Hi Kris.
Congrats on the new bebe!!
The ongoing debate on cf and mycobacterial disease is: Is t infection, which is making you sick, or colonization, which really is not doing much of anything.
Are you feeling worse, are your pfts down, your weight down, increased cough? If they have recently treated you with IVs for a cf exacerbation and your are still feeling poorly and doing worse then yes, you probably want to be treated.
I was first diagnosed in 1995...and still have never been treated for it with three drugs that lasted more than 2 weeks. I, too, was treated with Biaxin and Cipro and could only last thee days on this combo b/c the two of them together, no matter how far apart I spaced them, made me violently ill. I would be fine and then be barfing 2 minutes later on my car floor.
At the time I had a doc who was very irresponsible in the way he treated me and so he just treated the myco with on drug which of course made me so resitant and actually my bug mutated to abscessus instead of MAC... I have never cultured MAC again only the horrible abscessus. Believe me, you want MAC it is the easiest of all mycos to treat.
My guess is that if you can't take Biaxin and Cipro, they will most likely put you on IV amikacin or Zosen. Make sure that they keep you on Biaxin as it is proven to increase gamma interferon in the cells. IFN gamma is your main number one defence against intracellular bacteria which is what MAC is. By staying on this you are increaseing your IFN gamma and at the same time keeping your body in a TH1 fighting mode. Healthier cystics have high IFN gamma and glutathione levels....those who are sicker have low and experience a Th2 response which basically is jsut inflammation with no reason or fighting ability....charcterized by neutrophilic inflammation. . If you cultured a myco, such as MAC, your intracelluler immunity is definitely compromised and we need to get the Th1 turned back on....of course, this is why cystics who are on zithro do so well...it increases IFN gamma and turns on Th1 response.
Because the drugs are so tough on you, if I were you I would start investigating antioxidant supplementation. The reason being...all drugs do their dmamge through stressing the antioxidant system in the body. Because you have cf, you already are deficient in glutathione..the most important antioxidant and the one that protects you from TOXIC effects of many different chemicals and stressors that increase oxidative burden on your little body. Because you have pseudo (which inactivates IFN gamma), you have cfrd, and MAC your body is making so many free radicals and you are overburdened anyway so instead of being scavenged by antioxidants, your liitle radicals are doing major damage...and there is nothing to protect you when something else is added to the mix.
I have not been treated for abscessus except ofr two weeks and I was so sick from the drugs they had to dc them...I lost 15 pounds in two weeks to hit an all time low of 94 pounds. Since then I have been working on getting my immune system working again. I take supplements to increase glutathione, other antioxidants....I recently had my IFN gamma level tested and it came back almost undetectable. That is my next project...to get that up. My doc called yesterday, actually, and he wasvery confused because this CT scan was better than November which was better than JULY.... He said there appeared to be no more evidence of myco disease and he couldn't explain it.
If I were you, if you are feeling bad, let them treat you. Sometimes they have to fool around with medications to see which ones will work best and that you can tolerate. I wish we could have treated me right when they found out I had it...after high dose steroids....which turn off your immune response. Most cystics with MAC in a small scale study actually acquired it after immuno suppressing drugs. Any way, treating and getting rid of it will help you feel better..
Also, probiotics are HUGELY important to a cfer especially if you are going to be treated.... They decrease inflammation, increase IFN gamma, and replace lost good bacteria.
I recently put together a 100 page study/clinical report to give to my doc concerning treating resistant myco with IFN GAmma. If you would like a copy, I can send you one...it will defiinitely be good info for you at least.
PM me also...I can call you and give you more info....
