Early Christmas gift - stopping the "Big 3"

Posted by Sue, Volunteer Mentor @sueinmn, Dec 19, 2019

I am ever so thankful, and a little scared. Since summer, I have been on the antibiotics daily, because after a year of treatment my sputum cultures continued to be positive, I was symptomatic, and my lung CT showed increased evidence of infection. Fast-forward to December, culture still positive, but cough gone, sputum clear, CT scan clear, and experiencing side effects from daily meds… My infectious disease doc, in consultation with NJH, decided to STOP the antibiotics, a conclusion supported by my new pulmonologist. So now, we "wait and see" if any symptoms come back. I will continue ti use my inhaler & asthma meds, neb with saline & use the Aerobika. And reevaluate in the Spring. I know I will always have the MAC within me, please send good thoughts & prayers that good lung hygeine practices, good nutrition and continued health will keep it from taking over again!
Sue

I just returb

REPLY
@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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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.

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@rits

@windwalker and @sueinmn

Thank you so much for your responses and advice when I said I was going to stop treatment. I know it would have been better to discuss stopping with my ntm doctor before changing anything but she was leaving the University of Chicago for Tyler, Tx and was no longer seeing patients here and will start in Tx on Feb 1 and I needed to do something. At the end of this month, I have an appointment with the bronchiectasis specialist who referred me for ntm treatment. When MAC was found in my sputum, the plan was that I would return to her for my pulmonology needs (copd and bronchiectasis) once the ntm was successfully treated. I have been negative for MAC and also for Pseudomonas and klebsiella since last summer. I do have some fungi which appear now and then in my sputum but were not found during a bronchoscopy. My ntm expert told me I could stop the oral meds in June or maybe sooner and to stay on Arikayce as long as I can.

I have been having worsening digestive issues and mucus/breathing issues since November. Both seriously diminish my quality of life.

I stopped the oral meds and Arikayce around Christmas for a week. Because I take everything 3x per week, that means I missed two treatments. There was no improvement in my digestive issues. I have had a ab/pelvic ct scan and a pancreatic/liver/ducts, mri over the last few weeks for issues unrelated to my digestive problems and I am seeing my gastroenterologist in a few weeks. I don't believe the antibiotics are related to my problems and intend to continue them as long as my doctors say I should.

When I resumed the Arikayce I immediately noticed a difference. I had had an exacerbation when I first started it in July and it took a month to recover. My doctor told me to try 3x a week and that worked although I had increasing mucus and shortness of breath. In December, I realized that I was not doing activities that I had done before restarting Arikayce in August. Starting in November, I had a dogwalker for all 3 walks daily, which I had never needed before. I told myself that it was because of the winter weather but our temperature was in the 50's. I also was not working out. I haven't been to the building fitness center since September although I used to be there at least 3x per week. I purchased an exercise band in Nov which I've used twice. And, I have to force myself to go to my health club and I used to love going there. I'm at home most of the time!

I stopped Arikayce right after Christmas. When I had started Arikayce in August,I was unable to do Arikayce and saline and my doctor told me that the Arikayce was more important. I was taking it for pseudomonas and klebsiella then. I was negative for MAC and negative for the other two by September. Without Arikayce, I am able to do 3% saline 2x daily along with a smartvest and aerobika. I am walking the dog again but still have not been to the fc but go to my health club. The mucus and breathing are much, much better.

Thanks for listening and your advice. I will discuss all this with my doctor at the end of the month.

Rita (apologies for the long post)

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@rits Hello Rita! After reading your post, I feel like you may need a little extra boost to keep you on your wellness mission. I am about to have you try a visual project that worked well for me. I want you to put pictures of healthy vibrant people that are exercising in some fashion and also one of a woman walking her dog, And one that has a smiling healthy image of a woman that most resembles you. A large printed word that says 'SMILE', and 'HUGS'. Tape these to your refrigerator where they will be daily reminders. Imagery plays a big part in what we believe for ourselves and help us to keep our goals on tract. Perhaps they may help you to get out the door to walk your dog and go to the gym. I have used this method of imagery many times for things and it has worked. As Oprah likes to say, "If you can NAME it, you can CLAIM it!" Those images will work on you on a subconscious level as well. I suggested the words Smile & Hugs because they have healing qualities. Smile more and know that the hugs are from us, but do try to get some physical ones too. Hugs!

