I have Cepacia for about six years.
At first condition deteriorated badly, gradually has stabilised. But she never got so still. Now it is relatively stable.
I tried to get rid it, but it did not work out. In Russia, the bad quality of care.
Hi, nocode!
I hope in your country Kalydeco is available and you can give it a try!
Could you clarify what you have second mutation? You wrote - it does not seem to exist :)
What an infection in your lungs?
Have you tried Fluimucil antibiotic IT?
It consists of an antibiotic (Thiamphenicol, glycinate acetylcysteinate).
I have B.Cepacia many years, this drug helps me.
Hello everyone :)Thank you for having created this topic!I was so glad to find it! This is an incredibly great to meet you here :)I’m 32 y.o. I have r334w-f508del. And B.Cepacia many years in my lungs.I am from Russia, sorry for my English, it’s so poor.
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