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NTM Mac Past History of Pulmonary Tuberculosis

Posted by meg2024 @meg2024, Apr 12 8:19pm

have recently been diagnosed with NTM Mac and initially took Doxycycline
Now
I was recently diagnosed with NTM Mac disease.

I was initially started on Doxycycline 50mg instead of 100mg.

Symptoms eased and felt okay.Recent CT Scan unfortunately showed more Lung deterioration so was commenced on 3 Antibiotics.

Felt so unwell due to continual nausea, vomiting, diarrhoea, exhaustion and joint pains. I stopped treatment after 8 days as I couldn’t eat and was losing weight. See specialist next week so not sure what to do now?

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Mentor
Sue, Volunteer Mentor | @sueinmn | Apr 12 10:28pm

@meg2024 AR you seeing a pulmonologist next week? Temporarily stopping antibiotics to get a plan together is not such a bad idea. If you read here, you will learn about adjusting time of day, adding prebiotic and anti nausea meds to your regimen, and other tactics for tolerating the meds.
Were you prescribed 3 times weekly or every day?

REPLY
1 reply
bayarea58 | @bayarea58 | Apr 13 11:21am

Many doctors start the Big 3 separately, a week or so apart, so they can assess which drug you may be responding poorly too. The rifampin is known to cause joint pain, and seems to often be the “offender” but not always. Is your doctor an NTM specialist? The initial Doxycycline dosing suggests maybe not as NTM is not generally treated with a single antibiotic. NTM specialists are well versed at working with patients to try and find a tolerable drug regime. There are options (not a lot, but some), and as Sue points out sometimes it is about how one is taking the antibiotics, I.e. how often, time of day, with food/without, adding probiotics). Hopefully the specialist you are seeing soon is an NTM specialist. If not, you may want to consider finding an NTM specialist.

REPLY
1 reply
meg2024 | @meg2024 | Apr 16 5:35pm
In reply to @bayarea58 "Many doctors start the Big 3 separately, a week or so apart, so they can assess..." + (show)
@bayarea58

Many doctors start the Big 3 separately, a week or so apart, so they can assess which drug you may be responding poorly too. The rifampin is known to cause joint pain, and seems to often be the “offender” but not always. Is your doctor an NTM specialist? The initial Doxycycline dosing suggests maybe not as NTM is not generally treated with a single antibiotic. NTM specialists are well versed at working with patients to try and find a tolerable drug regime. There are options (not a lot, but some), and as Sue points out sometimes it is about how one is taking the antibiotics, I.e. how often, time of day, with food/without, adding probiotics). Hopefully the specialist you are seeing soon is an NTM specialist. If not, you may want to consider finding an NTM specialist.

Jump to this post

I attend The Outpatients TB Clinic at our local hospital as well as the Respiratory Clinic. They are all very supportive and helpful but unfortunately I often see a different Respiratory Specialist each time I have an Appointment. I don’t have private health cover so have to go Public.

REPLY
meg2024 | @meg2024 | Apr 16 5:41pm
In reply to @sueinmn "@meg2024 AR you seeing a pulmonologist next week? Temporarily stopping antibiotics to get a plan together..." + (show)
@sueinmn

@meg2024 AR you seeing a pulmonologist next week? Temporarily stopping antibiotics to get a plan together is not such a bad idea. If you read here, you will learn about adjusting time of day, adding prebiotic and anti nausea meds to your regimen, and other tactics for tolerating the meds.
Were you prescribed 3 times weekly or every day?

Jump to this post

I was prescribed daily medication, two mane and one twice daily. I was taking Ondansetron TDS but still vomiting. I also take Probiotic Twice daily.
I mentioned to specialist that perhaps medication was too strong as I only weigh 42kg.

REPLY
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