Medical Forum / Diseases and Disorders / Sinusitis / June 2005
Chronic AFS
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Peggy Rooney - 24 May 2005 16:50 GMT Just wondering if anyone else has been diagnosed with this. Perhaps we can discuss how our ENT's are trying to minimize the symptoms
Steven L. - 24 May 2005 22:02 GMT > Just wondering if anyone else has been diagnosed with this. Perhaps we can > discuss how our ENT's are trying to minimize the symptoms AFAIK, the only treatments for Allergic Fungal Sinusitis are topical antifungals like amphotericin B irrigation and Sporonox irrigation.
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kathywb2001@yahoo.com - 25 May 2005 03:01 GMT I totally agree with the statement about many ENTS minimizing the symptoms of sinusitis, period, or even admiting it is there without definite radiological evidence, which most of the time is "limited CT scans." I even went to National Jewish Medical Center (ranked the # 1 respiratory hospital in the world) and had a CT scan that showed "mild" chronic ethomoid sinusitis with possible osteomyelitis and was just told to use Flonase twice a day. Nobody even mentioned the possibiltiy of bone infection. I only found out when asking for records. I've been to a few ENTs in my hometown and told I didn't have sinusitis because they didn't see anything at the time of the exam. Then I could go home and wash tons of junk out of my head, but because they didn't see it at the time, it wasn't there.
After 6 months of total misery and pain behind my nose so bad I had to get a morphine shot in the ER to stop the pain for a while, then use Lortabs, I was finally diagnosed with allergic fungal sinusitis and osteomyelitis by an infectious doctor who treats difficult to treat sinusitis. He subcribes to the Mayo theory of fungi being the underlying problem in many cases. I'm not sure if he feels it is in all cases. His theory says that it is due to an abnormal immune response to the molds which is probably genetic. This sets up the "climate" for bacterial infections. Molds are sometimes very difficult to culture from the sinuses; I've had several cultures done, and it has only shown up when sent to a specific lab that only cultures mold.) I am on IV Vfend (voriconazole) and am slowly making progress. My situation is a little bizarre, and hopefully noone will have to take these drastic measures, but it just shows how so many doctors don't listen to their patients. I might add that other doctors think that AFS should be treated with steroids, but it only made my situation worse. But then I have an actual fungal infection going on too, which I think I got from not being properly diagnosed and treated to begin with.
Regards, Kathy
loxaluck - 25 May 2005 15:10 GMT Hello:
can someone please tell me exactly what i need to tell the doctor in order to have myself diagnosed properly in regards to AFS? when i mentioned this to the last ENT that i saw i was told that he would have seen evidence of this on the CAT scan and that this was not something that i wanted to waste time with. a previous ENT had told me that this "was all just theoretical". i have been to several ENTs and several immunologists and none have ever taken a culture of the slop that is in my sinuses. should they?
my main complaint is persistent relentless sinus drip (if it can be called that, its more like thick cement). i am always aware of the activity that is going on in my sinuses. i irrigate from 2 to 5 times a day. there is always color to my mucous. my general practioner will prescribe anti-biotics at the drop of a hat and always says i have a sinus infection however, although maybe they have made me better (more tolerable) i sometimes get better (more tolerable) without them. i have had several surgeries, spent a year on alergy shots, and went through allegra, claritan, flonase and others. right now i take zyrtek at night and, although i dont think it is doing anything to help my condition it does seem to knowck me out so i can sleep.
kathywb2001@yahoo.com - 26 May 2005 03:40 GMT I think you should have a culture done, but from my understanding mold is sometimes difficult to culture out. At least if you have a culture done and it shows something, you would have something to go on. I had difficulty getting anyone to take me seriously until I had the cultures done. What color is the drainage? Brown is often times associated with fungal growth and white can be too. But then again, if you have the abnormal immune response to the mold, then you can get the bacterial infections too. In my opinion I would try to find an ENT who will do a culture based on symptoms. Also, this may sound gross, but taking a sample of the mucus might not hurt either.
Lots of Luck!! Kathy
uuperiwinkle - 26 May 2005 16:32 GMT > Just wondering if anyone else has been diagnosed with this. Perhaps we can > discuss how our ENT's are trying to minimize the symptoms The thing that has helped the most is daily fluconazole (Diflucan); I have been taking it for several years. You have to get a monthly blood test to make sure your liver can handle the medication. Irrigation with Sporanox solution has also helped me (I couldn't tolerate the Ampho-B) and I also noticed a significant difference when I started taking Singulair (I also take Allegra but I don't think it does anything). I also get allergy shots; not sure if it helps with the AFS but it has helped with other allergies.
