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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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@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
@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.
@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
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!
I sure will Teri.. Hope you are having a good week.
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1 Reaction@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.
@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
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2 ReactionsGreat 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.
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