CLL Support Association
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Aspergillosis - severe dangerous respiratory ailment

Has anyone heard of this very dangerous infection of the lungs? It is most often found in AIDS or Leukemia patients using chemotherapy. They say it kills tens of thousands annually, is hard to diagnose, takes six to nine months to resolve. I am just learning about it, before I see my pulmonologist. It is hard to detect as it masks itself as other diseases. Common symptoms - coughing, shortness of breath, wheezing, fatigue and weakness/achiness. The most common tests for it are an injection of the disease under the surface of the skin or a sample of sputum.

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Oh boy.. I have had it for two months... the cure is awful... long list of side effects, and drug interactions...

The other fungal infection is PJP, formally PCP, seen sometimes in patients in treatment for CLL.

~chris

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Yes this can be bad news, and difficult to treat.

See this website for loads of information. aspergillus.org.uk/

Dick

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Push for answers with him Irishgreek. You shouldn’t have to keep suffering like this. Good luck!

Newdawn

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Thank you for highlighting Asperfillosis, I have realised my home makes me at risk of this and will now take heed of the following information as I am on ibrutinib.

nhs.uk/conditions/aspergill...

I also have found this medical article about Aspergillosis and Ibrutinib ncbi.nlm.nih.gov/pmc/articl...

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This paper was published today on this topic in Blood Journal

bloodjournal.org/content/ea...

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There are several lung fungus candidates, Aspergillosis seems to be the really nasty one, but there are others like:

en.wikipedia.org/wiki/Pneum...

It appears they all are tough to treat but can be prevented with simple prophylaxis. I'm on Bactrim 3 pills per 7 days ( yes it is an antibiotic but also the most effective pneumocystis fungal preventive)

Len

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Be very careful, aspergillosis is hard to diagnose and sometimes mistakes can be made.

Several years ago during treatment for a long series of lung infections, a sputum sample tested positive for aspergillosis. Voriconazole 200 mgs twice a day was prescribed, but stopped after six weeks because I showed no improvement and was having drug induced hallucinations and liver enzyme irregularities. My doctors then concluded the original sputum sample may have been contaminated and I resumed successful treatment for a bacterial infection.

You may want a second opinion on an aspergillosis diagnosisis

Good luck,

Owen

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I do not have aspergillosis, to my knowledge. I believe it can also take root in sinuses and even the ear, though, as can other molds.

Molds are everywhere, and impossible to avoid completely.

After Hurricane Katrina, mold remediation businesses sprouted like ... mold. When mold is visible on walls, there's a drastic demolition strategy. But often, it's not visible, and people get respiratory diseases from mold in their home ventilation system. Contractors take advantage of consumer fear, and may recommend drastic action. So I think it's best to have a separate, certified mold testing company sample surfaces around the house and in air conditioning systems.

In the U.S., I recommend going to the Better Business Bureau to get a list of local testing companies with an A+ rating, if they even exist in your area. Search on mold testing.

bbb.org/

The feds have several advice sites with additional links:

cdc.gov/mold/cleanup.htm

epa.gov/mold/mold-cleanup-y...

If testing shows high counts - not just the presence, but high counts per square inch in key places, you then need to do some serious cleaning.

One rule of thumb is to simply replace all ductwork in your heating/air condition system if you can. Some services will claim to be able to clean such ducts. If they are solid metal, perhaps it's possible. But if they are flexible, it's best to rip them out and replace them.

Thorough cleaning of the heat exchanger and all plenum spaces - the box(es) that the ducts connect to - is also necessary.

Finally, adding certified biofilters may be necessary. At least get as restrictive a filter as your home system will allow. When we had our system done in New Orleans, we replaced everything, because the old system was 20 years old. I had them put in an extra strong fan so I could use much more restrictive filters.

But even with that, we have high humidity, and condensation inside the system is pretty much inevitable until externally heated duct work becomes common. So we're weighing when to replace the flexi duct, and have a cleaning done again. I'm also looking at whole-home dehumidifiers. Plus we're thinking moving to a different city might be the easiest fix of all.

If you use a CPAP, get an activated carbon filter for your hose:

cpap.com/cpap-filters/bacte...

My pulmonologist gave me a handful to start. It's not a sure thing, but it's much, much better than the incredibly expensive, but almost useless fiber filters that come with most CPAPs and BiPAPs. Check with your respiratory suppliers if your CPAP pressure needs to be adjusted when adding these. They are cheapest to buy on eBay and Amazon, by the way.

=seymour=

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