New Member

[Guest guest]

not all of the docs know too much about ILD's either

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: new memberTo: Breathe-Support Date: Sunday, December 27, 2009, 5:51 PM

 Beth,

It makes sense. Hope my questions are not too silly. I do not know much about ILD and the docs do not always get easy answers. I appreciate your help.

Donna

Re: new member

Donna,Welcome to this wonderful Air Family even though I'm sure it's the last place you'd ever want to qualify to join.You have been given some absolutely terrific advice so far from this group, but I just want to share one additional thing about the possible rheumatology indications in your blood work up. My pulmonologist did the exact same thing w/me & my rheumatologist also said the same as yours after taking several X-rays of my joints. Despite that non-diagnosis, my pulmodoc is still pretty convinced I have RA based on really convincing repeat blood tests & he plans to start treating me for it in January w/Prednisone. He claims to have known patients like me who didn't outwardly manifest RA for another couple years after the initial diagnosis.Granted, he's not a Center of Excellence pulmodoc because my insurance won't pay for that & he often really ticks me off for what I consider a lack of treatment,

but this time he seems to be actually pushing me to try a treatment that has worked for many ILD/PF patients w/an additional interconnective tissue disease like RA.The operative phrase here is that treatment OFTEN WORKS for these patients & can extend their life expectancy dramatically. So make sure you get all the information possible & don't just rely on a local RA doc. There are people on this board who have gone 3 years with ILD/PF before finally being diagnosed with underlying RA.BTW Bruce, your advice to Donna was so absolutely perfect & succinct that I think much of it (minus the cardiac info) would be a great addition to our book. Hope that's OK w/you.Cees, S CalifIPF/UIP 10/08> > >>

> > I am new to the group. I went to the ER September 14th for shortness> > of breath and extreme fatigue. My CT showed scarring in my lungs and I> > had a blocked coronary artery. I had a stent put in my artery the next> > day. My pulmonologist performed a lung function test and determined> > that I have interstitial lung disease (moderately severe). He then> > performed a broncoscopy but did not get a diagnosis. He wants to do an> > open lung biopsy but the cardiologist does not want me to stop taking> > Plavix and it is dangerous to have the surgery. I am not waiting until> > June to see if I can stop the Plavix for the biopsy. I feel like I am> > in limbo waiting. I have good days and days with much shortness of> > breath. I am not on oxygen yet. Will the wait make things much worse> > for my lungs? Thanks for your help...> >

>> >>

[Guest guest]

there is no such thing as a silly, stupid or dumb question

they are real questions that people are wanting answers to

whether or not there are answers is another story

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: new memberTo: Breathe-Support Date: Sunday, December 27, 2009, 5:51 PM

 Beth,

It makes sense. Hope my questions are not too silly. I do not know much about ILD and the docs do not always get easy answers. I appreciate your help.

Donna

Re: new member

Donna,Welcome to this wonderful Air Family even though I'm sure it's the last place you'd ever want to qualify to join.You have been given some absolutely terrific advice so far from this group, but I just want to share one additional thing about the possible rheumatology indications in your blood work up. My pulmonologist did the exact same thing w/me & my rheumatologist also said the same as yours after taking several X-rays of my joints. Despite that non-diagnosis, my pulmodoc is still pretty convinced I have RA based on really convincing repeat blood tests & he plans to start treating me for it in January w/Prednisone. He claims to have known patients like me who didn't outwardly manifest RA for another couple years after the initial diagnosis.Granted, he's not a Center of Excellence pulmodoc because my insurance won't pay for that & he often really ticks me off for what I consider a lack of treatment,

but this time he seems to be actually pushing me to try a treatment that has worked for many ILD/PF patients w/an additional interconnective tissue disease like RA.The operative phrase here is that treatment OFTEN WORKS for these patients & can extend their life expectancy dramatically. So make sure you get all the information possible & don't just rely on a local RA doc. There are people on this board who have gone 3 years with ILD/PF before finally being diagnosed with underlying RA.BTW Bruce, your advice to Donna was so absolutely perfect & succinct that I think much of it (minus the cardiac info) would be a great addition to our book. Hope that's OK w/you.Cees, S CalifIPF/UIP 10/08> > >>

> > I am new to the group. I went to the ER September 14th for shortness> > of breath and extreme fatigue. My CT showed scarring in my lungs and I> > had a blocked coronary artery. I had a stent put in my artery the next> > day. My pulmonologist performed a lung function test and determined> > that I have interstitial lung disease (moderately severe). He then> > performed a broncoscopy but did not get a diagnosis. He wants to do an> > open lung biopsy but the cardiologist does not want me to stop taking> > Plavix and it is dangerous to have the surgery. I am not waiting until> > June to see if I can stop the Plavix for the biopsy. I feel like I am> > in limbo waiting. I have good days and days with much shortness of> > breath. I am not on oxygen yet. Will the wait make things much worse> > for my lungs? Thanks for your help...> >

>> >>

[Guest guest]

Donna, I want to welcome you here

as well.

