Re: Anti anxiety meds

[Guest guest]

Peggy E, Just a quick note cause I have company on the way.. I have dealt with GERD the whole time I have had this Dx. and before. of course I had this monster long before I was Dx.The GERD can be easily controlled with Meds. The anxiety not so easy. I am on wellbutrin and can't stop without getting upset with every little thing. So I treat the Gerd and take what I call my psycho pill. lolPrednisone started all the fun I have had , 70 pounds a sweet tooth that won't quit, Gerd, psycho feelings.. I wish I had never taken it. I was on 60 mg for a long time. can't remember, that is my newest problem  NO memory.I forget who but someone here had the stomach acid test and wasn't to happy about it. It was something in the stomach with a string coming up and out the mouth, or something nasty like that.. I think they just find new waysto make us think they can help..  I do hope you are all finished with tests for a while and that all went well. Oh I love the pictures you posted. I tried to get on the yahoo messenger and haven't had any luck yet.. lol I am not techie..I too love the Praise and Worship and Gospel Music. I have a ton in my computer that I play a LOT.God Bless.Love and Prayers, Peggy   IPF  2004,  FloridaWorry looks around, Sorry looks back,  Faith looks up. Hi Peggy,I was just looking around the entire site and saw the newspaper article you put on-line for us all to read.  It was great - you're an inspiration.  I was thinking about asking about an anti-anxiety med because I was having so much trouble there after the whole Dx thing really sunk in and then I was reading about GERD and what can make that better and anti-anxiety meds can actually exacerbate GERD.  There is a whole theory that the stomach acids are being micro inhaled especially when the body is in a more horizontal place and they do incredible damage to the lungs.  I'll see if I can get Dr. Raghu to give me some of his research for publication on the site.  I'll also mention the site to him and see if he can be a contributor if that is allowed.I just wanted to mention this to you.  According to my doctor 40% of all people who have GERD don't know they have it.  I certainly did not know I had it and thank God my husband had the courage to ask me if I was making myself vomit (God forbid - no models here) and I casually mentioned it to the doctor and his eyes lit up like a jackpot handle was pulled.  He immediately put me on omraprazole and after I told him most of my symptoms went away he weaned me off the inhaled steroids and I am still doing pretty much the same as I was doing before I ever even knew I was sick.  Just thought I'd share that.  You've probably been down this road but just in case you hadn't.  For more info - Google Dr. Ganesh Raghu and his GERD and ILD research.Now for sure I am going to bed cuz I can't have anything now to eat or drink so I might as well sleep.Cheers,Peggy etc.

[Guest guest]

Hi Beth,I totally understand and frankly am glad that care givers and doctors are not in the group. Sometimes you need/want to vent and it would limit our ability to be 'honest' if we were worried about offending either of those groups I did hear of a study that I'll see if we can get posted on the site. I am aware that ILD can be caused by many different things but of course I am interested in finding out the cause of mine and doing everything I can to minimize it's future in contributing to my lung's demise so to speak. I am idiopathic at the moment and although Dr. Raghu wants me to have a lung biopsy I just am not interested in such a thing. A few years ago I was turning blue and my sats were dropping through the floor with mild exertion but over time they have improved and now most of the time I

feel 'normal' although I am aware now of what I think is 'normal' isn't 'normal' in the general population. It has been my 'normal' however for a long time and I'm O.K. with it as long as I don't get the situation where the O2 starts falling off like it did before again. I tend to agree with Peggy C (miss Ha ha as I recall LOL) that the biopsy doesn't do much for me but maybe I am just trying to keep my distance from anything that might make my precious life worse. Thanks for the advice. If I get that article in pdf form, I'll forward to you and you can put it on the site for those who are interested in reading it.Peggy EllisSubject: Re: Anti anxiety medsTo:

Breathe-Support Date: Thursday, June 11, 2009, 5:24 AM

Peggy,

I'm so happy that this site is giving you some of the information and support that we all need. I can remember how I felt when I found this group back when I was first diagnosed in 2006. It was amazing to all of a sudden be in contact with people who 'got it', who understood what I was coping with in a way that my other family and friends couldn't. It's a good feeling.

GERD is something that most of us here deal with. Dr Raghu is definitely at the forefront of research into this area. There are however many types of interstitial lung disease that have many causes and there are other areas of research, lots of work being done. There is an organization of "centers of excellence" for interstitial lung disease. I believe that there are 22 hospitals currently participating, sharing research and information as well as treatment standards. University of Washington is one of them as is Duke University where I go. www.ipfnet.org has the full list of centers.

Feel free to share the existence of this group to Dr. Raghu, with one request. Should you print any of the messages, I'd ask that you eliminate any emails or identifying information in order to protect our privacy. Also, this is a patients group, so Dr. Raghu would not be eligible to participate. I understand the impulse of thinking that would be a good idea however that is not the purpose of this group. We're here to provide a support community and as such limit participation to patients as much as possible. We do have the occasional caregiver who pops in but in general we are all patients. If you have any questions or concerns about this, please don't hesitate to either ask on the board or email me privately.

