Re: PF and Mold (hypersensitivity pneumonitis)

January 4, 2010

I agree, and 2 pulmo dudes agree, that mold caused my IPF as that the last apartment and my mother's house were infected with mold. I, also can't breath around fresh cut grass!

Ken O.

To: Breathe-Support Sent: Sun, January 3, 2010 2:16:38 PMSubject: PF and Mold (hypersensitivity pneumonitis)

I would like to respond to those who question mold as it is related to PF. I have PF and HP, NSIP, as well due to mold exposure having been consistent and extreme much of my life. I can assure anyone out there that there is a definite correlation to my mold exposure and a flare up of inflammation, bronchiectisis and more. My sensitivity is extreme and despite being on cytoxin I still have reactions to wind, rain with grass being the worst. Mold is in anything with water. You need NO potted plants in your house. So, if anyone tells you that mold can't cause PF then they need to re-do all my testing and biopsy as it sure does point to that as my primary problem. This doesn't mean that there aren't other things that I'm not aware of that also contribute. If you have a mold problem you need to run, not walk, from a wet climate to one like Arizona, New Mexico or Utah. Even then, please check the mold activity first at various times of year. If you

are living in a moldy home please get out of it ASAP. You will NOT get better until you do. Prednisone can keep it down but can't overcome an ongoing exposure. The good news here is that if you can remove yourself from the offending substances, use prednisone judiciously and take a lot of precautions as to where you go and what is in the air, you may be very stable over a long period of time. ann

January 5, 2010

Kind Sir: Do you know the name of mold that caused you problems?

I am fighting with a mold problem, however after I was dxed with IPF. My mold is called

cladosporium. It does not cause lung scaring or so the Internet says. This mold was in a small area of my house for many years--below the bedroom closet. Burns

Subject: Re: PF and Mold (hypersensitivity pneumonitis)To: Breathe-Support Date: Tuesday, January 5, 2010, 2:13 AM

I agree, and 2 pulmo dudes agree, that mold caused my IPF as that the last apartment and my mother's house were infected with mold. I, also can't breath around fresh cut grass!

Ken O.

From: smoo <mikefergg (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sun, January 3, 2010 2:16:38 PMSubject: PF and Mold (hypersensitivity pneumonitis)

I would like to respond to those who question mold as it is related to PF. I have PF and HP, NSIP, as well due to mold exposure having been consistent and extreme much of my life. I can assure anyone out there that there is a definite correlation to my mold exposure and a flare up of inflammation, bronchiectisis and more. My sensitivity is extreme and despite being on cytoxin I still have reactions to wind, rain with grass being the worst. Mold is in anything with water. You need NO potted plants in your house. So, if anyone tells you that mold can't cause PF then they need to re-do all my testing and biopsy as it sure does point to that as my primary problem. This doesn't mean that there aren't other things that I'm not aware of that also contribute. If you have a mold problem you need to run, not walk, from a wet climate to one like Arizona, New Mexico or Utah. Even then, please check the mold activity first at various times of year. If

you are living in a moldy home please get out of it ASAP. You will NOT get better until you do. Prednisone can keep it down but can't overcome an ongoing exposure. The good news here is that if you can remove yourself from the offending substances, use prednisone judiciously and take a lot of precautions as to where you go and what is in the air, you may be very stable over a long period of time. ann

January 5, 2010

While Cladosporium is ubiquitous in our environment and, therefore, hard

to isolate it can be a cause of hypersensitive pneumonitis and has been

attributed as a cause of hypersensitive pneumonitis induced NSIP. Here

are a few citations regarding that:

http://www.ncbi.nlm.nih.gov/pubmed/19252363

http://www.jstor.org/pss/4454984

http://www.greenguard.org/Default.aspx?tabid=120

http://jac.oxfordjournals.org/cgi/content/full/43/3/321

http://cat.inist.fr/?aModele=afficheN & cpsidt=14542853

There are many others out there.

>

> From: Overman kenover44@...