There is no such thing as a dumb question!!!

You've been handed a diagnosis with little or no explanation...

of course you have questions!

You've found the best group of people with most of the answers...if we

don't have an answer we'll

research it!!!!

All the information from Bruce and Beth is right -on!!!

Keep you attitude positive, energy directed in positive ways with

positive people

to help you.  Take the help, get an oximeter, get to an ILD center of

excellence. and

remember that we're here!!!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild†PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara 

    

“I’m

gonna be iron like a lion in Zionâ€Â  Bob Marley

Vinca

Minor-periwinkle is my flower

 

 

Donna & Monte wrote:

 



Beth,

It makes sense.  Hope my questions

are not too silly.  I do not know much about ILD and the docs do not

always get easy answers.  I appreciate your help.

 

Donna

-----

Original Message -----

From:

Beth

To:

Breathe-Support

Sent:

Sunday, December 27, 2009 4:56 PM

Subject:

Re: Re: new member

 

Donna,

The biopsy would not show a cause of your fibrosis. What it

would show is what type of fibrosing lung condision you have. Some are

more typically associated with auto immune/connective tissue diseases

than others. What diagnoses the RA is bloodwork and even then it can

take multiple tries of the same blood test before it finally shows up. 

 

To use myself as an example, my lung biopsy in 2006 showed

that I have fibrotic NSIP. NSIP is commonly associated with connective

tissue disease and two years later in late 2008 I was finally

diagnosed with dermatomyositis an inflammatory muscle condition that

sometimes causes pulmonary fibrosis. I am now being treated

specifically for the dermatomyositis with the intention of controling

it and slowing the progress of my lung disease.

 

It can take a long time to chase down these diagnosis' but

it's worth the effort since treating the connective tissue

disease often stablizes the lung disease.

 

Hope that makes some sense.

 

Beth

Moderator

Fibrotic

NSIP 06/06 Dermatomyositis 11/08

 

 

From:

Donna & Monte <dmkemper (AT) comcast (DOT) net>

To: Breathe-Support

Sent: Sun, December

27, 2009 4:05:48 PM

Subject: Re:

Re: new member

 

Cees,

Thank you for this info.  You all

have made me feel welcome and not so alone.

 

I feel my pulmonologist thinks I

have a RA disease also.  I had x-rays and the rheumatologist said I

just have moderate arthritis.  My thumbs hurt so bad sometimes.  Would

a lung biopsy prove it to be the cause of ILD?  I so hope the meds help you.  Please keep us

informed.Thanks again...

 

Donna 

 

 

-----

Original Message -----

From:

ceesnews

To:

Breathe-Support@

yahoogroups. com

Sent:

Sunday, December 27, 2009 3:41 PM

Subject:

Re: new member

 

Donna,

Welcome to this wonderful Air Family even though I'm sure it's the last

place you'd ever want to qualify to join.

You have been given some absolutely terrific advice so far from this

group, but I just want to share one additional thing about the possible

rheumatology indications in your blood work up.

My pulmonologist did the exact same thing w/me & my rheumatologist

also said the same as yours after taking several X-rays of my joints.

Despite that non-diagnosis, my pulmodoc is still pretty convinced I

have RA based on really convincing repeat blood tests & he plans to

start treating me for it in January w/Prednisone. He claims to have

known patients like me who didn't outwardly manifest RA for another

couple years after the initial diagnosis.

Granted, he's not a Center of Excellence pulmodoc because my insurance

won't pay for that & he often really ticks me off for what I

consider a lack of treatment, but this time he seems to be actually

pushing me to try a treatment that has worked for many ILD/PF patients

w/an additional interconnective tissue disease like RA.

The operative phrase here is that treatment OFTEN WORKS for these

patients & can extend their life expectancy dramatically. So make

sure you get all the information possible & don't just rely on a

local RA doc. There are people on this board who have gone 3 years with

ILD/PF before finally being diagnosed with underlying RA.

