Bronchiectasis and lung infection

Posted by magwil01 @magwil01, Aug 12 6:31pm

I have Bronchiectasis, never been told I have MAC or NMT , I am on 3 inhalents by nebulizer and do ACT and have cystic fibrosis vest daily.
Now I have lung infection that started a week ago. Diagnosed by the pulmo just by listening to my chest. Said I don't need sputum test or blood tests. Gave doxycycline for a week. I am very suspeptible to any infections as I lack IGA and IGM. I received infusions every 7 days. I would like a sputum test. Last sputum test was 6 years ago which showed gram positive cocci, gram negative rods, cocci in pairs +4, gram negative coccobacilli. no fungus. Should I not get a sputum test to see why I got infection? Doctor on vacation for 2 weeks with no backup as he is changing affiliations. Where can I get tested without a prescription? Quest and labcorp don't offer this.

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@scoop

Ask your immunologist to order a sputum culture for you. They love ordering tests! Not necessary to do on your own and it would be way too $$$$.

Unfortunately X-rays do not show enough detail about what's really going on in your chest. A CT scan is standard of care. Ask immunologist to order one, or suggest they speak with pulmonologist on the necessity of one, at least for baseline if you've not had one.

Regarding your earlier question about how to know if you have MAC and/or pseudo? The answers are CT scans, sputum samples and sometimes bronchoscopy.

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Thanks for your info. I cannot have a bronchoscopy because of my other condition. It introduces bacteria into the lungs (not supposed to but it does). I can't have any further surgeries. I will ask the immuno but he usually says he only orders his tests. I might have to go to my primary doctor.

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@liz440

Not to put too fine a point on it, but....I was hospitalized with pneumonia in one lung and pseudomonas recently and was given Merepenem (for the pseudo) IV and high dose prednisone for wheezing and asthma response and general inflammation of lungs and recovered from that quite quickly. So to be clear, you can receive prednisone in certain cases like this. (the pseudomonas was determined by culture to be susceptible to Merepenem (sp?)

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Yes, Liz, absolutely there is a role for steroids. I have used them many times when a lung inflammation will not clear. But @magwil01 has a pulmonologist who was not conducting any cultures, so that is concerning. If she has either MAC/NTM or pseudomonas, doxycycline is not likely to help.

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Is this your PCP who is on vacation?? If not ask him/her to order a sputum culture.

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@mariegrace

Is this your PCP who is on vacation?? If not ask him/her to order a sputum culture.

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@magwil01 This is good advice. If your PCP is not sure what to order, they can look it up in their system under bronchiectasis tests to order

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My pulmo returned. He took an xray, says it is clear so it is not an infection but inflammation. I still wanted a sputum test. He says there is no reason. I have an exacerbation and he is giving antibiotics and steroids and now inhaled steroids.

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@magwil01

My pulmo returned. He took an xray, says it is clear so it is not an infection but inflammation. I still wanted a sputum test. He says there is no reason. I have an exacerbation and he is giving antibiotics and steroids and now inhaled steroids.

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If you can hold off on antibiotics etc, I'd make a sick appointment with PCP's office right away and be evaluated there. Ask for an order for sputum culture and possibly CT scan (if you have not had one in a while).

Never have I heard of a pulmonologist refuse to write an order for sputum culture. Standard of care for bronchiectasis is sputum culture prior to antibiotics.

Arm yourself with information by reading through the thread ABC's on Bronchiectasis and MAC (NTM) right here on this forum. Use the search bar.

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@sueinmn

Sorry to be negative about your doctor, but if you have bronchiectasis and are coughing up large amounts of sputum and you have an infection and doxycycline didn't help, you NEED a sputum culture (not just an AFB slide test) to determine exactly what bacteria is in your lungs so it can be properly treated.

Prescribing doxycycline will do nothing for the two most common bacteria to infect people with bronchiectasis - Mycobacterium Avium Complex (referred to as MAC or NTM) or pseudomonas. And probably not for staph or strep, the other two frequent culprits which tend to be doxycycline resistant when in the lungs.

