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reneeplus6
@reneeplus6

Posts: 4
Joined: Sep 15, 2017

No symptoms- do I have to be treated?

Posted by @reneeplus6, Mon, Feb 5 1:49pm

I’m headed for my third Bronch on Thursday to try and figure out what to do next. Let’s see if I can make a long story short. I should mention I’m 53 and otherwise in very good health.
Twice I’ve gone in for Bronchoscopies (due to strange ongoing coughs) and discovered the H-flu bacteria. Cough goes away with the treatment for H-flu. The last bronch 18 months ago also revealed MAC. I took the 3 antibiotic cocktail for one year. We stopped at a year as it brought on a strong depression bordering on suicidal thoughts. However, now my follow up CT scans show increased opacifciation and larger nodules.
I continue to feel great- no cough, tiredness, minimal mucus (but I also have allergies), no fever. I’m trying to figure out what happens if we do nothing- the best answer I get from my pulmonologist is that, if it eventually has to be cut out, it will be a bigger problem. I also have an appt with infectious disease in a couple weeks to get their take on it.
My only treatment right now is my acupuncturist who’s treated me for several years for over all health. I guess my question is- if I tested positive for MAC but have no symptoms, do I have to be treated with medication?

REPLY

Hi @ reneeplus6 I think it depends on the CT scan, if it is rapidly getting worse(cavities , nodules), if its bad and getting worse they will treat it, but it also depends on how you coped with the medication. There are new meds like inhaled Amakacin which will be available soon hopefully and have less side effects. Did your depression stop when you came off the meds? Often knowing you have MAC causes anxiety etc also.. There is so much unknown about MAC but research is being done so hopefully we will know more soon. Most doctors only operate as a last choice.
Its is great that you have no symptoms. Alot of us seem to have allergies also, I think that means more mucus for the bugs to grown in us.
Hope all goes well for you.

@reneeplus6
My personal take is the get an infectious disease opinion and maybe a third opinion at a Mayo or somewhere.
It’s a bit concerning that the ct is worse but having no symptoms is very encouraging.
Also would wait to see if a couple of Mac tests in a row come back positive.
I was positive to mycobacteria abcessus for a year with no treatment and have turned negative the last year. My doctors chose a wait and see approach.
I’m sure others will chime in here.
Take care
Shari

I continue to hope that the nitric oxide and other studies will come soon

@reneeplus6 …..everyone’s situation is so unique…..I am a firm believer and practice getting 2nd and 3 rd if necessary opinion when indicated.Mayos
In Minnesota and National Jewish in Denver are two of the specialists in NTM.
In my medical journey with a now 3 year old cough without weight loss or fevers but MAC from a bronchoscope 18 months ago…..here is where I am at
…..just returned from one year follow up at NJH in Denver….met again with pulmonologist and ID DR who saw me one year ago.
……in spite of single sputum cultures growing bizarre bacteria…..my lungs are not infected with them…they land in there due to my silent aspiration from my gastric reflux which is compounded by my obesity and other factors listed.
Last year’s laryngoscopy revealed I have Vocal Cord dysfunction which is exacerbated by my acute allergic rhinnorherea ( all that continuous mucus dripping onto Vocal Cords)
I am allergic to molds but local allergist did not want to desensitize me cause the cardiac beta blocker I take might not allow adrenaline to work if I have an anaphylactic reaction….pulmonologist said go ahead.I should also be rinsing my nose out with saline washes.

I had one session with Speech Pathologist to learn exercises for cough minimization…..will have repeat in future.

The sleep obstruction apnea which was found on the bronchoscopy and confirmed by a sleep study and is being treated with CPAP has a role in all of this.
Repeat from a year ago CAT scan shows no bronchietasis….nothing new except bronchial wall thickening which is caused by the stomach contents getting in the lungs.
I asked both doctors what do I tell the local ID doctor who is Itching to treat me with the big 3 antibiotics.
“Tell him that the standard of care is to grow the bacteria in 3 serial cultures with sufficient colonization…..and that the CAT scan show active infection”
None of which I have.
Again to repeat Reneeplus6….get other valid expert opinions….be sure all bases covered……best of luck. Tdrell

All….I asked the ID doctor at NJH Re Nitric Oxide therapy for NTM treatment when I saw her a week ago. She brushed it off saying…..no proof of effectiveness.
Another question I was supposed to ask had to do Re cleaning Acapella equipment.
Soak 4 pieces in soapy tap water then rinse with water boiled for ten minutes.
Tdrell

