Re: Caution re: immune Beth

[Guest guest]

Beth, Hi, no the only immune boosting I do is The Emergen-C and the teas. Mine is also immune, 3 of them or 4 so far, so my immune system is bust. However, that is all I do. Tea and Emergen-C . I react to everything, so I am very careful about what I take. I can only eat organic. Dress organic, smell organic. I take nothing from a regular pharmacy other than the Emergen-C. Actually my Vit C needs to come from a place in Texas however I can't, so I do next best by Dr Order. I also take probiotics, special ones with no allergens, wheat, colorants, preservative free, trust me I react to everything. I take Vital Immune Biotic from Klaire Labs. I have to watch everything. Non dairy also, all vegan. I have issues. HA HA !! And I use GSE all

natural organic also from nutribiotic or Rose Mountain Herbs, no store bought, nothings for us if I is not !00% organic USDA. is the highest standard. Everything I use comes special order, why I can no longer afford anything. Or from my Doc's Office or the hospital in Texas. I even need special emergency Kit for the Hospital which I do not have. Cannot use their stuff, not even their linen, IV's, or IV bags, I fear the day I have to call 911 literally. They have nothing for me. Leaving the engine running alone can kill me. No kidding. I react to .0001%. There are foods that you can eat to aid in vitamin absorption and stuff without having to take pills always.

God Bless !!!!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ AR +18

Re: More advice to the new folks...and Welcome!

Thanks so much, Babs!!! You have given me much needed information and inspiration. What was your original treatment plan? I am on prednisone only and see rheumatologist Friday after a month. Pulmo visit comes June 17th. The first guy moved practices within two weeks of me seeing him (never said PB, just scarring) cancelled all appts, and didn't even mention what to do next. So, I'm wondering what these long-time survivors with autoimmume diseases do that has seemed to help, knowing of course that everyone's system unique.

Thanks!!!

Barbara <babsyphrett@ yahoo.com> wrote:

Hi Y'all! My name is Babs, and I live in Driftwood, Texas. I wasdiagnosed with PF due to lupus/scleroderma in November of 1999. Yes,you read that correctly. I've lived with the knowledge of this diseasefor nearly 9 years now, and we don't know for certain when it actuallybegan. It is quite possible I've lived with it for 10 or 11 years..I just want to say Welcome! to this wonderful board, and offer yousome advice (adding on to what others have said) and to let you knowthat I keep each and every one of you in my prayers.When you're first diagnosed it is typical to panic, and to startthinking that you have no time left. Even if you have IPF this is notthe case. DO NOT immediately begin making plans to sell the house,move to a facility or to family, get rid of pets or any other rashdecision. Take time to evaluate your needs now and what may benecessary in the future. When I was first diagnosed my

hubby and Ipanicked because we were told I only had 2 to 4 years. We sold ourbeautiful lake front property so we could travel while I was stillable...and now I don't want to travel as much and would LOVE to havemy property to retire to or go fishing,etc.Make germs your enemy. Buy Purell or your favorite type of handdisinfectant. Use lysol wipes around your house. Buy masks to wear ifyou're going to be around children or even at the doctor or hospital.This is all especially true if you're on cytoxan or imuran or anyimmunosuppressant.Create new hobbies. It's the old adage that when one door closesanother one opens. USE your oxygen!!! It is important for your other organs and for yourenergy.Don't be afraid to seek counseling, cry on a friends shoulder or talkto your pastor/clergyman. This IS a horrid disease and it changes yourlife and that of your family, so it is OK to seek help.Keep

hanging around this board. What a great bunch of folks that livehere. Remember that we're all in this together and we CARE!Laugh. And keep laughing. It really is the best medicine!Hugs to you all, Babs in Driftwood, TexasAge 47 DX with PF due to lupus/scleroderma/ rheumatoid arthritisNovember of 1999