Does anyone else have b.cepacia and it seems like you just can never get caught up with it? I have had b.cepacia for 6 1/2 years now, and it seems like, lately i can not get a grip on it like i used to. Everytime things start to get better and i feel like i am actually going to improve, i get all congested again , and start feeling feverish and crappy all over again. It is soooooo frustrating to feel like i can see the road between the trees, but can never seem to get out of the woods. Sometimes i just want to scream out of frustration. It can get so depressing because i used to be doing very well with high pfts., but in the 6 1/2 yeas i have had b.cepacia i cant seem to get my numbers any where near what they once were. I almost regret having sinus surgery, because i was perfecly fine till then, which is why i always believed i acquired the b.cepacia while in the hospital. I imagine someone out there must have b.cepacia and know exactly what i am talking about when it comes to dealing with it and being frustrated. I guess i feel a bit better, because i got to vent and know that whoever reads this, cepacia positive or not, nows exactly how i feel. Cf by itself can be frustrating and scary, so even if you have no cepacia ,things can still seem to be going bad.Diane~ 38- cf, diabetes, b.cepacia
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catching up with b.cepacia
- Thread starter Diane
- Start date
Hi Diane, I have b. Cepacia and have had it for about 4 years now, but have only lately (like the past 1 -2 years) felt the same way you do in that i can never get back to where I once was. It used to be if i had a course of antibiotcs (oral or IV) i would feel great after for so long, but even now i only feel great for a little bit and then my pft numbers drop again. IT IS SO FRUSTRATING i agree. My numbers used to always be decent but now in the past year I cant get them to where they once were, I cant stand it, plus my doctors still sort of use those numbers as a baseline that i should be trying to get to so it makes it even worse. My numbers are already low relative to others because I had the lower left lobe of my lung removes 9 years ago, so the numbers LOOK even worse than they are. I agree with you that is is really frstrating. I was wondering what meds you are on. It is kind of frustrating that there is no real oral antibiotic for b. cepacia. I am taking Zithromax right now, but its not like I really feel like it is doing much. My doctor told me about some advancements they are making with an inhaled form of cephtasadime (spelling?) but I am not sure if it is ready yet, have you heard of that? Might be good but I have never had much luck with any inhaled meds. I feel like i probably got b. cepacia from the stupid hospital too. It was weird, for about 2-3 years I wasnt even really aware that I had it...my doctor told me that I was culturing some kind of other cepacia, not "b.", then like 2 years later all these doctors were just sort of talking to me, about what drugs they were going to use to treat my b. cepacia and I was like "What?!" (In the past I was always treated for just pseudomonas). For one of the best hospitals in the country they sure can mess things up, it turns out I had been culturing B. Cepacia that whole time, it just wasnt growing much on my cultures so didnt need as much treatment as the pseudomonas. Now the cepacia has totally pushed the psuedomonas out, of course! I am thinking that maybe that is why I feel the change in my health. Its depressing, I wish there was a way to eradicate it; i'd take old psuedomonas any day! Anyway, it sucks, i feel like i went from being a healthy cf person to...now i dont know what i am.
Hi, In answer to your question about what antibiotics i am on. I am always on two antibiotics at a time and (Zithromax as a maintenance) we keep rotating them as needed whch is usually every two weeks. My normal schedule would be minocycline with tobi (and zithromax), and i would usually rotate one or the other to either cipro, bactrim, or Biaxin. Of coarse when i use Biaxin i dont use Zithromax, since they have the same effect ( anti-inflammatory). I have used inhaled Fortaz in the past, but it irritated my lungs so i try to aviod it now. My God i pray that there will be some advancements in oral antibiotics as well as inhaled. I dont like to inhale antibiotics because of the problems i have had with hemoptysis that required me to have 2 embolizations. Just about anything i inhale into my lungs is irritating, luckily i can tolerate Tobi. It's nice to know ( and unfortunte of coarse) that someone out there knows exactly what i am going thru. At times that i have to go on ivs which is usually about twice year, i get depressed because it makes me realize how advanced things are getting. I HATE not having as much control as i want over this. I started using glutathione in May and i do feel it has made a difference for me, my energy level has increased, and i always welcome that. All we need now is a treatment for the cepacia ( and cf in general) that really kicks butt. ~ DianeP.s i know about the antibiotic Ceftazadime, i have used it intervenously. If it would be in the inhaled form and i could tolerate it, i would love it!
