Getting a definite diagnosis and help - Aspergillosis and...

Aspergillosis and Rare Fungal Infection Support

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Getting a definite diagnosis and help

renz1956
renz1956

I was told by a respiratory specialist I saw at St Vincents private hospital in Melbourne (australia) that I have a 95% certainty that i have Allergic Bronchopulmonary Aspergilliosis. This was after CT scans of my lungs which also revealed bronchiectasis. This testing was done in preparation for a thyroidectomy I had done in mid 2017. After the thyroid surgery I got a lung infection, despite all the precautions, and took anti biotics. I also took 4 week course of prednisilone before the surgery.

My question is firstly in relation to my diagnosis, in that the Dr did do the blood test for aspergilliosis IgE levels which did not reveal elevated levels. So is it definite that i have it? The main symptom seems to be the lung scarring and the mucus plugs that cough up daily since early 2015.

Now we are in the middle of winter in southern hemisphere and symptoms are worse than ever. I am 48 year old woman, with Adult onset asthma since I was around 30 years old.

I am trying many things and reaching out to get help. I posted about a week ago about the infra red light therapy - but obviously no one has heard of this.

I am following some of the recs on this site for natural therapies, which i know brings some relief.

I am on max inhaled dose of steroid preventer called 'Flutiform' for inflamation and Asthma.

Any advice most welcome, and photo is typical mucus plug, which cough up between 3-5 of these each day, every day.

2 Replies
GAtherton
GAthertonAdministrator

ABPA is a complex diagnosis that must take in for account multiple signs & symptoms - see aspergillus.org.uk/content/...

This is something we have to manage long term as it tends to persist and re-occur, it is usually treated with steroid medication and can include an antifungal drug depending on how your doctor feels your ABPA is progressing.

There are over 1000 people with ABPA in the Facebook group at facebook.com/groups/aspergi... You might get more feedback there with your concerns.

renz1956
renz1956 in reply to GAtherton

It sounds like it is difficult to get an exact diagnosis. I am going to get a second opinion from another respiratory specialist. I still do not know if I have ABPA for certain, given that I did not have a positive result on the blood test. I do have Brochiectsis and Asthma, and chronic nasal congestion. I do also have the mucus plugs as obvious from photo. I notice that your page on ABPA says that inhaled steroid are ineffective, where as my respiratory specialist prescribed the max dose morning and night.

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