> Subject: Re: PF and Mold (hypersensitivity

pneumonitis)

> To: Breathe-Support

> Date: Tuesday, January 5, 2010, 2:13 AM

>

> Â

>

> I agree, and 2 pulmo dudes agree, that mold caused my IPF as that the

last apartment and my mother's house were infected with mold. I, also

can't breath around fresh cut grass!

> Â

> Ken O.

>

> From: smoo mikefergg (AT) yahoo (DOT) com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Sun, January 3, 2010 2:16:38 PM

> Subject: PF and Mold (hypersensitivity pneumonitis)

>

> Â

>

> I would like to respond to those who question mold as it is related to

PF. I have PF and HP, NSIP, as well due to mold exposure having been

consistent and extreme much of my life. I can assure anyone out there

that there is a definite correlation to my mold exposure and a flare up

of inflammation, bronchiectisis and more. My sensitivity is extreme and

despite being on cytoxin I still have reactions to wind, rain with grass

being the worst. Mold is in anything with water. You need NO potted

plants in your house.

>

> So, if anyone tells you that mold can't cause PF then they need to

re-do all my testing and biopsy as it sure does point to that as my

primary problem. This doesn't mean that there aren't other things that

I'm not aware of that also contribute. If you have a mold problem you

need to run, not walk, from a wet climate to one like Arizona, New

Mexico or Utah. Even then, please check the mold activity first at

various times of year. If you are living in a moldy home please get out

of it ASAP. You will NOT get better until you do. Prednisone can keep it

down but can't overcome an ongoing exposure.

>

> The good news here is that if you can remove yourself from the

offending substances, use prednisone judiciously and take a lot of

precautions as to where you go and what is in the air, you may be very

stable over a long period of time.

>

> ann

>

January 6, 2010

Bruce,

Thanks so much for the links pertaining to mold induced IPF. After my trip to

National Jewish, I am left with more questions and NO answers as they have not

yet seen fit to contact me with a final evaluation.

I will contact them next week if nothing is heard before then. It has been

three months. They were waiting for my biopsy slides from University of

Tennessee which were sent to them Oct 20 and UT already has the NJ report back.

Hummmmmm.... seems like quite a wait to me!

My treatment seems to hinge on that report showing inflammation or not. I was

so sick when there that I was unable to follow through for them. When I offered

a sputum specimen I had collected in a ziplock, the nurse just smiled and deemed

it unsuitable with no offer of an alternative.

Also they didn't say anything about any titers for mold antigens. They failed

twice to follow through on a culture that Dr. Hines said I needed both days I

saw her. Maybe I just hit one of those " cracks " people talk about falling

through. Having spent hundreds of dollars and several days to be seen there,

the results have been disappointing.

Meanwhile my new-found " general " pulmo here has done 3 cultures, changed to

Levaquin for 2 weeks and I am back to normal living. Before that I had been on

4 different antibiotics with no lasting improvement, spending 3 months on the

sofa, unable to accomplish the smallest task. Dr. Hines at Jewish all but

completely ignored my bronchiectasis, never mentioning the condition, let alone

addressing the infection I had when there.

Simply put, every physician I have seen up until Dr. Saifee (new pulmo) has

brushed me off with a 7 or 10 day antibiotic Rx and sad expression. My

internist is included here. Maybe gray hair and a terminal disease leaves them

depressed? I really do hate that! LOL

ann 68 y/o with Interstitial Pneumonitis, NSIP? HP, PF developing from

1997

January 6, 2010

glad you finally found someone who is able to help you

interesting that you said less than positive stuff about nat'l Jewish in Denver

everyone else here thinks it is the best

it's always good to hear a different point of view

sorry it didn't meet your expectation

usually they want the sputum collected in a sterile container

my docs have given me sterile containers to keep at home

then the specimen has to be take to the local hospital lab quickly for culture

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: PF and Mold (hypersensitivity pneumonitis)To: Breathe-Support Date: Wednesday, January 6, 2010, 12:06 PM

