Low energy

Hi Helen1000,
I too was put on Arikayce after 14 months on the Big 3 (the only symptom noted was fatigue). Arikayce may have helped me convert to negative for NTM/MAC in 30 to 60 days from starting the drug but unfortunately, it outlived it's usefulness shortly thereafter. (protocol called for remaining on Arikayce for 12 months from the month you converted.) My symptoms by
by 11/24 were full blown. Terrible vocal cord problems, a 50% loss of breathing capacity/shortness of breath and could not walk more than 200 feet without leaning against something to catch my breath and forget going up stairs or a hill. Also tremendous fatigue which did not permit me to exercise or play tennis. My Pulmon and ID Docs came to the conclusion that I needed a holiday from Arikayce and within 3 to 5 days the symptoms subsided. We all think that perhaps patients like myself who also suffer from COPD/Emphysema may have a harder time tolerating Arikayce. The doctors said that my case was the most severe they have seen.
Good luck with all and onward and forward we go,
Flo

Helen
Have you looked at or tried the following:
Jarrow Formula of Saccharomyces, Boulardii + MOA 5 Billion CFU ?
or
Mega Food Women's MegaFlora Probiotic/Prebiotic 50 Billion?
or
Liquid Bio-K?

What are your thoughts with these?
Barbara

Hi BLM1007
Thanks for the information.
For Jarrow Formula Boulardii + MOA 5 Billion CFU , I feel the CFU count is a little bit low. I use Jarro-Dophilus, Jarro-Dophilus with 50 billion count.
Mega Food Women's Mega Flora Probiotic, this is a very good products as it is very clean, high CFU, and specific strain of bacteria. But I never purchased this product before and I don't know its manufacturer. It has 5 billion, 20 billion and 50 billion CFU, which one are you using?
Liquid Bio-K, I cant find a link in amazon and I did not look into it before. I usually see rating from amazon for its popularity, and I also see its ingredients and CFU counts.

Hi Frankie160,
I am so sorry to hear your MAC is back again!! It happens to most patients and please do not feel disappointed. I did not feel much fatigue from amikacin, but due to bleeding, I switched it from 7 times to 3 times. I also rinse my mouth when I used it, so my vocal cord does not change much. Now it is 3 times a week, and my voice is back to normal. Did you drink a lot of water? It hurts kidney and liver function so we need to stay hydrated.

Did you try Smart vest? Maye it can help with COPD and airway clearance? I just got it this week and feel good about it.

In addition, I always try to put on more weight as slender type is prone to bacterial infection and make us more sensitive to medicine side effects.

I hope you stay strong and stay well!!!

Pulmonologist wants me to start Ethambutol and Azithromycin. I am lining up everything to start taking them. I do not want to start the antibiotics until I have all understood..... all I feel I need to know...such as... how, what, when etc. to take everything and in conjunction with what I will avoid when taking the anti-biotics, meaning foods and or supplements with high calcium and magnesium. Going to also wait to take them after I have had baselines on eyes and hearing. My tenative plan is the 50 billion count of Mega Flora, then at another time in the plan the Jarrow Formula and then possibly the Liquid Bio-K. I am not wanting the dairy formula for the BioK so I am still looking at them. I am now taking and going to finish the Sprouts 80 Billion 12 strains Women's Advanced and going to change to the 50 Billion Mega Flora.
My plan is the have a good couple of weeks of further building up my systems/immune system. Overall I am in good shape per blood tests etc. and am also doing well in all areas that one would be categorized as having a full blown exacerbation. Have not had that, so far. Holding strong at 82 and 18 days!
Barbara

Hi Helen1000,
Thanks for your note but I have converted to negative for MAC in August of this year and have had 3 more sputum results that indicate that the MAC is gone for now. It could easily come back and I will be ready.
I do believe Arikayce may have helped me to convert to negative for MAC after almost 18 months on the Big 3 with no change. Thanks for your encouragement.
Good luck with all that you are doing.
Frankie 160

Hi BLM1007,
I wish you good luck with the Big 2. Is there a reason why Rifambin was not included for the Big 3 protocol?

I was on the Big 3 for a total of 18 months and very lucky to report that the side effects were mild. (only mild fatigue) My eyesight has gone down hill but it seems to be due to the Cataracts that need to be removed. I do have a mild loss of hearing in my right ear.....but lucky for me, I'm off the Big 3 as of 10/21/24.
Frankie160

Frankie
I believe it is because I do not have a cavity with the Mycobacterium avium complex., which in itself has been showing as a mild infection.
Truth, I'm not sure if she, the pulmonologist, told me why no Rifambin. She did mention that she was not putting me on it. She may have mentioned why she was not putting me on it and I may have missed it, however, I don't think she did. If she didn't tell me I foolishly failed to ask her why not. She is a practicing spcialist/researcher for BE....very knowledgeable and well known in her specialty of BE. I had two areas of improvement via the CScan and one new area of mucus plugging in the lower left lobe. Hope to continue with improving and no more negative results of more mucus plugging. I shall see how it all goes.
Good report for you....off the meds. Congrats.
Barbara

Hello frankie160
I wonder how long you were on the antibiotics after you converted to negative for MAC
Thank yoy

Hi BLM1007,
Started the Big 3, 9/22 and was given a permanent holiday from these antibiotics on 10/21/24.
However, we need to factor in the Arikayce med which I started 7/12/23 and then converted in August of 2023 to negative for MAC. Was asked to continue the 4 antibiotics and stopped Arikayce 3/24 and the Big 3 just recently.
Good luck with all!
Frankie160