1. < MAC & Bronchiectasis
Mentor

How is everybody doing?

Posted by Terri Martin, Volunteer Mentor @windwalker, Aug 5, 2017

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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 19, 2017
In reply to @unicorn "terri how did you get rid of everything? Did you take the big 3 for 2..." + (show)
@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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@unicorn Christa, here is another thing you can copy and print to take to your doctor.:
In Dec. 2013, I was diagnosed with psuedomonas infection. (the MAC was minimal @ 031.9) was put on bi-monthly cycles of 10 days of 2x daily 500 mg of Cipro, then on the other months 10 day run of 2x daily 500 mg doxycycline. July 2014 one colony of MAC found, just stayed on the alternating Cipro & doxycycline. Nov 2015 clear of all infection. GOT REALLY SICK June 2016 test positive for 6 colonies of MAC was put on 28 day bi-monthly 2x daily tobramycin and 10 day 2x cipro on the off toby months. All coughing ceased by end of 1st month on toby. By Nov 2016, I tested neg for MAC but pos for 1 colony of exophiala (an uncommon black fungus). I was told I had a pseudomonas infection from June 2016 culture, but do not have a record of that, that is why I was put on the tobramycin. I do not know how long my docs can keep all of this crap at bay, all I know is every since I went on the toby, I have not coughed. Believe me, I coughed my head off for years!! This form of treatment of alternating meds is called 'supression'.

NOTE: several people on this forum have asked their doctors about the way I am being treated and their doctors did not like managing this disease with suppression method. Something to bear in mind is that I have super low lung function, and severe stage COPD. I am a transplant candid on the 'deferred' list. My current FEV1 is 35-49% MVV severely reduced, Diffusing capacity is: mildly reduced

I do not mind if anybody wants to copy these stats to compare to your situation with your doctors. T. M. Martin

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 19, 2017
In reply to @unicorn "terri how did you get rid of everything? Did you take the big 3 for 2..." + (show)
@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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@unicorn Christa, you poor thing! I am so sorry that you were dealing with such horrible side effects. I totally 'get it' that you wished for a "death pill". I have been in those shoes. I have not read all of my e-mails on this forum yet, did you ever post what date you are going to Boston Medical? Sending healing energy your way, hugs, Terri M.

REPLY
pfists | @pfists | Aug 19, 2017
In reply to @pfists "I'm having a little trouble navigating the board here. I wrote a long update but it..." + (show)
@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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@boomerexpert

Yes suseptability testing was done awhile back at my clinic here but the Mayo dr wants a newer test done. I went to mayo for second opinion and ideas on what meds to use because my ID dr here said she would go by the mayo Dr's recommendations.
He said treating Mac was easy compared to the abscess he said every Dr would probably have a different approach.
Of coarse going by what meds it it's suseptible to.
But he stated could lose some of these meds if it become resistant to them too.
There wasnt many on my panel it was suseptable to.
He would wants to start with two Iv's for 6 weeks then 3 oral med 2-3 years.
He didn't seem in a huge rush because of all the drawbacks.
I see my pulminologis here in Mpls next week and will see what he says.
I'm working with an infectious disease Dr here also.
Shari P

REPLY
pfists | @pfists | Aug 19, 2017
In reply to @pfists "I'm having a little trouble navigating the board here. I wrote a long update but it..." + (show)
@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/

Jump to this post

Not that the Mayo Dr said treating Mac was easy... but the choice in medications was pretty easy compared to abcessus variety.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 19, 2017
In reply to @pfists "I'm having a little trouble navigating the board here. I wrote a long update but it..." + (show)
@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/

Jump to this post

@pfists, Hi Shari, You are right, m. abscessus is a bad one. I am so sorry, that is not the news we were hoping for. I believe they are doing a pilot study using Atorvastatin for treatment. There is also 'Open Label' Clofazimine. (this one is supposed to be a good one) Novartis Compassion can get clofazimine at no cost if you choose that one. Your dr will need to fill out a form and send it to the FDA. Linezolid is good, but tough to tolerate. And Merk has one called Tedizolid. National Jewish Health uses Bedaquiline, it is supposed to be very effective, it is expensive, but they have a way of getting insurance to pay for it. Also heard they can do surgery if it is localized. I will read about the nitric oxide and learn more about that. Please do not give up hope, learn all that you can, and pray that the new drugs will be released soon. Big Hug Shari,

REPLY
boomerexpert | @boomerexpert | Aug 19, 2017
In reply to @pfists "I'm having a little trouble navigating the board here. I wrote a long update but it..." + (show)
@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/

Jump to this post

Good to know...you have this in hand!

REPLY
suzylulu | @suzylulu | Aug 19, 2017
In reply to @suzylulu "Teri, sorry you are having trouble. I am trying to find the thread that said a..." + (show)
@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.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 19, 2017
In reply to @unicorn "terri how did you get rid of everything? Did you take the big 3 for 2..." + (show)
@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

Jump to this post

@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.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 21, 2017
In reply to @pfists "I'm having a little trouble navigating the board here. I wrote a long update but it..." + (show)
@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/

Jump to this post

@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

REPLY
pfists | @pfists | Aug 21, 2017
In reply to @pfists "I'm having a little trouble navigating the board here. I wrote a long update but it..." + (show)
@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/

Jump to this post

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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