BTW Bruce, your advice to Donna was so absolutely perfect &

succinct that I think much of it (minus the cardiac info) would be a

great addition to our book. Hope that's OK w/you.

Cees, S Calif

IPF/UIP 10/08

> > >

> > > I am new to the group. I went to the ER September 14th

for shortness

> > of breath and extreme fatigue. My CT showed scarring in my

lungs and I

> > had a blocked coronary artery. I had a stent put in my artery

the next

> > day. My pulmonologist performed a lung function test and

determined

> > that I have interstitial lung disease (moderately severe). He

then

> > performed a broncoscopy but did not get a diagnosis. He wants

to do an

> > open lung biopsy but the cardiologist does not want me to

stop taking

> > Plavix and it is dangerous to have the surgery. I am not

waiting until

> > June to see if I can stop the Plavix for the biopsy. I feel

like I am

> > in limbo waiting. I have good days and days with much

shortness of

> > breath. I am not on oxygen yet. Will the wait make things

much worse

> > for my lungs? Thanks for your help...

> > >

> >

>

[Guest guest]

I am going to comment on this, This also could be that you Hypoxic which means not enough oxygen. I had symptoms of fibromyalga for months until I got on oxygen 24/7 and felt 100 % better. Check those o2's Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009From: Donna & Monte

To: Breathe-Support Sent: Sun, December 27, 2009 3:05:48 PMSubject: Re: Re: new member

Cees,

Thank you for this info. You all have made me feel welcome and not so alone.

I feel my pulmonologist thinks I have a RA disease also. I had x-rays and the rheumatologist said I just have moderate arthritis. My thumbs hurt so bad sometimes. Would a lung biopsy prove it to be the cause of ILD? I so hope the meds help you. Please keep us informed.Thanks again...

Donna

Re: new member

Donna,Welcome to this wonderful Air Family even though I'm sure it's the last place you'd ever want to qualify to join.You have been given some absolutely terrific advice so far from this group, but I just want to share one additional thing about the possible rheumatology indications in your blood work up. My pulmonologist did the exact same thing w/me & my rheumatologist also said the same as yours after taking several X-rays of my joints. Despite that non-diagnosis, my pulmodoc is still pretty convinced I have RA based on really convincing repeat blood tests & he plans to start treating me for it in January w/Prednisone. He claims to have known patients like me who didn't outwardly manifest RA for another couple years after the initial diagnosis.Granted, he's not a Center of Excellence pulmodoc because my insurance won't pay for that & he often really ticks me off for what I consider a lack of treatment, but this time he seems to be actually pushing me to try a treatment that has worked for many ILD/PF patients w/an additional interconnective tissue disease like RA.The operative phrase here is that treatment OFTEN WORKS for these patients & can extend their life expectancy dramatically. So make sure you get all the information possible & don't just rely on a local RA doc. There are people on this board who have gone 3 years with ILD/PF before finally being diagnosed with underlying RA.BTW Bruce, your advice to Donna was so absolutely perfect & succinct that I think much of it (minus the cardiac info) would be a great addition to our book. Hope that's OK w/you.Cees, S CalifIPF/UIP 10/08> > >> > > I am new to the group. I went to the ER September 14th for shortness> > of breath and extreme fatigue. My CT showed scarring in my lungs and I> > had a blocked coronary artery. I had a stent put in my artery the next> > day. My pulmonologist performed a lung function test and determined> > that I have interstitial lung disease (moderately severe). He then> > performed a broncoscopy but did not get a diagnosis. He wants to do an> > open lung biopsy but the cardiologist does not want me to stop taking> > Plavix and it is dangerous to have the surgery. I am not waiting until> > June to see if I can stop the Plavix for the biopsy. I feel like I am> > in limbo waiting. I have good days and days with much shortness of> > breath. I am not on oxygen yet. Will the wait make things much worse> > for my lungs? Thanks for your help...> > >> >>

[Guest guest]

Bruce,

Just received my oximeter today. I decided to do my own 6 minute walk at home for my own peace of mind. My reading started at 98 and after 8 minutes it was 85. Think I better phone my pulmonologist Monday...

