MAC antibiotics and side effects

Posted by reneeg @reneeg, Oct 15, 2016

Hello. My name is Renee and I live in Australia with my husband who was diagnosed with MAC in Sept 2014. At the same time he was also diagnosed with Hodgkins Lymphoma, COPD and hereditary emphysema. He also has adrenal failure we’re told from the chemo. He is currently in hospital on a iv antibiotic drip of tigecyline and oral antibiotics. My question for those of you that have taken rifubutin and moxifloxcin. How long did your side effects last? Did they ever diminish or completely go away? One of the reasons he is in hospital is due to the severeness of his side effects. Constant headache, muscle aches, body temp regulation and shortness of breath. He has been on the tablets now for a 4 weeks. Thank you!!

@laneyk

Hello everyone. I have a praise report. I am 6 months off the meds and got sputum results today. No bacteria found. I am feeling so much better than I was 2 years ago. There is light at the end of the tunnel and life after MAC. I wish everyone could have the results I have had with this disease. I have not had the nerve to ask about reoccurance, but I think I will in March when I see the doctor again.

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Congratulations, laneyk. Im just starting my journey, two weeks now. Really tough! Being able to have support will make all the difference. Stay healthy and happy. Kathi (21042)

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@laneyk

Hello everyone. I have a praise report. I am 6 months off the meds and got sputum results today. No bacteria found. I am feeling so much better than I was 2 years ago. There is light at the end of the tunnel and life after MAC. I wish everyone could have the results I have had with this disease. I have not had the nerve to ask about reoccurance, but I think I will in March when I see the doctor again.

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I saw your post the other day. The treatment does get better with time. Rough at first. I was on meds everyday. Just do what your body tells you to do. If you need to lie down, do it. I was so acutely sick before diagnosis it took a little while after treatment began before I could return to normal life. I’m so glad I stuck it out.

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@laneyk

Hello everyone. I have a praise report. I am 6 months off the meds and got sputum results today. No bacteria found. I am feeling so much better than I was 2 years ago. There is light at the end of the tunnel and life after MAC. I wish everyone could have the results I have had with this disease. I have not had the nerve to ask about reoccurance, but I think I will in March when I see the doctor again.

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Yay!!! That is fantastic news! So happy for you. That is what we like to
hear. That is what keeps us going. Thank you for sharing. Prayers out for others
still fighting the battle. Hugs -Terri M.
 

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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Hang in there Kathi, we are here for you. Sending prayers and Hugs! Terri
M.
 

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@laneyk

Hello everyone. I have a praise report. I am 6 months off the meds and got sputum results today. No bacteria found. I am feeling so much better than I was 2 years ago. There is light at the end of the tunnel and life after MAC. I wish everyone could have the results I have had with this disease. I have not had the nerve to ask about reoccurance, but I think I will in March when I see the doctor again.

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I’m so happy for you, laneyk and congratulation! I’m looking forward to the good news too. I prayed that by the my 1yr of taking this meds. it will clear my lungs. Take care! Cila

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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I started taking probiotics when I was first diagnosed with MAC. I mentioned it to my doctor. He told me it was unnessary to take them as these antibiotics did not affect the bacteria in the bowel. So, I did not and have had no problems with that. I was somewhat nauseated at first and had no appetite. It does get better. Maybe if you take them at different times it would help. I did that for a while and finally started taking them all the first thing in the morning. I I was, however, given Rifabutin instead of Rifampin. I have
not seen where anyone else took Rifabutin. I am 6 mos.off the treatment and Sputum culture is still negative. I’m not sure why my doctor prescribed Rifabutin instead of Rifampin, but I have done well after the first few months. Try to find what works for you and rest as needed until you can tolerate the medicine. We are all different.

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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@laneyk, Elaine, I am curious .. during your period on antibiotics did you ever get vaginal yeast infections .. candida .. or oral thrush? Just curious because many of us on antibiotics have had those issues. Hugs to you on your WONDERFUL success with your being 6 mos off treatment .. way to go! Hugs! Katherine

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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Katherine, NO, I did not have a problem with yeast infections or thrush. The MAC antibiotics do not affect other bacteria. Only the mycobacterium are killed by them.

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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Kathi – I am so sorry to hear how sick you have been feeling.  I have never heard what your doctor told you about probiotics and the meds we take.  All I know is that I have been on the probiotic since starting the meds and I have not had the nausea.. I would try to get some other opinions.  At one point when I was first starting the meds, I went to a doctor who was trained in both western and eastern medicine and does acupuncture .. someone like that might be able to help you with the nausea.  In the beginning when I had little appetite and I could see I was losing weight, I drank Ensure every day, knowing that would help – it is not very appealing but it does have the nutrients. Some staff at certain health food stores can be very helpful when it comes to issues of nausea so you might want to find a reputable place and see if there might be something there you can find to help with the nausea – talking to them also about the use of probiotics could be helpful too. I really hope you can eventually get some relief.  Pamela   

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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@pamelasc1, Pamela thanks for the idea of the acupuncture .. that is a GREAT idea .. I had not thought of that! I have used acupuncture many times for various things .. like healing from carpel tunnel .. back pain .. and I know it is not a miracle cure but it REALLY helps. Be SURE to check out the practitioner .. I was lucky enough to find one that had taught in China and then had been brought to the USA to teach acupuncture here. He is excellent .. so just check out the bios .. just as you would an M.D. here. Pamela, you were REALLY lucky to find a doctor trained in both eastern and western medicine .. I SO believe in both! A good article on protein shakes is: http://www.health.harvard.edu/staying-healthy/supplemental-nutrition-drinks-help-or-hype. Personally I did the “Bolthouse Farms Protein Plus Chocolate” .. it had 30grams of protein .. in the refrigerated section of the grocery store .. at $3.69 not cheap but with the most protein and least sugar I felt it was worth it for my health. Pamela, Thanks for jumping in .. you always have such good advice! Hugs to all! Katherine

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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Thank you, Pamela. I will still try the probiotics. I have read other posts saying the same thing about probiotics as my doctor on this forum, even one by a doctor at Mayo. Im ready to try anything. Im going to push on if i can. Im on my meds tonight and i keep hoping it will be ok. Ive never been a quitter, but this has brought me close. I was able to eat a bit more today and i even took a short walk in the woods. Its 75 degrees here today. I did get ” BOOST” supplement, but it was too sweet. I”ll try Ensure. Thanks for encouragement.

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