Aspergillosis infections are rare. Are you alone? Do you need help?

[GAtherton]

[aug2012]

Yes I am alone. I've known most of my adult life that I am allergic to mould, but no GP has ever taken me seriously. Currently I live in an extremely damp and mouldy home. I have been here four years and my health has deteriorated terribly. I'm desperate for help. I have literally begged my GP to have me tested for mould allergy so that my need to be rehoused would get a priority in the housing list, but he flatly refused. What he did was give me (I swear) a ten minute lecture about how useless allergy testing is and how impossible it is for them to find out which mould I am allergic to, and how unlikely it is that I'm allergic to mould. I have only been so ill before in previous housing years ago that I was in thankfully only one year that had the same mould problems as here. When I go away for a week or two for a holiday my chest and sinuses clear up, then when I get home the morning I wake up it's all back again. I have felt very suicidal about my situation, because I am trapped, no-one with a supposed 'duty of care' actually cares one bit, my health has hit rock bottom and I see no end to it except to get worse.

After seeing the two videoes on your website I feel even worse imagining the horror lurking in my sinuses and lungs - that huge mass of mould pulled out of the patient's nose was beyond my belief! I must have a ton of mould incubating in my nose and that idea is a nightmare.

My GP will not help - I also suffer with a terrible post nasal drip and everything I can purchase has now lost its effect, so I asked my GP for advice, and can you imagine it - he hadn't even heard of post nasal drip! I had to sit there and explain the condition to him! So going to my GP is pointless and I am at a loss. I have been taking all the help I can get that I can buy myself to help my symptoms, plus my usual astham puffers, but nothing is helping much anymore, so I've reached a wall and don't know how to move forward to ease my condition. So yes I need help. My sinuses are so bad that I feel as though my whole head is swollen up inside! My nose is now dripping both ways; down my throat and out my nose. My head, neck and shoulders ache now also. The cold winter air hurts my lungs when I breathe. I feel truly rotten and no-one understands or takes me seriously, so I don't know what to do.

I'm very glad for your site though - the info about wearing a mask is great - this has crossed my mind before and so I'm going to get a mask to wear indoors and see if it gives me relief. If it does it will prove 100% to me that the mould at home is causing my condition.

Thanks for ALL the info on your website!

[lowdon in reply to aug2012]

all i can say is change your doctor, dont say you cant. because if you knock the t off becomes can. i know people in your position who have and been succesfull. good luck . know this must be very stressfull and frustrating also depressing. j.s.

[GAtherton Administrator Fungal Infection Trust]

Hello

I am glad we could help. Sorry for the delay in answering your question.

To begin with I must warn that it is very difficult to give you specific advice using this medium to communicate as there is a lot I don;t know about your case.

It sounds like your GP has tried all he can to help and is at a bit of a loss as to what to do next.

I have a few questions - what makes you think you live in a mouldy home? Can you see mould anywhere?

Secondly - sinusitis has several causes - what treatments have you had for this?

Thirdly - when is your asthma worse? Indoors or out (this year). Are you worse at this time of year?

Thanks

Graham Atherton

NB you could try joining our support group at uk.groups.yahoo.com/group/A...

[notlocal]

I've copied and pasted this from the main HU board where I posted it a few minutes ago. Is it possible I have something not very serious?

Saw my practice nurse yesterday and there was a lot to talk about, in particular I wanted to talk about a sputum test which my doctor doesn't believe in (says too many other bacteria in mouth to make it accurate). I've had a really long infection since May which I feel has never quite gone away, still coughing green etc. So the nurse is accessing my hospital records and says suddenly that they did some microbiology when I had a bronchoscopy in October to see why the valve implants didn't work and they found a ..fungus! Aspergillus Fumigatus. She had to google it in front of me, goes a bit quiet and says she'll be writing to my consultant for 'clarification'. First thing I do when I get home is to google it myself and find Aspergillosis, probably Allergic bronchopulmonary aspergillosis (ABPA). I mean how could they grow a culture if it wasn't present in my lung? How long have they known and why wasn't I called in immediately? Will it affect my LVRS scheduled for next year? So many questions and it's the weekend and can't do anything about it. If anyone here has had it I'd appreciate any input. It seems I have another dangerous illness to add to the one I already have. Oh well..

[notlocal in reply to notlocal]

PS I joined the Aspergillosis website last night so your name is not unfamiliar!

[GAtherton Administrator Fungal Infection Trust in reply to notlocal]

It is not that uncommon to inhale Aspergillus, even Aspergillus fumigatus - it is plentiful in soil and compost for example. As a consequence it is not unusual to find it in the lining of our lungs i.e. in the mucus that keeps our lungs clean and healthy - normally the fungal spores are quickly removed by the normal processes within our bodies.

Consequently the detection of the occasional A. fumigatus spore in your lungs isn't enough reason to think you have aspergillosis. That diagnosis needs further tests and no doubt your doctors will pick up on this unless there are more obvious reasons that they find for your cough e.g. a bacterial infection that has failed to respond to antibiotics.

[notlocal in reply to GAtherton]

Thank you for your response. I freaked out (medical term) initially after I googled it and then got immediately in touch with my consultant who basically said what you just have.

Bob

[pocket2006]

Can i still ask a question on this thread please. Is it still active

[pocket2006]

I have recieved a blood test of +++positive for aspergillus fumigatus (forgive spelling). I am a previous invasive aspergillosis patient who recovered thanks to UHSM . What is confusing, is that i have normal blood results and crp, I recently had a very large flare up of a chest infection, pleurisy etc etc, now left with left sided chest pain, even at rest. Well generally.What are the implications of the positive result. Should i be pursuing treatment. Thanks trying to keep it brief, needing a bit of translation of this result to discuss with GP

[GAtherton Administrator Fungal Infection Trust in reply to pocket2006]

Given your history I think you should discuss this with your doctor - they may well be able to set your mind at rest and might even refer you back to UHSM to be sure.