How is everybody doing?

Hello All! The forum has gone quite. Haven’t heard from some of you in awhile. I am hoping some of you will check in. As for me, I just got ALL of my sputem lab reports going back to 2013 as I had requested. My very last test from June came back negative for everything. Yay!!!! I still battle fatigue and shortness of breath though. There were some organisms picked up in the past that I had not recognized, so I am going to Google them. Look forward to hearing from everyone! -Terri M.

@pfists

I’m having a little trouble navigating the board here.
I wrote a long update but it isn’t showing.
I a nutshell I went to the Mayo Wednesday
I’m diagnosed with myco abcessus the bad strain.
Still not sure what to do their told me after 2-3 years of antibiotics it may come back when more resistant then they may have less antibiotic to work with. My last ct was a bit better and I’m feeling a bit better so hesitant to start.
Saw this article in brochiectasisnewstoday.com
If it doesn’t open look out up under

Brochiectasisnewstoday.com
Nitric acid study
It it’s suppose to kill mycobacteria
A study it’s being done now to be competed in December.
It only takes to 5 weeks to be effective
Let s hope for new meds for this disease
This sounds promising for a non toxic solution.

https://bronchiectasisnewstoday.com/2017/08/15/first-patient-dosed-with-nitric-oxide-in-phase-2-trial-for-serious-respiratory-infection/

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Good to know…you have this in hand!

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@suzylulu

Teri, sorry you are having trouble. I am trying to find the thread that said a mayo doctor prescribed different antibodies to treat Mac instead of big 3. I have been on big 3 twice but was very ill both times. I recall the doctor told her that the big 3 were something of a go to treatment.. Would you let me know any alternative drug therapies you have heard about or read about. Thanks so much and I hope everything improves for you.

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I sure will Teri.. Hope you are having a good week.

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@unicorn

terri how did you get rid of everything? Did you take the big 3 for 2 years, or do other things. I cant tolerate the pills anymore so just doing aeribica and exercise. Honestly, I know I am getting slowly worse. Kind of scared of choking because sometimes blood comes up and quite frankly would rather go another way (like Katherine) than choke to death. Please post others that have bloody sputum or Hemoptysis. Hearing how others cope with this maks me more comfortable. xo Christa

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@pfists I read what the researcher posted, which was not a long article. It sounds like a wonderful option if it does all that it claims. I will look into more info, if there is any to be found.

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@pfists

I’m having a little trouble navigating the board here.
I wrote a long update but it isn’t showing.
I a nutshell I went to the Mayo Wednesday
I’m diagnosed with myco abcessus the bad strain.
Still not sure what to do their told me after 2-3 years of antibiotics it may come back when more resistant then they may have less antibiotic to work with. My last ct was a bit better and I’m feeling a bit better so hesitant to start.
Saw this article in brochiectasisnewstoday.com
If it doesn’t open look out up under

Brochiectasisnewstoday.com
Nitric acid study
It it’s suppose to kill mycobacteria
A study it’s being done now to be competed in December.
It only takes to 5 weeks to be effective
Let s hope for new meds for this disease
This sounds promising for a non toxic solution.

https://bronchiectasisnewstoday.com/2017/08/15/first-patient-dosed-with-nitric-oxide-in-phase-2-trial-for-serious-respiratory-infection/

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@pfists, Shari I was reading articles this morning about new drugs that will be hitting the fast track for release next year. Seems that many are going to the inhalables, which makes more sense to deliver the meds straight to the infected area and not involve your entire system. You can ask your dr if there are any off- label inhalables available. Also, AIT Theropeudics is submitting all documentation of final trials in April of 2018 for the Nitric Oxide treatment. They did the procedure on a human and went well very well. So far, successful in getting rid of the bacterium and NO forming resistance! Lets keep our fingers crossed on this one. Always have hope. – Hugs Terri

Liked by pfists, Carolyn

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@pfists

I’m having a little trouble navigating the board here.
I wrote a long update but it isn’t showing.
I a nutshell I went to the Mayo Wednesday
I’m diagnosed with myco abcessus the bad strain.
Still not sure what to do their told me after 2-3 years of antibiotics it may come back when more resistant then they may have less antibiotic to work with. My last ct was a bit better and I’m feeling a bit better so hesitant to start.
Saw this article in brochiectasisnewstoday.com
If it doesn’t open look out up under

Brochiectasisnewstoday.com
Nitric acid study
It it’s suppose to kill mycobacteria
A study it’s being done now to be competed in December.
It only takes to 5 weeks to be effective
Let s hope for new meds for this disease
This sounds promising for a non toxic solution.

https://bronchiectasisnewstoday.com/2017/08/15/first-patient-dosed-with-nitric-oxide-in-phase-2-trial-for-serious-respiratory-infection/

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Great news!
Do you have any names of the inhalables?
I know amikasin is one.
I think i read where they have a new way of delivery on the amikasin nebs.
I really hope to hold out until the nitric oxide becomes available also.
I go to the Brochectasis News Today website for information do you know of other websites?
Want to bring all my questions to my Pulminologist next Monday.
Hugs

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@pfists Hi Shari. Yes, the new ones that will hopefully be approved next year is: Lipoquin/Linhalig it is an inhalable form of ciprofloxacin. The old name for it was Pulmaquin. The drug, Clofazamine is at the open label stage. and is supposed to be good for m. abscessus treatment. From what I have heard at the D.C. convention, the inhaled amikacin holds great promise and that is what they are putting you on.
Other good websites are videos of past conventions by NJH (National Jewish Health). Those are very informative.