Bruce,Thanks so much for the links pertaining to mold induced IPF. After my trip to National Jewish, I am left with more questions and NO answers as they have not yet seen fit to contact me with a final evaluation.I will contact them next week if nothing is heard before then. It has been three months. They were waiting for my biopsy slides from University of Tennessee which were sent to them Oct 20 and UT already has the NJ report back. Hummmmmm.... seems like quite a wait to me! My treatment seems to hinge on that report showing inflammation or not. I was so sick when there that I was unable to follow through for them. When I offered a sputum specimen I had collected in a ziplock, the nurse just smiled and deemed it unsuitable with no offer of an alternative. Also they didn't say anything about any titers for mold antigens. They failed twice to follow through on a culture that Dr. Hines said I needed both

days I saw her. Maybe I just hit one of those "cracks" people talk about falling through. Having spent hundreds of dollars and several days to be seen there, the results have been disappointing. Meanwhile my new-found "general" pulmo here has done 3 cultures, changed to Levaquin for 2 weeks and I am back to normal living. Before that I had been on 4 different antibiotics with no lasting improvement, spending 3 months on the sofa, unable to accomplish the smallest task. Dr. Hines at Jewish all but completely ignored my bronchiectasis, never mentioning the condition, let alone addressing the infection I had when there. Simply put, every physician I have seen up until Dr. Saifee (new pulmo) has brushed me off with a 7 or 10 day antibiotic Rx and sad expression. My internist is included here. Maybe gray hair and a terminal disease leaves them depressed? I really do hate that! LOLann 68 y/o with Interstitial Pneumonitis, NSIP?

HP, PF developing from 1997

January 6, 2010

Mike

You say they haven't contacted you. If that were my situation, then I

would contact them immediately and continuously until I found out

something.

As to sputum brought in a zip lock bag it doesn't surprise me they

wouldn't test that.

It also shows we could all go to the same hospital and have different

experiences. This could be based on coincidence, who we saw, random

luck, someone's mood on that day or their concentration that day when

dealing with us, the number of patients that day, or even our ability to

communicate effectively with them on that given day. I had my VATS

locally in a hospital that consistently has outstanding patient reviews,

but I can assure you nothing went well during my time there. The

anesthesia wore off too soon, they failed to hook up the suction pump,

they didn't come to walk me, they failed to do a prescribed CT, they had

problems supplying my meds, they showed me as no longer in the hospital

after moving me to another floor, I was in 4 different rooms in 5 days,

and they billed me for two rooms in one day and then couldn't understand

why my insurance would only pay for one patient room per day.

>

> From: smoo mikefergg@...

> Subject: Re: PF and Mold (hypersensitivity

pneumonitis)

> To: Breathe-Support

> Date: Wednesday, January 6, 2010, 12:06 PM

>

> Â

>

> Bruce,

>

> Thanks so much for the links pertaining to mold induced IPF. After my

trip to National Jewish, I am left with more questions and NO answers as

they have not yet seen fit to contact me with a final evaluation.

>

> I will contact them next week if nothing is heard before then. It has

been three months. They were waiting for my biopsy slides from

University of Tennessee which were sent to them Oct 20 and UT already

has the NJ report back. Hummmmmm.... seems like quite a wait to me!

>

> My treatment seems to hinge on that report showing inflammation or

not. I was so sick when there that I was unable to follow through for

them. When I offered a sputum specimen I had collected in a ziplock, the

nurse just smiled and deemed it unsuitable with no offer of an

alternative.

>

> Also they didn't say anything about any titers for mold antigens. They

failed twice to follow through on a culture that Dr. Hines said I needed

both days I saw her. Maybe I just hit one of those " cracks " people talk

about falling through. Having spent hundreds of dollars and several days

to be seen there, the results have been disappointing.

>

> Meanwhile my new-found " general " pulmo here has done 3 cultures,

changed to Levaquin for 2 weeks and I am back to normal living. Before

that I had been on 4 different antibiotics with no lasting improvement,

spending 3 months on the sofa, unable to accomplish the smallest task.

Dr. Hines at Jewish all but completely ignored my bronchiectasis, never

mentioning the condition, let alone addressing the infection I had when

there.

