is plaguing me is the reason.I am feeling better today and hope the antibiotic

is working otherwise a trip to the Big House for massive doses. I am waiting for

the results of the ct scan to see if the cellcept has slowed down my

honeycombing. The next drug is ravatio. I hope everyone has a great weekend...

IPF 2/07 IL Scleroderma Sjogrens Raynauds

I hope this is just a minor setback and once the UTI is cleared up your stats will improve. What medication are you taking for the UTI?

Patti Indianapolis PF 2007

IPF 2/07 IL

Subject: Fw: breathtaking

rendition of the Lords prayer

----- Original

Message -----

Sent: Wednesday,

January 27, 2010 7:59 PM

Subject:

breathtaking rendition of the Lords prayer

Subject:

breathtaking rendition of the Lords prayer

Bocelli and the Mormon Tabernacle Choir

singing the Lords Prayer

Scroll down.

Bocelli and the Mormon Tabernacle Choir singing the Lords

Prayer..........

Feel free to pass this one on...

This is absolutely beautiful!

Click Here to view

or copy and paste the link below into your

browser address window

http://bit.ly/5awyVd

been to my local GI doc, Gyn doc, Mayo Clinic, and Univ of Iowa Hospital. No

one can figure out what is wrong with me. I have loose bowels too. I have

Crohn's but my colonoscopy shows it is not active. DId a camera capsule test

and that was fine. Have had cat scans and even an MRI. My local GI is calling

all the other doctors I have been seeing and appeared to be interested in

solving the mystery. It doesn't burn in the mornings when I get up but as I

start moving around and sitting, it starts up. And if my bowels are really

upset (diarrhea) it hurts worse. Tried depo-lupron to rule out endometriosis

but that didn't work. Saw a urologist and since I don't have pain or urgency

with urination, he said it couldn't be bladder related. I am at a fork in the

road and am unsure where to go now. Anybody have any advice? Also, has anyone

experienced a worsening of symptoms with Imuran? I seem to feel worse since I

have been on it.

Gramenz

Moline, IL

SCD 4/10

Cimzia 8/10

Imuran 9/10

-- Jodyscd 5 yearsceliac sprue, pernicious anemia,heavy metal toxicity nummular eczema  " Strength does not come from winningYour struggles develop your strength. "

I went to the files list and only found 4 letters from companies. Is there a

larger file list some where. I thought some one said s tomato juice was

legal but would like documentation to back it up before I go using it. I have

tried to contact several companies with no luck.

Thanks,

Phil

http://www.huffingtonpost.com/2010/10/04/mechanically-separated-meat-chicken-mcn\

ugget-photo_n_749893.html

Jodi

Btw, had no idea filet powder was illegal.

--

41 cd

scd 12/05

it is comforting to know that i am not alone for 2 reasons

number one is this air family -- i always wish we lived closer so we could all get together

number two is that i am not the only one experiencing this kind of thing and that other people understand

one of my newer friends lives in back of me, we met when i first moved in, but i knew she had lots of family, and thought she was always busy

in the last year we have become much more friendly and she is kind of like me

shy, not assertive, has had many blue days, a widow in her 50's

a couple of years ago she joined this group that meets on Tuesdays, last year she brought me as a guest and i joined too

the people, mostly women, but a few men, are very nice, most seem down to earth and it gives me something to do and gets me out of the house

they are a lot older than me-- 70's and 80's and 90's --

then my neighbor, her name is Joy, wanted to start playing Mah jongg, so she organized a group of 6 women, so i made a couple of new friends or acquaintances that way, one of the ladies [stella] i already knew, but not well, she lives next door to Joy, and one of the women, Muriel, is my friend from the other Mah Jongg games that i am in and i invited her to join the Thursday nite game

stella invited her friend, Honey, to join

Stella and Honey met because both husbands are in the same nursing home and they have become good friends

Honey's daughter in law organized a Mah jongg luncheon with her freinds that included bringing their moms -- so the thursday nite group went and had a great day

