21042 (@21042)

Paula, i agree. The CT scan gives the doctor a base. I, too, had a large nodule on my lungs and was diagnosed with MAC after a sputum culture and put on the 3 big antibiotics. My doctor wanted another CT scan 2 months later, before she did a biopsy to see if it was cancer, which she didnt think it was. The second CT scan showed the size of the nodule had shrunk by 2/3. What a difference. She showed it to my husband and I and it was unbelievable. The meds are working and I’m now back to going to the gym and singing in the choir at church. Amazing that i have more air in my lungs than I’ve had in a long while. For the first month, it was bad with the nausea and i almost gave up, but my advice to anyone is “dont quit”. It gets better. I was also diagnosed with bronchiectisis 23 years ago. Thats under control with nebulizer treatments twice daily. I’m 75 years old, but i can honestly say I can keep up with anyone 25 years younger. Never give in. Ever.!!! Kathi ( 2-10-42)

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

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)

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)

This is 21042(kathi) So sorry youre having a difficult time with doctors a d hospital. Im blessed to live in this wonderful retirement town with excellent caring and knowlegeable doctors. Dont give up, keep fighting them til you get answers. I will be praying for you. Im new on this forum and dont have much advice to give anyone but i’ve been helped to hang on when i almost gave up. The meds made me so sick i wanted to die, but after a month, im doing just fine. I drink an energy shake every day and this has stableized my weight after losing 12 pounds. Get lots of rest and let your little dog love on you.

Hi Amy, this is Kathi. Yes, i did get terrible headaches in the beginning, but they’ve mostly subsided after about a month. I’m now on the 3 meds about 2 1/2 months. Nausea is mostly gone now , and i did lose about 12 pounds. I find the worst part now is fatigue. I’m not used to it as i’ve always been so active. My doctor said that may get some better as time goes on. I had a good- sized mass on the right lung two months ago that my doctor suspected was a glob of MAC, but when i got the second CT scan after two months, it was about two thirds gone, so no biopsy is necesary. She and my husband and I are so happy with that news. It sure was a rough ride in the beginning, but my advise to any one is don’t give up. It does get better. I’m living proof! Oh yes, I took tylanol for headaches. It worked pretty well. Kathi(21042)

Hi, this is Kathi again. Just thought i would check in since i havent posted for a while. I am doing great on these meds. By following Pamala’s schedule of taking my meds between 9-10 at night-all at one time, i am no longer sick all the time. Im even back singing in the choir and my energy level is improving daily. I was losing weight (which i didnt need to do, but a 94 year old choir member told me to get Carnation Instant Breakfast and mix a scoop of ice cream in it daily. She said when she was in the hospital in St. Louis, she was told to do that. Its been good because i get more of my daily vitamins and minerals. I use skim milk, so i get my daily calcium. I go for a CT scan tomorrow to see how i’m doing. My doctor will be happy that i no longer am sick from the meds. With all the encouragement on this forum, i kept going and it DID get better. Thanks , (21042) Kathi

Thank you Katherine. I like to have a friend be a “straight-shooter”. I will definately get on the probiotics. Anything that will improve my health, i want to do. Im doing better today after my meds. Now i need to gain some strength by eating. With the nausea, i’ve had no appetite, but today im actually hungry and i want only good food in my body.