Hey Turbo. I like your attitude. Sounds like me! Youll make it. Im on the meds now for three months. The first month was very rough, but i figured if other people can do it, so can I. The nausea is gone, but i get fatigued, but my doctor said that will get better. I'm back doing most of the things i did before. I also like my doctor. She explains everything to me and is very knowledgeable on the MAC. Shes treating 15 patients with MAC right now, which is quite a number since i live in a small town of 10,000. Ive gotten good info from others on this forum. If you would like my med schedule, let me know. If works really well for me. Kathi (21042)

Kathi (21042) Hi Kathi, good to hear from you and that you are doing so well! Thanks for jumping in to support @turbo .. she is having a tough time. You were sure lucky to find a doctor with 15 MAC patients .. WOW .. wonder why so many MAC patients in such a small town .. makes you wonder??

When you have time .. I'd love to add your med schedule to my File Cabinet .. the med schedule is absolutely NOT one size fits all and I'd like to have several to offer new people .. everyone's body is so different .. what works for one person will NOT work for another. Any other tips you might have that helped you also .. just add them .. they are great addition to our pages! Just do it as you have time .. appreciate it! Hugs! Katherine

Katherine, let me clarify the info i gave about my pulmonologist. When i asked her if she had many MAC cases, she said probably 15. Now she could have meant over a period of time. I do know she is very knowedgeable on Bronchiectisis and Mac. I had pseudamonas bacteria first. I had the two week IV antibiotic and its gone, but it was found through a sputum culture that I also had MAC. This may be lenghty, but i'd like to tell you about how i got to this point. I moved here to the Ozarks 23 years ago from Maine. I got bronchitis often and would go on antibiotics several times a year. When i moved here , I was put in the hospital thinking I had pnuemonia, but a cloud on my lungs caused doctors to suspect TB. After culture came back negative, i was sent to Springfield, Mo. to a pulmonologist, since we didnt have one here. That doctor put me on long term antibiotics, Cipro 500 for ten days, off for ten days, then Cedax 200 for ten days, then off for ten days. This was my routine every month for 21 years. Yes, you read that right--21 years! I had no side effects at all. At the end of each ten days, i knew , when the coughing got bad, it was time for the antibiotics. I saw this pulmonologist every six months. Got a breathing test and x-ray.. I went to the gym three days a week, did yard work hours on end. Rarely got tired. Did anything i wanted to do. I continued going to Springfield because we had five different pulmonologist at our hospital here. They seemed to come and go, and i wanted to stick to one. Well, last year i started feeling very fatigued and over all, nust not my perky self. I told my doctor and he ordered a broncoscopy, and saw bacteria and gave my lungs a brushing. Took me off the antibiotics, put me on another one for 30 days every day. At the end of that, i was not feeling better, so he said i needed to go into the hospital here to have it it done, since i lived 2 1/2 hours from him. He called our hospital here and talked to the pulmonologist( which, by the way, has been here 6 years) saw her the next day, put into the hospital that afternoon. Started the treatment, sent out a sputum culture. She knew about the psuedamonas ( which she was treating), but the culture showed MAC also. I really don't think the pulmonologist I had all those years even knew anything about MAC. I realy believe my doctor now, knows . What happened is I became immune to the antibiotics and weakened my immune system to allow these bacterias to set up shop. Katherine, i'm sorry this was so long, but i just wanted you to know what a journey i've been on. This forum has been so good for me, because I can see I,m not alone. For the first month on the three meds, i was deathly sick and almost gave up. At first I was taking one of them in the morning, one at noon, and the one I thought was making me the sickest, I was taking at night. Well, I was sick all that day and the next day. Then I decided to take them all at once at 10:00 before bed. That meant I had 2 full days between and after my Friday night meds, i had 3 full days between, starting over again on Monday evening. That made it tolerable and each week I was less sick. Now I'm fine and with the exception of some fatigue, i'm back to my old self, activity wise. Thanks for listening, and I'm happy your husband is out of the hospital and doing well. Take care of yourself. Kathi(21042)

Thanks for the info I will beat this and yes I would like to know how you took you medicine please!!❤️

