← Return to Extreme fatigue with MAC

Discussion

Extreme fatigue with MAC

MAC & Bronchiectasis | Last Active: Oct 29, 2022 | Replies (310)

Comment receiving replies
@windwalker

@src3acs, As far as treatment goes, different doctors have different ideas about how to treat mac/bronchiectasis. That is what makes it so frustrating for us patients. One thing for sure is, you must arm yourself with as much information as you can about it. That way you know what questions to ask and also things you can do to help your situation. I have been on this site since 2016. I have seen one person come back on here and say that she has gone through the Big 3 antibiotic regimen and is mac free and has been for years. We can speculate that others got better also and just left the site. I have asked that those who are concluding their treatment to please check back and let us know how they are doing. They can be the beacon of hope to others. @irene5, had once said that she wishes she had gotten the Big 3 antibiotics sooner because of lung deterioration. (that was you wasn't it Irene?) I cannot say for sure that my delay in a regimented treatment didn't cause my lungs to get to the point where they are at now, which is very low lung function. Please do not panic or get depressed because of your diagnosis. Everyone's experience with this is different. For example: look at @ling123, she is proof that we can have this disease at varying levels. For some it is a minor impairment, for others it can be deadly, and most of us are somewhere in the middle. There is a lot of good information on this site about dealing with this disease, how you get it, how you prevent re-infection, etc. Medical sites like Mayo Clinic, John Hopkins, and National Jewish Health are also good sources. It is important that you do the work to learn all that you can about. We are here for you!

Jump to this post


Replies to "@src3acs, As far as treatment goes, different doctors have different ideas about how to treat mac/bronchiectasis...."

@lisanova@windwalker my doctor said to me last week that bronchiectasis are seen on people who are smokers or have had many pneumonia when  they were young or older.  He give ma a prescriptions of Havelox (antibiotic) (spare) always with me in case I start

a cold and I feel some congestion, he said do not wait start your antibiotic for 10 days to make sure you don’t get a pneumonia.  We can also get bronchiectasis from aspiration of liquid or acid reflux in our lungs.  Why women I think our system isn’t as strong

as a men so I am ordering my reincarnation lol just joking! Nick

@lisanova I often think if some famous person were to get this and it got allot of publicity, then we might see more being done about this or if more Men were to get this, would we see more being done. How can we get our voices heard that we need more research, quicker approval for the Nitric Oxide trials etc

@jkiemen One way to get our voices heard is to register on http://www.ntminfo.org I am registered. You remain unknown unless you make yourself known. All of us should be registered there. That way, grants for more resrarch get given, but the gov't and other grantors want to see real numbers. They need to see that it is a growing number of people.

@jkiemenHi Jo Ann. I keep wondering the same thing. Would testosterone help us? BTW, how are you doing? Are you feeling any better mentally?