointment with him. I find that a good rule of thumb, except of course in urgent cases (as yours may be), is to ask for an appointmant with the doctor who has the longest witing times for an appointment. They are usually the best. However, Dr. Palmer is co-author of a number of papers with Dr. Kennedy so he *should* be good too. > I live about 1 hour and twenty >minutes from there in NJ. I live about the same distance to NYC too. I [quoted text clipped - 6 lines] >doctor for treatment? and If I go to an ID doctor will they be able to do >a proper culture? >What have your recent CT scans shown? >Is it possible that the infection went into your sinus bones and you >have osteomyelitis or osteitis? My most current ENT thinks that is >what happened to me. Since you have been to UPenn several times, I >assume you live near there. Don Brady told me about Dr. Kennedy there >who is studying and I assume treating this. He does use a more agressive surgery technique which involves removal of quite a bit of ethmoid bone, where infection may reside. I am not knowledgeable enough to say what classes of disease he may think that this approach is or is not suitable for.... >Could you make an >appointment with him or send your scans to him? I've been reading the responses to your questions about stenotrophomonas maltophilia -- I have had a maxillary sinus culture show two organisms: strenotrophomonas and klebsiella pneumoniae. I have been sick since June 2005 -- althought I've had chronic sinus infections all my life. I am presently on my second PICC line and 5th or 6th sinus surgery. I'd been on Cipro for over a year when steno grew out of the culture. The ID physician placed me on IV levaquin for 10 days and now I am on Zosyn (pipera/tazo). I am still draining this stuff and the congestion continues along with that awful pain behind the right eye and cheek. Prior to the cultures showing Steno, I grew out chryseobacterium and pseudomonas. I get my sinuses irrigated at the ENT office twice weekly with sterile saline. For the record, I am allergic to sulfa drugs which makes me at a disadvantage since Steno seems to be suseptible to Sulfa based drug-therapy. . I'm beginning to beleive there is no cure for this. Outside of this sinus infection, I'm healthy. I am not immun-suppressed. The doctors seem frustrated when I tell them the sinus continues to drain and the pain is there -- but mostly tolerable. I am despirate for advise. IS THERE ANYONE WHO KNOWS ANYONE WHO HAS BEEN CURED FROM THIS TYPE OF SINUS INFECTION!?? >Doe anyone know if stenotrophomonas maltophila in the sinuses needs to >be treated. I looked it up on this group and couldn't find it. I've [quoted text clipped - 4 lines] >Thanks, >Kathyw
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