CT Scans vs Sputum Cultures, which is more important?

Hi Bon.
I am still not taking anything but Azithromycin. It doesn’t really have any side effects to me or just minor ones. They still tell me that I will create a super bug doing this but I feel good and have lots of energy most of the time. They want me to go to an ID doctor because he could have other options besides the big 3 that might not have bad side effects. I have an appointment on August 22nd. If they say they have side effects I will not be taking them either. I am taking lots of vitamin C, D3, and other things to build my immune system plus I am taking weekly Super B shots. Not sure which one or maybe all are making me feel good. I have over an acre of yard and I mow it in the 100+ degree weather. Of course I have a riding mower but I also weed eat the edges and all so I think I do pretty good so why mess that up taking awful drugs.
I agree with you that I can do this without major side effects drugs. Sometimes it is a lot mental how our bodies fight things and I am going to fight. I am also like you in that if anybody will get it it will be me so why chance the drugs.
Thank you for reaching out. Not many agree with us.

Hi Renee
So nice to hear from you. I would love to hear how u make out. What kind of vitamin. c do u use. I also have fibromyalgia and costochondritis. In a very bad flare with both. I’m at dr swensons office. First visit. Bon

How did your appointment go? Here is a picture of the supplements I am taking plus I take Paximune. You can google that. I am feeling great with what I am taking plus I really think the B Complex and B12 shots weekly help my immune system. I get them at a local Spa and they are not expensive and don’t need a prescription. If you don’t do that you might check into it. There are different brands of the b supplement shots and infusions.
Hope this helps some. I am so in agreement with you about not taking the drugs.

Hi Renee…
It was great to hear from you! Thanks for listing the supplements..very helpful!
I had gone to National Jewish Health a few weeks ago. Got a complete work up test-wise. I thought the experience there would quell all my questions and fears, but it did not. Although I did get some help, it fell short in in forming me where my disease REALLY STANDS. I HATE TO SAY THIS ABOUT THEM, but it’s the truth. Sooo, I decided to go to Dr Swenson, who is a Mac/ Bronk specialist in Atlanta…an hour and a half from me. He’s really got a fabulous reputation! Totally specializes. Mac. Bronchiestasis!
The visit was fruitful on many levels. I loved him. He’s smart, dedicated and EXPLAINS THE TRUTH. IN DETAIL.
I HAVE BEEN GETTING A LOT OF RIB PAIN NOT JUST IN FRONT, BUT ON THE SIDES. I assumed it’s my costochondritis…..only worse than I ever have had in 40 years. Also fibromyalgia too…..same scenario. Long story short…..
He said he was concerned about the Mac. That the Bronk was kinda mild, but the Max is kinda extensive and he attributes my recent extra pain and shortness of breath to extreme inflammation from this Mac.
He said that fortunately, it shows no cavities ( yet), no bleeding, no coughing up blood, which can be expected if the disease, in my case goes untreated down the line.
His recommendation is that I start off, VERY SLOW AND CONSERVATIVELY on Azithroymin and the second med…I’ll look up the name. Firstly, it would be three times a week, not every day day. I would have an Opthomologist examine my eyes every three months.. the first exam would be a baseline line visit. Then he will have something to compare with in future visits. I explained to him how I react to meds.. he really gets it.
He said he will be there for me me. EVERY STEP OF THE WAY. if I can’t tolerate them we will discuss and come up with solutions. He said ‘I’m going to watch you very carefully’.

If I do not do this my disease will most likely progress and then I will be in a position where I will HAVE TO TAKE THE HARSH MED ALSO, THE THIRD ONE.
After listening to him, and in my particular case, I MUST DO THIS or I could become a very sick girl. Progression.
He has many many patients using the the two…….he said. I heard from a friend that he is actually conducting a clinical trial with the two for people in my stage.
So I am getting meds…slowly and small doses and with a lot of supervision from Dr Swenson. I’m very scared and have to adjust now.
I’ll let you know my progress. Keep in touch. Bon

Thank you so much for the information. I would like to know the name of the drug you are taking with Azithromycin. I take 500 mg three times a week and the pain in my side is much better. Maybe the ID doctor has ideas too. I will keep in touch with you. If 2 work why take 3. Please let me know what 2 is and if you notice a difference in your eyes.

Hi Renee. I would love to keep in touch with you. ethambutol is the second drug. Did your dr tell you if your Mac is extensive or not so much? Do u have cavities or pseudomonas? I do not? My dr does telehealth for out of state.

That is the drug I am not taking because it can cause eye damage and my eye doctor suggested I not take it.
My doctor has not told me how bad this is so far but maybe the id guy will. I am not sure if I have any of those things yet.
I would like to stay in contact also.

Marycarol,
As an engineer, I want to comment on my understanding of CT vs. Sputum.
A CT is quick, but subjects you to a lot more radiation than a simple Chest XRay. That is why they try to limit CTs to two/year, or maybe four.
The results can come back the same day, but it's a subjective interpretation by a human. There has been some research with computers evaluating the XRays, and the results are promising. However, XRays are limited in their resolution. A ball park number would be about 1mm or 0.039 inches.

For some people, it's very difficult to get a sputum sample; with an XRay, you just lie there. Easy. After you get three sputum samples, they have to be "good" samples. I had one that had too much saliva in it, so only
two of the samples could be processed. Then you have to wait 4-6 weeks for the lab to grow the stuff. Some labs are better than others. You might get a negative reading, even though a little bit of MAC is present.
However, if you get two positives, you definitely have MAC.
So a doctor should use XRays to keep an eye on you, and if the XRay indicates you might have MAC, then the sputum test would be appropriate.

A yes or no result is based on two different scientific principles, so both are useful.

Harry

I've had NTM's for 5 years, had about 20 CT's, not one x-ray other than just after a surgical lung biopsy. And I've seen a lot of different pulminologists/id's, not one has ordered an x-ray.

Rick,

Interesting. What city are you in? I'm in San Jose, CA.

A single chest x-ray exposes the patient to about 0.1 mSv. This is about the same amount of radiation people are exposed to naturally over the course of about 10 days.

A CT scan of the abdomen (belly) and pelvis exposes a person to about 10 mSv.

A PET/CT exposes you to about 25 mSv of radiation. This is equal to about 8 years of average background radiation exposure.

So you have had a lot of radiation!! Some doctors, such as my pulmonologist,
is hesitant to order too many scans. I have an appointment tomorrow,
and I will ask him about what additional information a CT gives over an
XRay.

I do have COPD and Emphysema, so maybe that makes a difference.

Harry

Radiation info from cancer.org website.