New Diagnosis of MAC/MAI & I'm scared

Posted by sueinoregon @sueinoregon, Sep 10, 2018

Hi, I am new to this site. I just got the results of my broncoscopy a week ago. First I was told I had Staph Aureus in my lungs & was put on Levaquin X 10 days. OK, Now she tells me I had MAI & I think the other one is MAC. Anyway, My pulmonologist said we are waiting for the sensitivity test to see if the bacteria in my sputum are sensitive to the antibiotics….or not….since now some strains are resistant. My name is Sue from Oregon and I am 61 years old with Sjogren's Syndrome, Rheumatoid Arthritis, Bronchiectasis, and now THIS. My RA & bronchiectasis are extensive with a lot of coughing and I am on a biologic immunosuppressive drug, infusion, for the RA. I read several posts at this site, looked up the side effects of the 3 meds my pulmonologist said she will put me on, scheduled an eye and hearing exam. This is scarey!!!! I'm already weary of my life having been turned upsidown in the last 4 years with my health struggles. (On SS disability now) I talk with a clinical psychologist every other week & she is helpful. Is it really helpful to talk about it online? Or does it just make one ruminate about it all the more? I'm not sure which it is. Please let me know if it has helped you cope, or not. Thanks.

@pattykuhns

Hi Sue, My son is 44 and also diagnosed with MAC which is being treated by the amazing doctors at Mayo Jax. He has Alpha1 which effects his liver and lungs. In June of 2017 his diseased progressed to end stage liver disease, they could not transplant at that time due to the MAC. They did the same studies you mentioned to see if it reacted to the 3 antibiotics. It did so they started the therapy at the end of July 2017. By December the cultures where negative so we were able to get him on the transplant list in February. He will remain on the three antibiotics at least one year after the first negative culture. In the beginning his white count fell low so they have been giving him Neupogen injections to boost the counts. The low counts are a combination of the antibiotics and liver failure so they lowered the dosage of the antibiotics a little. His eyes are also checked every 6 months to watch for any changes the antibiotics may create but so far no issues there. So about 14 months after starting on the MAC treatment it is under control, no eye issues, continuing the antibiotics and waiting for a liver that is a match.

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@pattykuhns Hi Patty. I am sorry that your son's Alpha disease has progressed to needing a liver transplant. He is in the best hands at Mayo. Please keep us updated on him if you don't mind. We have a mentor who has had a liver transplant and has been doing very well. Would you like to connect with her? In the event you have questions about recovering from the procedure, etc.? I wish your son all of the luck.

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@ameliar

Thank you so much for recommending the ntminfo.org website. I did find a nearby doctor that is recommended on this site. I was recently diagnosed. I have had a chronic cough for years. I feel great except for the cough. I have not had time to read all the threads on this site… I am anxious to hear others that just have a cough. I have not had my sputum tests or immune tests performed as yet.

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@ameliar Hi there. I had a chronic cough for 11 yrs. It was pretty constant. It annoyed me and everyone around me. I coughed so violently that I'd pull muscles around my ribs, stomach, and back. It was hard on my organs too, especially my bladder. I started treatment at Mayo clinic in 2013 for mac and the cough lessened considerably. Then, I came down with pseudomonas infection in 2016. I was put on tobramycin antibiotic for a month. At the end of that month, all coughing ceased and has been gone ever since. After having coughed for so many years, I never imagined it could or would go away. (bladder problem went away too). Life is good again. Just want you to know that it is possible for you to feel better again also.

Liked by jaejack, lorifilipek

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@flib

@ Terri. I have family in town this weekend and I had to tell them I am too ill to visit. I know they are taking it personally. It's just one of those unpredictable times when I'm coughing a lot, have no energy and not getting enough sleep. They say they don't mind the coughing just want to see me. Which means I have to get a shower, dress, and try to make conversation between coughs. Who wants to sit in a room and cough at people. Other than being very thin, I don't look sick. I am running out of ways to explain this illness. Flib

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@flib So how did the family in town thing go? I hope you were able to squeeze some time in for them.

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@windwalker

@flib I can totally relate to what you are saying. As if it isn't bad enough to have mac and cough a lot; the fatigue steals your life. I cannot tell you how many times I have turned down invites because I just didn't have the energy to pull myself together. As for talking…. After I went on disability, I was contacted and asked of I wanted to work from home as a call center person. I had to decline on the basis that after talking for a bit; it would result in me going into a coughing jag. I don't get around to seeing all of my family when I visit my home state because all of the running around wears me out. I have explained my disease, but because I don't look ill; I know they think I don't care enough about them to make the effort. We just have to take care of ourselves. Our fatigue is so fickle at times, you may wake up feeling decent and want a short visit after all. I think you had mentioned getting some ginsing, you may opt to take some to get you through the visit.