Honey is the one who told me about the art classes at a senior center, so i joined that

the women at the art class also meet in someone's house on Tuesdays and invited me to come

so now i take turns with the Tuesday meetings, the Tuesday art group and the Tuesday doctor appointments

back to Muriel, she is a snow bird, right now she is in Florida for the winter, i really look forward to her coming back in the spring, she is one of the nicer, down to earth ladies

back to Bruce's post about joining stuff, this is something that i have already done,

i think my blue days were because i was sick and stuck in for a couple of weeks, and some of the activities stopped for the holidays

plus jerry was home all last week, so i had company for an entire week

and the weather is so cold, that i limit my going outside

it is even too cold for me to walk the dog

on wednesday, i stood outside with him, wearing my cold weather mask, and still had a coughing spell

yes, sometimes i do vent a lot more than other times

most of the time, i hold everything in and just give short, to the point responses

thanks again for sharing with me about your experiences

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org

I'm glad you got the doctor's advice and hope you start feeling better soon!

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Mon, January 11, 2010 11:15:58 PMSubject: Re: Erna - Allergic Reaction [2 Attachments]

Hi, and All

Yesterday a doctor told me to not take the azathioprine and take 1 pill of Benadryl every four hours. Today the nurse tried to figure out if it could be another allergy. but said that I should take 2 pills of Benadryl every two hours, so of course I have been sleeping all day today. This is almost three days in bed for me and not like me at all.

Anyway tomorrow I will see the pulmonologist. . And take my do my blood work. I just looked at the paper it is a comprehensive metabolic panel and CBC with auto (something) I do not know if this is a liver test like Beth said.

Sorry actually I feel worse today then yesterday and am still swollen in my face it may be going down a little bit.

I may have last night taken an azathioprine anyway by accident, So maybe this is why the swelling has not gone down yet. We will count pills and figure out if I did or not before tomorrow……

I will attach a power point slide show on this that you may interest you and others… anyway I saw you asking about UIP and maybe this will help…. If you cannot open it the second attachment is in a PDF file. I converted the Power Point last week to a PDF file…. Take care tomorrow will be better, Erna (sleepy)

1992 bird fanciers syndrome, CAD & MI 2004 , ILD 2008 NSIP 2009

Washington State

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Erna - Allergic ReactionTo: "Breath Support" <Breathe-Support@ yahoogroups. com>Date: Monday, January 11, 2010, 8:02 PM

Erna,

Are you okay now? I see you posting, but you didn't say if you got treated for the swelling you were experiencing this weekend? Hope you're okay..

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

Glad to see you posting. Wondered how you were. I can't believe it's

been two months already but I bet it doesn't to you. Are you still

doing LDN? I quit taking everything early August--and I think I'm

actually better for it.

I'm not SCD either ATM. Think I'll do an ez SCD version--meat, veggie

and fruit. I really hope you start to feel better.

Debbie

--

41 cd

scd 12/05

I went to the files list and

only found 4 letters from companies. Is there a larger file list some

where. I thought some one said s tomato juice was legal but would

like documentation to back it up before I go using it. I have tried to

contact several companies with no luck.

Products which are mentioned in BTVC as legal are legal.

Other than that -- the letters you see in our files are what we've gotten

so far. Some people just choose to go ahead and use something they THINK

is legal without bothering to get the letters. I won't do that, and I

respectfully request that people do not recommend products which don't

have the documentation to back them up on BTVC-SCD.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

>

> OK, so I have been taking s. boulardii (3 capsules before bed) for a few

weeks, as well as Enhnasa for a few months, to rid myself of yeast before I try

to start LDN in the next few months.

>

> A blood test from 6 months ago showed candida albicans and that's why I've

been treating it.

> BUT NOW - I just got back results from a stool test a month ago that shows

positive for candida parasilopsis.

>

> I looked up this critter and it looks like it is prevalent in healthcare

settings and likes to grow on things like IVs and central lines. I know - CRAZY,

right? So I don't know how long I've had this particular type of candida, I was

in the hospital with my Crohn's for 4 weeks in 2007, 2 weeks in 2008 for a

fistula which resulted in TPN through a PICC line for 4 months, and I've been

getting Remicade IVs for the last 2 years.

>

> So here are my questions...

> 1) Is s. boulardii effective against this type of candida?