>

> Simply put, every physician I have seen up until Dr. Saifee (new

pulmo) has brushed me off with a 7 or 10 day antibiotic Rx and sad

expression. My internist is included here. Maybe gray hair and a

terminal disease leaves them depressed? I really do hate that! LOL

>

> ann 68 y/o with Interstitial Pneumonitis, NSIP? HP, PF

developing from 1997

>

January 6, 2010

by the same token

hospital personnel might view various patients in different ways

some patients are easier to deal with than others

doubt that this is your case, but that is always a possibility

you went through quite an ordeal

that's why it's good to have someone with you to speak up on your behalf

sounds like you were in no shape to speak up for yourself at the time

my ex being on a ventilator with no voice at all, has someone sleep at the hospital with him whenever he goes in, he has no way of communicating with hospital staff

my kids even did a fundraiser to make a room in ICU in Bruce's name that would enable family members to sleep there when patients like Bruce are admitted

i think it is called the Bruce Rosenberg Suite of Hope at Hahnemann hospital

a couple of years ago when Jerry was in ICU at the local hospital, they watched out for me too

they even gave me oxygen to use

i didn't go home until he was stable

then when he was in the Jefferson ER, they gave me lunch and dinner while we waited for him to be admitted

so it is important to have someone there to watch out for you

right now i am very talkative on here and talking about anything

more than usual

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: PF and Mold (hypersensitivity pneumonitis)To: Breathe-Support Date: Wednesday, January 6, 2010, 2:50 PM

MikeYou say they haven't contacted you. If that were my situation, then Iwould contact them immediately and continuously until I found outsomething.As to sputum brought in a zip lock bag it doesn't surprise me theywouldn't test that.It also shows we could all go to the same hospital and have differentexperiences. This could be based on coincidence, who we saw, randomluck, someone's mood on that day or their concentration that day whendealing with us, the number of patients that day, or even our ability tocommunicate effectively with them on that given day. I had my VATSlocally in a hospital that consistently has outstanding patient reviews,but I can assure you nothing went well during my time there. Theanesthesia wore off too soon, they failed to hook up the suction pump,they didn't come to walk me, they failed to do a prescribed CT, they hadproblems supplying my meds, they

showed me as no longer in the hospitalafter moving me to another floor, I was in 4 different rooms in 5 days,and they billed me for two rooms in one day and then couldn't understandwhy my insurance would only pay for one patient room per day.>>> From: smoo mikefergg@.. .> Subject: Re: PF and Mold (hypersensitivitypneumonitis)> To: Breathe-Support@ yahoogroups. com> Date: Wednesday, January 6, 2010, 12:06 PM>>> Ã‚>>>>>> Bruce,>> Thanks so much for the links pertaining to mold

induced IPF. After mytrip to National Jewish, I am left with more questions and NO answers asthey have not yet seen fit to contact me with a final evaluation.>> I will contact them next week if nothing is heard before then. It hasbeen three months. They were waiting for my biopsy slides fromUniversity of Tennessee which were sent to them Oct 20 and UT alreadyhas the NJ report back. Hummmmmm.... seems like quite a wait to me!>> My treatment seems to hinge on that report showing inflammation ornot. I was so sick when there that I was unable to follow through forthem. When I offered a sputum specimen I had collected in a ziplock, thenurse just smiled and deemed it unsuitable with no offer of analternative.>> Also they didn't say anything about any titers for mold antigens. Theyfailed twice to follow through on a culture that Dr. Hines said I neededboth days I saw her.

Maybe I just hit one of those "cracks" people talkabout falling through. Having spent hundreds of dollars and several daysto be seen there, the results have been disappointing.>> Meanwhile my new-found "general" pulmo here has done 3 cultures,changed to Levaquin for 2 weeks and I am back to normal living. Beforethat I had been on 4 different antibiotics with no lasting improvement,spending 3 months on the sofa, unable to accomplish the smallest task.Dr. Hines at Jewish all but completely ignored my bronchiectasis, nevermentioning the condition, let alone addressing the infection I had whenthere.>> Simply put, every physician I have seen up until Dr. Saifee (newpulmo) has brushed me off with a 7 or 10 day antibiotic Rx and sadexpression. My internist is included here. Maybe gray hair and aterminal disease leaves them depressed? I really do hate that! LOL>> ann 68

y/o with Interstitial Pneumonitis, NSIP? HP, PFdeveloping from 1997>

January 6, 2010

Pink

I know a couple of the problems in my situation. First, the hospital was

still less than a year old so infancy pains. Second, it is a HEART

hospital....notice HEART capitalized. With heart bypasses being done all

around me and heart attack patients and everything else, I was low man

on the totem pole. It is located next to the main hospital and all heart

and lung procedures are done now in the Heart Hospital. In ranking

seriousness of what I was there for, I would have been one of the least

serious and important patients in the facility. I had a previous surgery

in the main hospital next door and the service I received was at a far

different level of attention and professionalism.