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aTerri I had to cancel.I was feeling on the edge of fainting. Everyone was polite if unconvinced. Taking care of oneself is a big job with this disease. I do take the ginsing-royal jelly everyday. It gives me a boost to get through the next thing. Thank you, you wise woman. Flib

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@windwalker

@ameliar Hi there. I had a chronic cough for 11 yrs. It was pretty constant. It annoyed me and everyone around me. I coughed so violently that I'd pull muscles around my ribs, stomach, and back. It was hard on my organs too, especially my bladder. I started treatment at Mayo clinic in 2013 for mac and the cough lessened considerably. Then, I came down with pseudomonas infection in 2016. I was put on tobramycin antibiotic for a month. At the end of that month, all coughing ceased and has been gone ever since. After having coughed for so many years, I never imagined it could or would go away. (bladder problem went away too). Life is good again. Just want you to know that it is possible for you to feel better again also.

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Thank you for your input. I have been coughing for years. About 2.5 years ago I was told that I had pneumonia… I did not believe it. I always felt like the cough was from a post nasal drip. The DR. put me on levoquin for the supposed pneumonia… the cough went away. It is only the last few months that the cough is back. We have a really bad outbreak of red tide here in FL… I think the pathogens in the air caused stress on my lungs which brought the cough back. I am in the process of doing sputum samples and immunoglobulin tests. After that pulmonary function tests. I have been a runner for 35 years… I still run 5 miles a day. The Dr. says it is the best thing for me to do to keep my lungs strong. I appreciate your encouraging words!!

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@pfists

@sueinoregon
Hello Sue and wellcome to this board my name is Shari.
I am so sorry for the health trials you have been going through. I know how really hard it is to deal with receiving news like that.
I believe it helps a lot to talk with others that are going through the same things or have been through some of the same trials. Also on this board you will learn so much about this disease, treatments and about how we can also be overcomers.
There are others on here on the board with RA I am one of them. I also had to go on SS disability for the RA a number of years ago. I was also on a biological immune suppressant drug 7 years ago but that wasn't when I was diagnosed with MAC but was diagnosed with Pseudomonas which had gone on for months before I got in to see a pulminologist.
The pulmonologist then took me off the immunological suppressing drug for RA immediately. I have been doing very well for 7 years with the RA while being on two different drugs to treat it that don't suppress my immune system. One is minocycline three times a week the other is plaquenil.
I also have been testing negative for Mycobacterium Abcessus for a year and a half now. I had tested positive for one year prior and did not do the antibiotics but a number of alternative treatments.
There is hope you can get through this. You need to get the best Doctors working for you. Some others here didn't take antibiotics some rotate one antibiotic for one week every month and some have or are taking the antibiotics.
Also there are some treatments coming on the scene that are easier like nebulized antibiotics or inhaled nitric oxide to name a couple.
Hang in there we are here for you!
Shari

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@pfists Hi, What do you mean by alternative treatment? Thanks.

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@flib

aTerri I had to cancel.I was feeling on the edge of fainting. Everyone was polite if unconvinced. Taking care of oneself is a big job with this disease. I do take the ginsing-royal jelly everyday. It gives me a boost to get through the next thing. Thank you, you wise woman. Flib

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@flib, I find one-on-one visits with people so much more enjoyable. I was glad when I moved four states away from my family because I was no longer obligated to attend family holiday functions. I know that sounds sad, but I am actually happier that way. I do not enjoy large crowds or parties anymore. I do not have the energy to make small talk with people anymore. Ironically, I used to be the life of the party and throw many dinner parties.