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@boomerexpert

Inspiring story about a very young man (18) who’s doing the almost impossible with bronchiectasis: https://bronchiectasisnewstoday.com/2017/08/07/young-musician-bronchiectasis-becomes-britains-best-french-horn-player/

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@boomerexpert Hi Terri! Just looked at this link about the horn player. I’ll bet that playing that horn has built up strength in his lungs. Probably akin to playing a harmonica as exercise for us. That reminds me, I need to look for my harmonica and harmonica book. Wishing you a fantastic day!

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I am having low grade fevers with flu symptoms every day and feel sick. My MAC seems to be inactive. Been through Bactrin and Cipro so the bacteria should be gone. Could be inflammation? My doctors seem unsure what to do. Has anyone else had this? robynmar

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@robynmar

I am having low grade fevers with flu symptoms every day and feel sick. My MAC seems to be inactive. Been through Bactrin and Cipro so the bacteria should be gone. Could be inflammation? My doctors seem unsure what to do. Has anyone else had this? robynmar

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@robynmar Good morning Robyn. I am sorry to hear that you are still feeling bad. Have you contacted your physician to let them know that you are still not improving?

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@windwalker

Jan, we are not saying you do not have asthma. Often times asthma and COPD go hand-in-hand with bronchiecstasis. It is called ‘co-morbid disease’. I have all three and then some! -Terri

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Hi Terry,

Sorry, I had to stay quiet for a week.
I think that there was a mixture of bad luck and later on, stupidity on my part when I went for the Bronchoscopy.
I was very nervous and told them that I have a very strong gagging reflex but nevertheless I wasn’t sedated enough and was conscious for way too long. I could hear myself panting and making and almost growling sound, I sounded like a dog in distress ,finally, lights out. I will never forget that experience.

When I went home I felt very tired so I told my friend to go and enjoy the day after thanking her.
Later on I got up and ate an omelette and shortly after that my system when into some kind of shock like state. I was so cold mi teeth were shaking. The end of my fingers tip were wrinkled like I had spent a long time in cold water, I was so weak ,had a hard time getting a hot water bottle and hot tea. I put 3 blankets on top of me and stayed there shaking for a few hours,
I did not wasn’t to call 911 but I unlocked the front door and carried a telephone with me for a while. Later on I started to get very hot so I might have had a fever, did not have the strength to look for a thermometer.
Luckily with rest ,the symptoms settled down hours later.
It was my fault ,the instructions did say to keep someone for 24 hours but I read that later when it was over.

I felt very weak for quite a few days and did spit out blood up to yesterday which I know is normal. I think that my nervous system was more affected as I suffer from anxiety and I imagine that it didn’t help things.
I seem to be OK today, thank God.
I will not have my results until September 11th as my specialist is on vacation, the test was done by someone else who mentioned that they would check my larynx as I have lost my voice since 8 months now.

When I go for my results appointment, a nurse friend of mine will come along to help ask questions. Thank God for good friends!

Thank you Terry for asking, hopefully I’m won’t be scarring anymore away from this test , I’m sure that there are easier experiences
than mine .

Andree

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Hi everyone thought I would check in again after my numerouse Dr appointments and give you an update. I went to get a second opinion at the Mayo Clinic at Rochester Dr Moua then saw my pulminologist here and also saw my infectious disease Dr. here. They are all on the same page that they would not start treatment yet for mycobacterium abcessus. My most current Ct scan was better that the last one that I had a couple months prior. They said my Ct scan looks pretty good.
Saw my pulminologist here and he wants to do a bronchialscope next week on me. He said that would help clean out the airways of trapped mucus and mycobacterium and that he has had patients do well getting a few scopes a year. Not that scopes are a cure but could be a big benefit to help your own lungs clear out bacteria. I have had scopes in the past not for mycobacterium and noticed a big improvement in breathing afterwards. I have had bad asthma since childhood so that is what started the spiral downwards. Saw my pulminologist the first time about 9 years ago with pneumonia that didn’t respond to antibiotic. Was diagnosed then with bronchectasis.
I do all the usual things saline nebs aerobeka and also The Vest airway clearance twice a day for half hour each time.
Do some of you have the special shower filter for showering and how much do they run?
I’m not to big on baths knees aren’t the best.
Thanks!!!
Shari

