Dealing with aspergillus

[Kenney1953]

I have been diagnosed with aspergillus at the beginning of this year as i also have COPD as well as bronchitis and have been very ill. The drug the hospital gave me has to be mixed with water and then put into a filter and then attached to a nebuliser. I have to do this twice a day. The medication must be kept in a fridge and i am to be in a room by my self with the windows open and after the treatment no one can go in the room for half an hour. I have syringe and needles and sterile water. The holes thing is hard to get my head round but i have help from my nurses was well as my family and support groups

[Jonnyj787]

My mum has copd and became very poorly at the end of last year fatigue weight loss coughing s little blood. Doctors couldn't diagnose the problem and she underwent cancer tests etc as she had two lung nodules and a cavity. Without invasive tests they can't confirm aspergillios but her bloods show high perceptin levels so it's likely. She has had only two courses of steroids in 8 months and they won't prescribe fungal drugs as she is too fragile. At home she inhaled friars balsam, oil of olbus, oregano oil and tea tree oil which we think helped. She is not in pain now but has terrible fatigue still. Doctors are taking a watch and wait approach, so far no change to nodules on ct scan and some inflammation improvement. Interested to hear what medication you received via nebuliser. Get well soon!

[GAtherton Administrator Fungal Infection Trust in reply to Jonnyj787]

I am very interested to hear of your herbal approach. Do you have any firm indication that they are working eg reduced use of medication, improved lung function; or is the improvement an impression that things seem better?

[Jonnyj787 in reply to GAtherton]

All I can say about the inhaling is that mum was coughing a lot and full of mucus and it seems at first the inhaling made her cough more but got the mucus up and after that it all settled down and she was able to do a bit more. Has there been any research carried out with aspergillosis and inhaling?

[GAtherton Administrator Fungal Infection Trust in reply to Jonnyj787]

There is research ongoing to test how effective inhaling some antifungal drugs might be at controlling chronic aspergillosis. Thus far it looks like if you can tolerate the procedure without too many issues it does work quite well with fewer side effects.

[kate1v in reply to Jonnyj787]

Hi, my name is Kathy. I'm new here and have just two weeks ago received a test result indicating I have Aspergillus in my R lung. So sorry about your mum. Did you say she is in her mid-80s? I know you said the doctors haven't been able to confirm her diagnosis due to health risks. I am 70 and have respiratory problems so my docs didn't want to risk anesthesia on me, but with some pain and anti-anxiety medication through an IV, I was able to tolerate a bronchoscopy procedure. (So grateful they let my daughter stay with me and hold my hand, speaking words of encouragement!) It was unpleasant, to say the least, but I wanted to do it in order to get the lung fluid for diagnostic testing. It was over in a matter of a couple of minutes, if that. I did need a breathing treatment afterwards to help expel the residual fluid. That was not painful at all, but very tiring. I don't know if your mom could tolerate the stress of the couple of minutes it took to get the lung fluid, but with pain and anti-anxiety medication -- maybe??

I appreciate your stating what she has been inhaling via nebuliser. I'm glad that seems to have been helping.

My Pulmonary doctor wants to wait 8 weeks (while my cultures from the bronchoscopy are completing their growth cycle) before starting any treatment(s). However, she has me set to see an Infectious Disease doctor at the University of Utah here in America on October 4th, and he may want to start treatment sooner. Please correct me if I'm wrong, but I understand that it's often critical that treatment of Aspergillus be started as soon as possible--before the fungus has a chance to spread further? Also, I have scarring in my lungs from a prior illness that the doctors are concerned are being (or have been) colonized by the fungal spores. My IgG is unfortunately below normal, too (I'm told this is the antibody that fights fungal infections).

In any event, I wanted you to know that I was able to tolerate the bronchoscopy w/o anesthesia, which has given us help toward a diagnosis.

I hope the inhalations continue to give your mum marked improvement.

Kindest regards,

kv

[Jonnyj787 in reply to kate1v]

Hi Kate, thanks for sharing your experience it's good to know you were able to tolerate the tests. The consultant has decided to treat my mum with fungal antibiotics Itrocontazole so we will have to see how she responds to it. Wishing you strength and wellness.

[GAtherton Administrator Fungal Infection Trust]

It sounds like you are doing a great job of managing your infection, the technique you are using is one of our more recent innovations so do keep in touch with how it impacts on your health