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@windwalker I'm glad you wrote this. I realize the same; one on one is what works best for me. No desire to be crowds or parties. I do belong to a poetry group and I like that but it doesn't require much energy and I find it stimulating. I too use to have a lot of social events but now I don't really miss them. I'm very happy with a cat in my lap and a book in my hand. I have a few dear friends so I'm not in a vacuum. My family is scattered all over. I miss them but not the strain that families often bring. Who knows, life takes many twists. May be kicking up our heals again one of these days. in

Liked by tdrell

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@ameliar

Thank you for your input. I have been coughing for years. About 2.5 years ago I was told that I had pneumonia… I did not believe it. I always felt like the cough was from a post nasal drip. The DR. put me on levoquin for the supposed pneumonia… the cough went away. It is only the last few months that the cough is back. We have a really bad outbreak of red tide here in FL… I think the pathogens in the air caused stress on my lungs which brought the cough back. I am in the process of doing sputum samples and immunoglobulin tests. After that pulmonary function tests. I have been a runner for 35 years… I still run 5 miles a day. The Dr. says it is the best thing for me to do to keep my lungs strong. I appreciate your encouraging words!!

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@ameliar, I read an article on NTM and Florida! I also live in Florida and I try to avoid the beaches since the red tide has spread all over. I do think we need to be cautious here in Florida with Mac disease. I hope you feel better soon and whatever treatment you decide works well for you. Rita

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@flib

@windwalker I'm glad you wrote this. I realize the same; one on one is what works best for me. No desire to be crowds or parties. I do belong to a poetry group and I like that but it doesn't require much energy and I find it stimulating. I too use to have a lot of social events but now I don't really miss them. I'm very happy with a cat in my lap and a book in my hand. I have a few dear friends so I'm not in a vacuum. My family is scattered all over. I miss them but not the strain that families often bring. Who knows, life takes many twists. May be kicking up our heals again one of these days. in

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@flib. I still kick my heels up once in a blue moon.

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@ameliar

Thank you for your input. I have been coughing for years. About 2.5 years ago I was told that I had pneumonia… I did not believe it. I always felt like the cough was from a post nasal drip. The DR. put me on levoquin for the supposed pneumonia… the cough went away. It is only the last few months that the cough is back. We have a really bad outbreak of red tide here in FL… I think the pathogens in the air caused stress on my lungs which brought the cough back. I am in the process of doing sputum samples and immunoglobulin tests. After that pulmonary function tests. I have been a runner for 35 years… I still run 5 miles a day. The Dr. says it is the best thing for me to do to keep my lungs strong. I appreciate your encouraging words!!

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@ameliar I was reading about the red tide several weeks ago. The articles all pointed to it being the cause of the 20% increase in pulmonolgy visits. It had suggested that people stay indoors as much as possible until the red tide is over. You may want to buy a free-standing air filter. I have one that I run in my bedroom during heavy pollen days. It has a hepa filter. That may help with air quality. It is sad about the loss of marine life.

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@sueinoregon Hi Sue. I am wondering if you have been referred to an Infectious Disease Md. One question I would ask is, is the Biologic for your RA making MAI/MAC easier to take hold. They have the tendency to make it harder to fight infection. I am on the 3 antibiotics since last November. In fact, I just downed the 3 a few minutes ago. So far I am handling it OK. I would make sure and infectious disease MD, your Pulmonologist and Rheumatologist are all speaking.
The stress of chronic illness is pretty hard psychologically and I often feel depressed and anxious and miss my prior very healthy and active life.

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@windwalker

@ameliar I was reading about the red tide several weeks ago. The articles all pointed to it being the cause of the 20% increase in pulmonolgy visits. It had suggested that people stay indoors as much as possible until the red tide is over. You may want to buy a free-standing air filter. I have one that I run in my bedroom during heavy pollen days. It has a hepa filter. That may help with air quality. It is sad about the loss of marine life.

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Thanks for your input… I have had a cough for many years… but this red tide has REALLY increased the problem. I would like to see it go away for both the marine life and to see if my coughing slows down.

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@irene5

@flib Do they know you have MAC? Tactfully tell them to educate themselves. What tdrell said is so true. Relatives need to understand it is not you giving them something, but your having to protect yourself from their giving you something. My family is very considerate about that. Hopefully, yours will figure it out.

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@irene, thanks I've made an effort to explain mac and bronc,, printed out articles etc. most cannot relate to it. If I said I had TB they would have some reference for.it ..and would also run like hell. I've given up explaining myself. Mostly I say OK when asked how I am or sorry, not up to talking right now and I always let people know that I'm not contagious. Flib

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@flib

@irene, thanks I've made an effort to explain mac and bronc,, printed out articles etc. most cannot relate to it. If I said I had TB they would have some reference for.it ..and would also run like hell. I've given up explaining myself. Mostly I say OK when asked how I am or sorry, not up to talking right now and I always let people know that I'm not contagious. Flib

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Well I am so sorry about that! Big hug!

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