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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@magwil01

Who needs to buy what? The sputum cups? The question was how to purchase the sputum tests not cups. The doctor won't order so the question was, where to get a lab that will do it at patients cost. 🙂

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My pulmonologist has a supply of sputum cups in her office. You should not have to buy them!

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@jnmy

I wonder if the protocol about what the specific lab will check for varies depending on state and/ or lab? Perhaps you could check with your new pulmonologist or lab. Just a thought. Take care.

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It depends on what the pulmonologist orders (and codes) sputum test, sputum culture, colony count, sensitivity test...so they are the correct place to ask. Some state labs and NJH lab are set up to do colony counts; I understand most Quest labs are not - I don't know about others.

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@magwil01

I have noted this for my doctor in case he ever lets me take it. Thanks for your knowledge.

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My doctor refused to test me several times over a long period of time as symptoms worsened. I now have a pulmonologist.
You could insist that your doctor either do the mucus sputum test or refer you to a pulmonologist who will ( if you don’t already have one).
Perhaps having someone attend the appointment with you might help? If you have ongoing symptoms or a serious flare up of Bronchiectasis, it is hard to imagine you would be denied a sputum culture test, but it happens. Sometimes a second opinion is warranted. Don’t let a doctor gaslight or intimidate you if you are ill.
Wishing you luck.

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Currently on steroids and antibiotics for several weeks and it is too late to do a sputum test. He says it wouldn't do any good. He also says it is asthma and not my bronchiectasis so sputum wouldn't help. He is the top pulmo around here. He says he can tell by the sounds in my chest. I will ask again when I see him a month after this clears up.

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@mariegrace

My pulmonologist has a supply of sputum cups in her office. You should not have to buy them!

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Again, it is not sputum CUPS we are talking about. It is sputum TESTS.

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@magwil01

Again, it is not sputum CUPS we are talking about. It is sputum TESTS.

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Sputum tests are done to detect bacteria ( culture) or for mycobacteria

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@magwil01

Currently on steroids and antibiotics for several weeks and it is too late to do a sputum test. He says it wouldn't do any good. He also says it is asthma and not my bronchiectasis so sputum wouldn't help. He is the top pulmo around here. He says he can tell by the sounds in my chest. I will ask again when I see him a month after this clears up.

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Yikes! Here is the current guideline for identifying and treating NTM:
https://ntminfo.org/wp-content/uploads/2020/07/NTMguidelines2020.pdf
Here is the deal - with bronchiectasis, your lungs are damaged so that it is hard to cure infections - my pulmonologist cannot tell with a stethoscope whether I have NTM/MAC, pseudomonas, aspergillus or nocardia infections. It takes: a sputum test, a sputum culture, a CT scan and a current health history (looking for fever, fatigue, cough, weight loss, night sweats...)

Sputum tests and cultures can be done while you are on antibiotics - that is how we tell whether or not the meds are working. If not working, sensitivity testing of the cultured germs is needed to see whether the meds need to be changed or increased. When on the NTM antibiotics, it is typical to submit a new specimen every 2-3 months, and if you don't clear in 6-9 months, a 4th med is often added or the dosage is increased.

All of this tells me you need a doctor more experienced treating Bronchiectasis and NTM - if you can let us know generally where you are, I am sure someone will have a suggestion. You can also self-refer to National Jewish Health in Denver, Mayo in Minnesota or Florida, UT Tyler in Texas, Cleveland Clinic and a number of other centers that specialize.

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@sueinmn

It depends on what the pulmonologist orders (and codes) sputum test, sputum culture, colony count, sensitivity test...so they are the correct place to ask. Some state labs and NJH lab are set up to do colony counts; I understand most Quest labs are not - I don't know about others.

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Sue - Not sure I understand "sputum culture, colony count, sensitivity test".
Does each test for something different
or
do they all indicate the extent and degree of an infection (MAI/MAC etc. etc.) but have different ways of expressing the results???
Barbara

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@blm1007blm1007

Sue - Not sure I understand "sputum culture, colony count, sensitivity test".
Does each test for something different
or
do they all indicate the extent and degree of an infection (MAI/MAC etc. etc.) but have different ways of expressing the results???
Barbara

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These are different steps in culturing the same specimen. The culture is grown for 4-8 weeks, then inspected under a microscope to see whether NTM is present, and what type. To a trained eye, the types look different; in some cases they can be further identified by genetic testing of the bacteria.
The next step is a "colony count" - if not requested, a number is not expressed - usually recorded as few, some, many...A more exact method is to count the number of NTM colonies growing on the specimen, which is expressed by some labs as an absolute number, and others on a scales (meaningful to your doc as +1 thru +5). This helps indicate the severity of infection, and can help the doc decide whether antibiotics are needed immediately or you can "watch & wait", and sometimes whether Arikayce should be added right away.
The final step is sensitivity testing - antibiotics are applied to the colonies to see which are effective against your "bugs" so the treating doc can decide which ones to use.

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@sueinmn

These are different steps in culturing the same specimen. The culture is grown for 4-8 weeks, then inspected under a microscope to see whether NTM is present, and what type. To a trained eye, the types look different; in some cases they can be further identified by genetic testing of the bacteria.
The next step is a "colony count" - if not requested, a number is not expressed - usually recorded as few, some, many...A more exact method is to count the number of NTM colonies growing on the specimen, which is expressed by some labs as an absolute number, and others on a scales (meaningful to your doc as +1 thru +5). This helps indicate the severity of infection, and can help the doc decide whether antibiotics are needed immediately or you can "watch & wait", and sometimes whether Arikayce should be added right away.
The final step is sensitivity testing - antibiotics are applied to the colonies to see which are effective against your "bugs" so the treating doc can decide which ones to use.

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Sue-
Thanks for the detailed explanation. You have learned so very much in what I would consider a reasonably short time, from the time you were finally diagnosed with BE, the infections and the go round of antibiotics.
So far with two different results, one of my cultures received a statement of 7 Colonies and the following months's submission to Tyler stating the +1 both for MAI complex. Here's hoping I am doing right by myself with what I am doing to keep me from hearing....."we need to put you on anti-biotics." As I said before, that will require great thought, a well thought out decision, to start the rountine of antibiotics at my time in life. Now at 81 and 10 months into life. Hope your Sunday is filled with all enjoyable activities.!

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