Catching up

[Sunshine404]

Hi everyone,

I hope you’re all in good health. I’m currently experiencing my longest exacerbation, lasting four months. During this time, I’ve been on multiple medication regimens and have consulted three pulmonologists before finally finding one who resonated with me. This is where I was diagnosed with an underlying fungal lung infection, which has been causing recurrent bacterial infections.

I’m really frustrated with taking antibiotics every month. The fungal infection won’t clear up until I complete 4–6 months of itraconazole treatment.

I also consulted an ENT, suspecting that the fungus was present in my sinuses and repeatedly infecting my lungs due to post-nasal drip. I’m currently using Foster and other prescribed medications, and I’m hoping my sinus issues improve soon.

The ENT prescribed NAC (N-acetylcysteine) to help with lung clearance since carbocisteine doesn’t suit me. Has anyone used NAC before?

Thank you!

[Swizzy]

I can't get on with carbocysteine so have NAC. I find that fine. I hope that the fungal infection gets sorted out.

[Patk1]

I hope u soon get on top of it x

[bikergrove]

Hope you get it sorted must be terrible for you.

[Alberta56]

That sounds really bad. I hope they can finally get on top of this horrible fungus. Best wishes.

[PaulineHM]

Hello,

I feel for you. 4 months is a long time. Mine took 7 months ( no fungal infection noted ) over this last Autumn/Winter to clear.

Hoping it clears soon for you.

Go well

Pauline

[peege]

I'm presuming that the fungal infection you have in your lungs is aspergillus/aspergillosis ? To find out more about it have a read up on the NHS website. Its quite important to keep the levels as low as possible with the necessary antifungal medication. I dont envy you at all and I'm sorry you're going through all this.

You could call the helpline 0300 222 5800 Mon-Fri 09.15 to 5pm to discuss everything including the right dose of N-Acetyl Cysteine/ NAC. I mention the dosage because with Carbocysteine we're usually prescribed 2 capsules 3 times daily to begin with then reducing to twice daily when the lung mucus is under control, I don't know if it's the same method on N-Acetyl Cysteine.

Lots of members swear by NAC, I've been prescribed it in both France and Croatia when I've run out of Carbocysteine, the soluble one works faster I believe.

[Sunshine404 in reply to peege]

Yes, aspergillus and some other species.

I have been taking carbocisteine till now but lets see if nac works for me

[Sunshine404 in reply to peege]

i am really tired of taking antifungals daily but it is what it is. I have been missing doses frequently but i guess it is important to take it regularly for aspergillus to get rid of

Thank you

[Jack70]

how did they diagnose you with the fungal infection?

What tests and procedures. I have high aspergillosis blood tests but nobody seems to know or care what to do about it . Sputum test show no fungal growth.

I don’t know where to go with this.

[Sunshine404 in reply to Jack70]

Hi, i have been diagnosed with fungal infection through sputum culture. If the sputum culture doesn’t show positive fungus it might be seated deep in the tissue or sinuses.

Another way to do it is via a CT-scan as it can show if there is the presence of fungus spores.

Another cause of it might be that the fungal spores are already dead due to administration of antifungals

P.s: I am a med student so have some knowledge of it.

Have a good health x

[Jack70 in reply to Sunshine404]

Hi sunshine. Thanks for your reply. May I ask what were your symptoms that lead you to get tested.?My high aspergillosis bloods were picked up while being treated for lung infection which caused a cavity in my lung. I’ve just had CT scan with no mention of fungal growth it just says the cavity has significantly reduced.

I just want to know what symptoms to look out for. My Doctors seem absolutely clueless.

[Sunshine404 in reply to Jack70]

Hi Jack. When I have an exacerbation, I have a lots green sputum that seems difficult to clear. I was being treated for A bacteria according to the sputum culture i had before but my symptoms were not resolving. I also noticed that the sputum had black streaks too that made me suspicious of a fungus. And when I had my sputum culture, It was aspergillus.

[godstone]

hope this gets sorted for you soon, that’s a long time take care x

[watergazer]

Oh my gosh that’s a lengthy flare up. I think my sinus problems affect me similarly. My flare up lasted 2 months with a bout of flu on top I’m using a nasal saline spray and nasonex at the moment and mine seems to have settled Good luck xx

[Plantation-nut]

Hi Sunshine404,

I was prescribed Carbocysteine too but as someone else mentioned the side effects enforced a change to Acetylcysteine effervescent tablets. Carbo produced higher volumes of sputum than Acetyl but it's still not clearing the infection completely but keeping it at bay for now.

I'm still awaiting the results from the last three sputum tests so the consultant can plan the next moves. It's apparently a mycobacterium M Avium that may need a course of long term Antibiotics.

Good luck with it all !