Does anyone have experience of recovery from Aspergillosis. This one I have does not seem to be the allergic type but the mycelium have been found in the water washed from my bronchoscopy. I have been working with cranio sacral and controlled breathing( Buteyko) and an putting on weight and regaining energy. I started doing that before the diagnosis. I use oxygen on activity but at normal resting my oxygen saturations can be from 93-98. These readings sometimes are difficult to take as my hands get so cold..
Voriconazole is suggested but at 43 kgs I do not feel strong enough to deal with the side effects and as I'm putting on weight and feeling better I want to delay.
Sorry for all the detail but thought if I said what I was doing but would appreciate others experiences some of you may have information I have not yet found. Oil of Oregano has been suggested but I have not found much information.
With many thanks
Written by
Harrydog1941
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Hello Harrydog and welcome to the site. I'm surprised your post hasn't had any response. Maybe, the posters who do have knowledge of it, have not been around today. I'm sure you will receive some replies soon.
In the meantime, I don't personally know much about this, except that it is some sort of infection. But, I am sure I have seen many posts about it.
If you type it's name into the search bar at the top, it will come up with all the discussions about it. I'm glad to hear you are gaining weight, as I know from experience, it's very hard to do. I wouldn't want to rock the boat by chancing something spoiling this gain.
Don't apologise about the detailed information you have given, many people get asked to give more details of their situation on here because, it helps the more knowledgable member's to give the poster the most suitable advice. xx
Hello Harrydog, would you call the BLF help line? It's 03000 030555 & office hours. They are very knowledgable about all lung issues.
There are a handful of people on the site who have aspergillosis, perhaps they haven't seen your post yet.
I was investigated for it and thankfully don't have it but I'm very sorry that you have.
I was certainly ready to take the antifungals, anything to kill off the aspergillis.
When I read up about it I found that everyone with lung problems like ashma must stay away from mould spores like compost, farmyards, kicking up leaves as kids do. As yet I've not met one single parent of an asthmatic child who's been told this. Grrr
Do you know how you got it in your lungs?
Do call the help line, perhaps you'll be lucky & won't get side effects from the drug.
Thanks Peege. I'm exploring via the BLF and the suggestion was good. I'm not writing off the antifungal just trying to improve my own energy and immune response capability. The weight increase is a slight indicator for me.
I suspect I got it last year working with some highly contaminated straw as I've been participating in the development of a permaculture site since I retired. Just bad luck as been doing this work for many years even before retiring.
Hello my name is Mary I'm 49 and I have sarcoidosis of the lungs and invasive aspergillosis I have been on steroids and voriconazole for about 12 years I suffer with lots of chest infections and I'm always short of breath especially on exertion I also get bleeding from the lung I don't really suffer with any bad side effects from the voriconazole maybe I'm lucky. I take 400mg per day of them and 10mg per day of steroids I find the side effects from steroids not very nice but I have learnt to live with most things I also try to watch my diet because steroids can make you gain a lot of weight I have never tried any alternative medicine I'm not sure it would help me it is very hard to find information about this condition I'm currently being treated at the Royal free hospital in Hampstead I have a home nebuliser and home oxygen there are lots of things I can't do but I do as much as I can under the circumstances .When u are stronger don't be worried about going on voriconazole without them I would be a lot worse off as the fungus would grow back in my lungs
Marypoppy49. Your message was very helpful. I hope you continue to keep well. I also find it so beneficial to have oxygen which made so much sense when I saw that my energy dips were part of the oxygen dips I have on excercise.
I'm supporting my progress with Cranio sacral therapy and herbs to increase my appetite.
Which herbs are you taking to increase your appetite. My husband has lost a lot of weight and has a poor appetitive so in always interested in those of us who had had success.
Really its all those bitter herbs but are best prescribed by a herbalist as so many factors come into play. All i can say is that the herbs, the calorie counting with many small meals and concentration on relaxation is helping. I have moved fro 43 kgs to 47kgs since March. I am using a powerplate at the local gym to increase my muscle (its heavier than fat and better for us) tone and not to use up too much energy but I need to rethink as much of the increase is going on around my middle. For the first time i can pinch some flesh. Not much but there.
My sat levels still drop on exertion and recently on a flight but dont get too breatheless which would be a warning indicator if I did.. So a different excercise programme may be the answer. Im working on it.
Its hard work I know with little empathy from most people but it is possible.
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