@tdrell

@reneeplus6 …..everyone’s situation is so unique…..I am a firm believer and practice getting 2nd and 3 rd if necessary opinion when indicated.Mayos
In Minnesota and National Jewish in Denver are two of the specialists in NTM.
In my medical journey with a now 3 year old cough without weight loss or fevers but MAC from a bronchoscope 18 months ago…..here is where I am at
…..just returned from one year follow up at NJH in Denver….met again with pulmonologist and ID DR who saw me one year ago.
……in spite of single sputum cultures growing bizarre bacteria…..my lungs are not infected with them…they land in there due to my silent aspiration from my gastric reflux which is compounded by my obesity and other factors listed.
Last year’s laryngoscopy revealed I have Vocal Cord dysfunction which is exacerbated by my acute allergic rhinnorherea ( all that continuous mucus dripping onto Vocal Cords)
I am allergic to molds but local allergist did not want to desensitize me cause the cardiac beta blocker I take might not allow adrenaline to work if I have an anaphylactic reaction….pulmonologist said go ahead.I should also be rinsing my nose out with saline washes.

I had one session with Speech Pathologist to learn exercises for cough minimization…..will have repeat in future.

The sleep obstruction apnea which was found on the bronchoscopy and confirmed by a sleep study and is being treated with CPAP has a role in all of this.
Repeat from a year ago CAT scan shows no bronchietasis….nothing new except bronchial wall thickening which is caused by the stomach contents getting in the lungs.
I asked both doctors what do I tell the local ID doctor who is Itching to treat me with the big 3 antibiotics.
“Tell him that the standard of care is to grow the bacteria in 3 serial cultures with sufficient colonization…..and that the CAT scan show active infection”
None of which I have.
Again to repeat Reneeplus6….get other valid expert opinions….be sure all bases covered……best of luck. Tdrell

Jump to this post

I too have acid/pepsin causing the damage to my bronchial tubes. Have just started a strict acid reflux reduction diet on my own initiative, and have to stay upright for 3 hours after every meal. I have more energy and cough less. I have to squeeze the postural drainage for bronchiectasis into my day, but that is working to clear out a lot of mucus. After 14 months with 3 antibiotic treatment two years ago, there has been no more sign of MAC.

I’m glad to find this forum and hope I can contribute information that helps.

@boomerexpert Thanks for the info. Unfortunately I will be working that afternoon and won’t be able to participate. I’m hoping whoever is attending will share what they learn from the town hall conference on this site.

Liked by heathert

@tdrell

@reneeplus6 …..everyone’s situation is so unique…..I am a firm believer and practice getting 2nd and 3 rd if necessary opinion when indicated.Mayos
In Minnesota and National Jewish in Denver are two of the specialists in NTM.
In my medical journey with a now 3 year old cough without weight loss or fevers but MAC from a bronchoscope 18 months ago…..here is where I am at
…..just returned from one year follow up at NJH in Denver….met again with pulmonologist and ID DR who saw me one year ago.
……in spite of single sputum cultures growing bizarre bacteria…..my lungs are not infected with them…they land in there due to my silent aspiration from my gastric reflux which is compounded by my obesity and other factors listed.
Last year’s laryngoscopy revealed I have Vocal Cord dysfunction which is exacerbated by my acute allergic rhinnorherea ( all that continuous mucus dripping onto Vocal Cords)
I am allergic to molds but local allergist did not want to desensitize me cause the cardiac beta blocker I take might not allow adrenaline to work if I have an anaphylactic reaction….pulmonologist said go ahead.I should also be rinsing my nose out with saline washes.

I had one session with Speech Pathologist to learn exercises for cough minimization…..will have repeat in future.

The sleep obstruction apnea which was found on the bronchoscopy and confirmed by a sleep study and is being treated with CPAP has a role in all of this.
Repeat from a year ago CAT scan shows no bronchietasis….nothing new except bronchial wall thickening which is caused by the stomach contents getting in the lungs.
I asked both doctors what do I tell the local ID doctor who is Itching to treat me with the big 3 antibiotics.
“Tell him that the standard of care is to grow the bacteria in 3 serial cultures with sufficient colonization…..and that the CAT scan show active infection”
None of which I have.
Again to repeat Reneeplus6….get other valid expert opinions….be sure all bases covered……best of luck. Tdrell

Jump to this post

@egayle187 …..glad you are doing well…what were your symptoms prior to treatments? Cough and lack of energy’s?
How many sputum specimens showed the MAC?
Were did you get medical care? Tdrell

Thanks all for the information and encouragement!

