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Does anyone here have Interstitial Lung Disease (ILD)?
I have Asthma, Bronchiectasis, GERD and have recently been having serious SOB...ongoing on and off over the last 6 months. I live in Perth, Western Australia and have just had my first Specialist appt to get checked out. I have had lots of bloods, HRCT of sinuses and lungs and have my next appt with the specialist on 11 March.
Things seem to be pointing towards ILD with mild neutropenia (low neutophils for fighting bacteria; C3C the biomarker for intestital remodelling in fibrotic disease and C4 low protein for immune system function. So it seems like some kind of auto immune response is happening.
Can anyone give me some direction/hope, please?
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I have same only my asthma is lessening. Was diagnosed with Mycobacteria Avian Complex and have done well after 6 months of antibiotics 3 years ago. Aka Lady Windermere Disease. Diagnosed after CT. I am optimistic! Hope you find the cause and can breathe easier!
@cmb1
Thank you so much. Do you have much SOB? What country are you in?
@cmb1
May I ask how long you have been diagnosed with ILD, what meds you are on and if you have tracked the cause? Yours is auto immune related?
Also...I discovered this...
https://scitechdaily.com/a-breakthrough-discovery-could-help-lungs-repair-themselves/
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2 Reactions@narelled23
Hi narelled. I was Clarythromicin and other med escapes my memory. They are typical med prescribed for MAC, the type of mycobacteria.) I took the meds for 6 months. It was apparently the MAC that caused the ILD the doctors believe. The MAC at times has comes back. The diagnosis of ILD was shared with me while I was being treated and was there, I believe, on the first CT. Many tests for autoimmune disease were performed and no autoimmune problems were found; however, an immune deficiency of IgG was present at the original diagnosis and is likely the cause of the MAC which causes lung disease. I had a history of asthma since birth and had pneumonia several times causing lung scarring. The configuration of my chest with long ribcage also makes it more difficult to clear lungs. I still take inhalers occasionally to assist with clearing to avoid any lingering bacteria and when breathing is more compromised. Hopes this information is helpful to you. Sending good thoughts your way for improved health! Cmb
@cmb1
Thank you..am glad you got your addressed so quickly after picking it up.
I have only had 3 different strains of MAC picked up over two different sputums in 2024 but they were not repeated on subsequent sputums and I think the specialist put it down to contamination.
A naturopath told me 40 years ago (I am 75) that I was headed for an auto immune disease...possibly through stress. 2016 a Nuclear test picked up a speckled low grade auto immunity. I did a lot of tests then and one doctor told me to avoid gluten...he thinks I am Coeliac...have the gene for it. Another Dr said no...but I try generally to avoid gluten.
Do you mind sharing your spirometry with me. Do you have much shortness of breath? Mine is getting quite severe.
Many thanks
I do not have those spirometry readings anymore. Sorry as I had gone to another doctor then. My shortness of breath seems to come and go and is sensitive to allergies. I am lucky that my SOB is not getting much worse overall. Hopefully through technology yours will improve! Grateful to this blog for keeping us informed of new ways to help breathe easier! Keeping you in my thoughts that your health improves!
@cmb1
Thank you. A respiratory nurse told me the other day that there are about 200 different types of ILD...I am yet to be diagnosed and the type apparently can be picked up through the HRTC scans. Thank you so much for responding. It is good to know your not needing spirometry testing. May I ask what you do to treat your SOB? And do you know what your lung volume is?