Re: new member

DonnaI personally wouldn't wait until March to schedule at one but yourpulmonologist should be in favor. We're not talking about respect for apulmonologist but we're talking about what they deal with every day. AnILD center only deals with ILD's. A typical pulmonologist will have nomore than 1 or 2 patients with ILD's and some have none. I have a greatlocal pulmonologist who does have PF experience, but I still go to ILDcenters for more expertise. My local rheumatologist, I also respectgreatly, but he's the one pushing me hard to go to Duke for anotherreview.There is just too much disconnect when you're told "moderately severe"and you're not put on oxygen. Did you have a 6 minute walk test?> > > >> > > > I am new to the group. I went to the ER September 14th for> shortness> > > of breath and extreme fatigue. My CT showed scarring in my lungs> and I> > > had a blocked coronary artery. I had a stent put in my arterythe> next> > > day. My pulmonologist performed a lung function test anddetermined> > > that I have interstitial lung disease (moderately severe). Hethen> > > performed a broncoscopy but did not get a diagnosis. He wants todo> an> > > open lung biopsy but the cardiologist does not want me to stop> taking> > > Plavix and it is dangerous to have the surgery. I am not waiting> until> > > June to see if I can stop the Plavix for the biopsy. I feel likeI> am> > > in limbo waiting. I have good days and days with much shortnessof> > > breath. I am not on oxygen yet. Will the wait make things much> worse> > > for my lungs? Thanks for your help...> > > >> > >> >>

[Guest guest]

Donna

Phone yours and get to a pulmonologist at an ILD center.

> > > > >

> > > > > I am new to the group. I went to the ER September 14th for

> > shortness

> > > > of breath and extreme fatigue. My CT showed scarring in my

lungs

> > and I

> > > > had a blocked coronary artery. I had a stent put in my artery

> the

> > next

> > > > day. My pulmonologist performed a lung function test and

> determined

> > > > that I have interstitial lung disease (moderately severe). He

> then

> > > > performed a broncoscopy but did not get a diagnosis. He wants

to

> do

> > an

> > > > open lung biopsy but the cardiologist does not want me to stop

> > taking

> > > > Plavix and it is dangerous to have the surgery. I am not

waiting

> > until

> > > > June to see if I can stop the Plavix for the biopsy. I feel

like

> I

> > am

> > > > in limbo waiting. I have good days and days with much

shortness

> of

> > > > breath. I am not on oxygen yet. Will the wait make things much

> > worse

> > > > for my lungs? Thanks for your help...

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I second that Donna. Please don't delay, do what you must to get yourself the care that you need!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, January 2, 2010 2:32:47 PMSubject: Re: new member

DonnaPhone yours and get to a pulmonologist at an ILD center.> > > > >> > > > > I am new to the group. I went to the ER September 14th for> > shortness> > > > of breath and extreme fatigue. My CT showed scarring in mylungs> > and I> > > > had a blocked coronary artery. I had a stent put in my artery> the> > next> > > > day. My pulmonologist performed a lung function test and> determined> > > > that I have interstitial lung disease (moderately severe). He> then> > > > performed a broncoscopy but did not get a diagnosis. He wantsto> do> > an> > > > open lung biopsy but the

cardiologist does not want me to stop> > taking> > > > Plavix and it is dangerous to have the surgery. I am notwaiting> > until> > > > June to see if I can stop the Plavix for the biopsy. I feellike> I> > am> > > > in limbo waiting. I have good days and days with muchshortness> of> > > > breath. I am not on oxygen yet. Will the wait make things much> > worse> > > > for my lungs? Thanks for your help...> > > > >> > > >> > >> >>

[Guest guest]

Hi ,

A good substitute for dry curd cottage cheese is :

Drain SCD legal yogurt that has been chilled in the fridge for at least 8 hours,

in a cheesecloth lined colander (or use a coffee filter lined colander) - drain

for about 4-6 hours till you get a nicely thickened yogurt cheese. You can

throw away the liquid whey - some of us have actually found we better tolerate

the yogurt without this whey.

Use this drained yogurt in the same quantity in the recipe as you would the

dccc.

If diarrhea is very severe you should avoid eggs. Many people are allergic to

egg whites, and not the yolks, so you may want to re-introduce eggs with just

yolks when you are ready for them.

Even if it is IBS that you have and not IBD, this diet will help you.

Suneeti (Crohns, SCD 2000)

[Guest guest]

Hi ,

You have arrived at the right place. So sorry you had to get here but really

this is a place where you can take your life back- lord knows I certainly have!