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@pfists

Hi everyone thought I would check in again after my numerouse Dr appointments and give you an update. I went to get a second opinion at the Mayo Clinic at Rochester Dr Moua then saw my pulminologist here and also saw my infectious disease Dr. here. They are all on the same page that they would not start treatment yet for mycobacterium abcessus. My most current Ct scan was better that the last one that I had a couple months prior. They said my Ct scan looks pretty good.
Saw my pulminologist here and he wants to do a bronchialscope next week on me. He said that would help clean out the airways of trapped mucus and mycobacterium and that he has had patients do well getting a few scopes a year. Not that scopes are a cure but could be a big benefit to help your own lungs clear out bacteria. I have had scopes in the past not for mycobacterium and noticed a big improvement in breathing afterwards. I have had bad asthma since childhood so that is what started the spiral downwards. Saw my pulminologist the first time about 9 years ago with pneumonia that didn’t respond to antibiotic. Was diagnosed then with bronchectasis.
I do all the usual things saline nebs aerobeka and also The Vest airway clearance twice a day for half hour each time.
Do some of you have the special shower filter for showering and how much do they run?
I’m not to big on baths knees aren’t the best.
Thanks!!!
Shari

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Hi, pfists —- I’m responding to your note because I too have Dr. Moua in Rochester.  I would like your email address if you would care to give it out……. I thought I might like to visit with you about him and how you felt about your session with him.

Liked by pfists

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@pfists

Hi everyone thought I would check in again after my numerouse Dr appointments and give you an update. I went to get a second opinion at the Mayo Clinic at Rochester Dr Moua then saw my pulminologist here and also saw my infectious disease Dr. here. They are all on the same page that they would not start treatment yet for mycobacterium abcessus. My most current Ct scan was better that the last one that I had a couple months prior. They said my Ct scan looks pretty good.
Saw my pulminologist here and he wants to do a bronchialscope next week on me. He said that would help clean out the airways of trapped mucus and mycobacterium and that he has had patients do well getting a few scopes a year. Not that scopes are a cure but could be a big benefit to help your own lungs clear out bacteria. I have had scopes in the past not for mycobacterium and noticed a big improvement in breathing afterwards. I have had bad asthma since childhood so that is what started the spiral downwards. Saw my pulminologist the first time about 9 years ago with pneumonia that didn’t respond to antibiotic. Was diagnosed then with bronchectasis.
I do all the usual things saline nebs aerobeka and also The Vest airway clearance twice a day for half hour each time.
Do some of you have the special shower filter for showering and how much do they run?
I’m not to big on baths knees aren’t the best.
Thanks!!!
Shari

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@auntnanny Jan, we are not supposed to post our phone numbers on this thread. It is not safe to do that. Please private message the person that you want to have it by clicking on there name. Thanks!

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@pfists

Hi everyone thought I would check in again after my numerouse Dr appointments and give you an update. I went to get a second opinion at the Mayo Clinic at Rochester Dr Moua then saw my pulminologist here and also saw my infectious disease Dr. here. They are all on the same page that they would not start treatment yet for mycobacterium abcessus. My most current Ct scan was better that the last one that I had a couple months prior. They said my Ct scan looks pretty good.
Saw my pulminologist here and he wants to do a bronchialscope next week on me. He said that would help clean out the airways of trapped mucus and mycobacterium and that he has had patients do well getting a few scopes a year. Not that scopes are a cure but could be a big benefit to help your own lungs clear out bacteria. I have had scopes in the past not for mycobacterium and noticed a big improvement in breathing afterwards. I have had bad asthma since childhood so that is what started the spiral downwards. Saw my pulminologist the first time about 9 years ago with pneumonia that didn’t respond to antibiotic. Was diagnosed then with bronchectasis.
I do all the usual things saline nebs aerobeka and also The Vest airway clearance twice a day for half hour each time.
Do some of you have the special shower filter for showering and how much do they run?
I’m not to big on baths knees aren’t the best.
Thanks!!!
Shari

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@ auntnanny Yes Jan I will call you… I wrote down your number so you can delete your number from this posting.
Thanks

Shari

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@pfists

Hi everyone thought I would check in again after my numerouse Dr appointments and give you an update. I went to get a second opinion at the Mayo Clinic at Rochester Dr Moua then saw my pulminologist here and also saw my infectious disease Dr. here. They are all on the same page that they would not start treatment yet for mycobacterium abcessus. My most current Ct scan was better that the last one that I had a couple months prior. They said my Ct scan looks pretty good.
Saw my pulminologist here and he wants to do a bronchialscope next week on me. He said that would help clean out the airways of trapped mucus and mycobacterium and that he has had patients do well getting a few scopes a year. Not that scopes are a cure but could be a big benefit to help your own lungs clear out bacteria. I have had scopes in the past not for mycobacterium and noticed a big improvement in breathing afterwards. I have had bad asthma since childhood so that is what started the spiral downwards. Saw my pulminologist the first time about 9 years ago with pneumonia that didn’t respond to antibiotic. Was diagnosed then with bronchectasis.
I do all the usual things saline nebs aerobeka and also The Vest airway clearance twice a day for half hour each time.
Do some of you have the special shower filter for showering and how much do they run?
I’m not to big on baths knees aren’t the best.
Thanks!!!
Shari

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You are welcome to Private Message me if that would be easier.  I’m lsorry I didn’t give you the email address earlier.  

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