> 2) I don't think I am experiencing die-off from the s. boulardii. Should I up

the dose, and take 2 in the morning and 2 before bed? If I take it in the

morning on an empty stomach, it will only be 1 hour before I MUST have my

morning yogurt-based smoothie. Is this enough time before food? And before other

good probiotics?

> 3) Does candida parasilopsis interfere with LDN the way candida albicans does?

>

> I hope someone knows about this stuff and can help me out:)

>

> Thanks!

> Caroline

> SCD since 1/7/10 (ALMOST 9 MONTHS!!!)

> UC-->Crohn's since 1999

> Remicade since 2008

>

or get involved with Gift of Life-- you get to meet lots of people who had all sorts of transplants

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: web programTo: Breathe-Support Date: Thursday, January 28, 2010, 10:41 PM

I really enjoyed the program, lots of great information. and the program will be on the website in the archives is what they had said. the only thing that i was little disappointed in was that the reciepients were so new one 3 months out and the other 9 months I guess it would have been nice to hear from someone who was maybe 5-10 years out. Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009

are walking distilleries. Gives a whole new meaning to the term " home brew " ,

doesn't it?!! Now, if I could just figure out a way to MARKET it...!

Artful Carol

Former me: From babyhood - CFS, some depression, Candida, Chemical, Inhalant,

and Food Allergies. Current me: Global Carb and Fungal Problems well-controlled

past 30 yr. by extremely low-carb, no dairy, no grains allergy/anti-yeast diet,

One bout w/ IBS. Pre-lowcarb. SCD 01/05. After 35 yrs. no need for allergy

shots since SCD! Magnesium/Vits A, B, D, E/Evening Primrose, Fish, Olive, and

Other Oils, Lecithin. 2 grown kids recovered from serious developmental problems

which I believe were fungally-caused.

>

> http://www.usatoday.com/yourlife/food/2010-08-21-beer-psoriasis_N.htm

>

I am a 56 year old female and have been very healthy for the past 30 years. At

that time I stopped all beef, pork, processed and fried foods and started taking

vitamins, minerals, and herbs. I've never had any health problems, except

seasonal allergies, up until recently.

About 3 years ago my nose would not stop running, and it was winter time. I

decided to go gluten free and within weeks, my nose stopped running. I thought

I was cured until I started having loose stools about 6 months ago. Around the

same time I started getting this salty taste in my mouth which has gotten worse.

My health insurance is horrible so I haven't had this officially diagnosed yet,

but all internet searches lead to Sjogren's Syndrome. Great. So my whole

immune system is shot to hell. How did this happen?!?! I'd really like to

know!

I asked my chiropractor to test me for allergies and he said gluten and dairy

and also told me I had parasites and leaky gut. I immediately started

researching and came across the SCD diet. I must say it is very hard to stick

to! But when I do, the loose stools stop. Then I cheat, and they come back.

It's a tough road for sure. Thank goodness for the 24 hour yogurt! I was having

some serious dairy withdrawals. In my weak tea I use So Delicious Unsweetened

Coconut Milk; not bad!

I am also supplementing with the following to repair and strengthen the g.i.

tract:

Symbiotics Candida Balance with Colostrum

Morningstar Minerals Immune Boost 77

Natural Vitality, Natural Calm ionic Magnesium

Lifetime liquid Glucosamine Chrondroitin

Nettle, Primrose Oil, CoQ10,Zinc, B Complex, Omega 3, L- Glutamine, Digestive

Enzymes, plus my regular vitamins and minerals.

I tried Turmeric but it just made the loose stools worse.

I also start every day with a tablespoon of Bragg's apple cider vinegar and

stevia in warm water.

I know it sounds like a lot but I feel they are all helping. I'm going to order

a Vita-Mix blender next week and really start getting more veggies into my

system with some green smoothies. I think the nutrients in the raw fruits and

veggies will be better than steamed in the long run.

I would really love to hear what you have found that is really helping you heal

and anyone else with Sjogren's and what, if anything, is helping you with the

salty mouth.

Rita

Anyone who is a member of Breathe Support has the same options for the delivery of messages. These are:individual emails, "daily digest", and no emails which means you read the messages directly from the board and receive no emails at all from the group.

