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No symptoms- do I have to be treated?
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?
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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.
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4 ReactionsI wish and hope I could/can at least say my CT was stable
So lets get the evidence then
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1 Reaction@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?
@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
@tdrell, Hi Terri. That was excellent advice for Renee. As for you, have you ever been put on the medivation 'Singulair' for the rhinitis? I was put on it many years ago and it made a world of difference for me. I still take it
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1 Reaction@tdrell, interesting about the nitrous oxide statement. I was curious a while back myself, so I looked it up on the NIH website. It stated there that it does work to kill off mac; but that it wasn't cost effective in the delivery , and that they are still working on that.
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1 ReactionAll.....that was the Aerobika....not Acapella.....
Also....here is a saga full of irony....so I had annual appts at NJH in Denver on Monday January 29, 2018. After review of CAT scan done there in November,and cultures grown there and in Wisconsin, and Pulmonary Function tests from that day, I was told lung function was stable from a year before....that GErD/aspiration of bizarre organisms into my lungs from stomach was my issue not infection....compounded by Vocal Cord Dysfunction....allergic rhinitis...obstructive sleep apnea...and obesity.
That was Monday, on Tuesday a productive cough started,....continued during my hour appt with Speech Pathologist Wednesday. For first time in my 73 years I had no appetite and went to sleep at 7pm and awoke exhausted at 10am.Somehow able to drop off rented car at Denver airport,shlep all my bags ( medical notes, medications,CPAP etc) to gate thanks to wheel chair assistance. Hacked the entire 2 hours of flight....wheel chair from gate ....hubby got bag....into car, called friend ...retired infection control nurse to confirm what I suspected I needed to do.....and did it. Went to Urgent Care 3 minutes from house....my regular Dr on duty......did nose swab....that came back with Influenza A.....put on steroids, Tamiflu and antibiotics since I had a purulent ear infection....so for 10 days, I have been vegging here at home recovering from my annual visit to respiratory hospital...and yes,,,,I did have the high dose flu vaccine in Sept.
I suspect I caught the grunge on plane going to Denver.....a woman sitting a few rows ahead and kitty corner coughed the whole 2 hours. Sadly everyone on the return flight had my germs spewed out on them. I now have learned to use the masks I had in my purse.take care all...tdrell
Is it cost effective for us to keep having repeat CT scan, lab work, long-term repeat visits to the Pulmonologist, Infectious Disease MD?We should see how the people use if for Pulmonary Hypertension.
Can you summarized the recommendations other than the 3 antibiotics