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.

That is excellent information!

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@brigby

@cindyrue
Hi there, like you I keep pushing myself to work, work out, and I am not being treated with The Big 3 right now. YES I agree at times my other body systems are being attacked, especially GI tract, though the research says the disease only spreads outside the lungs in those with immunodeficiency (HIV). Just got another sputum sample back with more fungus, so my ID doctor just ordered another sinus & chest CT scan in hopes of determining if it is just a colonizer, or if it is causing disease. Just had both scans in January, I will glow in the dark before long, LOL! Prayers for all.

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@migizii it was interesting reading your input about outcomes from your sputum test, cindyrue, asi have not heard anyone else discuss getting a “colonizer” type outcome……which is what happened to me with my only sputum tests, to date. Even though I asked my doctor what all this means and I seem to understand what it means, does colonizing cultures lead to disease?

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Thank you . I guess I am looking for quick positive
Info . Hate having to wait a year for next CT

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@migizii

@migizii it was interesting reading your input about outcomes from your sputum test, cindyrue, asi have not heard anyone else discuss getting a “colonizer” type outcome……which is what happened to me with my only sputum tests, to date. Even though I asked my doctor what all this means and I seem to understand what it means, does colonizing cultures lead to disease?

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@migizii Hi there. I cannot answer this question. I feel like colonizing can't be a good thing. These critters are slow growing, but they create a tough outer shell called a 'biofilm'. Many times this biofilm protects this bacteria from antibiotics, heat, chlorine, etc. I freaked out when I was told I had 4 colonies. But then, we have a member who had over 100! In all of my reading over medical journals and websites,; none really elaborated on explaining colonization. This sounds like a good question for Dr. Falkinham.

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@windwalker

@migizii Hi there. I cannot answer this question. I feel like colonizing can't be a good thing. These critters are slow growing, but they create a tough outer shell called a 'biofilm'. Many times this biofilm protects this bacteria from antibiotics, heat, chlorine, etc. I freaked out when I was told I had 4 colonies. But then, we have a member who had over 100! In all of my reading over medical journals and websites,; none really elaborated on explaining colonization. This sounds like a good question for Dr. Falkinham.

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@migizii wow! Thanks for taking all this time to look into my question! Who is this doctor you speak of? How would I contact him? This is a wonderful group and I’m so glad to be a part of it!

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@windwalker

@migizii Hi there. I cannot answer this question. I feel like colonizing can't be a good thing. These critters are slow growing, but they create a tough outer shell called a 'biofilm'. Many times this biofilm protects this bacteria from antibiotics, heat, chlorine, etc. I freaked out when I was told I had 4 colonies. But then, we have a member who had over 100! In all of my reading over medical journals and websites,; none really elaborated on explaining colonization. This sounds like a good question for Dr. Falkinham.

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The doctors can’t agree on what is infection vs. colonization.

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@migizii

@migizii wow! Thanks for taking all this time to look into my question! Who is this doctor you speak of? How would I contact him? This is a wonderful group and I’m so glad to be a part of it!

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Dr. Joseph Falkinham is a research professor at Va. Tech whose main field of study is MAc/NTM mycobacteriums. He often speaks at the NTM conferences and advises National Jewish Health. He is very good at answering his e-mails, but I would read things he has written or watch a video of him speaking first before contacting him. That way, you are not asking redundant questions of him. I think this colonization question is a good one to ask him. Here is his e-mail address: jofiii@vt.edu

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@windwalker

Dr. Joseph Falkinham is a research professor at Va. Tech whose main field of study is MAc/NTM mycobacteriums. He often speaks at the NTM conferences and advises National Jewish Health. He is very good at answering his e-mails, but I would read things he has written or watch a video of him speaking first before contacting him. That way, you are not asking redundant questions of him. I think this colonization question is a good one to ask him. Here is his e-mail address: jofiii@vt.edu

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@migizii thanks so much! I will check out his information before sending the question, just in case I find the answer!😊

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@jkiemen

@ann0616 Sound like what happened to me. Big pneumonia out of the blue. Hospital then discovered MAC. Watched with CT for about 2.5 years and there was slight worsening over time until finally I was put on the Big 3. I am finishing Month 15. The past 3 months have been a bit harder to take. I have a CT next month and it will be decided if I can come off them.

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@jkiemen Please let me know how it goes with your CT. Your history does sound very much like mine. I'm in the slight worsening part right now. I cringe when someone has a cold around me.

