Is there any successful story?

@louis228
What do you mean by infusions? IV? What kind of port? How can you do that long term?

@irenea8
Hi Irene,

I had to have a pick line place in a vein on the inside of my bicep which has a catheter that runs through the vein and stops before reaching my heart. It is designed to stay in for up to 6 months but you can't get it wet. I just got a call from the doctor that my liver enzymes have gone up too high and have to stop the imipenem infusion and will be placed a on clofazimine pill starting tomorrow. It is a study drug that had to get approval from the CDC. My Bacteria is antibiotic resistant to all but 4 antibiotics and now I will only have the three. I no longer have a fall back drug. We will see what happens. Have a blessed day.

Lou

@becleartoday Hi Linda-
I had not thought of asking you this before.
Had you lost much weight and then had to build yourself back up to get to a BMI of 20.5?
The haemophilus was treated with antibiotics, was that during the time you had a MAC infection?
What antibiotics were you on while you had haemophilus ......and were those antibiotics taken while you still had MAC or were they taken after clearing the MAC on your own without antibiotics????
Did you cut out all breads, cakes, etc. and if so do you still stay away from them????? I buy Organic Seedtastic Bread from Aldi with Whole Wheat /Cracked Wheat/Wheat Flour and now wonder if that is adding to my inflammation??? So again, do you stay clear of bread etc. ??
Overall I have been eating dense foods 98% of the time. I was diagnosed in 8/2022 with BE and eventually came to understand I had MAI with my appointment visit I made to NJH in 10/2023. I continue to stay away from the antibiotics and 'claim' on am still on watchful waiting as NJH put me on. My mucus clearing is constant due to what comes up to my throat continuously and with it being so annoying... I clear almost all day long.
Thanks.
Barbara
P.S. The mucus clearing goes on through the night when I wake up to go down the hall.. I allow the cup to sit in a clear plastic cup for 12 hours and all settles down to the bottom of the cup and you can clearly see the yellow color mucus that settled to the bottom....more than a teaspoonful. Any thoughts, opinions???

@helen1000 do you mind clarifying what you mean when you say NTM is rarely cured? Do you mean a negative bronchoscopy sample does not indicate being cured? If so, what's the rationale? I understand NTM infection can't be prevented but my interpretation of "cured" is that the NTM decreased to clinically insignificant levels in the host.

@six5532one If you have a negative bronchoscopy, that means you are infection free, then you are cured. Congratulations! AWC is super important as our lungs may not be able to effectively clean the " stuff" genetically, comparing with people without lung disease.

@blm1007blm1007
With my bronchiectasis and MAC diagnosis, I didn’t lose weight, but I had spent most of my life watching my weight closely. At 5 foot 9, my long-standing preference was to stay around 130 pounds.

After listening to several conferences and watching Michelle MacDonald’s nutrition webinar series, I began to understand that I would likely do better with a higher BMI. From that point on, I became very intentional about gaining weight rather than maintaining leanness.
I eat everything. I don’t eliminate gluten, dairy, sugar, or entire food groups. For me, it’s about eating enough protein, carbohydrates including starchy carbohydrates, and healthy fats every day and at every meal. My body doesn’t have to ask for food. I’m always serving it up. And after eating all that good food, I often enjoy a couple of cookies or a dish of ice cream. And on occasion, I have a glass of wine with my dinner.

To answer your question, at the same time, I was dealing with a Haemophilus infection along with MAC. Clearing the Haemophilus, and possibly other non-culturable bacteria in my lungs, seemed to flip a switch in my system. My lung microbiome appeared to shift, and my body responded.

Recently, I had a CT scan that showed marked improvement. Of course scarred airways never go away but much less impaction, consolidation and tree-and- bud.

In addition, as I’ve shared before, I stay consistent with my airway clearance, exercise, and stress management. I truly believe it’s the combination of adequate nutrition, infection management, and daily self-care that has helped my body regain strength and resilience. And I view all these things as being interconnected. One impacts the other.

And lastly, I want to say that being consistent does not mean being perfect. I allow myself a day off here or there when I need a break, and it doesn’t negatively impact my well-being. If anything, it helps me recommit.

I hope this is helpful,
Linda Esposito

@becleartoday, I recommend avoiding starchy carbs, sugar, and all ultra-processed foods. Focus on an anti-inflammatory diet with intermittent fasting. Avoid the cookies and ice cream. Mix berries with Greek yogurt, unflavored and unsweetened. Buy organic foods and avoid McDonald's. I have been doing this for 5 years, and it has improved my metabolic health and maintained my microbiome. There are plenty of things that can eat and gain a few pounds. Keep your cellular health going strong, and you can fight these infections. Good luck

@becleartoday @nickraosr Wow....how we are all different in what food items will do to us or not do to us and what we can or cannot have due to what it may or may not due to us.....due to our degree of the illness and condition of our lungs.
For me I mostly stay away from sugar and ultra-processed foods due to all the reasons we know...not the best for us overall. For me it fresh food items and very few canned items...like fruit without added sugars etc. in them, hopefully natural juices as the labels say. I do cheat some with ice cream and a piece of chocolate but not often.
My problem is that with drinking water or eating, no matter what food it is, I have to clear what comes up to my throat after drinking water or eating. It is constant all day long. I almost hate to eat. I do eat throughout the day to try to keep the weight stable (99-- 102lbs and would like to be 118lbs) or hopefully gain weight. I am staying stable but hard to put the weight on for me. For some of us it has always been hard to put the weight on just as it is hard to take it off for some people. It truly goes two ways, metabolism I guess.
I understand the Organic suggestion but at 83 + 3 months.....I prefer not to put myself into that stipulation and requirement for various reasons. My sister has been vegetarian and done the Organic route for most of her adult life....she is 70 and no chronic illness and able to clear temporary health problems on her own, so far. She also knows her body well, which is the key for all of us. She and I do supplements with vitamins and minerals that have worked for us for years. I rarely was sick with colds, flu, etc....to this day. My sister has worked for years in health food stores and Whole Foods Markets in the vitamin dept.
I do supplements for a boost when I believe I need certain ones. I also believe we need a certain amount of fats, but those that I have often have to be good fats...for me.
I have decided to stay away from the Aldi Seedtastic bread for a week to see if it makes a difference for me with the constant mucus problem.
Thanks for your responses....all thoughts are a help.
Barbara

My ID doctor at NJH basically said the same. I was diagnosed with nodular BE/M. Abscessus and was told the cure rate is 50% (for nodular BE) with a reinfection/recurrence rate of 50%. I sure don't like the odds. Last month, my local ID told me she thought I was cured after 4 negative cultures over a span of 5-6 months and then my latest culture came back positive again.
I just keep nebulizing with ACT and try to maintain a healthy lifestyle-my goal is to stay healthy, so my body will continue to suppress and hopefully eliminate on its own.

After a year of airway clearance with albuterol and 7% saline twice a day and a month of Tobramycin,my sputum cultures show no Mac and psuedomomas. I feel that is success!