Hi Serrieanne,

Kristen's response is really right on. The term "cure" is up for debate quite a bit when it comes to NTM, because no one is really sure how to define it, and whether it is really "cure"; sometimes people get positive cultures again later, and the question becomes, were they cured, or were the treatments working to keep the infection back?

However, we know of many patients who have gone through cycles of negative culture results. This is achievable, and a combination of good treatment, good airway clearance, and good hygiene and health practices help a lot. We know of patients who have lived DECADES with infections (positive cultures), for decades with positive and negative cultures on and off, and with negative cultures once treatment is complete. It depends so much on the patient and the treatment. So Kristen is right, you have every reason to be hopeful.

One of the keys, even when you achieve negative cultures, is consistent monitoring by your physician for changes, and for you to be aware of changes yourself, so when something doesn't feel right, you can go to your physician and they can run more specific tests to see if something new is going on.

Hope this helps.

Amy

Kristen, Thank you for sharing all of this valuable information. Everyone has such differing experiences, but we can always find some validity, and maybe some hope in others'. I wish you the both the very best!

Kristen, Thank you for sharing your experience and hope with us. Laura

I have been free of m. abcessus for 9 years. That may not be a cure, but it is great suppression. I was on IV antibiotics for 5 1/2 months. I wish for you a good response to your treatment

I am new to this site and have been fighting with Mycobacterium abscessus since Dec 2013. How does one get in touch with kuw on info that she is offering.

Thanks!

Hi Colinda,

I would be very happy to talk to you about my experience if that would be of help to you. Please feel free to contact me.

Kristen. aka ku

@kuw Thank you so much for sharing this with me.

Thank you for sharing your experiences. My mum was diagnosed with bronchiectasis a few years back and kept getting repeat infections. Last summer she was diagnosed with m. abcessus infection. She wasn't treated for it as it wasn't too severe. Recently she has started to cough more and has other symptoms such as lack of appetite, weight loss and night sweats. She has an appointment with her consultant soon who may suggest to start treatment. Could anyone whos already had the treatment please share their experience, ie side effects, length of treatment, how to manage iv treatment at home. I understand that this sort of infection is resistant to antibiotics and a combination will be used. On a previous appointment one of the consultants mentioned that is seems the infection is responsive to some antibiotic, so there is some hope. Im really worried and im sure my mum is too, although she wont show it. Any advise will be useful. Thanking you all.

Thanks for the link its been a real help. My mums consultant has decided not to start treatment as the repeat scan showed no change from previous 6 months, although she does have damage in her right lung. Is this normal not to start treatment? The consultant said that the treatment consisted of 3 different types of medication but doesnt always work. They are going to monitor her annually but advised to come back sooner if cough gets worse or is coughing up lots of blood.

Taz,

Hello! You are most welcome! There is a lot of great information in the booklet.

Some doctors do take the wait and see approach based on the subjective findings/ symptoms of a patient. I would suggest calling the doctor if your mom notices any changes in symptoms . Also, for her to see a pulmonologist / consulevery three months.

I was diagnosed with Mycrobacterium Abscessus 2-3 years ago. The CDC in my state did the testing. My dermatologist wanted me to go on 3 antibiotics. My Infectious Disease Doctor would not cooperate. I did some research and found by the Grace of God, I used an old antibiotic (from nature) to kill the little buggers.

If you want to know what I did, let me know..... I will gladly. tell you.

Hello C2kulik,

Welcome to the site. Yes, I am curious what treatment option you chose

Hi C2kulik,

Welcome. It’s a great site which I’m sure you’ll find very informative. A caring, thoughtful bunch of people who go out of their way to offer opinions, and helpful advice

I too am eager to find out what and how you did this. With the “from nature” antibiotic, please share.

Thanks.

Le

Le,

Thank you for your kind words- from all of us:)))

I don't know if I am cured, but I had abscesses and have not had it since February of 2007. That is very good suppression. Unfortunately, I have other bugs that have proved more difficult

I am interested in hearing more about the natural antibiotic.

https://www.bronchiectasisandntminitiative.org/NTM...has information that maybe help to with this.