Hi turbo. Andi, this is how i learned to adjust to the meds. At first, I took one in the morning, then I took another around noon and took the Rifampin at night because I thought it was the one that made me the sickest. Well, I was sick ALL day long, then I would be sick most of the next day, and had to start all over on Wednesday. I was sick ALL the time. I truly didnt think I could make it and was almost ready to give up. Then one of the members on this Forum told me her schedule (Pamala, I believe). I tried it. Take ALL the meds at night before you go to bed. That way if you're nauseated, you're asleep. Then you have two full days off, before the Wed. night meds, then two more full days off before Fri nights meds. Then that gives you three FULL days off til Monday night again, Wow!. Usually, the day after , I would feel somewhat lathargic, but that didnt last long. Now, Im three months on meds and doing pretty much what i did before. I'm an active person and I never give up. Just make sure you take your meds at least 2-3 hours after you eat. I really pray that this works for you. I know everyones body reacts differently. If this works for you, you'll feel better faster than I did, because I didnt try this schedule until almost six weeks. Hang in there! I know you're determined. I could tell by your attitude. Friend, Kathi

@21042, Kathi .. thanks for jumping in .. it REALLY helps new people to hear success stories and how different people reacted .. what they did that DID NOT work .. and what DID work .. and ESPECIALL your wonderful words "and I never give up." .. just LOVED that! Again, thank you SO much! And yes you were correct .. it was the schedule from Pamela! I will repeat it below from my File Cabinet. Hugs to both of you @turbo, Andi! Katherine
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SCHEDULING ANTIBIOTICS From Member @pamelasc1, I began the 3 pill regimen. I did feel very lousy the first month but was told to hang in there, that it gets better each week- and it did! I will tell you how I take my pills, as timing can help, as can taking other supplements. I take them between 9 and 10 PM, just before going to bed. I take with a lot of water. I try to put a minimum of 2 hours between eating dinner and taking the pills. Every day I take a probiotic to help the gut - the antibiotics wreak havoc with the gut. This can help with nausea - I take my probiotic with breakfast or lunch - do not take it late in the day. I use Ultra Jarro-Dophilus - 50 billion per capsule - will find in the frig at any health food store - I open up the capsule and drop in a bit of applesauce, stir it up and eat. I also take Vit D3, 2000 IU and B6, 50 mg. After my stomach settled down in about a month, the side effects I have been left with are fatigue and weight loss, sometimes night sweats, and insomnia. Remember to take the pills at the same time of the day, so if you go on a schedule like mine, just stick to it by taking the pills two hours or so after eating a meal. This way I found I slept through the nausea for the most part. And as has been suggested, read through all the earlier posts - they are VERY helpful! Good luck and just have faith your nausea will get better. Pamela

Kathi(21042) Hi Kathi, I am SO glad you laid your journey out .. this helps not only ME understand it .. BUT it lays it out for future newcomers .. a journey perhaps THEY can relate to .. thank you for taking the time to think it through and present it in such an understandable manner .. it will help future newcomers!

Even if 15 MAC patients is over a period of time .. personally I would be reassured she probably knows her stuff versus SO many doctors I have heard about on this Forum who are nearly ignorant of our disease! Keep in mind about Pseudomonas bacteria .. when I was diagnosed with Pseudomonas Dr. Timothy Aksamit told me that when Pseudomonas is in the lungs it can be "stabilized" but not cured .. that I would need follow up appointments for it with my immune system.

Kathi, I am SO glad you are doing better .. AND that you found our Forum .. yes we do have a wonderfully supportive group of people! See already YOU are contributing .. sharing your journey for newcomers .. that is how we help each other .. all we have to do is be ONE step ahead of a newcomer to be able to "PLAY it forward" .. help them as WE have been helped! That is what our community is all about! Hugs to you! Katherine

Great I took the meds last night and got up to pee a few times but otherwise had a good night!! Woke up and am okay this morning!! Gonna eat and have a great day!! Thanks for the advice Kathi!! It's beautiful here in North Myrtle Beach S.C. ❤️

@turbo, YEAH Andi!! Isn't that just WONDERFUL!! Keep us posted on your progress .. we NEED good news on our pages!! Hugs and congrat to you! Katherine