Is it necessary to see an Infectious Disease specialist or is my respiratory specialist knowledgable enough?

I was diagnosed 4 weeks ago and don't see my specialist again until May. I was given no information and have spent the past 4 weeks trying to find out as much as possible to get past the fear. There was a fungal ball in my lung found during a bronchoscopy, I'm now using a steroid inhaler but that's all I know. Feeling a little lost until I found this website. Thank you so much.

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  • Lordee, sounds exactly like me! If you PM me I can link you to my blog.

    My respiratory consultant freely admits she's not sure what's going on with me or what to do with me! Working diagnosis is ABPA, allergic bronchopulmonary aspergillosis (a form of chronic eosinophilic pneumonia).

    So far I'm on: 10mg/day prednisolone (though she'd like me to be on more); loratadine (antihistamine); fostair inhaler, ventolin and hypertonic saline nebules, carbocisteine (a mucoloytic), and we're planning to do another bronchoscopy in about 3 months.

    I also have Hughes Syndrome (APS) and Sjogren's syndrome.

    As to whether you should see an infectious disease specialist, depends what the fungus is and how you got it I guess. Not necessarily 'infectious' of course.

    Would welcome feedback as you progress. May seems a long time to wait for next appointment?

    Good luck!

  • Hi. I was diagnosed with ABPA in 2011. I had been diagnosed with COPD for some years and following an X-ray this was the diagnosis. It can be frightening at first but it is all about getting the medication right. I would imagine that just an inhaler might not be sufficient as steroids (prednisolone) are the answer to controlling your breathing and coughing. I started on a high dose of steroids (25mg) and gradually reduced with the hope of coming off them. However I got as far as 3mg a day but once the winter arrived I was not able to get down to 2mg. Been up and down during the winter but having seen the Registrar (respiratory) I now know how to deal with any ups and downs with my breathing. I know that steroids have many side effects but hopefully these are being combated with Alendronic Acid and calcium tablets to stop osteoporosis and Omeprozole to protect the liver. Hope this might help you. Regards, sparrowhawk

  • The fact that all of the doctors mentioned know enough to be able to diagnose ABPA is an indication that they are more than competent at treating you, or know where good advice can be found. There are at least 2 centres in the UK that have high levels of expertise - the Brompton in London is excellent but the National Aspergillosis Centre in Manchester has more specialism (www.nationalaspergillosiscentre.org.uk), particularly in the use of antifungals to treat aspergillosis.

  • Was a inpatient at the Brompton no medicine in two years appointments every six month no good and the Manchester centre emailed no reply when your considered terminal no one what's to no not even my specialist at the Charing X no medicine I look things up and the I buy them and hope for the best but opened minded for any help full news thanks

  • Firefly - what form of aspergillosis have you been diagnosed with, if any? To get a referral to the National Aspergillosis Centre you should go to your GP rather than ring or email direct. Contact details for NAC are on nationalaspergillosiscentre...

  • Thank you for everyone's help, I like my doctor but he performed a bronchcoscopy for a totally different reason and found a fungal ball at that time. He said I had aspergillus, said I should use a steroid inhaler and said come back in 3 months. I just feel a little lost and once I looked it up maybe a bit terrified.

    I live in Edmonton, Alberta, Canada and I don't think there's any special clinics here, but thank you for your help.

  • Wanted to no if carbocisteine was alright to take with v/ fend for aspergilluma have also pseudomonas ,taken 50 mg a day.gp said not her thing haha. Have tried noxafil 40 mg for 7 days no good! Price for v/ fend £400 for noxafil £650 GP won't pay. Anyone have any good ideas specialist at Charing X hospital won't give any medicine.

  • It looks like no one has any answers well we have to keep trucking on ps I beat tongue cancer 7 years ago but got pseudomonas in the hospital after the op. Good luck to everyone firefly

  • If you are being treated for aspergilloma it would be best to ask your doctor for further information on treatment. For checking whether two or more drugs you are taking are safe when taken together we run a database of interactions for antifungal drugs: antifungalinteractions.org

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