NTM lung disease

Just diagnosed. Seeking to chat with others who have same illness.

[peege]

Hi, welcome to the forum, NTM is not a lung disease I've heard of. Perhaps it's under a different name here in the uk. Hopefully others will be along soon with their experiences. Best wishes Peege

[Jack70]

hi yes I have NTM . Been diagnosed 2years now .

Ask anything you like.

[Hidden in reply to Jack70]

Hi. Are you taking the 3 big anti biotics for treatment and if so, what side effects have you had and what are you doing to cope.

[Pachira]

I too was recently diagnosed with Asthma, Bronchiectasis and Mac. I read somewhere there was 200 varieties of Mac. I think mine is MAI. Seems to be slow growing but I have cavities so that’s not good. I nebulize with abuterol to open the airways then with 7% saline. It thins the mucus so makes airway clearance easier. If they send you to an infectious disease specialist it seems they want to put you on the big 3 antibiotics. I’ve decided against that as I have stage 4 breast cancer which is currently under control but it’s hard to know for how long. I’m in Olympia Wa so not too far from your border. I think the experts on NTM are the National Jewish Center. I’ve watched various podcasts that are very interesting. There was one on nutrition that i felt was very informative. Chris

[Izb1 in reply to Pachira]

Sorry to hear you have breast cancer Pachira but pleased for you that it is under control, just wanted to wish you well x

[Pachira in reply to Izb1]

Thank you! It’s been up and down but at the moment it’s good!

[Patk1 in reply to Pachira]

All the best Pachira.youve a lot to deal with.i find hypertonic saline 7% ve9ry effective too x

[Aljm in reply to Pachira]

Hi Chris, could you share more detail on the podcasts especially in nutrition that you mentioned? Could you share a link or details of where to find them. Sounds very useful. All the best to you.

[Pachira in reply to Aljm]

I’ve looked and looked for the nutritional one but just can’t remember how I stumbled across it. The big takeaway for me was her explanation of how the immune system used our fat and for that reason it wasn’t good to be on the thin side which I was. I have made an effort to increase my weight and I do feel better for it. That might be the short version I did watch a series called NTMtalk.com which had many subjects and was informative and then if you go to You tube and search for the NTM lecture series for patients and families that too has good information. Next time I find a good one I’m going to write down the link. That was an ah hah moment. I belong to the Mayo Clinic site and also joined Lung Matters on FB. Good luck and keep searching Chris

[Aljm in reply to Pachira]

Thank you.

[Pachira in reply to Aljm]

youtu.be/KrWxVh7cqLc(Not working as expected?)

[teddyd]

Welcome to the forum

[Izb1]

Sorry glamour have never heard of this, hope some people on here can help x

[VirginOil]

what is NTM disease, I haven’t heard of it.

[Elpojohn]

What are the treatments for nontuberculous mycobacteria (NTM) lung disease?

The decision to start treatment for NTM is influenced by the following:

The severity of NTM-pulmonary disease

Risk of progressive NTM-pulmonary disease

Presence of comorbidity and the goals of treatment

Treatment of NTM pulmonary disease typically requires a combination of antibiotic therapies depending on the severity of symptoms. A usual regimen consists of between three and five different antibiotics. Individuals with mild to moderate disease typically can be treated with an intermittent regimen of antibiotics daily or three times per week. Severe NTM disease may require daily antibiotic therapy. Moreover, some individuals may need injectable intravenous (IV) medication. If injectable medication is not practical or is contraindicated due to an underlying medical condition or allergy, nebulized medication may be used instead.

Most importantly, monotherapy with a single antibiotic or dual therapy with two antibiotics alone is not used for the treatment of mycobacterial pulmonary disease. The ultimate goal of treatment is a microbiological goal of treating NTM to convert sputum cultures or biopsy-proven cultures from positive to negative.

[Patk1]

Welcome to the forum glamor x

[watergazer]

Hi and welcome. X

[Alberta56]

Welcome. It looks like you've had some knowledgeable answers.👍🏼👍🏼

[Hidden in reply to Alberta56]

Thank you. I am so glad to hear from everybody. I don't feel so alone on this journey now and look forward to exchanging info as I move forward. Hearing that there are so many who must be suffering even more than myself but still have found a way to keep going is inspirational to me. These are my two days off which I use to recover and relax from the week of drugs and their side effects.

[Hidden in reply to Alberta56]

Hi Do you have NTM and what treatment, if any, are you taking? Also, if you are on treatment program how are you coping with side effects if any ?

[Alberta56 in reply to Hidden]

I've got bronchiectasis, not NTM. Bronch is quite enough. Keep in touch. We would like to know how you get on.

[Hidden in reply to Alberta56]

Thank you for your reply. Glad you do not have both as I do. I want to get cleared of the NTM so I only have the bronchiectasis to deal with. As you said, that is bad enough. I wish you well.

[Alberta56]

That is the nice thing about this forum. Everyone is so friendly and ready to pass on what they know. I've found out more about my own condition, bronchiectasis, here than anywhere else. We also have a good laugh from time to time not to mention photos, poems and paintings to entertain u Good to have you with us.

[Eccles44]

I don't have NTM but have been looking into it. I've found a knowledgeable FB support group with so much information and support. Much of the information comes from National Jewish Health which is apparently a centre of excellence on the subject. I hope it's ok to share here and that it helpsfacebook.com/groups/7862321...