Many of us (myself included) have been completely failed by the modern medical

community. Western medicine when used right is such a fantastic tool but by no

means is a lifestyle IMO.

Have you looked into the intro diet at all?

I think it is fantastic that you keep a food diary- keep doing this. This will

be a tremendous help for you and for the many SCD'ers trying to help you out.

I would suggest you start intro and read read read and ask as many questions to

your heart and mind's content- even if it seems off the mark.. hehe, no question

is stupid and I am sure the people who helped me out can attest to that!

http://www.pecanbread.com/p/how/introdiet.html

Why don't you give us a list of symptoms that you are currently having and

describe the challenges that you are facing?

I know that when I have *prolonged* D I cannot eat eggs. Scrambled seems to be

best for me but that gives me the runs. Hard boiled give me very uncomfortable

gas and soft boiled give me tremendous pain. Which is funny considering how

soft boiled eggs were a staple for Marilyn's begining days on the diet.

You will learn that all of us are so different but what binds us is that the SCD

is like this huge playground- scary at first but then we settle and like realize

which activities and toys are best suited for our individual needs.

Some have immediate results whereas with others it takes time!

Good Luck!

Jodi

[Guest guest]

It is crucial that you start with the intro for 3 to 5 days first and then

Slowly, Slowly several days apart start adding one new stage 1 food at a time

for several weeks before progressing to stage 2. The first few months were touch

and go with me but overall the trend was up so just start with intro and go

SLOW!!! Good luck and don't give up I just hit the 1 year mark and feel awesome!

>

> Hello to all,my name is s and I'm a new member to this group.

About 1 year ago I started getting a sharp pain under me right side rib cage

after eating food. The pain got worse and worse and then I started getting

diarrhea and blood in my stool. I was having a difficult time being a stay at

home dad to my active 3 year old so I went to the nearest Hospital to see if

they could help. After several months and many lab test later with little

results my symptoms got so bad I agreed to an EGD and C-scope. The first Dr.

said I had Crohn's, the second said I has Crohn's Colitis or Eosinophilic

Colitis but wanted one more blood test. While all these tests were happening I

started to do my own resurch. That led me to the Specific Carb diet. I started

the diet and am having mixed results. The second Dr. finally told me that I

don't have IBD at all but I have IBS and if I wanted he could perscribe

medication. I asked about a Dietition who know about IBD because I'm not

interested in perscription meds. but was told they don't have a special

Dietition who know's about IBD.

>

> Anyway, I've tried to follow the diet but I'm having mixed results. I want to

start over with just the sample diet from the book " Breaking the Vicious Cycle " ,

page 51. I can make the Yogurt and chicken soup but I haven't found any dry curd

cottage cheese yet but I'm still looking. In the sample diet Elaine includes

eggs but on page 45 she mentions eggs can be added after diarrhea is no longer

present. I'm not sure what to do about eggs. Any help ???

>

> I've given up on the Doctors at my hospital and feel my wife is much better at

helping me figure all this out. I've been keeping a food diary that includes

symptoms such as energy level's and stools types but I don't see any major

trends yet.

>

> Any help would be great - Thanks -

>

[Guest guest]

,"I'm not sure what to do about eggs. Any help ???"

I believe it says when D is not longer brisk, or at least that is what it says in my edition. You might try them slowly and see what happens. I would suggest boiled egg first, eating only the yolk. If you have no additional symptoms or worsening of symptoms, then try eating the yolk for several days in a row to see what happens. If there is no change for the worse, then try the whole egg. It is vital to do the intro for 3-5 days and slowly add in foods as you tolerate them. Your gut is healing and you will find that you tolerate some things at first and others later or you might later no tolerate them for a period. You just need to be attune to how your body is reacting to foods and adjust accordingly. Some people find keeping a food and reaction diary helps them see patterns because not all reactions happen immediately or even the same day. Amelia

[Guest guest]

Hello everyone!

My name is Lyn Rebro. I am new to the Neurosarcoidosis Yahoo Group. My husband,

is a disabled veteran of Desert Shield/Desert Storm who has developed

several life threatening diseases including Sarcoidosis, Gulf War Illness

(waiting for diagnosis), ITP (blood disease), Irritable Bowel Syndrome and

Chronic Fatigue Syndrome. He spends a lot of time at the VA Medical Center in

Minneapolis, MN going through various treatments. We have four children ages 18,

9, 7 and 6. I joined this website to site to be a source of strength and to

allow you to walk with us on our journey.