Mac + lung cavity

Posted by bevmac @bevmac, Jun 24, 2020

my 3 centimetre cavity has healed in 16 months with the 3 antibiotics – both shocked and delighted. Preventative medicine doctor assisted my immune system cope – also recommended a vegan diet for last 9 months.

@joanng

No I have not and he has not mentioned it.
Can this be done during an antibiotics 28 day cycle or must it be done once antibiotics cycle is complete?

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Joann, it can be done while on antibiotics. My regimen was to do the inhaled albuterol first thing in the a.m. to open my airways. Once open, then do the inhaled 7% sodium chloride (saline) to clean out the now opened airways. When all lung clearance and coughing is finished, then you do the inhaled antibiotic (if you are on those).

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I was wondering about the inhaled albuterol followed by 7% saline. Have been doing only saline, laying down but still seem to bring up mainly the white mucus. My oxygen seems to stay 92 to 93. Does that mean I’ve probably got a lot to clear? My oxygen used to be pretty steady at 97. I’d like to know more. Thanks

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Can you tell me who your Dr. is? I would love to see his protocol. I am a newly diagnosed MAC patient.

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Can you share what antibiotics you used and what other strategies your Dr recommended?

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@marilynk

I was wondering about the inhaled albuterol followed by 7% saline. Have been doing only saline, laying down but still seem to bring up mainly the white mucus. My oxygen seems to stay 92 to 93. Does that mean I’ve probably got a lot to clear? My oxygen used to be pretty steady at 97. I’d like to know more. Thanks

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Hi Marilyn. I have been prescribed albuterol for most of my adult life to help open my airways. It is generally prescribed for those with asthma, but it helps with other lung diseases also. If you have heart palpitation issues; you can request to have levalbuterol instead. That formulation takes out the ingredient that gives you the jitters and heart palpitations. My daily regimen is nebulized albuterol to open airways, then nebulize 7% saline to cleanse the lungs. I do this twice a day. You may want to ask your dr about albuterol since your oxygen is a little diminished from the normal mark. On some days, my oxygen level is the same as yours, but I have very good days where it is at 97%. Before 2013, I went many yrs with it at 90-91%. Mine will drop to 86 when I climb the stairs. Back to your question, your lower oxygen level is most likely due to narrowed airways or your bronchiectasis. Albuterol may help that. I am not a medical expert, so you need to consult with your dr about that. (Some drs think that oxygen levels at 90-93 is ok.) You are in danger if it stays at 88%. Please let me know, if you don't mind, what your dr says about this. You can probably take care of this with a phone call and ask about the albuterol.

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@janrn1

Can you tell me who your Dr. is? I would love to see his protocol. I am a newly diagnosed MAC patient.

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Hi Jan. Were you asking me this question? Also, is there an rn at the end of your name because you are a nurse?

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@windwalker

Hi Marilyn. I have been prescribed albuterol for most of my adult life to help open my airways. It is generally prescribed for those with asthma, but it helps with other lung diseases also. If you have heart palpitation issues; you can request to have levalbuterol instead. That formulation takes out the ingredient that gives you the jitters and heart palpitations. My daily regimen is nebulized albuterol to open airways, then nebulize 7% saline to cleanse the lungs. I do this twice a day. You may want to ask your dr about albuterol since your oxygen is a little diminished from the normal mark. On some days, my oxygen level is the same as yours, but I have very good days where it is at 97%. Before 2013, I went many yrs with it at 90-91%. Mine will drop to 86 when I climb the stairs. Back to your question, your lower oxygen level is most likely due to narrowed airways or your bronchiectasis. Albuterol may help that. I am not a medical expert, so you need to consult with your dr about that. (Some drs think that oxygen levels at 90-93 is ok.) You are in danger if it stays at 88%. Please let me know, if you don't mind, what your dr says about this. You can probably take care of this with a phone call and ask about the albuterol.

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Thank you for the info on albuterol – it gives me the jitters. I’m using the 7% in my neb and drink a lot of water when I do – my problem IS how long it takes me to start coughing, other than a little while on the neb. I lay down afterwards for as long as a half hour and quite often won’t cough up much. I get up and go about my day and maybe 15 or 20 minutes later I’ll have much more. Doc doesn’t know so maybe it’s normal. Just wonder if anyone else has a similar problem. I’m off meds except for azithromycin 3 times a week maintenance. I’m also 84 and have been battling this since ‘03. Marilyn😷