Thanks Peggy and again I'm so glad you found us!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Peggy Ellis <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 11, 2009 3:01:03 AMSubject: Anti anxiety meds

Hi Peggy,I was just looking around the entire site and saw the newspaper article you put on-line for us all to read. It was great - you're an inspiration. I was thinking about asking about an anti-anxiety med because I was having so much trouble there after the whole Dx thing really sunk in and then I was reading about GERD and what can make that better and anti-anxiety meds can actually exacerbate GERD. There is a whole theory that the stomach acids are being micro inhaled especially when the body is in a more horizontal place and they do incredible damage to the lungs. I'll see if I can get Dr. Raghu to give me some of his research for publication on the site. I'll also mention the site to him and see if he can be a contributor if that is allowed.I just wanted to mention this to you. According to my doctor 40% of all people who have GERD don't know they have it. I

certainly did not know I had it and thank God my husband had the courage to ask me if I was making myself vomit (God forbid - no models here) and I casually mentioned it to the doctor and his eyes lit up like a jackpot handle was pulled. He immediately put me on omraprazole and after I told him most of my symptoms went away he weaned me off the inhaled steroids and I am still doing pretty much the same as I was doing before I ever even knew I was sick. Just thought I'd share that. You've probably been down this road but just in case you hadn't. For more info - Google Dr. Ganesh Raghu and his GERD and ILD research.Now for sure I am going to bed cuz I can't have anything now to eat or drink so I might as well sleep.Cheers,Peggy etc.

[Guest guest]

What a genuinely wonderful idea. Did you ever see the movie "The Doctor" with Hurt (interesting last name for that actor in that role - yes)? First thing I would do is make them have that 24 hour test and the stereoscopic breast biopsy (of course that was for suspected breast CA which I did not have) was another joyful experience and I imagine in this group there could be a lot of wonderful suggestions for tests they could endure!I have even better suggestions for the insurance industry and our wonderful lawmakers but I won't even go there lest I might get high B/P! LOLPeggy E (survivor of the 24 hour test)

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Anti anxiety medsTo: Breathe-Support@ yahoogroups. comDate: Thursday, June 11, 2009, 8:24 AM

Peggy,

I'm so happy that this site is giving you some of the information and support that we all need. I can remember how I felt when I found this group back when I was first diagnosed in 2006. It was amazing to all of a sudden be in contact with people who 'got it', who understood what I was coping with in a way that my other family and friends couldn't. It's a good feeling.

GERD is something that most of us here deal with. Dr Raghu is definitely at the forefront of research into this area. There are however many types of interstitial lung disease that have many causes and there are other areas of research, lots of work being done. There is an organization of "centers of excellence" for interstitial lung disease. I believe that there are 22 hospitals currently participating, sharing research and information as well as treatment standards. University of Washington is one of them as is Duke University where I go. www.ipfnet.org has the full list of centers.

Feel free to share the existence of this group to Dr. Raghu, with one request. Should you print any of the messages, I'd ask that you eliminate any emails or identifying information in order to protect our privacy. Also, this is a patients group, so Dr. Raghu would not be eligible to participate. I understand the impulse of thinking that would be a good idea however that is not the purpose of this group. We're here to provide a support community and as such limit participation to patients as much as possible. We do have the occasional caregiver who pops in but in general we are all patients. If you have any questions or concerns about this, please don't hesitate to either ask on the board or email me privately.

Thanks Peggy and again I'm so glad you found us!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Peggy Ellis <artquilterpeg@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, June 11, 2009 3:01:03 AMSubject: Anti anxiety meds

Hi Peggy,I was just looking around the entire site and saw the newspaper article you put on-line for us all to read. It was great - you're an inspiration. I was thinking about asking about an anti-anxiety med because I was having so much trouble there after the whole Dx thing really sunk in and then I was reading about GERD and what can make that better and anti-anxiety meds can actually exacerbate GERD. There is a whole theory that the stomach acids are being micro inhaled especially when the body is in a more horizontal place and they do incredible damage to the lungs. I'll see if I can get Dr. Raghu to give me some of his research for publication on the site. I'll also mention the site to him and see if he can be a contributor if that is allowed.I just wanted to mention this to you. According to my doctor 40% of all people who have GERD don't know they have it. I

certainly did not know I had it and thank God my husband had the courage to ask me if I was making myself vomit (God forbid - no models here) and I casually mentioned it to the doctor and his eyes lit up like a jackpot handle was pulled. He immediately put me on omraprazole and after I told him most of my symptoms went away he weaned me off the inhaled steroids and I am still doing pretty much the same as I was doing before I ever even knew I was sick. Just thought I'd share that. You've probably been down this road but just in case you hadn't. For more info - Google Dr. Ganesh Raghu and his GERD and ILD research.Now for sure I am going to bed cuz I can't have anything now to eat or drink so I might as well sleep.Cheers,Peggy etc.