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Sue, Volunteer Mentor (@sueinmn)

Early Christmas gift - stopping the "Big 3"

MAC & Bronchiectasis | Last Active: Jan 29, 2020 | Replies (27)

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@rits

Hi Sue. I hope your gut is doing better. This is going to be long but I hope it helps others. I saw my gastroenterologist last week about my worsening digestive issues. We have a long relationship going backmore than 20 years when I first started seeing him for problems following radiation for my first cancer. Btw that radiation caused colon cancer which he discovered during a colonoscopy.

He said that the antibiotics absolutely could be causing my digestive problems even though I did ok on them for months. Probiotics as well as yogurt in most cases are not helpful. There are many different strains of bacteria in the digestive system, and each of us has a different mixture of good and bad. It's not possible to tell at a given moment which bacteria is causing the balance of any individual to be off and figure out which good bacteria to add. Probiotics, which usually consist of several different kinds of bacteria, in some people at some moment, may lead to a better balance but it is hit or miss. In my case, the 3 different kinds of probiotics I tried, all of which had been recommended to patients at NJH or by id doctors elsewhere, made my problems worse. He did, however, recommend trying Align which has only one strain of a beneficial bacteria.

The problematic antibiotic is Azithromycin which speeds up digestion causing diarrhea and also changes the bacterial balance. He said that I won't be able to tell if it is the antibiotics causing the worsening issues until I stop them. He also said that I was NOT to stop early because the digestive problem is temporary and not harmful to the body while the lung infection is much more serious and can cause permanent damage.

He did give me a description for Xifaxan, an antibiotic that kills e coli, which costs a whopping $1900 for 42 pills (3 a day for two weeks) but my copay is a measly $50. I took it about 3 years ago and couldn't finish the prescription. Talk about diarrhea! Not only couldn''t I leave the house, I couldn't leave the bathroom! He told me that I didn't need to complete the whole course but getting rid of even some if the e coli we all have in our colon should help. It did help a couple of years ago. I'm not going to use it until after some appointments I have coming up including the pulmonologist next week.

Have your digestive problems resolved now that you have bern off antibiotics for about a month? Because you apparently still have some MAC 🙁 have other symptoms improved? I'm curious as to whether the symptoms such as fatigue are caused by the disease or the antibiotics. Hope you are doing great!

Rita

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Replies to "Hi Sue. I hope your gut is doing better. This is going to be long but..."

When I first started taking the Big 3 in Sept 2019 the Azithromycin was causing some major diarrhea. I started taking 2 Imodium 2mg tablets with each dose of my antibiotics and that completely resolved my diarrhea issue. I also take a "Florastor" probiotic daily. It is yeast based and not affected by antibiotics. I still will have occasional mild nausea and will take a Ginger supplement for that, seems to help.

@rits Thanks, Rita – I am doing much better after 5 weeks. My gut issues are resolving (still on the probiotics) the stomach pain is beginning to decrease (primary had me do a course of omeperazole, which is helping. I also temporarily stopped the NSAID for my arthritis.)
The 7% saline neb seems to be keeping the mucus moving, with the occasional levalbuterol neb or inhaler on the bad days. And no chest pain or colored mucus.
The BEST news is that the fatigue & fog are beginning to lift! I still "crash" but it is quite a bit later in the day than before. And I can go for 2 active days or 3 moderate days before I need a recovery day. It used to be one on/one off. Part of it is that without the stomach issues, my sleep is much better. My activity tracker was showing my average restful sleep while on meds was under 4 hours (out of 8 hours in bed.) Now I am averaging around 5 – 5 1/4 hours of good sleep a night.
But with this stupid disease, it's always something – still no appetite to speak of nor any weight gain. And stopping the NSAID has me hobbling around, and hands not too useful…
But friends just arrived here in our winter home who have had a much worse year than me, her abiding philosophies are "I'm still on the right side of the dirt" and "I can still enjoy the weather – even if it is from a chair on my patio."
I hope they can somehow alleviate your digestive issues – my daughter made them test me for "c diff" because it can be a consequence of long-term antibiotics, have they checked you? My ID doc stopped the drugs after 18 months because he felt the MAC was "controlled" and we had reached the tipping point where the cure was worse than the illness. He also used the improved CT and the lack of cough in deciding.
Sue

Hi all…I’m going to throw this out there in hopes that it might be helpful to someone else. I started the big three the first part of December, so about two months now. Oddly, other than a little nausea, gas and bloating, and some constipation, I’ve done ok. (I do take zofran). But here’s what I have to share. I have had severe food hypersensitivities for about 8 yrs. probably gut related. When I found out I had MAC, I read about the antibiotic properties of garlic and it’s effects on the gut biome. So I started “Kyolic” original formula, two twice a day. In less than two weeks my food hypersensitivities went away. No more itching. None, and it had been constant. So I know the Kyolic helps the gut naturally. This may be why I’ve had no upset stomach with these antibiotics. I just wanted to throw it out there, as it might help someone, not to mention the cardiovascular support as a byproduct. I have first sputum tests next week. Anxious to get my year underway! I am so thankful for you all and look forward everyday to see if anyone has any news. I always said I was going to age kicking and screaming, and then this snuck up on me. I just turned 63, and feel ancient. Thank you for the hope you provide every day, and the smiles!