Discontinuing MAC antibiotics

Hi Melissa, I hope this will help him. Can you get him to drink smoothies? You can load them up with all kinds of nutritious calories to tempt him.
With all the fresh fruits right now, fruit, avocado, vanilla protein powder, yogurt (if it doesn't make his mucus worse) full fat coconut or almond milk - pureed with ice. I used to make it by the blenderful and sip 6-8 ounces every hour or so.
Also cashews, walnuts pecans, hazelnuts are all good high protein/fat snacks. Leave a little bowl near his chair for munching. Oh, and ice cream sundaes - if dairy is out, there are lots of alternatives available
Sue

Can you share what side effects your husband has experienced. I have been on the 3 meds for two years and am experiencing a range of health issues. They have hugely affected my quality of life. I don’t feel hunger and rely 100% on smoothies with various fruits in them. I have lost a little weight but there are days I can’t even walk across a room due to fatigue. I also am experiencing a lot of dizziness and even passed out a few weeks ago. On days when the dizziness is really bad I stay in my recliner most of the day. My hearing is taking a hit which I was told is due to one of the meds.
Diana

Hi Sue,
That’s a great list and similar to the advice my husband’s pulmonary nutritionist gave us. The lack of appetite and feelings of fullness are two of the biggest hurdles, aside from the ongoing shortness of breath.
Bruce has been eating multiple small snack size meals a day of nutritious foods that are also low volume and high calorie and sipping on fruit and protein filled shakes and smoothies. Strawberry shakes are a favorite but it’s challenging to truly pique his interest despite the snack basket at his elbow.
Thanks for the support and information. I will be back with updates.
Melissa

A lack of appetite and feelings of fullness are what I am also experiencing. Why bother to go out to eat when you don’t feel like eating? I also deal with shortness of breath. I once said to my pulmonologist that I felt as if I would always be dealing with MAC. I did note that he did not respond but it was still a surprise when I read that what we are striving for ‘remission’ rather than a cure.

Diana

Hi Diana,
The side effects from the MAC drugs that my husband Bruce has been on for almost a year have been pretty consistent and persistent.
There is a lot of what he calls brain fog, or an inability to focus or concentrate on anything for very long.
Loss of appetite or desire for food is another biggie which has led to a weight loss of 20-30 pounds on his already very thin frame. Some foods that used to be favorites such as pasta or red sauce are now a huge turnoff.
He also has gut issues including an ongoing and uncomfortable feeling of a full stomach.
Shortness of breath, another major side effect, knocks him out. He is unable to walk more than a few steps without gasping for air.
He has no dizziness but does use an oximeter which so far shows normal oxygen levels even when he is at his worst.
There is a lot of anxiety on his part, mostly triggered by the breathing issues.
Bruce had hearing issues early on from Amikaycin taken intravenously. He switched to the nebulizer version, Arikayce, and his hearing returned to normal.
His ID/Pulmonologist and our primary care doctor are supportive of the break from the MAC drugs, especially since there have been 7 MAC free cultures.
I hope this helps and that you can find some relief soon.
Melissa

Diana,
To your “remission” comment, Bruce’s ID/pulmonologist said at the outset of treatment that all she could promise him was “relief”, not a cure.
That was an eye opener for both of us, especially since we were in unfamiliar and very new territory with both MAC and Bronchiectasis.
We’ve learned a lot since then.
Melissa

Hi! I received a machine, tubes and vest via a prescription from my pulmonologist and paid for through Medicare. It all is supplied through Respironics. I’ve never had any problems with it. Many others on this thread have varied experiences with this intervention, but I have a chronic, dry cough, with very little sputum and I find this intervention helpful. It helps to bring up mucus. If your husband brings up mucus readily, I don’t think he would need something like this but it’s always best to check with his doctor. Day by day I enjoy and am grateful for something. Today, it was being able to volunteer for a few hours at our local hospital gift shop. Other days, it may be a squirrel running by or seeing the sun. Being grateful…

Anyone has low grade fever all day long even when on antibiotics? In my early days of MAC (5years ago), my low grade fever was in early afternoon. However after recent flare up I started to have low fever in morning after getting up and become higher as day going on, then drop down in evening.

Just go on website and make appointment. They take insurance like any other doctor

I have had a chronic cough for 3 years and recently diagnosed with Bronchiectasis. None of the treatments have gotten rid of my cough. It affects many areas of my life including my sleep so I am always fatigued.