Hi- yes I have used Cephtaz intravenously as well, but I am going to ask my dr. about this medicine he mentioned a few months ago when I go for one of my regular appointments next week. I find that most of my problem stems from infection deeper in the lungs and so inhaled anything doesnt really work that well, since it only reaches some part of the lungs. It just really sucks that there is not something that targets cepacia in general. I know what you mean about being on IV antibiotics and it making you realize the direction things are going...it is indeed depressing. I always felt like i had a handle on things, almost like i could allow myself to relax a little because i knew that even if i got sick i could always pull myself back up again. Now i never let myself "relax" and i do the best i can all the time, yet i still cant keep up. I feel like if i had been this conscious about my health everyday like, 5 years ago, i would have been so much more healthier than i am now. Did you ever culture anything else? pseudomonas, etc.??
hello again<img src="i/expressions/face-icon-small-smile.gif" border="0"> yes i have cultured psudomonas, and also a bacteria called ceratia.I thought they made a mistake and just spelled cepacia wrong but, no there is one called ceratia. I have cultured that in the past but, psudomonas and b.cepacia are the "steady ones" that i usualy culture. I always ask my nurses and doctors if they ever heard of anyone ever "beating" cepacia and either getting rid of it ,or just doing so well with it, that they hardly even know they have it. So far noone has ever beaten it that they know of, but they did tell me that some patients do better with it than others. I am on iv's now , by my choice this time, i felt i was getting more congested than i am comfortable with and my nurse asked if i would be oppposed to going on iv's and this time i said no , i wouldnt mind. Once i get back to feeling like i can do things normally again, i am going to put much more effort into "opening up these lungs" and getting much more active. I detest when i go food shopping and i find it hard to walk at a normal pace and not cough. This constant cough is driving me NUTS! I've had this cough for years and i know i cant get rid of it, but i would like to walk and talk at the same time comfortably without being totally out of breath. I guess i was spoiled by being healthy all the years in my past, and now i have to start really working to stay as well as i can. I dont want to let this get too out of hand, like i feel i have been doing lately. Its amazing how we sometimes do not realize how things are going because we adapt to how we are used to feeling. I used to sing in a band years ago and i can tell real fast how my lungs are doing when i try to sing something i had no trouble with in the past, and now cannot even finish the song or hold the notes near as long. I dont like it and have finally decided to try to do something about it now before it goes too long. My email is jinxnick@aol.com if you ever want to chat, email me anytime<img src="i/expressions/face-icon-small-smile.gif" border="0"> Diane
Hello Diane, I have psuedomonous, which i basically have had for around 15 years. very fortunatley i have not had to endure the added extra bind of dealing with cepacia. But i wanted to reply to your message because i know somebody that has had cepacia and has now not got it. When i was in peadiatric hospitals recieving i.v treatment, you tended to see the same faces again and again especially as it was a childrens cf centre. One of my friends was told she has got cepacia and because it was about 10 years ago when it was not known about so well she would be put into isolation on the hospital ward. about 2 years later her tests came back negative and has been so ever since, i now see her every so often at our adult unit and everything is still kool. So it isnt impossible to shake it off, although it must certainly seem like it. Also Ceftazadime is probably the most widely used iv antibiotic used here in conjunction with say tobra of gent. It is certainly a good one for me and ive had it on and off for years and years. Anyway take care David (england)
Oh David, thank you for replying and letting me know that there is some hope for getting rid of cepacia. I pray for an answer to the problem of cepacia a whole lot. Do you happen to know what antibiotics she was given when she had cepacia? Just for curiousity sake, i am interested in what worked for her. I seem to have a resistant "bug" as my doctor calls it, but resistant doesnt mean impossible to me. I started walking on my treadmill tonight, and i think i will continue to do other activities to liven up my lung capacity, and improve upon my stamina and endurance.