I never did get a positive mold culture; diagnosis was made by symptoms, strong allergy to molds, and positive response to fluconazole. I also never got any help at all from ENT's (three of them); one ENT, a specialist at a famous medical center, told me he thought I needed a vacation! I responded that I had unfortunately had to cancel my long-planned vacation because I was too sick to go.
I had to find an allergist who specialized in chronic sinusitis before I got an accurate diagnosis. The first allergist I saw told me to just keep doing what I was doing (allegra and nasal steroids, at that time)
Good luck; hopefully medical research will come up with more satisfactory treatments before we're too old to benefit!
kathywb2001@yahoo.com - 28 May 2005 01:41 GMT Do you not have to take antibiotics at all now? How long did it take for the treatment you are using now to work?
uuperiwinkle - 02 Jun 2005 04:43 GMT I am off antibiotics now, but improvement has been very slow. Whenever I get a flare-up of acute infection, usually secondary to a cold, I struggle through multiple courses of antibiotics that help until I go off them. It usually takes six to nine months before I go back to my usual mildly uncomfortable but tolerable state.
Peggy Rooney - 29 May 2005 17:03 GMT I am taking Sporonax orally and am irrigating with Ampho B solution. I also am spraying with Nasonex and I do take Singulair. I am also inhaling Pulmicort once in the evening. How long have you been dealing with this? Have you had polyps also?
>> Just wondering if anyone else has been diagnosed with this. Perhaps we >> can [quoted text clipped - 23 lines] > Good luck; hopefully medical research will come up with more > satisfactory treatments before we're too old to benefit! Peggy Rooney - 29 May 2005 17:05 GMT Forgot to tell you I was on prednisone for about 9 months also. It helped tremendously but the side effects are terrible.
>> Just wondering if anyone else has been diagnosed with this. Perhaps we >> can [quoted text clipped - 23 lines] > Good luck; hopefully medical research will come up with more > satisfactory treatments before we're too old to benefit! kathywb2001@yahoo.com - 29 May 2005 17:21 GMT I have been dealing with this for years, but I've never had polyps. I was on low dose prednisone for about the same amount of time as you were. When I came off my sinusitis got much worse. But before that I was having to use inhalers both steroid and albuterol because I had so much junk in my lungs. I don't have the lung problems now. I've been on the VFend almost 5 months. I would rather be on oral meds but I'm on Nexium and they don't absorb well. How long have you been on the sporanox and how long will you have to stay on it? I don't want to take this stuff forever. I'm hoping to switch to irrigation solutions soon. What is your doctor's opinion?
kathywb2001@yahoo.com - 29 May 2005 17:27 GMT I meant to say I have been on the VFend for almost 5 weeks, not months.
kathywb2001@yahoo.com - 29 May 2005 18:01 GMT I meant to say I have been on the VFend for almost 5 weeks, not months.
Peggy Rooney - 29 May 2005 23:50 GMT Kathy , were are you located? I am on Vancouver Island in Canada.
>I meant to say I have been on the VFend for almost 5 weeks, not months. Peggy Rooney - 29 May 2005 23:45 GMT My specialist says it is incurable. He will adjust my dosage every six weeks after examining my nasal passages and sinus's and checking my blood work for abnormalties. I have been on sporonax for approx 6 months now.
>I have been dealing with this for years, but I've never had polyps. I > was on low dose prednisone for about the same amount of time as you [quoted text clipped - 6 lines] > take this stuff forever. I'm hoping to switch to irrigation solutions > soon. What is your doctor's opinion? kathywb2001@yahoo.com - 30 May 2005 02:48 GMT I live in East Tennessee. How were you diagnosed? Did you have an abnormal CT scan? How long did it take to see improvement? What dosage are you on?
I'm still having some brown drainage along with globs of whitish junk. I'm not sure if this is all from the blastomycosis or the AFS or a little of both . The ID doctor I am now seeing is treating me for AFS, but I don't think I was ever adequately treated for the blastomycosis (which is also caused my a mold, but is an actual infection). I'm tired of running from doctor to doctor. This guy seems to know what he is doing so I guess I'll have to be more patient. It seems like I'm making quite a bit of improvement, but then I have setbacks and feel like I'm starting all over again. Do you notice more symptoms with weather changes?
