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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/
Replies to "I'm having a little trouble navigating the board here. I wrote a long update but it..."
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
Not that the Mayo Dr said treating Mac was easy... but the choice in medications was pretty easy compared to abcessus variety.
@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,
Good to know...you have this in hand!
@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
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 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