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.

@ling123

@lorifilipek Normally the stuff from your nose should not go into your lungs even when you swallow it while lying down. But it is a different story if you have GERD. Many people in this group have GERD that causes your stomach content to go into their lungs during the night. I know I don't have sinus problems but was not sure if I had GERD because people who have silent acid reflux would not have the typical symptoms that others have. My pulmonologist ordered a test that showed I did not have GERD. If you have not tested to see whether you have GERD or not, maybe you should ask for a test. Search on the word GERD in this forum (within MAC & Bronchiectasis) by clicking the magnifying glass symbol on top of the page. You'll find a lot of discussions about that topic. I have done nasal flush many years ago but have not continued. Maybe I should give it another try, too. It'll probably help with my allergy symptoms during the fall season as well as flushing out anything I breathe in indoors (I'm allergic to dust mite).

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@ling123 I have mild GERD. I have had osteopenia for almost 20 years, but could not tolerate Fosamax. Ten years ago I had an endoscopy because of acid reflux problems. They noted I had grade 1 erosive esophagitis and a small sliding hiatal hernia. I haven't been tested since then, but I've had much less problem with acid reflux since I've had my gall bladder removed and have had a much better diet.

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@windwalker

@lorifilipek Hello, I see that you joined our group a few weeks ago. Welcome to Connect. I am happy to learn that you survived your cancer. That makes you a seasoned warrior in personal health. As for your current diagnosis, it seems like you are catching your lung disease early and doing the right things to cut it off at the pass. Exercise definitely helps to strengthen your lungs, so I am glad that you are jogging. I am curious, did you stop swimming because of what you read here about mac being found in pools?

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@windwalker Terri, yes, I stopped swimming because of what I've read about mac being found in pools. I also have well water and our hot water tank is set at 120 degrees, and I'm an avid outdoors person and gardener. I won't give up the outdoors. I'd love to hear more about the nebulized saline and how to use it. Thanks! Lori

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@heathert

@windwalker When I nebulise the saline I blow it out my nose which loosens any mucus and you can blow it out.

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@heathert Good to know!

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@lorifilipek

@windwalker Terri, yes, I stopped swimming because of what I've read about mac being found in pools. I also have well water and our hot water tank is set at 120 degrees, and I'm an avid outdoors person and gardener. I won't give up the outdoors. I'd love to hear more about the nebulized saline and how to use it. Thanks! Lori

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@lorifilipek , The 7% sodium chloride is inhaled saline (salt). It is good for lung hygiene and keeps the 'cooties' from wanting to live in them. You don't seem to be very ill yet from this disease; doing the nebulized saline may very well keep you from getting sicker. My doctor is a big proponant for it and so am I. @alleycatkate Kate, can you please dig that article out of your archieves with that sodium chloride chart in it for Lori? I thought I had bookmarked it, but guess I didn't. Thank you!

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@windwalker

@lorifilipek , The 7% sodium chloride is inhaled saline (salt). It is good for lung hygiene and keeps the 'cooties' from wanting to live in them. You don't seem to be very ill yet from this disease; doing the nebulized saline may very well keep you from getting sicker. My doctor is a big proponant for it and so am I. @alleycatkate Kate, can you please dig that article out of your archieves with that sodium chloride chart in it for Lori? I thought I had bookmarked it, but guess I didn't. Thank you!

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@windwalker @lorifilipek …..7% saline solution effect on MAC. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/

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Interesting…. but in layman's terms?

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@windwalker @alleycatkate @tinaesims Terri, thanks for the info! Kate, thanks for the scientific article. I found it very eye-opening and helpful! Tina, I’m an “aqueous geochemist” by training, which means that my career has been spent working with environmental issues related to water. I can try to summarize the article in layman’s terms. It showed the effects of different strengths of salt solutions on different species of mycobacteria and suggests that to stop the growth of MAC bacteria, you’d need a salt solution strength of greater than 6% salt in water. I believe that’s why Terri recommended using a 7% saline nebulizer. I also found the bronchiectasis site that @alleycatkate linked to in another thread (http://bronchiectasis.com.au/physiotherapy/techniques/inhalation-therapy-via-a-nebuliser). It recommended to use a nebulizer with a 6 to 7% saline solution. Does anyone have any suggestions on which nebulizer to get and whether I should also try the Aerobika or something similar? Thanks, Lori.

