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.

@sueinmn

@debminuet In your situation, I would definitely consider a workup at National Jewish Health or Mayo, if only to confirm that your (more MAC savvy) doc is on the right track.

After 18 months on the 3 antibiotics, 6 months daily, my body was in full rebellion. So last December, with my ID doc & pulmo, consulting with NJH, we decided to stop & see, only using Flovent, 7% saline 1X day & airway clearance. So far, so good. Made it through winter, when I usually get bronchitis &/or pneumonia, and through 2 major allergy seasons, TX & MN, without any illness and minimal need for levalbuterol nebs. Lung scan will be repeated in Dec, sooner if I get symptoms.

I have recovered most of my energy, though none of the weight I lost, and still have no appetite, so must be vigilant about eating enough. As for using the Big 3 to prevent, that will not be something I choose to do – I was too tired and sick from the meds. It will be caution & watching – my docs are happy with that strategy, even though we all think treatment will have to happen again at some point. I get the feeling that is becoming a more prevailing philosophy with MAC, since no matter how long we stay on the meds, it seems we are never really "cured", but always at risk for recurrence. Maybe by the time I need treatment again there will be something better?

Can you produce a sputum sample, either on your own or using saline nebs, so you can avoid a biopsy? So much easier on the body.
Sue

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Sue I see many people talking about saline nebs what does this help with?

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@bevmac

stopping 4/8. Check again in November to see how I am going. I feel sure giving up dairy, reducing protein, moderate plant based eating and celery juice as well as the meds. 17 months down and 1month to go. No eye issues with the medication. I am retired so can live the easy relaxed life. I'm 77. A young 77.

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I’m curious as to why the need to reduce protein in the diet.

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@ckscoville

I’m curious as to why the need to reduce protein in the diet.

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Maybe best to look up plant based diets to see how they may work. I followed my doctor's advice, and so far doing well, considering the issue.

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@joanng

Sue I see many people talking about saline nebs what does this help with?

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@joanng Joann – saline helps thin the secretions in the lungs, making it easier to "bring up the gunk." People with bronchiectasis have damaged bronchioles, so they do not function normally, and often need help. The bacteria that cause us so many issues find the gathering fluids in the lungs to be a great harbor to grow in.

References to 7% saline are because some studies have shown that MAC cannot grow in that environment, and we are trying to keep it at bay. The 7% strength requires a prescription, .9% is the common one. When I was having trouble bringing up sputum for a culture, my doc had me neb 10% before each effort – yuk! I felt a-salted for days – every time I coughed.

When nebbing, some people recommend using the entire 4ml vial of 7% – my doc says ones I have coughed enough to quit producing sputum, I can stop the neb – usually only takes about 2ml for me, but I also use Mucinex 2x/day to keep the mucus thin. Have done that for 30+ years because it also keeps my ears clear – I used to have 7-10 ear infections per year.

If you have more questions, feel free to ask.
Sue

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@ckscoville

I’m curious as to why the need to reduce protein in the diet.

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@ckscoville @bevmac I too am curious about this as it seems to contradict the National Jewish Health recommendation for extra protein while on antibiotics. I was losing weight at an alarming rate until I began following their diet recommendations, see

Sue

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@joanng

Sue I see many people talking about saline nebs what does this help with?

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Joann, nebulizing 7% saline is like washing your hands, only you are washing your lungs. It is a good lung clearance tool and gives the lungs a salty environment that bacteria doesn't like. Have you talked to your dr about prescribing it for you?

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@ckscoville

I’m curious as to why the need to reduce protein in the diet.

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From what I have read, too much animal protein is the problem. Americans tend to overdo the meat intake, for ex: three eggs and bacon in the morning, two hamburgers at lunch, and then a huge steak at dinner. Our bodies were designed to only handle a certain amount of meat at a time because of the way the amino acids are broken down. Too much animal protein at once becomes toxins, which lead to disease. My Mayo nutricianist told me to eat 70 grams of animal protein (gaged by my weight) a day to maintain optimal health. They recommend that protein to be from fish, poultry and eggs. We need the amino acids that are in animal protein to build muscle, and the oils or fat in the meat help to maintain the myalin sheath around our nerves. I do have family members who have been vegetarian for yrs and get their protein from beans, etc. Are they healthy? Reasonbly so, although both have had two knee replacements (that may just be hereditary).

