(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

My wife's doctor just prescribed a nebulizer and the vest for my wife. I am wondering what has been the experience of anyone in the group…Did it help you with your cough?

My wife's doctor just prescribed a nebulizer and the vest for my wife. I am wondering what has been the experience of anyone in the group…Did it help you with your cough?

What is your wife's diagnosis, does she have bronchiectasis, any infection, cough? Is she using meds other than the neb, and what is the prescribed med for the nebulizer?
It would be helpful for us to know, since our symptoms and treatments are so varied.
Sue

Sue and Spencersok, I have been using a nebulizer two times a day and it really helps in getting mucus out. Especially before going to sleep. No longer cough at nite. I have Bronchiectasis and MAC. Its my understanding that the treatment for MAC is difficult and can lead to other ailments. So am I correct in thinking that what I am doing is to get rid of mucus and infections from the lungs? So far my Dr. hasn't given me any medications for MAC but to clear the lungs with a saline solution. Hauoli

Thanks @anniepie , I did not realise that you were in the USA trial, that's great. When the big 3 do not work Arikayce does which is great. Do you remember what the Arikayce long term side effects were, maybe they should follow it up must longer
. I wish we had cures for this.
Take care Heather

Hi Heather @heathert. I do remember what a number of the serious side effects were for Arikayce that were more prevalent than when using the big 3 alone. But I'm not sure it's a good idea to repeat them here -- some people could then be too afraid to take Arikayce.
I guess it's like cancer treatment really. Some cancer chemotherapy can have dangerous side effects and risks, but it is a decision you end up making if you are trying to get rid of a bad cancer. It is the same for Arikayce.... there are some life-threatening dangers that could happen to a few people, but I have decided to take it if I can because nothing else has worked for me so far.
Anyway, the follow up study for Aricayce was only about whether it stopped the NTM or not. Unfortunately they only followed up for 3 months after finishing Arikayce treatment, They found that around 40% had their NTM "cured" for 3 months after finishing meds.
Other studies -- after any kind of treatment -- have shown that around half of all NTM cases reoccur again, usually within 12 months of apparently being "cured". So I don't think 3 months is a long enough time for a follow up study after finishing Arikayce,
Arikayce may or may not help for as many as 40% of cases if you looked at 12 months after finishing meds.

Here's what Medical Researchers and Doctors really need to do for us, but they aren't doing yet:

1. First find and treat us with inhalants of the right Glycoside Hydrolase Enzymes to safely break down Mycobacterial BIOFILMS inside our lungs. (Antibiotics like the Big 3 quite often cannot do this. They often can't get through the Biofilm right into the Mycobacteria to kill it. In fact, bacteria make these Biofilms in order to shield them from attacks by antimicrobials! It's common to need 100 or 1000 times the dose of antibiotics to kill bacteria that live in Biofilms -- that's impossible. So kill the Biofilms first, please!)

2, Then, when the Biofilm is broken down, hit our lungs with antibiotics that are known to kill PLANKTONIC forms of Mycobacteria -- e,g. Azithromycin etc. (Nearly all antibiotics are only tested on -- and often only work on -- the free-floating Planktonic forms of bacteria, but not the same bacteria living in Biofilms. Most mycobacteria in our lungs live inside the Biofilms they create. So -- without the Biofilm -- we'd probably need much shorter treatment times with the big 3. And the Big 3 drugs wouldn't cause as much damage as can happen after years of taking them).

3. And then, if we seroconvert, please find and give us periodic (inhaled?) prophylactic treatments to use long-term to help prevent Mycobacteria -- and its Biofilms -- from returning inside our lungs.

That's the program, folks.
How do we get Researchers and Doctors to look into it?

Here's what Medical Researchers and Doctors really need to do for us, but they aren't doing yet:

1. First find and treat us with inhalants of the right Glycoside Hydrolase Enzymes to safely break down Mycobacterial BIOFILMS inside our lungs. (Antibiotics like the Big 3 quite often cannot do this. They often can't get through the Biofilm right into the Mycobacteria to kill it. In fact, bacteria make these Biofilms in order to shield them from attacks by antimicrobials! It's common to need 100 or 1000 times the dose of antibiotics to kill bacteria that live in Biofilms -- that's impossible. So kill the Biofilms first, please!)

2, Then, when the Biofilm is broken down, hit our lungs with antibiotics that are known to kill PLANKTONIC forms of Mycobacteria -- e,g. Azithromycin etc. (Nearly all antibiotics are only tested on -- and often only work on -- the free-floating Planktonic forms of bacteria, but not the same bacteria living in Biofilms. Most mycobacteria in our lungs live inside the Biofilms they create. So -- without the Biofilm -- we'd probably need much shorter treatment times with the big 3. And the Big 3 drugs wouldn't cause as much damage as can happen after years of taking them).

3. And then, if we seroconvert, please find and give us periodic (inhaled?) prophylactic treatments to use long-term to help prevent Mycobacteria -- and its Biofilms -- from returning inside our lungs.

That's the program, folks.
How do we get Researchers and Doctors to look into it?

Yes, if you can clear things without the meds, you will be much happier - they are no fun. Just be vigilant for any downturn in you health - more fatigue, weight loss, no appetite, night sweats - and report promptly to your doc.
Sue