I have Ntm abs essus but have not been treated yet. However my cat scan just showed several changes so treatment will  be recommended%
.  I am scared to death . Can anyone help.
Copper

I am in exactly the same situation..... I am 53yrs old ..  3 kids in high school.   Found out 1 week ago.  TERRIFIED beyond words.

@kuw

How do I get in contact?

Dear dernancourt,

I would be happy to speak with you directly if you wish. I think it is best to send me your contact information and I will be in touch. I am still Mycobacterium abscesses free. It will be 6 years now.

My best wishes to you,

kuw

You can send a private email, go to the profile section.

I was diagnosed with abscessus in 2013 by bronchoscope from a positive Cscan. I was asymptomatic, no lesions, coughing or fever. I refused treatment and opted to boost my immune system with herbs, vitamins, acupuncture, elderberry tea and exercise. I just turned 79. I have yet to develop any lung symptoms or lesions and I feel fine so far. I have not at present had any repeat scans or bronchoscopes. I can only assume my immune system is keeping me asymptomatic. I'm an RN and I do know at my age, powerful IV antibiotics could kill me before this disease does.

CHR,

Thank you for posting your story. So glad that you are doing well without the meds.

Check out this ancient,

Alaskan Native American herb, "Devil's Club". I discovered it while on an Alaskan cruise and it is said to have anti microbial properties. I use it daily as an elixir in my EmergenC drink. So far so good and no side effects. I figure as long as I stay symptom free I am ahead of the game. We all want to stay healthy and breathing. Carey

Carey,

Who makes Devils Club!?
Curious.

Thank you for sharing your positive energy with the group. Kati

Interesting, I have never heard of Alaskan Ginseng before. I can’t take regular ginseng, it elevated my blood pressure when I tried it years ago.

@dernancourt

Well, I'm cured of NTM now apparently but my journey didn't end there...

@dernancourt

Well, I'm cured of NTM now apparently but my journey didn't end there...

Hello everyone, Im new to this community and am seeking help and support how to go through this treatment. I'm so afraid cause I live alone. I have not started treatment since over a year ago when I was diagnose. How do I start where to begin, I can't afford to go treatment, no income, my husband pass away last year 2021 a week before we were supposed to discuss treatment plan, since he pass away I can barely keep up with small savings left since he was the sole earner. Sad to say im not entitled to his social security yet due time age, my husband left only some money to get me by but nothing of his life insurance or any money. Torn between a need to find a job to support myself pay bills especially mortgage. How do I do the treatment if I need to find a job. Is there possible time work while treatment? Also, will there be any complications if I get vacination for COVID given the existence of NTB Mycobacteria Absessus  and bronchiatesis ?

@Copper23 I was just diagnosed recently and a referral put in to Mayo in Rochester.  I just finished 2 weeks of cefapime for the psuedomonas I have had since 2016.  I scared as my body doesn’t seem to tolerate many medications.  

Hi, Laura, I hope you are well. If you happen to read this message, I have COPD but recently diagnosed with microbaterium abscessus and being told before I can be placed on the lung transplant list, I have to be on home IV treatment for 4 months first and after transplant to continue treatment for 6 months. Can you share if this was your treatment regimen and was it finally cured and if you have any experts that can help me with finalizing my treatment decision? Thank you again for any help you can provide.

Hi, Vinny, please if you can share any experiences that may be helpful. I have COPD but recently diagnosed with microbaterium abscessus and being told before I can be placed on the lung transplant list, I have to be on home IV treatment for 4 months first and after transplant to continue treatment for 6 months. Can you share if this was your treatment regimen and was it finally cured and if you have any experts that can help me with finalizing my treatment decision? Thank you again for any help you can provide.

Ramona,

Hello! Welcome to the community. Are you being seen at a NTM research center? If you would like to speak to a Bronchiectasis NTM patient ambassador, please call the number below: (833) 411-5864.