Hello, Glad that it was worth sending that message, Well strangley even though you,d think after 10ish years i would forget, but i was so impressed, because of the big deal everyone made about cepacia at that time that it made me take note of what she was taking. Certainly ceftazadime was one of the iv antibiotics she was given during the admission when i was there and she was declared free of cepacia, and i believe the other was tobra or gent, i dont know if iv therapy is the same in the U.S as here in england, but they tend to team gentamycin or tobramycin with one other, usually ceft or aztreonam. they are they ones used mainly and the others are held as a safety net should they stop being effective. Can i ask you a question......Is ceftazadime as widely used there as it is here? the impression i get is that it is not so widely used in iv treatment, but i may have got the wrong end of the stick? there certainly is hope it may go, the body has the ability to astound as well as shock!! lets hope it sorts that cepacia out somehow, even with a little help from medication. your welcome to email if u wish im kool either way. Take Care David davidthomas21@hotmail.com
Hi David, I dont know how much ceftazadime is used here, but i do know that i have gotten it while on iv's quite a few times. When i go on iv's , its always a combo of two or three. Even when i am on oral i never usually take just one, since just one, rarely does the job for me. I would LOVE to find the combo that irradicates cepacia. I will keep your email since its always nice to correspond with other cf patients and have someone who knows what i am talking about. Thanks,<img src="i/expressions/face-icon-small-smile.gif" border="0"> Diane
Our daughter has had Cepacia for a long while now. we are down to 2 iv drugs. One is the ceftazidine and the other meripinum...that is it! We are looking in to go to a center in Israel in March. It is in the Dead sea area and is supposed to be amazing and offer great results in increasing the lung functions. you can look into it on the cf israel web site... If we can get 7-8 cf'ers with Cepacia to go we can get a break as well. The month of March is for Cepacia only cf'ers. Hell what do we have to lose? maybe there is something that they don't have in the states???? I feel it is worth a shot, my daughter may not see her teens! frown;feel free to contact me to623-879-9232Sara:
I am sorry to hear your daughter is down to only two drugs...thats so frustrating! I am sure Israel has other drugs that aren't used in the states cause I know the U.S. has very strict guidlines before using a drug, but that doesn't mean they don't work or aren't good drugs. Have you thought about doing test trials for drugs. Although they are in the testing phase if its a good drug at least it may be helping her. Some people don't like the idea of trying brand new drugs, but its just an idea
Hi Sara, im sorry to hear your daughter has cepacia at such a young age, but dont give up hope on the antibiotics just yet. what doesnt work right now, just may later on down the road. It seems just when i am resistant to something and then havent had it in a while, after a few months it shows that i am suseptable to it again . It doesnt happen with all the antibiotics but it does with some. I have heard about the dead sea area in Israel and i hear it does improve some patients and if your daughter is up for that, i would say , go for it. She may benefit greatly from it , you never know. Either way, good luck and never give up hope. I'll say a prayer for your daughter<img src="i/expressions/face-icon-small-smile.gif" border="0"> take care ~ Diane
Seems like all I have done for weeks is search the internet, trying to find new information and people that have lived with B.Cepacia. I have a 17 year old son that just cultured it within the last 6 weeks. Although looking at his health history we now wonder if he has had it since January. He has almost a 50% decline in pulmonary function results since then. He has been on IV antibiotics all but 2 weeks out of the last 2 months.The hardest part of this is watching what he is going through emotionally. He feels like his whole world has changed. In a joking manner he refers to himself as the boy in the bubble. I know it is his way of dealing with the emotional effects. So going on week 3 of the antibiotic cocktail we are currently on he is already starting to show signs of getting sick again. He is starving to just be a normal 17 year old.Thanks for listeningMichelle