Peggy Rooney - 30 May 2005 04:07 GMT My diagnosis came after I had Computer Assisted Sinus Surgery to remove polyps from my sinus' and nasal passages. Unlike you, my discharge is green in colour. I irrigate twice a day with a mixture of 5500 Ampho B and 100mg of sterile water. This is mixed is a bottle and I use 600 ml for each irrigation. 300 in each nostril. Sporonax is 100mg / one capsule 2 times a day. I spray my nose twice a day. 2 times in each nostril with Nasonex. My initial dosage was more and I was doing well, so my specialist reduced the dosage. I think I will probably be returning to the larger dosage. My specialist has a web site perhaps you may be interested. It is www. drjaver.com He is very knowledgeable and a skilled surgeon. Hopes this helps. Peg
>I live in East Tennessee. How were you diagnosed? Did you have an > abnormal CT scan? How long did it take to see improvement? What [quoted text clipped - 10 lines] > like I'm starting all over again. Do you notice more symptoms with > weather changes? Peggy Rooney - 30 May 2005 04:20 GMT Sorry Karen- forgot to tell you that weather has no effect to this condition.
> My diagnosis came after I had Computer Assisted Sinus Surgery to remove > polyps from my sinus' and nasal passages. [quoted text clipped - 24 lines] >> like I'm starting all over again. Do you notice more symptoms with >> weather changes? kathywb2001@yahoo.com - 30 May 2005 11:13 GMT Thanks for the information. I'm seeing my ID doctor again tomorrow
Steven L. - 01 Jun 2005 17:12 GMT > Thanks for the information. I'm seeing my ID doctor again tomorrow How did your ID doctor diagnose you with these infections? Only an ENT is equipped to take a culture off your sinuses, so did your ENT do the culture and then refer you to an ID doctor?
 Signature Steven D. Litvintchouk Email: sdlitvin@earthlinkNOSPAM.net
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kathywb2001@yahoo.com - 01 Jun 2005 18:28 GMT Yes, an ENT did the cultures, but I had to find the ID doctor myself, because he just tried nasal sprays that didn't work. I took the results to the ID doctor.
kathywb2001@yahoo.com - 02 Jun 2005 00:44 GMT Peggy, I saw the ID doctor on Tuesday and I am having the PICC line taken out at the end of the week. He is going to start me on nebulized steroids. I'm not sure how well this is going to work. I thought it would be nebulized antibiotics and/or antifungals, but we will see.
Kathy
Peggy Rooney - 02 Jun 2005 05:00 GMT So, did he tell you if it was mold or fungus? I am not sure of some of the acronyms you are using like ID doctor and PICC. I am seeing an ear nose and throat specialist.
> Peggy, > I saw the ID doctor on Tuesday and I am having the PICC line taken [quoted text clipped - 3 lines] > > Kathy kathywb2001@yahoo.com - 02 Jun 2005 11:41 GMT The PICC line is the line through which I have been receiving the IV antibiotics and antifungals. Mold is a type of fungus, so they are usually used interchangablely when referring to the sinuses. I am seeing an infectious disease doctor.
uuperiwinkle - 02 Jun 2005 05:00 GMT I have always had allergies, but about three years ago I came down with a virus that turned into a bacterial sinus infection that wouldn't go away. My personal theory is that the repeated courses of antibiotics turned my mold allergies into full-blown AFS. It's been a horrible three years, but I feel like I'm finally turning the corner, although I don't think I'll ever return to normal. Hard to explain to people that haven't been through it- somehow "chronic sinusitis" doesn't sound as bad as it is!
Peggy Rooney - 02 Jun 2005 17:01 GMT Hi - i know exactly what you mean, how bad can having something wrong with your nose get? I been looking for someone chat with. Support groups are virtually nil, at least I havent found one. Even the orphan disease sites dont list afs. Where are you located?
>I have always had allergies, but about three years ago I came down with > a virus that turned into a bacterial sinus infection that wouldn't go [quoted text clipped - 4 lines] > haven't been through it- somehow "chronic sinusitis" doesn't sound as > bad as it is!
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