I will update all if I participate. The good news, a few weeks after, they tend to post their conferences online for those who couldn’t attend.

@tdrell

@reneeplus6 …..everyone’s situation is so unique…..I am a firm believer and practice getting 2nd and 3 rd if necessary opinion when indicated.Mayos
In Minnesota and National Jewish in Denver are two of the specialists in NTM.
In my medical journey with a now 3 year old cough without weight loss or fevers but MAC from a bronchoscope 18 months ago…..here is where I am at
…..just returned from one year follow up at NJH in Denver….met again with pulmonologist and ID DR who saw me one year ago.
……in spite of single sputum cultures growing bizarre bacteria…..my lungs are not infected with them…they land in there due to my silent aspiration from my gastric reflux which is compounded by my obesity and other factors listed.
Last year’s laryngoscopy revealed I have Vocal Cord dysfunction which is exacerbated by my acute allergic rhinnorherea ( all that continuous mucus dripping onto Vocal Cords)
I am allergic to molds but local allergist did not want to desensitize me cause the cardiac beta blocker I take might not allow adrenaline to work if I have an anaphylactic reaction….pulmonologist said go ahead.I should also be rinsing my nose out with saline washes.

I had one session with Speech Pathologist to learn exercises for cough minimization…..will have repeat in future.

The sleep obstruction apnea which was found on the bronchoscopy and confirmed by a sleep study and is being treated with CPAP has a role in all of this.
Repeat from a year ago CAT scan shows no bronchietasis….nothing new except bronchial wall thickening which is caused by the stomach contents getting in the lungs.
I asked both doctors what do I tell the local ID doctor who is Itching to treat me with the big 3 antibiotics.
“Tell him that the standard of care is to grow the bacteria in 3 serial cultures with sufficient colonization…..and that the CAT scan show active infection”
None of which I have.
Again to repeat Reneeplus6….get other valid expert opinions….be sure all bases covered……best of luck. Tdrell

Jump to this post

I wish and hope I could/can at least say my CT was stable

@tdrell

All….I asked the ID doctor at NJH Re Nitric Oxide therapy for NTM treatment when I saw her a week ago. She brushed it off saying…..no proof of effectiveness.
Another question I was supposed to ask had to do Re cleaning Acapella equipment.
Soak 4 pieces in soapy tap water then rinse with water boiled for ten minutes.
Tdrell

Jump to this post

So lets get the evidence then

Liked by heathert

@reneeplus6 , Hello Renee. My dr at the Mayo Clinic does not believe in using the three drug cocktail unless the bacterial colony is extremely high and a person is very ill with symptoms. He has other ways of treating mac. What you have described, to me; sounds like you may have bronchiectasis. People who get infected with mac will commonly also have bronchiectasis. Are you familiar with this?

@pfists

@reneeplus6
My personal take is the get an infectious disease opinion and maybe a third opinion at a Mayo or somewhere.
It’s a bit concerning that the ct is worse but having no symptoms is very encouraging.
Also would wait to see if a couple of Mac tests in a row come back positive.
I was positive to mycobacteria abcessus for a year with no treatment and have turned negative the last year. My doctors chose a wait and see approach.
I’m sure others will chime in here.
Take care
Shari

Jump to this post

@reneeplus6 , my doctor at Mayo takes the wait and see approach too. He said that many times the mac goes away on it”s own. He likes to treat with antibiotics, but not the Big 3 cocktIl. He did not use the wait and see approach on me because when I first went to him I was actually infected with pseudomonas. That one doesn’t require a lengthy treatment. It was gone in 30 days. Several years after my first visit with this doctor, I did test positive for mac. I was put on monthly antibiotics indefinately. Still, not the Big 3, just one antibiotic for 10 days a month. I have been on this regimen for two years. So gar, it has been working for me. I never cough and seem normal with the exception of shortness of breath and low energy. I fefinitely jave a better quality of life now since attending the Mayo Clinic. I hope that you can find some peace with this disease. Hugs, Terri

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