I am so sorry you have received such discouraging news. I can understand how you feel kicked in the stomach. I was this upset when I found out I had m abscessus, a really bad bug that has NO antibiotic to treat it. I have really been researching the importance of juicing green veggies and alkaline environment for the body. Maybe look into books on alkaline/acid balance and the ways to keep John's body more alkaline so he can "fight " his bugs. Much research has been done to show that cf is actually a hyper-acidification of the lung. This hyper-acidification leads to the break down of immune defense which allows cfers to pick up all sorts of bacteria that thrive in acidity. Since raising my pH to more alkaline, I have had a HUGE resurgence in strength. While my lung functions are essentially the same, my m. abscessus is in "remission"
While I don't know that you can eradicate b. cepacia, believe it possible.!! My docs told me I would always see m abscessus in my culture....now I culture it very seldomly and it is sensitive to some antibiotics. I cultured it EVERY culture for 13 years every single time...now it is sporadic. My doc just told me yesterday it is really not a concern at this point.
I also used to have 3 mucoid pseudos, now I have just 1 that is mucoid...they have reverted back to regular. After all, they create biofilms to protect themselves against the harsh acidic environment in the cf lung. My kidney function has also improved tremendously. My BUN, Creatinine and BUN/Creatinine ratio also improved a ton. I went from above normal on all of these to perfect kidney function....my doctor was stunned. He told me before that we would have to dig deeper to see if this was the beginning of kidney disease...now he is shocked
I began by testing my urine pH 3 times a day. To my utter horror, my urine pH was the MOST acidic it could be...a 4.5 on the scale...regular urine pH should be bt 6.78 and 7.4. The body has to keep blood pH at a perfect 7.36 to 7.4. It does this by stealing mineral stores (alkalinizing minerals magnesium, calcium, potassium) from organs and bones. In cf the CFTR channel keeps the alkalizing bicarbonate from reaching the extracellular space....making cfers even more acidic. The longer the body is too acidic, the faster degenerative illness sets in.
If John is not wanting to drink fresh juiced greens (although you can make them taste great by adding a green apple and carrot), there are supplements that are pure green. I would suggest one that is only green veggies-no grasses....as many people are allergic to added grasses. Also, research alkaline water...and water ionizers. The Japanese are HUGE believers in the importance in drinking ionized alkaline water...there is a ton of info out there on this topic. And really, stay away from sugar...there is nothing worse for acidity than sugar. In diabetes, kidney failure is due to acidic sugar waste damaging kidneys. The body is trying to rid the body of excess sugar, sending all those acids through the kidneys.
I know this sounds nuts, but I am a big believer in the effects of alkaline environment on health. Interesting side note. All IV and oral meds make my urine so acidic except for one, zithro. When I take zithro my urine turns more alkaline....I personally believe (and this is just my stupid opinion) that zithro affects lung pH and that is why pseudo does not grow and inflammation goes down.
I know you are heart sick right now about this diagnosis. But, there are many active cfers who are healthy and doing well with it. Maybe go to cysticfibrosis.com and post in the adult section. Many cepacia patients will resond that it has not hurt them too much...others will say differently.
You will be in my prayers