To view these options, go here:

http://health.groups.yahoo.com/group/Breathe-Support/

On the upper left hand side of the page click on "Edit Membership". The page that will take you to gives you the options I described above. Daily Digest is the option that was speaking of.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wed, February 3, 2010 10:50:10 AMSubject: Re: Hi BOB

,

Yes it has been quite time consuming. I had 1600 Emails when I got back from my last trip and it seems to have increased per day since. I usually read my emails by.reading, then pushing delete and the next automatically comes into view. I normally don't even see the subject and doesn't seem to mean much anyway. Beth has requested others to be nor attentive to the "subject" maybe I can look at the list and merely delete all the party stuff prior to reading the other very interesting and informative stuff regarding the condition and concerns of others in the group. I truly love this site and the people on it and have benefited very much from being a member.

I guess I yield to others who's needs are different from mine. I don't think I have the option to "bundle" the emails as you do. I use Yahoo/ATT Email. How do you do it.? I know one thing, I will NEVER give my opinion regarding virtual parties again finding out how much others LOVE them! WOW!

Bob, MI, 70, IPF 1/09, 5 bypasses 7/01

From: Godfrey <sngodfrey46@ yahoo.com>Subject: Hi BOBTo: Breathe-Support@ yahoogroups. comDate: Wednesday, February 3, 2010, 12:37 AM

I understand your feelings about the cyber-parties, especially if you are getting all the posts as individual Emails. I personally don't mind all the chit-chat, it is time consuming and at one time I felt totally over whelmed by the number of Emails I was recieving.

I now recieve my posts in the digest form (25 Emails wrapped up into 1 Email) and it makes it alot easier to scan through the subject matter. I have actually learned to speed read at a very respectable pace which helps with keeping my mind a little sharper. You might try it and see if it works better for you. Good luck.

G. UIP/IPF 5/07 AZ.

Buuuuut. I am still having some problems. Right at the point I actually pass stool, I have a noticeable burning sensation. I do not get this sensation ever when I have a flare (and i've had plenty in the past 10 years). When I flare, its always painfully severe constipation, violent diarrhea, and abdominal cramping. In this case, the pain is comparable to my hemorrhoids being irritated and inflamed. On a pain scale between 1-10, I'd say its a 2 or a 3. In other words, its uncomfortable and annoying but nothing i couldn't live with. However, I don't want it to burn when I have a bowel movement.

I talked to my GI about this and i mentioned that I feared it was an anal fissure. He checked me out and said he didn't think so.  He prescribed anucort (its a hydrocortisone suppository). I am supposed to use this twice daily for two weeks and see if that makes the pain go away. Its certainly possible that I am just irritated and inflamed down there as a side effect of the crohns and it'll eventually dissipate on its own.

I wonder though if modifying my diet or using over the counter scd legal meds would help to soften the stools. My stools are probably slightly too hard and I wonder if by softening them I can reduce the burning sensation and let my posterior heal. I tried miralax and that led to violent diarrhea. Anyone have recommendations for an SCD legal stool softener? Also, diet recommendations are welcome. here's what i am eating currently:

-chicken soup (from intro diet)-DCCC-ripe bananas-cooked butternut squash- apple (with skin removed) (i have one apple once every 2 or 3 days)-broiled hamburger

-homemade ketchup-cooked and pureed carrots-SCD yogurt-chicken-eggs-mild cheddar cheeseI am wondering if I should start to add in some more fruit and whether that will make my stools softer. What sort of intro fruits would  people recommend? I have a stricture so grapes are a big no no.

Thanks,JoeCrohns 10 years,SCD 3 monthsHumira, 40 mg per weekLDN, 4.5mg per day

NAC helps keep the mucous buildup manageable. In fact of late when I stopped

using the mucinex, I encountered a lung infection which after 3 antibiotic

treatments (and going back on the Mucinex), the mucous turned white and the

infection was subdued. In experimenting since, I find that when I don't use

mucinex, the majority of my buildup of mucous turns more and more yellow/green

which according to my pulmonologist should be treated with antibiotics. So I am

playing this balancing act. Are many of you routinely using mucinex with or

without your NAC?

Mike