Need advice for my situation

Posted by vegita182 @vegita182, Jan 28 5:22pm

Just got my CT results in. It was a ct with contrast but according to theb. Radiation dosage it was a low dose scan. Results are 2 modules in my left lower lobe both small one 3mm the other 6mm. No other remarks conncerning my lung, no nronchiectasis or consolidation or ground glass opacities. My pulmonologist said they need 2 more sputum samples to officially diagnose me with mac as I’ve only had the one. My delimma is my symptoms are on my right side. I get a burning sensation in my right lung then I’ll get very thick mucous and once I clear it up the burning goes away until the process repeats some days I feel feverish when this happens ,and I’m always tired. So I need advice would the low dose ct with contrast be enough to show bronchiectasis in the first place?is my inflammation so mild the low dose ct didn’t pick it up?Do I need to ask for a high resolution ct? My pulmonologist also said they will not treat me if it is Mac that I would have to have infectious disease do that. I am still waiting on a referral from them. Since I’m looking at another 12 weeks for 2 more sputum samples what do I do? If I don’t have obvious changes on my ct that means either I caught it early or I’m still mild . I don’t want to wait 12 weeks before I start antibiotics. I don’t want to have more damage that won’t be reversible. What should I do?

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Sue, Volunteer Mentor | @sueinmn | Jan 28 8:45pm

@vegita182 Your pulmonologist is following the accepted protocol for treatment - one positive sample is an "indication of possible infection" and with the low amount of CT evidence of active infection it ²does not meet the criteria for treatment.
Here is the video from NJH that explains:

As for waiting 12 weeks, MAC is VERY slow growing - I know someone now who is being watched for 5 months before considering treatment. And the low dose CT is the standard for diagnosing infections and Bronchiectasis.

From your description of symptoms, it does sounds like an infection of some type, has your sputum been tested for other infectious agents like pseudomonas or fungi?

vegita182 | @vegita182 | Jan 28 10:32pm

In reply to @sueinmn "@vegita182 Your pulmonologist is following the accepted protocol for treatment - one positive sample is an..." + (show)

That I’m not sure of. I’m not even sure why he thought to test for mycobacterium avium. I will call his office and see what they say. I can’t think of any other infectious causes that would last a year other than a slow growing mycobacterium. I’m assuming if he tested for MAC he also tested for TB?

I guess I just feel urgency in that I don’t want any further lung damage as I’m lucky enough to to have no evidence of disease. I’m assuming my 2 nodules in my left lung aren’t related to MAC

Rick | @rstel7272 | Jan 29 7:25am

I myself was 3 1/2 months before treatment started. During that time along with sputum cultures were a bronchosopy and a surgical biopsy before a final diagnosis was issued. My case was even very severe.

scoop | @scoop | Jan 29 10:09am

Maybe a little off topic. As many times as I’ve had chest CT scans, I have never had one with contrast. More recently they’ve been low-dose radiation, high contrast with newer machines.

If you haven’t already, seek out a pulmonologist who has a working relationship with an infectious disease doctor on Mac. I can understand your anxiety about waiting to get more answers.

vegita182 | @vegita182 | Jan 29 3:26pm

In reply to @scoop "Maybe a little off topic. As many times as I’ve had chest CT scans, I have..." + (show)

That’s the strange thing. My pulmonologist says he sees mac quite frequently and it seems endemic to the area I live in. I’m waiting on my appointment for infectious disease but I feel they will not be helpful until I produce 2 more positive sputum samples.

pacathy | @pacathy | Jan 30 7:33am

I think the sputum cultures are key. Sometimes an organism will just be colonized and not causing an infection. Are you doing any airway clearance to improve your chance of getting more cultures? Note: it doesn’t help everyone, including me.

circleup | @circleup | Jan 30 8:07am

My MAC was discovered quite by accident. Had all the imaging, biopsy, bronchoscopy, etc. . . . we were searching for lung cancer. I am completely asymptomatic with no sputum but cultures were taken during the bronchoscopy from lung tissue. I have a sub species "intracelluare". My only issues were shortness of breathe and fatigue. The ID started my drug regiment immediately. The big three give me side effects, i am miserable! Been six months so far. I am searching for a second opinion now. Everyones postings have been more helpful than my doctors.