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@marilynk

Thank you for the info on albuterol – it gives me the jitters. I’m using the 7% in my neb and drink a lot of water when I do – my problem IS how long it takes me to start coughing, other than a little while on the neb. I lay down afterwards for as long as a half hour and quite often won’t cough up much. I get up and go about my day and maybe 15 or 20 minutes later I’ll have much more. Doc doesn’t know so maybe it’s normal. Just wonder if anyone else has a similar problem. I’m off meds except for azithromycin 3 times a week maintenance. I’m also 84 and have been battling this since ‘03. Marilyn😷

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Wow, Marilyn! That is a long time to be battling this crud! God bless you. Have you tested positive for all of those years? Changing the subject here: I think that even if the saline doesn't cause you to cough up phlegm, it is still doing you good by thinning the mucous, and also making a salty inhospitable environment for mac to grow. I am finishing up my saline treatment right now even as we speak. It did make me cough, and it will cause the junk in my lungs to come up for the next hour. If the albuterol jitters get to you too bad; remember to ask for levalbuterol instead. Big hug to you!

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I did get the levalbuteral and it helps with the jitters. I have been battling most of my lung problems since 03. My biggest problems are the Mac, has been in remission for a few months, Nocardia in remission for almost a year. Have had other infections off and on and treated with cipro or amoxicillin. Have a couple samples in now and waiting to see what’s up as my mucus is a yellowish/sand color – I do have a cystic fibrosis gene which they tell me makes me more susceptible to these lesser bugs. BUT, I’m very blessed in that I feel so good and I’m active. I walk 7,000 steps a day and find that makes a big difference in my life especially since I’m struggling right now to keep my oxygen at 94. Hopefully lab results show up soon. Thank you for writing to me – you’re very encouraging. Thank goodness I read about saline here as my Docs had never suggested it. 😊🙏

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My Dr.s do not want to treat the MAC. They say it's very hard to get rid of and the antibiotics would be very hard on me. But when I have a flare-up I feel pretty bad, go on Augmentin or something like it. I feel better for a while but it always comes back. Do you think a trip to Mayo Clinic would help me or be worth the try? At this point, I am not sure. Thank you for reading, hope to hear back from you, Jan

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@janrn1

My Dr.s do not want to treat the MAC. They say it's very hard to get rid of and the antibiotics would be very hard on me. But when I have a flare-up I feel pretty bad, go on Augmentin or something like it. I feel better for a while but it always comes back. Do you think a trip to Mayo Clinic would help me or be worth the try? At this point, I am not sure. Thank you for reading, hope to hear back from you, Jan

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Jan, I don't have MAC; I have a different bacterial infection. That being said, I do recommend the Mayo Clinic. After a year of unsuccessful efforts by other doctors to correctly diagnose and treat my condition, that all changed when I was able to see both a pulmonary specialist and an infectious disease specialist at Mayo. Still working on my condition — I'm miserable at times — but at least I feel I'm on the right track.

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@janrn1

My Dr.s do not want to treat the MAC. They say it's very hard to get rid of and the antibiotics would be very hard on me. But when I have a flare-up I feel pretty bad, go on Augmentin or something like it. I feel better for a while but it always comes back. Do you think a trip to Mayo Clinic would help me or be worth the try? At this point, I am not sure. Thank you for reading, hope to hear back from you, Jan

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I would be on the phone immediately to contact Mayo or National Jewish for an appt. Your doctor is correct, MAC is hard to get rid of and yes the antibiotic can be very hard on you. That said, it took me over a year of going to different doctors (primary, GI, ENT and local pulmonary doc) and even paying out of pocket to get a CT of my chest to see what was going on in my body. The pulmonary doc did a bronchoscopy and I got the diagnosis of bronchiectasis, MAC and Pseudomonas. He hit me with the 3 heavy antibiotics and I felt I was slowly dying. I found this group and a member sent me the name and info on a doctor 3 1/2 hrs away. I contacted his office and with was able to get an appt. within a couple of weeks. My next option would have been Mayo–either Rochester, MN or Jacksonville, FL. The doctor I saw finally said I probably should never have been put on medication. He also started me nebulizing–that day. I had to undergo some IV antibiotic treatment for a tough (3 strains) of Pseudomonas. It still flares it's nasty head and I'm currently positive but only one strain. I asked if I could increase my nebulizing from 3% Sodium Chloride to 7% and he accommodated my request. Currently I'm not on any medication but do nebulizing once a day. I feel well and do what I can to stay that way. Thank you God the Father.

How long have you been diagnosed? What is the qualification of your doctor–is he a specialist? I learned a long time ago that knowledge is power. Your reaching out to this group is probably the best thing you could do. Everyone here is ready and willing to help you with questions you have. Now, get busy and find your super hero doctor. They're out there.

Pray God will be with you in your endeavours.
Faye

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