Carol from the Aspergillus site explains ABPA

[Guest guest]

Below is a message from Carol, who moderates the aspergillus website.

This is about as clear of explanation of when fungus takes hold in the lungs as

I have ever seen. Carol is a smart woman. She has been advising people

with fungal lung conditions for many years.

Hi Larry: Welcome to the site. Unfortunately, as of right now, aspergillus

disease such as you have, also called Allergic Broncho Pulmonary

Aspergillosis (ABPA) is for ever. There is no cure. What it ends up is a big

allergy

to aspergillus and yet the aspergillus itself has the ability to grow

inside your lungs, so you end up allergic to yourself. The only way to handle

it

is to keep your lungs as dry as possible so that the aspergillus won't

grow. Some people can have one episode and then go for a long time without

having a flare up. Others have flare ups often. A lot of us on this site take

Sporanox (itraconazole) and will continue to take it for life. I have been

taking it since May of 1998 and take it at the 100 mg. a day dose as a

maintenance dose. Some on this site take Vfend (voriconazole) because for some

reason either the Sporanox wasn't working, or their doctors started them

from the beginning on Vfend (which is a lot more expensive). You can try to

build up your immunity, etc., but how to make yourself not react to

aspergillus is a problem and it appears once your body no longer defends itself

against the aspergillus it encounters, it is unable to do so ever, and also

the drug treatment does not necessarily kill of all the aspergillus in your

system but rather works to stop it from taking up nutrients, thereby

starving it. But aspergillus spores, instead of then dying, sometimes just go

dormant until it feels the conditions are right and then it just starts growing

again. So that is why a lot of us know we will be taking an antifungal for

life.

Take care. Carol at Tahoe

**************An Excellent Credit Score is 750. See Yours in Just 2 Easy

Steps!

(http://pr.atwola.com/promoclk/100126575x1222377040x1201454360/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=62 & bcd=Jun

eExcfooterNO62)

[Guest guest]

At 08:39 PM 6/1/2009, you wrote:

>Hi Larry: Welcome to the site. Unfortunately, as of right now, aspergillus

>disease such as you have, also called Allergic Broncho Pulmonary

>Aspergillosis (ABPA) is for ever. There is no cure.

I dislike " no cure " statements that come out of anyone's mouth.

So, this raised a red flag for me. I found some highly inaccurate

statements that I point out below. Wrong information like this

can harm people like us. Now, this " common " understanding

among lay people is common, and I might be surprised if I knew

more about Carol. She obviously cares. She could be right about

this illness.

Statements like this though might have resulted in my not

researching for treatments and cures, finding a cure, and

pursuing it. Which is why I do not like such definitive statements,

along with the fact the statement is not, not, not provable. Thus,

by saying it, the one fact that stated as true, but is false, puts

the rest of what is said with a huge grain of salt.

>What it ends up is a big allergy to aspergillus

Allergy is IgE response.

>and yet the aspergillus itself has the ability to grow

>inside your lungs, so you end up allergic to yourself.

Not giving the mechanism by how one becomes allergic, nor to

what in one's body you first become allergic to, and then finally

end up being allergic to (organs? molecule types? what?),

is another " unproven " statement.

>The only way to handle it

>is to keep your lungs as dry as possible so that the aspergillus won't

>grow.

Agreed. To a limit of being too dry, and causing other types of lung damage.

" as possible " should not be taken to extremes. Breathing 100% humidity

free air will kill you in several days or weeks.

>You can try to

>build up your immunity, etc., but how to make yourself not react to

>aspergillus is a problem and it appears once your body no longer

>defends itself

>against the aspergillus it encounters, it is unable to do so ever,

Basically correct, but very poorly worded, ambiguous, allowing the

reader interpretations that are wrong.

" Build up immunity " to the aspergillus is key. Not build up general

immunity as that brings on being allergic to one's own body. So,

this ambiguity would speed the illness and shorten one's life.

Bad information in my opinion.

" Unable to do so ever " is again one of those " no hope " statements,

not provable to be true. If one knows the current state of western

medicine's scientific understanding of the body, then one can see

there is a way, several to avoid this " ever " situation.

The mechanism of the immune system learning that the aspergillus

is not longer an invader and is to not be reacted to, should be explained.

Thus, one can avoid this.

>and also

>the drug treatment does not necessarily kill of all the aspergillus in your

>system but rather works to stop it from taking up nutrients, thereby

>starving it. But aspergillus spores, instead of then dying, sometimes just go

>dormant until it feels the conditions are right and then it just

>starts growing

>again. So that is why a lot of us know we will be taking an antifungal for

>life.

There are other mechanisms of germs to be " protected " in the body.

So, this incomplete information may result in extending the illness or

preventing full treatment.

Later this summer I will have detailed information online about these

things.

[Guest guest]

Pete, I have read where doctor's of sarcoidosis (spelling?) patients have

thought about recommending that their patients smoke. even though the illness is

idiopathic. of corse they didn't but it was documented as haveing the thought in

a few studies.

pickings of the lessors of evils maybe. med's vx. smoking.

but I smoke and am more or less kind of worried that if I quit, aspergillus

might kill me a little faster than the smokeing would.

and I've never been one to believe in any meds long term.

have any thoughts on smokeing vs. aspergillus meds?

>

> >Hi Larry: Welcome to the site. Unfortunately, as of right now, aspergillus

> >disease such as you have, also called Allergic Broncho Pulmonary

> >Aspergillosis (ABPA) is for ever. There is no cure.

>