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@sueinmn

@joanng Joann – saline helps thin the secretions in the lungs, making it easier to "bring up the gunk." People with bronchiectasis have damaged bronchioles, so they do not function normally, and often need help. The bacteria that cause us so many issues find the gathering fluids in the lungs to be a great harbor to grow in.

References to 7% saline are because some studies have shown that MAC cannot grow in that environment, and we are trying to keep it at bay. The 7% strength requires a prescription, .9% is the common one. When I was having trouble bringing up sputum for a culture, my doc had me neb 10% before each effort – yuk! I felt a-salted for days – every time I coughed.

When nebbing, some people recommend using the entire 4ml vial of 7% – my doc says ones I have coughed enough to quit producing sputum, I can stop the neb – usually only takes about 2ml for me, but I also use Mucinex 2x/day to keep the mucus thin. Have done that for 30+ years because it also keeps my ears clear – I used to have 7-10 ear infections per year.

If you have more questions, feel free to ask.
Sue

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@migizii your information and expertise in this area is always so helpful and insoghful❤️

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@sueinmn

@joanng Joann – saline helps thin the secretions in the lungs, making it easier to "bring up the gunk." People with bronchiectasis have damaged bronchioles, so they do not function normally, and often need help. The bacteria that cause us so many issues find the gathering fluids in the lungs to be a great harbor to grow in.

References to 7% saline are because some studies have shown that MAC cannot grow in that environment, and we are trying to keep it at bay. The 7% strength requires a prescription, .9% is the common one. When I was having trouble bringing up sputum for a culture, my doc had me neb 10% before each effort – yuk! I felt a-salted for days – every time I coughed.

When nebbing, some people recommend using the entire 4ml vial of 7% – my doc says ones I have coughed enough to quit producing sputum, I can stop the neb – usually only takes about 2ml for me, but I also use Mucinex 2x/day to keep the mucus thin. Have done that for 30+ years because it also keeps my ears clear – I used to have 7-10 ear infections per year.

If you have more questions, feel free to ask.
Sue

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Could you provide a bit more information on mucinex: What is your dose? Is it by prescription? Do you also do nasal lavage or use a nasal spray or do anything else along with this?

My ENT physician prescribed a steroid nasal spray, oral singulair and nasal lavage for thick secretions in my sinuses. Together they seem to help but haven’t resolved either the thick secretions in my sinuses or ear congestion and ear infections.

I will talk to him (ENT) about mucinex as an alternative but it would be helpful to have a little more information to make my case.

Thanks.

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I use Mucinex LA 600 mg twice a day – it is guaifenesin extended release. I use the plain version without decongestants or anything else added. If you look in the stores, it is quite expensive, so I order mine on-line, often from e-Bay (where it comes in the factory-sealed boxes, often for 1/4 the price of the drug store) Most of the generic brands are not time-release, so don't be fooled by the lower price – you have to take it 4 times a day, and the action is not the same.

It effectively thins all the secretions – nose, ears, lungs… I have used it for over 30 years without any bad effects. My husband uses it too. I use the singulair and during bad allergy season a non-steroid saline spray. Years ago I was cautioned that incorrect use of nasal lavage can force germs deeper into my sinuses, so I don't use it – don't really need it with the Mucinex keeping things moving.

Sue

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Thank you! This is so helpful. I feel the same way about the nasal lavage.

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@windwalker

Joann, nebulizing 7% saline is like washing your hands, only you are washing your lungs. It is a good lung clearance tool and gives the lungs a salty environment that bacteria doesn't like. Have you talked to your dr about prescribing it for you?

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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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