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rotation of Bactrim & doxycycline. Gut is torn up. Help!

Posted by juliawb @juliawb, Jul 8 1:27pm

Being treated w/ Bactrim and doxycycline for bronchiectasis. Two weeks on, two weeks off and switch to other drug - same routine. I’ve been doing this for nearly a year. My gut takes a week to ten days to improve and then it starts over. I need specific suggestions of a good gut routine with this regime.
Thanks,
Julia

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wolfplanetzero | @wolfplanetzero | Jul 9 10:09am
In reply to @sueinmn "Let's clarify please, when you say MAI do you mean Mycobacteria Avium Intracellulare? If so, the..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

Let's clarify please, when you say MAI do you mean Mycobacteria Avium Intracellulare? If so, the is part of the infective group known as MAC (Mycobacteria Avium Complex) or NTM (Nontubercular Mycobacteria.)
Are your culture still positive after 10 months on your drug regimen? If so, have the sputum samples been submitted for drug sensitivity testing to be sure you are using the correct antibiotics to actually clear the infection?
What sort of improvement are you seeing? Improved CT, less cough, clean culture, etc.

Please excuse my curiosity, but in seven years on Mayo Connect and NTM-ir, I have never seen this particular combination of meds used.

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Me neither. Bactrim and doxycycline are not on the usual lists of first line or second line antibiotics for MAI or MAC. They are sometimes prescribed for other NTMs like m. fortuitum. What matters most of course is if they are helping. Best of luck to all.

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sweethighland | @sweethighland | Jul 9 11:57am
In reply to @juliawb "Yes, that is correct. One twice a day is dosing for MAI. Hope all goes well..." + (show)
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Yes, that is correct.
One twice a day is dosing for MAI.
Hope all goes well for you.

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Thank you. I will see my doctor end of the month and will ask him.

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Sue, Volunteer Mentor | @sueinmn | Jul 9 3:59pm
In reply to @juliawb "Goodness, I feel like I am doing all of this wrong. I have had improved Health;..." + (show)
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Goodness, I feel like I am doing all of this wrong. I have had improved Health; improvement has been seen on CT scan. I will see my pulmonologist in three weeks and I imagine sputum cultures will be taken. So, what is the gold standard treatment in your opinion?

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First, let's say you are doing nothing wrong in following the advice of your doctor. But, MAC/MAI/NTM is a rare infection, and not that many doctors - even experienced pulmonologists, have treated it often.

My original pulmonologist 7 years ago had treated over 2 dozen cases in the course of his career. That sounded like plenty to me, so I relied on him. Turned out, he had not kept really up to date on treatment options, took offense when I started asking questions, and fired me when I consulted an ID doc.

My current pulmonologist (in the same clinical group but another location) has treated MAC & Bronchiectasis patients in the hundreds, participates in clinical studies, research and panels with Mayo and National Jewish Health.

The "gold standard" in treatment is for the pulmonologist to order sensitivity testing of the infection by the lab after the culture is grown. A selection of antibiotics are applied to little plates with the infection growing in media on them. Effective antibiotics kill the bacteria and the lab reports the results back to the doctor. Meds are prescribed accordingly. Do you know if your doctor is doing this? If so, it takes 8 weeks or so for the results to come back after you submit the specimen.

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Profile picture for irene5 Irene Estes
irene5 Irene Estes | @irene5 | Jul 9 4:33pm

Julia do you nebulize? That may help so you don’t have to take so many days of antibiotics. The trick is to get the gunk out of there. Best. Irene5

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juliawb | @juliawb | Jul 9 4:39pm
In reply to @sueinmn "First, let's say you are doing nothing wrong in following the advice of your doctor. But,..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

First, let's say you are doing nothing wrong in following the advice of your doctor. But, MAC/MAI/NTM is a rare infection, and not that many doctors - even experienced pulmonologists, have treated it often.

My original pulmonologist 7 years ago had treated over 2 dozen cases in the course of his career. That sounded like plenty to me, so I relied on him. Turned out, he had not kept really up to date on treatment options, took offense when I started asking questions, and fired me when I consulted an ID doc.

My current pulmonologist (in the same clinical group but another location) has treated MAC & Bronchiectasis patients in the hundreds, participates in clinical studies, research and panels with Mayo and National Jewish Health.

The "gold standard" in treatment is for the pulmonologist to order sensitivity testing of the infection by the lab after the culture is grown. A selection of antibiotics are applied to little plates with the infection growing in media on them. Effective antibiotics kill the bacteria and the lab reports the results back to the doctor. Meds are prescribed accordingly. Do you know if your doctor is doing this? If so, it takes 8 weeks or so for the results to come back after you submit the specimen.

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I was sent to Dr. Huang by a preeminent infectious disease MD, John Perfect - feel free to look him up. Dr. Huang one of the few MDs that treat this in the southeast. Yes, I know how rare this is. Yes, sputum has been tested for resistance. I have sent a thorough email to my doctor because I have been stunned by the authority with which you and others speak with on this page. My confidence has been shaken by this exchange and I thank you for helping me to focus my questions to my doctor.

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