A sputum culture means they do 2 specific tests on your sputum in your usual lab - to check for the presence of mycobacteria. My lab also tests for staph and strep at the same time. If either NTM or Pseudo is found, the specimen is sent to a specialty lab to be grown in an incubator for up to 8 weeks. This will show exactly what "bug" it is, and then they test to see which antibiotics have an effect on it.

Also, if you have Bronchiectasis and a lung infection, oral prednisone is not usually prescribed because it can suppress your body's natural ability to fight infection.

If your doctor doesn't understand this, it means they are not familiar with Bronchiectasis and NTM, and you will probably need to see someone else. This does not mean they are not a good doc for others, but few are experienced in treating MAC & Bronch because they are quite rare. If you cannot change pulmonologists, perhaps you can be referred to an infectious disease doc for consultation.

Do you have the option of changing doctors?

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As @sueinmn writes: “ A sputum culture means they do 2 specific tests on your sputum in your usual lab - to check for the presence of mycobacteria. My lab also tests for staph and strep at the same time. If either NTM or Pseudo is found, the specimen is sent to a specialty lab to be grown in an incubator for up to 8 weeks. This will show exactly what "bug" it is, and then they test to see which antibiotics have an effect on it. “

It really illustrates how the standard of care for patients with Bronchiectasis varies so widely. It is still considered a rare disease though one of the top lung diseases and becoming more prevalent worldwide.

Maybe a memo should go out to pulmonologists who refuse sputum tests. I thought only people like my own doctor who knew nothing of the chronic condition took those decisions.

It is such a relatively easy test for many to achieve and so critical to proper diagnosis for antibiotics, at a time when we really want to target antibiotic use.

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@jnmy

As @sueinmn writes: “ A sputum culture means they do 2 specific tests on your sputum in your usual lab - to check for the presence of mycobacteria. My lab also tests for staph and strep at the same time. If either NTM or Pseudo is found, the specimen is sent to a specialty lab to be grown in an incubator for up to 8 weeks. This will show exactly what "bug" it is, and then they test to see which antibiotics have an effect on it. “

It really illustrates how the standard of care for patients with Bronchiectasis varies so widely. It is still considered a rare disease though one of the top lung diseases and becoming more prevalent worldwide.

Maybe a memo should go out to pulmonologists who refuse sputum tests. I thought only people like my own doctor who knew nothing of the chronic condition took those decisions.

It is such a relatively easy test for many to achieve and so critical to proper diagnosis for antibiotics, at a time when we really want to target antibiotic use.

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I would just add that the pseudomonas/susceptibility test comes back very quickly - like less than a week as I remember.

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@jnmy

As @sueinmn writes: “ A sputum culture means they do 2 specific tests on your sputum in your usual lab - to check for the presence of mycobacteria. My lab also tests for staph and strep at the same time. If either NTM or Pseudo is found, the specimen is sent to a specialty lab to be grown in an incubator for up to 8 weeks. This will show exactly what "bug" it is, and then they test to see which antibiotics have an effect on it. “

It really illustrates how the standard of care for patients with Bronchiectasis varies so widely. It is still considered a rare disease though one of the top lung diseases and becoming more prevalent worldwide.

Maybe a memo should go out to pulmonologists who refuse sputum tests. I thought only people like my own doctor who knew nothing of the chronic condition took those decisions.

It is such a relatively easy test for many to achieve and so critical to proper diagnosis for antibiotics, at a time when we really want to target antibiotic use.

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So if I ask another doctor to do a sputum test, I don't have to tell him what to look for? I don't have to know all the possible things a sputum should test for? I just say "sputum" and that test will look for everything I need including MAC, NTM, pseudo, rsv, bacteria, hib?

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@magwil01

So if I ask another doctor to do a sputum test, I don't have to tell him what to look for? I don't have to know all the possible things a sputum should test for? I just say "sputum" and that test will look for everything I need including MAC, NTM, pseudo, rsv, bacteria, hib?

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Sputum cultures test for what you list except RSV which is a virus. The lab knows what to do. Any bacteria detected grows pretty quickly 2-3 days with NTM/MAC taking 8 weeks.

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