Finally diagnosed.

[Cindyshadow]

Just would like to know if anyone is going through similar to me. I have aspergillosis.

It started with the sinus and it has spread to my body. I will beat this but no one 1⃣ know understands.

[lydiapine]

Well i’ve had it in my maxillary sinus for about 3 years now. It was hard to diagnose - the first ENT totally missed it in the CAT scan. My second ENT was remarkable - i’ve bernon Itraconazole - nasal compound since. I’m curious if your diagnosis was initially invasive? He told me mine was not. It’s truly miserable!!! Mucus is heavy, but not spitting up large clumps as I once was. I’m curious how your doctor treated your sinus and why it has spread? I cannot imagine what you must be going thru - since you have twice the misery I have!!!

[Cindyshadow in reply to lydiapine]

My doctor didn't have a clue. He just constantly give me antibiotics and to move house. He did not believe it was possible to have a illness like that. Nobody else did to they thought I was going crazy. The house was contaminated riddled with damp. I lived like that for a year. I then ended up in a mental hospital and got laughed at when I told them what I had. Finally I demand a different doctor she instantly reffered me then it showed up on my ct scan. For the last 6 weeks I have been unable to eat anything and constantly vomiting the lumps and I felt like my body was shutting down. I called the ent hospital and told them my symptoms and I was told to go and see my specialist now. He quickly gave me a prescription of the right antibiotics and said I most definitely have the condition. He sent me straight down for bloods. I've got to see him again in 2 weeks when it's under control.

[GAtherton Administrator Fungal Infection Trust]

Hi Cindy. Fungal sinusitis is relatively common and it can be difficult to clear up, partly because it often isn't diagnosed accurately. It sounds like in your case your doctors have been very aware and done a good job of finding Aspergillus sinusitis.

Sinusitis is not usually invasive though there are a few cases of erosion of sinuses so a CT scan is advisable if it doesn't clear up.

It would be unusual to detect a sinusitis and then realise that you have a lung infection too, however, fungal infections are so difficult to diagnose and even specialists struggle at times so it would not be unknown.

Sad to say I hear more than a few stories of people who state that their doctors don't believe them when it comes to fungal infection. Doctors have tests that are not great at detecting fungal infection and when those tests are negative they cannot use most of the approaches they would like to, they can seem to struggle to know what to do next. Thoughts turn to symptoms caused by anxiety, symptoms which do happen and are very common but are also very difficult to diagnose clearly. Consequently, a patient feels that they are not being taken seriously and can become more anxious and communication between doctor and patient starts to break down.

Remember, asthma (and others) were partly treated as an anxiety problem 70 years ago until we got really effective treatment that doctors can use! medicalnewstoday.com/info/a...

We need to be able to stop these cases becoming problems for everyone. I think that this is a particular problem for fungal disease as the diagnostic tests are limited. There is a discussion here that suggests ways to proceed with your doctor and to self support, though ultimately attempts to self-diagnose can bring you far more worries than they solve so be careful blog.crowdmed.com/what-to-d...

Also see nhs.uk/conditions/medically... for the processes the NHS think your doctor could follow if they cannot find a cause for a symptom. Perhaps part of the problem that as soon as a treatment for anxiety is suggested, some patients immediately think that doctor doesn't believe them? After all if the treatment consists of trying to teach us to think differently (eg CBT), surely the illness can't really exist? Nothing could be further from the truth, CBT and anti-depression drugs treat real diseases very effectively.

[Cindyfayth]

Thanks for your message. You are absolutely spot on. Its like being on a terrifying merry go round. I just wish the post nasel drip stops. Then the horrid sickness will go away. Also do you have any tips on calming your nasel passage down. I'm using the steroid spray and drops with 6 weeks of antibiotics but I'm getting flare ups and cuts inside my nose and the pain is excruciating. There must be a cream to calm it down?

[Bruce668 in reply to Cindyfayth]

I'm pretty sure my wife and I both have had aspergillus poisoning for 5 years now. I had the worst post nasal drip that lasted for about 18 months and then went away but it caused some pretty bad lung problems . I think it weakens the immune system and let's other pathogens enter the body. My wife was diagnosed with non- TB and 2 other bacteria's . I'm also sure we both have Candida over growth.