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Allergic Bronchopulmonary Aspergillosis

Posted by Anonymous-9f9072c0 in Infectious Diseases, Mar 13, 2012

I would like to hear from anywho who has this condition and what treatment has worked. Would you recommend and allergist, a pulmonologist, or an infectious disease doctor? I am tired of being passed around and doctors not really understanding the condition.

Tags: Infectious Disease, lung conditions

rwrourk

Posted by @rwrourk, Mar 27, 2012

I was diagnosed last year, and we're periodically having to control it with prednisone, albuterol nebulizer and symbicort. I would like to know if a dry climate would make a dramatic difference in managing this condition. I've had asthma for many years, but the ABPA is new.

daynap

Posted by @daynap, Aug 16, 2012

I was reading through older comments and ran across this one. If you are still researching climates, here is my take on it... I have experienced different climates with my ABPA and here is what I have found. Before I was diagnosed, I was in Santa Cruz with friends. Usually able to walk 5+ miles on the beach, that day I could not breathe. The marine layer was very heavy. I went to my doctor immediately when I returned home and had an x-ray. After mis-diagnosis, finding a mass of aspergillus in my right lung, treatment for that and finally coming to the conclusion I have ABPA, I decided to make some decisions for myself. When I was at our summer retreat at an 8,000 ft. elevation, I had difficulty breathing due to the thinner air, but it was a predominately dry enviroment in the summer. In Fresno, on the valley floor, it was the dryest air ever. I found dry enviroments the easiest to breath in, however dirt, dust and polution in the air becomes a problem. Fresno has lots of agricultural polution and gets foggy, the bad air sits in Fresno like a bowl of polution covered with a tupperwear lid. Once diagnosed, I decided to move up off the valley floor to about 2,000 ft. Here I am able to breathe better, I am above the inversion layer most of the time and the wet months are followed by very dry months, which seems to erradicate most of the mold. Mold is our enemy. Rotting plant material in a wet climate creates the highest potential for breathing aspergillus and causing disease. There you have it... from the ocean, to the mountains, to the valley floor and to the foothills. I still struggle from time to time but I think it's better here than where I was.

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rwrourk

Posted by @rwrourk, Aug 16, 2012

Dayna, thanks so much for your very interesting response regarding my ABPA. I've been in northern MI for 3 months with no real improvement other than escaping the Texas heat! I'll continue to be followed at UTSW in Dallas when I return, and if the ABPA doesn't get worse, it's tolerable. Good luck!

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daynap

Posted by @daynap, Aug 16, 2012

You're welcome. I would think TX would be better than MI, due to snow, rain, etc.
Good luck to you, this is an awful disease. I am so grateful mine is not as bad as some I have connected with on the UK website. Check out http://www.aspergillus.org.uk for a wealth of information on all diseases caused by aspergillus, including our ABPA.

rwrourk

Posted by @rwrourk, Aug 16, 2012

Thank you, again, and I've book marked the UK website.

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rwrourk

Posted by @rwrourk, Mar 27, 2012

P.S. I would highly recommend a pulmonary specialist. My doctor is a professor at a teaching hospital here in Dallas, and his diagnosis of ABPA was confirmed through blood work submitted to Mayo.

daynap

Posted by @daynap, Apr 26, 2012

Hello, I have been diagnosed with ABPA following pneumonia and aspergillosis in my right lung. First diagnosed in 2009, I have battled active ABPA and treated it with success 3 times. Each time, I was on a series of V-Fend 200 mg. two times a day for a minimum of 8 weeks with prednisone. When I started all of this my IgE levels were in the thousands, now they are in the 100s. It appears the key is keeping the IgE levels- inflammation in the lungs down. I was diagnosed again on Mar. 9th and after weeks of V-fend and prednisone, I am feeling better. I will know more on May 30th. I take Advair twice a day and albuterol as needed. This is a struggle, unfortunately one that is not curable, but it is treatable. Don't get discouraged, do your research and keep pursuing the best treatment that is appropriate for you. Be sure to work with a good pulmonologist who checks blood, ct scans, chest xrays,etc. I suggest reading a report by Dr. David Denning from Manchester UK, Dierctor of the Aspergillosis Center.

gretchenm

Posted by @gretchenm, May 1, 2012

Dear Dayna,
Thank you for your educational and encouraging response. I started with a new pulmonologist today, and he seems to understand ABPA. I finally felt like I had a doctor who understands the disease and has been around long enough to know what works and what doesn't. The part you mention about keeping tabs on the blood values, i.e. IgE levels and eosinophils, this new doctor talked about and he talked about getting a current CAT scan. I think my other doctor had been around too long and thought I knew more than he did! I guess we should all be our own doctors. Thank you again.

Gretchen

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daynap

Posted by @daynap, May 1, 2012

Yes, we are our own best advocates for our health. Glad you have a Dr. that understands ABPA. You don't want that mold to take hold and grow in your lungs as I did. Keep in touch about your treatment, I am very interested, particularly in the side affects you might experience. God bless.

kathleenlove

Posted by @kathleenlove, Jun 25, 2012

can you tell me more about your symptoms I do not know what is going on with me. I have been to doctors and they do not know why I am wheezing. My lungs are clear and I do not have asthma

daynap

Posted by @daynap, Jun 25, 2012

Kathleen, when I am doing well and not on medication, my symptoms are mild shortness of breath (SOB) and a little coughing producing clear mucous. I get SOB when I really exhert myself. When there are lots of particulates in the air, like a forest fire I become really SOB and need my albuterol. When the ABPA is active, requiring anti-fungals and steroids, I am very short of breath with only mild activity, and I wheeze and cough all the time. My coughing produces thick darker colored mucous and sometimes plugs of hard mucous. I will have a low grade-fever, develop night sweats and be very fatigued. I know I should see the doctor when I start to get shortness of breath doing normal activities and the color and density of the mucous changes. Since these changes can sneak up on me, I can simply ignore them for a time and put up with it - the longer I do that, the more difficult the treatment. So far I have been on this roller coaster 3 times. I am currently off all medication and doing well, but was in Shaver Lake, CA where there was smoke from a forest fire. When I returned home that evening, I coughed all night. Had to take medication and felt awful on Sunday. Today is a better day. I hope all this helps you. If your lungs show clear on CT or Xray, but you are still wheezing - I'd guess you need to treat the symptoms without much worry. But if your doctor only "listened" to your lungs and told you "all clear", I'd insist on checking further and with another doctor if necessary. There must be a reason. If your lungs aren't the culprit, have a doctor check your throat or upper airways. I was terribly hoarse and had difficulty breathing, found out by having a CT scan for my lungs that came up to my chin (accidentally) I had a 1.5 cm mass on my thyroid (non-cancerous). My thyroid came out and those symptoms went away. The thyroid was unusually large. My advice, leave no stone un-turned until you understand your lung symptoms and the causes. If you don't think your doctor is thurough enough, get another doctor. Good luck Kathleen. Best regards, Dayna

mathewphilips

Posted by @mathewphilips, Sep 1, 2012

Hello I strongly recommend that you see a Pulmonologist. Or an Allergist , provided he/she has Pulmonology experience.

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