Bronchiectasis: Pulmonary doc wants to scope me to look inside

Have a blessed day,

Susan

Sunmoonstars, thank you so much for sharing your experience.  I did decide to undergo bronoscopy yesterday morning and should get results next week.

Can you share more about the tablets/ drugs you were given?  My mental obstacle is avoiding undermining my immune system thereby rendering me antibiotic resistant or opening me to other opportunistic infections. Thanks for sharing that you did not get other infections.  Currently I use antibiotics on average every 18-24 months to ward off intensification of lung symptoms, don't seem to have upper respiratory problems, take oil of oregano, olive leaf extract, Vitamins C & D daily with multivitamin. Also take pHi-Zymes systemic enzymes for purposes of anti-unflammation and clearing mucus/ toxins. My coughing is more than other people but not too problematic since I don't work outside home.  Any insight/ learning you can share about your treatment is appreciated.  I'm so happy the treatment is helping you and pray your lungs will sustain.  The future I think is stem cell therapy from adipose fat tissue, already being used for lung patients but too pricey unless FDA approves and insurance companies participate.  The direct stem injections into bloodstream, using one's own abdominal stem cells, goes first to heart and lungs I am told and the results are very positive.  Perhaps in future! Thanks again.

They found a MAC infection, basically non tranmissable form of TB, not infectious to anyone else but without treatment would slowly have eaten away at my lungs. I have been tested for every possible underlying cause but other than what's in my lungs I am healthy. The drug treatment is a combination therapy of 3 different types of meds three times a week. Azythrimyicin is the antibiotic then two TB type drugs that are used even though I don't have TB.  I've tolerated the drugs pretty well, increased my working hours from 3 to 4 days a week and any side effects of the meds found solutions to overcome. The drugs aren't nice. But a bug that would continue to make me ill was worse. Try to keep healthy, drink lots of water, sleep, exercise. I've actually gained weight since being on this treatment even though I eat less and exercise more. I've found this to be pretty amazingly after continuing to lose weight over a 4 year period due to energy needed to breathe prior to starting this treatment.

good luck with your test results. Hopefully a good treatment solution will be found for you

Very interesting, thank you so much for sharing.  My doc said exactly same thing, 'we want to find out if there is bug down there that will further deteriorate the lungs. Your description of TB-type bug reminded me that my father was a 'carrier' of TB as we all grew up on Illinois farm in Mississippi Valley and we assumed my father's condition came from working with hogs. Interestingly enough, my mother who never smoked was diagnosed with exact same thing in her 70's after finally going to Mayo Clinic who told her 'we refer to this as Mississippi lung, its something that often occurs in people who live in/ near soil of Mississippi river valley'.  Anyway, she lived until 92 but her lungs were definitely her weak link and so the same for me and also for both my sisters.  Thanks again for sharing, this convinces me I'm taking the right steps.  Hope for continued improvement in your lungs with no reoccurence.

I have MAC avium in my lungs and MAC abscessus in my sinuses (among with MRSA). So I would love to hear how things are going for you. Right now they’re not starting he regimen you’re on, because I’m doing OK. I’m curious, were you pretty sick when they made the decision to start the treatment ? Thanks, Brenda

Thanks sparkaplenty, how did your test results go? I've had half mine back lung washes have tested negative which is great news. Just awaiting the lung tissue samples now  

Hi Brenda96406,

I am surprised they aren't treating as I was told if left untreated eats away at the lungs. But if you are doing ok I guess that's always positive! At the time I thought I was doing ok as functioned! Coughed a lot, had various winter bugs that always turned into lung infections. But having been on the treatment I can't believe how much better I am. Gained weight, more energy, rarely if ever cough, and can do so many things I had stopped doing. In last two weeks have started more aerobic exercise and can actually do it with no coughing, it's my muscles that feel it! So the drugs are heavy duty and made me feel rough, still do on tablet days a still on the treatment but overall I am so much healthier with more energy than this time 2 years ago. 

Hope we you continue to keep well!

Yes, with all I read it makes me a little nervous at times they aren’t starting NTM treatment.  I see a Pulmo and ENT at Stanford University. Sometimes I wonder if Denver Jewish could help me more with the NTM?  Are you in the US?

But I do see a lot of research and debate now on “when to treat”, because as you said the meds are rough. Currently I take an antibiotic & steroid 2x daily topically (for my sinuses) and it seems to help my lungs. I try to do low or no impact exercise & weights 5x per week, 45 minutes, along with saline nebulizer, postural drainage, and vest 4x per week.  I just had a lung CT scan, and it showed no further damage. I’ve lost about 20% function from past infections & Bronchiectasis.

That’s so great that you were able to gain weight. I’ve struggled with that, too. 

 I use a “Navage”, now instead of Neti Pot for 2x daily sinus rinse. Do you have sinus issues?

Blessings,

Brenda

My consultant has just starting questioning non tuberculous mycobacterium... they’re doing a bronchoscopy to try and rule it in or out... I was just wondering what your main symptoms were before diagnosis? 

Thank you 

Hi J33241

my symptoms were basically various lung infections and lots of coughing and coughing up. A new consultant didn't like the pattern, suggested the bronch and he was right there was this bug in the lung that if left untreated would have eventually eaten away my lungs. I've been on the drug treatment since sept 16 and this month have heard that the repeat bronch shows the bug has gone, however I need to stay on the drugs for another year to make sure it is not hiding in places the bronch can't reach. Today I've had a test result back suggesting my liver may be reacting to the drugs so now more tests. 

I would recommend to anyone to get the tests and if the bug is there to take the drugs as I am so much better than I was. I can do two cardio workouts a week now, rarely cough and never cough anything up. It's been amazing. 

I hope you get on OK.

take care

Thank you for your response - much appreciated. Sorry you’ve had such a difficult time and the apparent solution to one problem is causing you other problems. It often feels like a vicious circle doesn’t it?

Was this a diagnosis you got straight away? I only ask because I’ve recently been diagnosed with bronchiectasis but now they’re unsure whether that’s actually what’s going on. Ive had a little read and the only real symptoms I fit with are recurrent infections and constant malaise and unable to do general day to day tasks as I used to... none of the night sweats, sudden weight loss etc. I’ve had ten infections in the past year and am getting pretty desperate for an answer! 

Thank you again for responding 😊

I've recently wondered if I really have bronchiectasis given my response to the treatment when MAC diagnosed and how well I feel again! I think they are being sensible about the test in your case. MAC Can be treated bronchiectasis can't. I lost weight over a 2 year period but I think that was because of all,the infections and my lungs using up all my energy despite me eating more and more and exercising less. I didn't get the other symptoms either. The bronch results came through about 6-8 weeks as it takes time for them to do the tests. 

My personal view is its better for them to do the investigations -  especially if they are not sure what is really going on, its not a pleasant procedure but it's over quickly. 

Hope you don't have too long a wait to find out.

How encouraging to hear your results from scope and treatment! How wonderful!

May I ask what is your age, and where is your doctor located? Sorry if you have to repeat yourself.