Treatment B. Cepacia

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Rickengelage

New member
Hey everyone,

So I have been infected by the Burkholderia cepacia for a while now. Like a decade.
And always it was stable and I was doing good. Just sometimes some drop in health but then just take some anti biotics and I was good again.

Now treating this infection is getting increasingly difficult, my health isn't really stable. It goes up down, down, up...

So I was wondering if any of you have any experience in treating B. cepacia infection?
Any tricks that helped you?
A different combination of anti biotics that helped you?

If you have anything, please let me know! Thanks in advance!!::)

Also my weight isn't stable anymore lately. Its going doing, pretty fast at times. And I find it hard to get it back up and keep it there.
Anyone tips on that either?
It scares me to lose weight and also it doesn't make me look prettier;)

Well I hope to hear anything from any of you soon!

Also feel free to contact me at anytime on my snapchat: Riick4
Or add me on facebook. Rick Engelage.

We can talk from there!

Thanks and be well!
 
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brad.johns

New member
I also have B. Cepacia. I have had it for 26 years now. I am still in the stable category though. I have not had drops in weight. My resistance has increased but still able to fight infections with IV antibiotics. You can message me and we can talk more on facebook if you would like. Glad to know there is someone who has had this stuff for a long time like me.
 
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Rickengelage

New member
Good to hear youre still stable after 26 years! And yeah I would like to talk on facebook, you can add me? If you can find me? Its Rick Engelage.

Also glad to know in not alone with that shit bacteria! Even tho i wish it to no one ;)
 
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Rickengelage

New member
Hey, thanks for your encouragement! I appreciate it! And im so glad to hear your son is doing all good, keep that up!:)

I will look into the nebulized colistin and fortaz, I haven't heard of it before. Thanks for the suggestion!

B.cepacia is not an easy infection but somehow must be treatable! Im just in a down moment in terms of my health, hope to get out soon! Thanks for your support.

Wish you all the best too!
 
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Rickengelage

New member
Yeah ofcourse its a slap in the face to get an infection. Im scared to death at this moment. Someone just told me about a possible cepacia syndrome. Its scary.

But those anti biotics that youre talking about, are those only through IV's?? Or pills? How u take that?? I might wanna inform my doctor.

Thanks alot for replying.
 
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yanne

Guest
I have been infected with B. Multivorans since 2006. I have been stable for a couple of years, but since 2011 the infections started to return faster, after a hospitalisation. I've been in the hospital for 250 days in total the last three years. Since december 2013 I started aerosols with Meronem, and that worked. The infections stopped, and I've been able to live a life since then. I don't know how long the Meronem aerosols will keep me going, but I hope for a long time, because it's my last straw.
 
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kittencaitlin

New member
i just wanted to quickly reply about this. ive had cepacia for 15 years and though i am currently on the lung transplant list (i am 31 now) i was relatively stable and my decline was slow through that time. i did not experience "cepacia syndrome." One thing that MASSIVELY helped me and I wish i'd begun it at age 17 instead of age 22 was inhaled fortaz or generically - inhaled ceftazadime. i saw it mentioned on here but not a lot of detail. this changed my life back when i was 22 and i have used it continuously, much to everyone's shock, for the last 8-9 years. i dont do one month on, one month off. and i even continue to do ceftaz IV's if i need IV's, while still continuing the inhaled version of it. part of why it works so well for me, i believe, is that it is constituted with sterile water instead of saline, and is far less irritating for me than other saline-mixed nebs.

anyway i love it. even when i culture resistant to it, which is most of the time for the past 4-5 years, it still makes me cough every morning and evening and is the core of my therapy routine since it helps me clear so much stuff. recently Fortaz itself has been backordered (i just dont think theres enough demand for it, so they may stop making it), but the generic ceftazadime version has been ok.

let me know if you have any questions. cepacia is not fun but its not any kind of "sentence." Don't be scared either by the fact that i am waiting for a transplant - weirdly enough i dont think i'd trade where i am right now for something else.

in terms of other antibiotics that helped over the years (IV), i seemed to have most luck with meropenem for a while, and also IV ceftazadime like i said, and its cousin, cefapime. also bactrim and cipro, but those are normal for all of us. although i wish i'd been able to avoid fluoroquinolones in my life....they are just so intense on the body.

Caitlin
p.s. I live in Boston and am seen at Children's
 
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Rickengelage

New member
Thanks alot for teplying and giving me the helpful advice! I have heard the ceftazadime on here alot along with fortaz, im realy curious about what this is since I have never heard of it before. At my next visit at te hospital I will suggest it to my doc! I hope I can try it! How many times a day would you inhale ceftazadime?
How did it work for you?

And im also wondering how you declined in longfunction to the point of being on the transplant list? If you don't like to share that story, that's completely fine to:)

Anyways I hope soon there will be a doner for you and youre going to be absolutely good again! Feel free to contact me just to talk and stay in touch or whatever, you can add me on my facebook: Rick Engelage from the Netherlands.
Facebook.com/rick.engelage.52

So you guys have been giving me alot of advice, thanks alot! I have some myself too!
First time I started using this medicine, I could not believe that almost nobody new about this. It was like a wonder medicine for me. and a young girl at the same hospital that just cultured B.cepacia who started using it, got rid of the B.cepacia after using for 2 weeks.

Unfortunately for me, that didn't happen. But I kept using the medicine because it skyrocked my lungfunction and made me feel alot better!

It is called Amiloride. Inhaled Amiloride.
Used three times a day together with Inhaled Tobi 2x a day .And oral Cotrimoxazole also twice a day one tabled.

This did wonders for me.

Now it still does, it helps my lungfunction go up to its highest, every single time.

It doesnt work as good as the very first time though. Also its alot of work to inhale tobi twice a day and amiloride three times a day.
Hard to keep up for longer periods.

But trust me, its worth it!

You should definitly consider using "Amiloride"

If you ask your doc, he would might think you gone crazy and probably doesnt know what youre talking about. Since its little known.
But for it does help. And there are a few articals about the use of it and stuff. I will try to find it for you guys and send it on here, so you can also show that to your doctor, so that he can give it to you!

Again feel free to contact me on my facebook! From there we can keep in touch, also u can contact me on my snapchat, Riick4

Alright thanks all for replying!
 
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foxalive

New member
Have you tried Fluimucil antibiotic IT?
It consists of an antibiotic (Thiamphenicol, glycinate acetylcysteinate).
I have B.Cepacia many years, this drug helps me.
 
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