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I do a neti pot with saline every morning. My doctor has me doing the Aerobika 2 times a day. I asked his nurse about the saline and I didn't get an overwhelming response.

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@lorifilipek

@windwalker @alleycatkate @tinaesims Terri, thanks for the info! Kate, thanks for the scientific article. I found it very eye-opening and helpful! Tina, I’m an “aqueous geochemist” by training, which means that my career has been spent working with environmental issues related to water. I can try to summarize the article in layman’s terms. It showed the effects of different strengths of salt solutions on different species of mycobacteria and suggests that to stop the growth of MAC bacteria, you’d need a salt solution strength of greater than 6% salt in water. I believe that’s why Terri recommended using a 7% saline nebulizer. I also found the bronchiectasis site that @alleycatkate linked to in another thread (http://bronchiectasis.com.au/physiotherapy/techniques/inhalation-therapy-via-a-nebuliser). It recommended to use a nebulizer with a 6 to 7% saline solution. Does anyone have any suggestions on which nebulizer to get and whether I should also try the Aerobika or something similar? Thanks, Lori.

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@lorifilipek Thank you for your summary of the article, It was a very confusing article.
Re the nebuliser, I use a Pari EFlow and it is fantastic, no tubes to clean and its fast, so easy to use and easy to take anywhere, It is more expensive than others but the convenience factor was important to me, you will also need a sterilizer to clean your nebuliser. I tried using the Aerobika but it did not work for me like the saline, but I know others that it has helped. Heather

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@heathert

@lorifilipek Thank you for your summary of the article, It was a very confusing article.
Re the nebuliser, I use a Pari EFlow and it is fantastic, no tubes to clean and its fast, so easy to use and easy to take anywhere, It is more expensive than others but the convenience factor was important to me, you will also need a sterilizer to clean your nebuliser. I tried using the Aerobika but it did not work for me like the saline, but I know others that it has helped. Heather

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@heathert Thanks! Do you make your own saline solution? If not, where do you get it? I've been making my own nasal flush solutions from sea salt and distilled water. (Btw, there were other aspects to the article, but they didn't seem as relevant to our discussion here.)

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@tinaesims

I do a neti pot with saline every morning. My doctor has me doing the Aerobika 2 times a day. I asked his nurse about the saline and I didn't get an overwhelming response.

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@tinaesims When I asked my pulmonologist about nebulizing he said absolutely not. Then I read Windwalker's message saying that her Dr thinks all MAC patients should nebulize 7% saline. I then found the above article that I posted along with a few others that I read and decided that I need to nebulize. Sometimes you will need to be your own advocate as some Doctors and nurses, though well intended, do not have the up to date information or are just plain wrong. I am a big proponent of research. Anyway, I decided my pulmonologist was dead wrong and began nebulizing. I cannot tell you what an immense difference it made in my breathing. I subsequently have made an appointment with Windwalker's Dr for a second opinion on my status… Sometimes you need to separate the wheat from the chaff. Good luck…Kate

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@lorifilipek

@heathert Thanks! Do you make your own saline solution? If not, where do you get it? I've been making my own nasal flush solutions from sea salt and distilled water. (Btw, there were other aspects to the article, but they didn't seem as relevant to our discussion here.)

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@lorifilipek …We could use you here in FL with our Red Tide and Algae Crisis…sounds like interesting work. Thanks for your summary on the article. I asked my GP to prescribe the hypertonic 7% saline solution. It comes in premeasured little pippets. (I used to make my saline solution for my nettie pot but would not know how to get a 7% solution for nebulizing) The pippets are great to use for nebulizing…no mess, correct salinity, pre measured and my insurance covers most all of it. I cannot tell you what a difference the nebulizing has made for my breathing. It also makes you cough and bring up some of those mucous plugs. Somehow my breathing is a lot easier since starting the practice twice a day. Kate

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@lorifilipek

@heathert Thanks! Do you make your own saline solution? If not, where do you get it? I've been making my own nasal flush solutions from sea salt and distilled water. (Btw, there were other aspects to the article, but they didn't seem as relevant to our discussion here.)

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@lorifilipek I get a script from my specialist for the saline, much easier. I think your info from the article was spot on. 🙂

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Amakacin Inhaled is approved by the FDA yipeee https://www.ntminfo.org/news/2018/09/fda-approves-arikayce/

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