Hi fionab
 

Very very strange....I have all you do except the hernia. I too am loaded with an auto immune deficiency. Was diagnosed in 79 at Mayo clinic. These gastro problems are related to that as yours is. Mine started with a virus, that landed me in the hospital, followed by my long waist length hair falling out in clumps. I had alopecia universalis, and was in a trail for 10 years. I have four related immune problems. Do you also have trouble staying healthy like from colds, and flu? I did a number of years in research on this, and thats how I found out all these different problems I have are related. How old were you at onset? Were you told anything about possible ground water contaminations? I will be having the endoscopy every six months for the Barretts, how often are you being required to take it? I really do want to hear from you as I have not met many people in my life who have these multipal immune related issues. Good to meet you wish it wasn't under these circumstances. I hope to hear from you. ginnie

Forgot: FBIO
 

Don't have that issue eithor, but I had been checked for it. ginnie

OK even tho Off Topic
 

I cannot go without expressing my concern for both of you, Ginnie and Fiona, for these many issues which affect your G.I. I have friends who have been dealing with cancer of the G.I. and not the immune deficiency issues you live with. All of these matters are so hard to endure, and I pray for each of you God's overflowing grace and that, as Fiona suggested, you each know healing. After all, we have been allowed to know, ask and we shall receive. Thus I ask on your behalf.

In God's Love,
Praying,
Mark56:grouphug:

Ginnie: Turns out I was born with a genetic problem with my immune system and was sick for many, many years before finally being diagnosed in my late 40's (I'm 53 now). I have a Primary Immune Deficiency called "CVID", which means my body cannot fight off certain infections, esp. strep, pneumonia and staph. I am prone to multiple infections and for some reason this year has been the year of GI infections. I'm hoping and praying it's not a sign my immune system is getting worse! My immune system problem was discovered after my ENT getting frustrated after the many sinus surgeries I've had, which culminated in a bilateral frontal sinus obliteration as they were afraid the infection in my frontal sinuses was going to get into my brain.

My mother died of lupus complications and my sister died of chronic pancreatitis. Looking back I strongly suspect autoimmune stuff in most of the women in my family tree, but back in those days they they didn't go to doctors like we do now and so nobody knows exactly "what" their diseases or health problems actually were.

I have my barrett's checked every 3 yrs. as my GI says it hasn't progressed beyond the previous amount of erosion and he says likelihood of going cancerous is little to none.

If you want to know more about Primary Immune Deficiency, I talk about it at length on my blog as it's just too much to go into here. My blog is:http://fionab-lessonslearnedfromlife.blogspot.com/

Go to the Pages section on the right and click on "Living with Primary Immune Deficiency".

Hope this answers the questions you had.:hug:

Re: CVID/ hi fionab
 

Hi fionab. I will read your blog. I am interested in this. They didn't say what it was exactly for me. They said a T @ B lymphosyte imbalance. My immune system attacts myself as a foreign object. My hair went first. I also have trouble fighting off infections as you do. Pnemonia, ear infections etc. My immune system functions, but is mixed up on where to fight. So this is different fron CVID. My DDD, DJD, joint issues and the osteo are all related to this origional problem. I had mono in fourth grade and was sickly as a child.
I am glad your barretts is under control. That is a big relief I know. I am hoping for the same results. So far my Gerds is not under control. The GI is going to be much more agressive, as it is still eroding my stomach lining and my esophagus and I have alot of trouble swallowing. My thoat being dilated helped. I still wake with gastric pain so I got a new med. yesterday. Do you think this GI problem you have is related to your CVID? I am also starting to question this in my mind for myself. I have to do the upper GI every six months for awhile. I am wondering for sure if it is related to the problems with my immune system. What test diaganosed your CVID,? was there one particular one?. I had a whole battery of tests at Mayo. That T @ B stuff was all they really told me about. I entered a trial for 10 years, with a topicial immunosupressant called DNCB, a topical chemotherapy, which "socks" your immune system to behave itself. Very unpleasant but I stayed healthy while I was in the study, and my hair grew back. When I quit the program, all the problems came back. I couldn't tolerate the side effects from the DNCB. Also there were only a few places in the country doing this study and I wanted to move to florida. Had to care for my mom. So now I am being battered so to speak. I am questioning now just what I should do to stop the advancement of my conditions, or if there is anything I can do at all?. I am sorry you have had a fight with your immune system too. None of this is very much fun. Try to stay healthy and I will too. Now I will go read your blog. Thanks for writing to me, you are the first I ever met, who has had the immune problems. I appreciate your responce. ginnie

Thanks Mark
 

Thank you Mark for your prayers. I know this other dear Christian lady appreciates it as much as I do. The longer we are on this site it seems the better we get to understand what issues we all carry. I learned of the severity of what you, eva,fionne, carry around, with few other dear souls. The issues in our lives are indeed pretty rough. After this last post of mine telling about the immune stuff, now you understand where I am getting all my little problems from...humph.....That is why I stay here Mark, and tell the truth that I get frightened. I never know next what my body is going to do to me. It is weird to know that your main fighting mechanism is an odd ball. Fionne lacks immunity, it seems I have mine, but it is mis-directed. It forgets to fight the stuff it should, and instead it attacks me. I am going to learn about this other immune problem that this dear lady talked about. I have been trying very hard, to research what people are telling me about their conditions, so I can better understand their needs, and their hearts. Prayer is the best thing I have right now, with the good people on this site who pray too. Have a good day Mark. I hope your pain is less today. I have to check up on Eva, and see how her recovery is coming along. :grouphug: ginnie

And Ever Do I Pray
 

For the two of you, Fiona and Ginnie, known to have immune system issues, such a lot to bear in addition to the other issues you carry. I know God lifts you up and only a single set of footprints may be seen in the sand as He carries you.

Prayin and Prayin,
Mark56:hug::hug:

Follow Up with Bos Sci Rep Tues.
 

Tuesday I met with my rep Eric who spent almost an hour going over each setting trying to make sure my stomach area is covered. My pain has diminished quite a bit but still am back on multiple meds a day. Not where I want or hoped to be. It is so frustrating to be told they really don't know what causes the flair ups. They run the labs, cat scans and ercps with no real answers. The diagnosis is Sphincter of Oddi Dysfunction. I know this is so different from many of your issues but pain is pain. We are each given a path to walk.
I pray that each of you will have a peaceful night and a brighter tomorrow.

Sandy K:Ponder:

Mark
Forgot to mention I asked how often my rep lets patient take the wheel in programing. He said he usually lets the Dr make the suggestion as to who takes the lead but it's only a few times a year. He said he didn't have the control with him but would have let me if I wanted to. Maybe next time if I need it. But, hopefully this is the last. Too bad most of us were never given the option. My programing was done the day of implant. Don't know how alert and functioning I was immediately after surgery.

Sandy K
:grouphug:

Understood Sandy
 

Well, with your programs set day after surgery, you are spot on, as you would not have had an easy time discerning surgery pain from nerve pain. We who go for implant and wait two weeks for the surgical pain to abate before programming stand a better chance of knowing what the situation is with our pain.

Even so, it is good to know the answer to the question you asked AND to realize you are obtaining relief..... maybe if your pain has diminished quite a bit, you may ultimately find better relief over time and with your doctor make an effort at reducing dependence on pain meds.

Prayin for ya,
Mark56:hug: