My husband is 43 and was diagnosed at birth with CF. Last year he was told he has b. cepacia, the genovar III (not sure if I spelled that right). Just wanted to know if you have this, have you found any vitamins, minerals or supplements that help with lung tissue or build the immune system. Not interested in extreme alternative medicine or people pushing their own products, just CF patients who have had positive experiences they'd like to share. Thanks!
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b. cepacia
- Thread starter anonymous
- Start date
Hi, I am 38 years old and was diagnosed with cepacia 6 years ago. I havent found anything significant to help with it either. The only thing i can say is, your best bet is to try to stay as active as you can. I noticed that when i get sick or just pain ol' lazy , it is HARD to get back to where i was before or sometimes even near it. It has certainly been a challenge for me since i cultured positive for b. cepacia, but , every now and then it does "let up" on me a bit and i go thru times where i feel GREAT. needless to say, i cherish those moments. Try not to get too down about having cepacia, I know it stinks, but there is always something new coming out to try to help us. I started using Glutathione to see just what it would do for me. Some cf'ers have had great results with it. I have only been taking it for about 6 weeks so i think i have to wait a while to start seeing results i can relay. I do know that it has made my coughing much less. My energy level has gone up a bit also, which is a welcome thing. The one thing that always kept me going is, knowing that somewhere we cepacia patients may have a pot at the end of the rainbow someday. Diane
Interesting that you ask that question. It may be coincidental but i was fine till i went in the hospital for sinus surgery. I was always considered to have very mild cf and always felt pretty much well. shortly after i came home from my surgery, i started to notice some odd things. Like my lung infections never seemed to let up on me. After 2 weeks of an antiobiotic i needed another course of a different one. It seemed no matter which one we tried, i would feel better for one week and go back to feeling crappy the next. I was unbelievably tired to the point, where taking a shower was a major effort. Then the daily lowgrade fevers started. I seemed to get a fever of about 99.4 or so with body aches , every day around the same time of afternoon. Finally i was diagnosed with b. cepacia. I have always been convinced i got it from being in the hospital. I was never around other cf patients so i cant imagine where else i would have gotten it. Diane
I deifinitely got cepacia at the hospital. I believe it was from the common solution bottle respiratory used for the nebs (I don't let them do that anymore, but of course, it's too late for me). I have never been around other CF patients and had been doing great. I'm in my early 40's. I was devasted to be diagnosed with cepacia, and am trying to adjust.
I was diagnosed with b. cepacia one year ago. I believe I must have gotten it the September before, because we noticed a severe shortness of breath that I had never experienced, and recurring infections, which I had basically avoided. I have the most virulent strain. They did synergy testing and there are two combinations of antibiotics that are hopefully effective. I'm currently recovering from my fourth exaserbation since last May, and am on home iv's and oxygen (my resting oxygen level was 84) for the first time. I am hoping that I do not have to stay on oxygen. I also have p. aeriginosa (spelling). But enough about me, how is everyone else doing?
I am sorry to hear you arent feeling so well. I will say a prayer for you. As soon as you feel up to it, get active, do not let the cepacia take any more away from you. I myself feel well at the moment. I also want to urge you to look into starting Glutathione. I started this last month and i only ingest it. Since i have had serious problems with hemoptysis, i want to aviod inhaling anything i dont absolutely have to inhale. I feel like i have much more energy, less coughing, and my lungs feel way less congested. I also feel i can bring up secretions easier. Please i urge you to consider using this treatment. Before i had cepacia, i had fev1 around the high 80's low 90's range. When i started to dip into the 60's range i knew something wasnt right. The constant infections that werent going away , and the feeling of exhaustion were horrible. I now have fev1 in the high 40 low 50 range. I am soooooo unsatisfied with these numbers and have the desire to improve upon this. I can't try now since i have been having pleuritic pain for about 5 weeks now. Once this pain is totally gone i am going to get to the doctors to see if and how much my numbers have improved. Since starting the Glutathione i havent checked my pft's., But feel they must have improved. I have noticed , since having cepacia when i have an exacerbation, it is bad. I get out of breath walking room to room, which is so scary, and it takes me longer to recover,( even on ivs). I know how scary Cepacia can be. I do not know what form of it i have though. If you ever want to just vent or chat my email is.... Jinxnick@aol.com The address to looking into Glutathione is...... http://members3.boardhost.com/Thankyou/Please, i urge you to look into it, It may help you ~ Diane