Hi Michelle, I remember when i was first diagnosed with b.cepacia, i was going thru exactly what your son is going thru. I was so horribly depressed i didnt know what to do and anything anyone said to make me feel better didnt help at all. I just needed time to adjust to the idea of having another problem, and go on. The reason your son feels his whole world has changed ,is because , his whole world HAS changed. He knows life with cf as being one way,and now that cepacia has entered the picture, things may be a bit different. I am not allowed in certain examing rooms at the clinic, i have to always have them use the "cepacia" machines on me. things like that, but sometimes with b.cepacia you feel sicker than you used to when it was just cf without cepacia. I need iv meds more now than ever, in my life before cepacia. BUT the good news is, after being sick for a long period of time at first, it seemed to take a while but it all calmed down . Tell your son to keep his spirits up, there is always hope, try to keep up his weight, the lungs need all the extra calories they can get. It may not make him feel better, but someone out there knows exactly what he is going thru and it'll take work,but he will make it thru. I will say a prayer for him. feel free to contact me anytime yourself or your son can also writeme. I'll help anyway i can. ~ Diane jinxnick@aol.com
Hiya Diane,Great to read your views on cepacia...... in the nicest possible way. I too have grown b cepacia for the last 6 years, and can honestly say , that up toprobably 2 years ago, i didnt realise i had cf... i led a "normal"life etc.This last 2 years have been horrendous, and i feel just like you that the light isnt in that flippin tunnel..... where the hell is it? I would love to wake up in a morning and feel great.. not like i have had 10,000 elephants thud over my chest and cant get my breath.....Once im up im hypoing like nobodies business,..... u just wonder what else cf can throw at you.Im 38 also, been treated at Leeds with shared care at huddersfield(which is fab!!), but just having few physological probs, which my doctors having probs with......Hope this makes u smile, and look forward to you writing againJulia xx
Hey there, My doctors have told me that with agressive pt and nebs, it is very possible to get rid of cepacia! Right now I'm on TOBI, pulmozyme and hypertonic saline. That might be a good idea for you Diane if your lungs are really irritated. Here in Colorado it's so dry, so we use it to help coax stuff out and moisten the airways. Are you on any steroids? That can also help w/ irritation. I use Flovent twice a day in an inhaler, but it also comes in a new inhaler where it is mixed with Servent and is a powder that you inhale. I like it b/c you get the med w/o most of it going on the back of your throat.Debbie22 yr old w/ CF in CO
Hi Debbie and Julia ( last two posts), In answer to your question debbie, i am only on pulmozyme and i also use my inhaler ( albuterol) maybe once or twice a day. I also take two different antibiotics every day, (we keep switching them every two weeks or so to avoid resistance) Usually one of the two is tobi with an oral antibiotic as well. I used to use flovent and it may have helped, but the last time i was using it, was when i had a bad eposide of hemoptysis and required an embolization, and i now cannot get the idea out of my head that the flovent didnt cause it. It was the most traumatic exprience i ever went thru<img src="i/expressions/face-icon-small-sad.gif" border="0"> that scares me to this day to even relive it in my mind. What is hpyertonic saline? and what does it do? my lungs are always irritated, It always feels like i need to cough, and it drives me nuts. If there were something out there i havent tried yet ,that wont make my lungs bleed ,i would love to know about it and give it a try. Julia ~ It is hard to, all of a sudden, get used to being sick. I know how you feel about that one. It can be so depressing becuse you just want everything to go back to how it once was. It is so frightening to think this is how i will always be. Well i sure HOPE and PRAY that this isnt the way it will have to be for any of us. I think what we have to do is keep our attitudes directed toward thinking that we can somehow get the upper hand once again . I once asked my doctor how in the world can a pile of bacteria be smarter than all of us . Doctors who have these high fallutin degrees in all kinds of science and technology, WHAT is the problem here when a bacteria can not only outwhit us, but outrun us? Some days i think we cant be far from an answer when i ask that question. o well, i am starting to ramble, so i will quiet down now......
Diane, Hypertonic Salien is basically salt water. It comes prepared like pulmozyme and tobi in those little squeeze containers. It moistens up your lung tissue and helps you cough like a humid climate would. It shouldn't have any ill side effects. Something you may want to try is aromatherapy, if you are open to alternative meds. Eucalyptus oil, for example, when burned in an oil lamp can kill airborn bacteria, and make the room smell nice. Debbie
Hi Debbie, I asked my nurse about the hypertonic saline, and she told me they do not like to use that with patients with a history with hemoptysis, because it can be very irritating to the lungs. I guess i will have to find another route to dealing with the irritation other than coughing more than i want to.... Thanks for the info<img src="i/expressions/face-icon-small-smile.gif" border="0"> ~ Diane