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@ann0616 I have my scan on the 15th of this month and my Dr appt on the 17th. I am anxious about getting the results as always. I am hoping to be off the meds and give myself a break. One thing I have tried not to do is schedule tests on a Friday. Makes me worry all weekend. I have been exposed to so mamy germs of late. Cold, GI viruses etc. One thing I learned is that Lysol and usually the Chlorox wipes you get at the store don't cover the Norovirus for GI bug. You have to have one that actually as bleach in it or Hydrogen Peroxide. If you get the GI bug in house you need one of those or make your own bleach and water solution. Also any contaminated clothing needs to be washed alone on hot and dried on hot. I will let you all know how my CT goes. Been on the BIG 3 since November 30, 2017.

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@jkiemen

@ann0616 I have my scan on the 15th of this month and my Dr appt on the 17th. I am anxious about getting the results as always. I am hoping to be off the meds and give myself a break. One thing I have tried not to do is schedule tests on a Friday. Makes me worry all weekend. I have been exposed to so mamy germs of late. Cold, GI viruses etc. One thing I learned is that Lysol and usually the Chlorox wipes you get at the store don't cover the Norovirus for GI bug. You have to have one that actually as bleach in it or Hydrogen Peroxide. If you get the GI bug in house you need one of those or make your own bleach and water solution. Also any contaminated clothing needs to be washed alone on hot and dried on hot. I will let you all know how my CT goes. Been on the BIG 3 since November 30, 2017.

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Hi, I can’t use anything with bleach to clean! But I do use vinegar and that cleans anything that Bleach can also. I put in the dishwasher, with my laundry and all my counter tops. The smell is not high and I sometimes put some fresh lemon with it she thouse smells great. The last time I used bleach I coughed for two days and had problems breathing so I stopped all bleach from my house. Clean my shower heads all taps in my house with vinegar and I really love it. Hope it works out great for your scan and doctors appointment. Rita:)

Liked by pfists

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Hey everyone. Been some time since I posted on here. Well it’s been over a year since I been on the triple 3 and I don’t think it’s working. I’m curious if anyone is having similar symptoms…my lungs feel like they are on fire. They are painful and some days are worst than others but always chronically pained. Last 2 days have been worse than normal and now I have a swollen lymph node on my right side of neck. Never had that before. Ever. Hopefully once the travel restrictions are lifted they will do another biopsy to confirm if the MAC infection is still active which I’m sure it is. I feel it anything it’s gotten worse not better. Curious if anyone else experienced the burning pain.
Thanks
Laura

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@laura34 Yes I had the burning in my lung area, It was 5-6 years ago now, I havnt had the burning since my mac has gone, my dr diddnt seem interested in it which was awful. I think mine was at its worst if I went for a fast walk, but would come on any time. Are you on the big 3 daily or 3x a week, if mac isnt going your Dr may up it to daily meds(if not now) and ask if Amikacin inhaled may help you. I went 3 years, 3x week meds and no change, then on daily meds and Amikacin all my cavities disappeared and most the nodules, I feel much better. Take care Heather

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@laura34

Hey everyone. Been some time since I posted on here. Well it’s been over a year since I been on the triple 3 and I don’t think it’s working. I’m curious if anyone is having similar symptoms…my lungs feel like they are on fire. They are painful and some days are worst than others but always chronically pained. Last 2 days have been worse than normal and now I have a swollen lymph node on my right side of neck. Never had that before. Ever. Hopefully once the travel restrictions are lifted they will do another biopsy to confirm if the MAC infection is still active which I’m sure it is. I feel it anything it’s gotten worse not better. Curious if anyone else experienced the burning pain.
Thanks
Laura

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@laura34, yes, Laura, I always have the burning but mine is relatively mild. I always feel it and have always thought that's just the chronic inflammation part of the chronic lung disease. I took the big also about two years and my MAC has come and gone. Not sure what it's doing right now as I will have a CT scan and sputum test in June. I mentioned it to my infectious disease doctor once and she said they have been using Azithromycin for the inflammation but I didn't ask if it was a maintenance dose or just for a few months. My other guess is steroids but maybe someone else knows on this site. Nan

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I can only say my PCP doctor is adamant about not ever taking steroids of any sort. He said it would be like throwing gasoline on a fire ( regarding the MAC). I don't know if anyone else can shed some light on this topic. Toni

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