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.

@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!~

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

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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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@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

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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, 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.

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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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@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

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

REPLY
@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, 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,

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