> >

> > From: smoo mikefergg@ .

> > Subject: Re: PF and Mold (hypersensitivity

> pneumonitis)

> > To: Breathe-Support@ yahoogroups. com

> > Date: Wednesday, January 6, 2010, 12:06 PM

> >

> > Ã‚

> >

> > Bruce,

> >

> > Thanks so much for the links pertaining to mold induced IPF. After

my

> trip to National Jewish, I am left with more questions and NO answers

as

> they have not yet seen fit to contact me with a final evaluation.

> >

> > I will contact them next week if nothing is heard before then. It

has

> been three months. They were waiting for my biopsy slides from

> University of Tennessee which were sent to them Oct 20 and UT already

> has the NJ report back. Hummmmmm.... seems like quite a wait to me!

> >

> > My treatment seems to hinge on that report showing inflammation or

> not. I was so sick when there that I was unable to follow through for

> them. When I offered a sputum specimen I had collected in a ziplock,

the

> nurse just smiled and deemed it unsuitable with no offer of an

> alternative.

> >

> > Also they didn't say anything about any titers for mold antigens.

They

> failed twice to follow through on a culture that Dr. Hines said I

needed

> both days I saw her. Maybe I just hit one of those " cracks " people

talk

> about falling through. Having spent hundreds of dollars and several

days

> to be seen there, the results have been disappointing.

> >

> > Meanwhile my new-found " general " pulmo here has done 3 cultures,

> changed to Levaquin for 2 weeks and I am back to normal living. Before

> that I had been on 4 different antibiotics with no lasting

improvement,

> spending 3 months on the sofa, unable to accomplish the smallest task.

> Dr. Hines at Jewish all but completely ignored my bronchiectasis,

never

> mentioning the condition, let alone addressing the infection I had

when

> there.

> >

> > Simply put, every physician I have seen up until Dr. Saifee (new

> pulmo) has brushed me off with a 7 or 10 day antibiotic Rx and sad

> expression. My internist is included here. Maybe gray hair and a

> terminal disease leaves them depressed? I really do hate that! LOL

> >

> > ann 68 y/o with Interstitial Pneumonitis, NSIP? HP, PF

> developing from 1997

> >

>

January 6, 2010

I'm not sure it is a problem with National Jewish. Everyone there was great

during testing and scheduling. It would be mainly the problem with the Dr. I was

assigned. I liked Dr. Hines; and she was very good about explaining the test

results. Still, she never mentioned the bronchiectasis which was evident in all

five lobes on the scan. I was coughing, congested and having a hard time

completing tests. I don't think I had any titers run for mold etc. I did have

some limited skin testing for allergies.

The reports I got never mentioned the need for a culture even though she had

twice said she would have one collected, thus my feeble attempt at helping them

out. Being a nurse myself, that would have been a clue that I should check on

collecting one. That one oversight has cost me nearly 3 months of sickness and

misery. Not good.

As for my promised follow up call, that would also be left in her court at this

point. She had a Dr. working under her, can't remember the term, that was to do

the follow up call. So, I will check next week (give them time over holidays)

and see what the holdup is. I am trying not to be unreasonable but, in

retrospect, my outcome has been less than stellar. Of course, that could change

with one phone call. I will hope for the best and keep you posted.

I have also been in touch with NJ about my ongoing infection and they could

offer no help but to see my internist who sent me to urgent care and so on. I

do understand why they couldn't help me. Thank heaven I finally got in to the

new pulmo on the 21st. In less than two weeks I am a new person!!!

ann

January 6, 2010