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Haha! Thanks Terri. I don't need a boost of encouragement and thank goodness I have Costco for toilet paper. Lol! My problem is that I cannot leave my house due to incessant diarrhea not because I don't want to go or any other reason
I can't count the number of times I've turned around while driving somewhere to hurry back home. At the public library, the librarian at the front desk buzzes the ladies's room door lock when she sees me rushing in. I have been in bathrooms in supermarkets, big box stores and spent 30 minutes in a Kohl's bathroom because every time I washed my hands, I was back in the stall. Funny! Not embarrassed! It is what it is and the colon cancer surgery saved my life.

What changed over the last few months is that I have gas (don't want to get too graphic!) that sometimes keeps me awake all night and pains so bad that I moan on the couch for hours.

I didn't want to go there – tmi- but here I am.

I am able to walk the dog all three walks no matter the weather since I stopped Arikayce. I hope I'm not told to start it again. And I have the ecoli killer med if I need it. My gastro believes the recent worsening is due to a combination of my short digestive anatomy and the antibiotics.

I hope the sputum sample I'm bringing in next week is negative and my doctors can start talking about an end date and whether, like you, I will need ongoing treatment. March will mark one year on the antibiotics and June will mark my first negative. I know others have been on them much longer. 🙁

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I have had mac for 20 years. I am running out of drugs to use. Can I ask what anti biotics u are on?

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@poodledoc

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.

Jump to this post

Florastor is one of the probiotics I tried. I'm glad it is helping you.

I take 2-3 imodium (generic from Amazon) most mornings and usually at least one more later in the day. I was told I can take up to 8 in a 24 hour period but my highest is 5. It is a miracle drug!

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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

Jump to this post

@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

Liked by rits

REPLY
@sueinmn

@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

Jump to this post

Wonderful news, Sue. I hope you continue to improve.

REPLY
@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

Jump to this post

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!

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Hi Sam, interesting response to garlic. Just to note, garlic and onion are two "foods" that speed digestion. Since you are prone to constipation, garlic is ok for you. Maybe even more than ok. For those of us who are prone to diarrhea, the usual response to azithromycin, garlic is to be avoided. I hope you have a negative sputum report!

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@susan1962
Sue I also am on a drug Holiday. My first day off was 12/24/2019.. I developed sudden onset of tinnitus and dizziness in November. Things started to improve when I was still on the meds in December but they decided to try me off since they could not be certain it was not the meds. Things have been improving and I was just at Mayo yesterday. My CXR is stable. I am to try staying off the meds and return in May/June. They really are not sure if this was a virus or the meds (since it was starting to improve before stopping the meds). I did allot of praying which I believe also was a great help to me. We discussed new research while I was there. Dr did not think the Nitric Oxide is moving forward as they thought. He is very excited about Phage therapy. I sent an email to the program they had on Sirius XM yesterday with Dr Radio and they never put my question on. I would have called but it was when I was at my appt. Not many pts called in either, which was disappointing. There was one MD that called from the UK with information about an article published this week in Scientific Reports with a 3 part drug regimen that is working well in children with MAC and Abscesses. Imipenim Relebactam and Amoxicillin https://www.nature.com/articles/s41598-020-57844-8 Lets hope we both do well off the drugs

Liked by poodledoc

REPLY

Hi all,
I have been off the Big 3 since 2015. Have had 3 CT scans since, the last one being in Jan of 20. It showed very little change from the last one in 2017, so my ID doc said even though we know I still have the MAC ( positive sputum ) he didn’t
feel that the slight changes warranted me going back on the meds. I have been on no meds at all since 2015, I am 63, and work daily, am active daily, I am a total believer in positive thoughts, energy and prayer. I cough in the mornings, but that is really my only symptom… I just wanted to let you know, that it is possible to live a good life, a healthy life even with MAC. I was in the chrome plating business for 22 years, and from all I have read on the disease, the fine dust from the sand blasting of parts was probably what caused the problem to begin with, the chemicals didn’t help either. I quit smoking in 1988, so thank God I didn’t do more damage from that. Good luck to all of you, It is definitely a journey…..I am thankful to have learned all I have from this site and others, Knowledge is power.

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