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@unicorn

My name is Christa, I have a child's glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear. you guys know how terrifying it is when the blood gurgles up. (just happened this morn) This is why I mentioned the death pill. i don't want to go by way of pulmonary embolism or choking, jeez, can't we just die in our sleep??? I have gotten some great info on this site just now!! Thank you so much!! i feel like I have best doc in the world, Massachusettes General, Dr. O'Donnell, they study this disease and get tests from Jewish.
I mean, I am paying a fortune flying to Boston. I will ask about the colistin and tobramycin and about alternating monthly antibiotics. This is different, this is good. Keep it coming. I am less afraid when talking to someone. xoxoxo

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Replies to "My name is Christa, I have a child's glee about life, so I am a Unicorn...."

@unicorn Crista,
a little blood will happen from time to time. If it is a small amount, it
usually clears up on it's own.
 

I've had several episodes of hemoptysis or coughing up blood over the years.  It's bright red usually which lets me know it's definitely from the lungs.  Once I was on a cruise ship (first night) and coughed up what I thought was a significant amount.  It  scared me so bad and I'm a registered nurse.  I have another question for the group.  The doctor put me on Zithromax 500 mg three times a week.  Anyone else on this?  It gives me abdominal pain and diarrhea and I'm taking probiotics.  Any suggestions.

Cindy

 

 

 Me too. Same side effects. I was on clarithromycin first but that gave me way more side effects, so the Vanderbilt ID doctor changed me to the Zithromax. 

Irene,

I just don't know how I can work and take the Zithromax.  Can't deal with the GI issues.

Cindy

 

 

Cindy, I'm taking Azithromycin (same thing?). I had trouble the first few weeks and then it settled down. I never had severe diarrhea but felt like I had bricks in my stomach every day. How I felt each day was measured by how many bricks it felt like were in my stomach. I used to take 3 different probiotics then settled on Digestive Advantage since it has binding agents in it that get more of the bacteria into your gut. Often, many of the bacteria never make it to where they are needed the most! Learned a lot about probiotics during this process. Linda M

I am sooo sorry Cindy. I am fortunate or unfortunate depending upon how you look at it to have retired from teaching in 2014. I didn't really want to but just couldn't go on feeling so exhausted and losing weight just breathing. It was soon afterwards I was diagnosed with MAC/MAI and bronchiectasis. I so could not work on these meds Cindy. I am sorry I am no help. Bananas? Rice? Won't your doctor prescribe an antispasmodic or something? What does he/she say about it? I am so sorry.

I haven't told the pulmonologist yet but I probably need to.  I didn't take the Zithromax while on vacation due to not wanting the diarrhea and as soon as I took it when I got home I had the GI effects.  From different posts I've seen on this site I guess I'm pretty fortunate.  My bronchiectasis isn't that bad yet.  I've gained weight instead of losing and I really don't have many pulmonary problems except for occasional wheezing and the thick mucous plugs.  I hope you are doing ok.  I'm wondering how long I can last at work.  I just turned 64 and I need the insurance for my Humira for my RA.  Thanks for the support.

Cindy

 

 

Thanks Linda.  Maybe I'll try the Digestive advantage.  Azithromycin is the same as Zithomax.  Do you take everyday?  I take 500 mg three times a week with low dose prednisone.

Cindy

 

 

@cindyrnc Hi
Cindy. My dr at Mayo said Zithromax should be a last resort drug because they
consider it a BIG GUN. MAC can become resistant to it, and if it does, there is
not much stronger out there to fall back on. I used to get that prescribed all
of the time in the past whenever I had any kind of infection. I was never tested
for what kind of infection I had, just put on a z-pack. My dr said said that is
a dangerous road to go down. That is a fairly well tolerated drug. If it is
giving you diarrhea, then you should not be taking it.
 

@cindyrnc Wow, I am amazed at the number of people that cannot tolerate
zithromax. It does not affect me at all. My current Mayo doc will not prescribe
that antibiotic because he considers it a big gun and wants to save it as a last
resort. Are you all on it because nothing else will work?