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.

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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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@suzylulu Hi Suzy. Building strength and weight is a good goal. If you cannot put the weight back on then be on the lookout for infection being active. I went for 142 lbs to 116 lbs in a year’s time. Now that I am clear of infection, I have gained 14 lbs back in 9 months time. Honestly, I do not want to gain any more though. But, you know know, it is good to have fighting weight. I hope you will let us know how your dr visit went.

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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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@unicorn Christa, I will pm my phone number to you in case you’d like to chat at length about this. There are three Terri’s on this site, so I am not sure which one you are asking this of. Where are you going for treatment? Is it a private practice? I am worried about you not being on some kind of antibiotic. The bleeding is normal if it is not too often & not too much blood, but it can indicate an active infection. I have posted in the past to you and everybody what my antibiotic regimen is. You are way too young to throw in the towel!!!! You just haven’t found what works for you yet. This disease we have is aweful, and it is serious, but manageable. I encourage everyone that has it – to keep a notebook dedicated to this. When you see helpful info on this site, it would behoove you to write it down to reference things. I have a composition journal that I have sectioned by subject. Now, back to your question, I was diagnosed with MAC in 2005, I have never been on the ‘big three’ antibiotics. That was my choice because two out of three very good drs said they wouldn’t if they were me. To this day, I do not know for sure if that was a good decision. I was put on azithromycin for several weeks and it knocked the MAC down back in ’05. I became sick over the years that followed, coughed non-stop gobs of stuff would come up, I’d go on antibiotics when it would turn green or had fever. I was very short of breath and pretty sure I was going to die. From 2005-2013, not ONE single physician had a sputem test ordered up for me. Now that I know better, I find that unconscionable on my doctor’s part. I do not know what may have been colonizing in my lungs during those years, but it did lots of lung tissue destruction. It wasn’t until I went to the Mayo in 2013 that they found pseudomonas actively infecting me. No telling how long I had that! That is why I am not a fan of private practice medicine when it comes to serious diseases, especially when not much is known about it. I have been on alternating monthly antibiotics, one antibiotic per month since 2013. My quality of life has drastically improved. No more coughing! At the moment, no active infections. It is not all rosey, I have terrible fatigue. Big Hug Christa, call me!~

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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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Terri, Thank you! I actually cut and pasted and mailed this letter to myself to show to my doctor. I want him to see that there are other ways to handle this disease rather than killing off the body with the big 3. I think you made the right decision because even if you got rid of disease with big 3, it seems to always come back, so what is the point? Meanwhile you are super svelte and fit into perfect skinny jeans, but feel terrible.and don’t go anywhere, Not seeing a private practive doc. Flying out to Boston to Massachusetts General, Dr. O Donnel, I love him, supposed to be one of the best docs in country for MAC. This is only my second visit so I will get a lot of info, and show him your letter. It’s the infectious disease specialist there, Hurtado, that worries me because she aggressively wants me on meds, not doing it, no way to live…..For instance, one day, when on the meds, I was volunteering at children’s library and I got cramps and a bowel attack. Trapped in bathroom I was passing out, sitting on floor, trying to just walk to my car!! I made it was was seeing spots and really don’t know how I got home, only mile away. Cramps were doubling me over and I stayed in bathroom about another hour and then just passed out in bed. That was my life on pills and probiotics did almost nothing. I never knew when it would occur. I was so discouraged, I asked my doc for a ‘Death pill’ He kind of laughed because I have a lot of good lung tissue left, but he has never coughed up blood!!.. So here I am perfect blood pressure, low heart rate, 96 on the oxygen, but just waiting for another attack. The first time the blood came up I was sitting on sidewalk waiting for paramedics, with great globs of blood gurgling up and out, It was insane, but I remember they put me on antibiotics in hospital for TB, and maybe that helped! I know I am a big baby, but if it happened to them they would understand, just like a man trying to understand the pain of childbirth, they just cannot. Thank you for your kind words, Maybe it would help to know there was someone to call when attacks happen. Love you Christa xoxoxo

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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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Unicorn aka Christa….like our mentor Terri aka Windwalker, I was Not put on antibiotics at NJH for MAC grown from washing from local bronchoscopy July 2016 ( done after my 2 year search to explain cough of 2-5 hours and mucus…daily. Dr Huitt at NJH said it was due to silent aspiration from my GERD.
Why I am writing is directed at your coughing up blood from lungs.
Do you take even one baby aspirin a day?
Or an NSAID…non steroidal anti inflammatory drug…such as Motrin…..aleve…Celebrex…the list goes on.
When I was a home care nurse, I had a client who had a tiny wound on the front of little toe…I would go daily to put new bandage on…all of a sudden the bandage would be soaked in blood. The only thing different was that man had taken an aspirin a few days before. It took about 10 days after ingesting one aspirin for the toe to stop oozing blood…so I am wondering if there is a correlation to drugs of those categories and pulmonary bleeding!
Terri aka tdrell

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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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@unicorn Christa, I am home now. You can call me now or any time hereafter. – Special Hug, Terri M.

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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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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

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 the next step if not yet done, and if not this must be non-negotiable, is to determine which strain and antibiotic best for treating it…this is standard practice for docs who know what they’re doing

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