Ignored aspergillosis

[Quimera]

April 30, 2013

Hello kind readers,

Please forgive graphic detail in my story. There is a bit of it.

Upon having a cough that was persistent and produced black/blackish sputum, I was sent to a pulmonologist, who diagnosed my condition as aspergillosis -- I was not told what kind. This was about two and a half years ago. I went by prescribed treatment and became better.

For reasons I won't belabor, I was quite aware that the infection had returned in the fall of 2011.

Again, for reasons I choose not to get into, I have ignored this development and continued to live as though I didn't have the infection (i.e. not seeing a physician, continuing to engage in behaviors that I know are bad for aspergillosis patients.

The presence of the aspergillosis is about the same as ever. I have a productive cough, again black/blackish. The difference this time is that about a year and a half has passed since this has been the case and I have done nothing to address it.

I can not seem to find information about the development and progression of this disease, and am wondering if I am playing with fire.

How dangerous is Aspergillosis?

i am not sure if this information is pertinent, but I am a two-time cancer survivor (colon, bladder), and suffer from various auto-immune diseases (colitis, interstitial cystitis, CFIDS, fibromyalgia). I had rheumatic fever as a child. I am disabled from the second cancer and its treatment (serious pain and walking issues as well as radiation syndrome resulting from nerve damage in lower spine, etc.).

This is something extremely personal to me; confidentiality is appreciated.

Thank you in advance,

JDM

California

[Coppernob]

HI JDM/Quimera, I can't authoritatively answer your question but I have had similar experiences and am now being treated for suspected ABPA (allergic bronchopulmonary aspergillosis).

I understand that if aspergillosis is allowed to become invasive it can indeed be very serious indeed. I would strongly recommend (and I'm no fan of medics!) you do seek further investigation and treatment.

But also research the treatment options - many of the orthodox ones cause as much trouble as they 'cure', as I'm finding. Steroids, for instance - I think I'm getting every conceivable side effect and am anxious to get off the buggers asap!

Send updates, please, that would be very useful. And good luck!

[GAtherton Administrator Fungal Infection Trust]

This sounds rather like ABPA though only your pulmonologist will know for sure. It is not currently curable but is managed effectively using steroids and often an oral antifungal is used in combination.

The message you need to take on board is that is it manageable and needs to be managed, so go back to your doctor for further assessment.

If your cancer treatment involved immune suppression it may have had some effect but we don't know too much about this - ABPA seems to be confined to certain people so genetic factors are possible. ABPA can rarely become CPA where the lung is very slowly eroded (this is NOT the same as invasive aspergillosis) so please do seek medical advice.

[TONYALEWIS]

Hi My Name Is Tonya Lewis I Have Apergillosis I Had It For About 3years And Was On V-Fend For 3Years Not Taking The V-Fend Now My Infection Disease Doctor Told Me To Stop Taking The V-Fend For Now.Doing Fine Without It I Still Have Feel Tired ,Coughing Ever Now And Then But Like I Said Feeling Fine.

[alexamarie]

You have been exposed to mold. Aspergillis and so have I. This causes all your ailments from cancer to autoimmune.I hope you were able to move out of your building. I have the same symptoms except no cancer. Not sure what DFIDS is?

[alexamarie]

Sorry, I may have your diagnosis incorrect. Forgive me if I am wrong. I am thinking of Aspergilliosis due to mold exposure?? I hope I am correct, if so I do suffer the same effects but do not have Aspergilliosis as we found the mold before it got to bad. I do have nodules on my lungs and I am going to have a Bronchoscopy to see if it is indeed fungal.

[Violethealt in reply to alexamarie]

Hi Alexamarie, how is your condition now? May i know what kind of medical treatment that you took after bronchoscopy?