Talk to me about your MAC journey please

What is MAC? I have been having lung ever since my car accident 1 year ago. I fractured my sternum and had a collapse long. They put me on steroids and told me I had a virus. But then my lungs got woarse and they said I have Bronchiectasis. Then I had fallen walking my dog and could not walk up stairs or across the hall to my bathroom with out my oxygen dropping. I went to the ER and they said I have pneumonia, a blood clot in my right leg and UTI from stressing continence from coughing so much. Also, now I have blood in my urine but no infection. They’re checking me for autoimmune problems and say that it’s inflammation. They said it’s definitely not a virus. All the viruses came back negative. I had cancer as a child which did put some scope on my lungs, but I was told that the scarring has not changed. They’re worried that the truth I had in 2022 could have caused some of this, but my oncologist says no it’s too far out. even though I have all the symptoms except the autoimmune if you listen to the commercial, I have mucus in my chest now it’s starting to break up now that my chest fracture is starting to heal. I can actually cough and get some stuff out. I’m a lot of medication. They want the pneumonia to heal then do a bronchoscopy. But my pulmonologist does not want to put me through that when he says the treatment is the same. I just don’t know what to do but I have been like this for months. I went from do martial arts to not being able to walk across the bathroom hall without oxygen 24 hours a day. Any suggestions would be greatly appreciated.

Welcome to Connect. I’m sorry you need to be here, but believe you’ll find a supportive and helpful group. It sounds like you’ve had a terrible time of it.

MAC is Mycobacteria Avian Complex, a slow growing bacteria that causes infections in the lung. It is diagnosed with sputum cultures and takes about 6 weeks to grow in a lab. If people can’t get sputum out, bronchoscopies are done to collect sputum if the CT’s and patient history indicates the need. Since bronchiectasis makes it hard to clear mucus (as does pain from a fractured sternum), we’re more prone to lung infections, including MAC.
Did your sputum culture grow it?

Hi Pacathy, tnx for the reply.
You mention to find a good support and helpful group. I was hoping this would be it?

Yes, they grew 3 sputum samples 3 years ago. At first I was told 2 sputum came back positive and one negative so they said I had TB. The following year I went back to doc very sick. Year 2.

About 8 months ago, I was tested again. 3 Sputum came out positive for MAC. That I have had all along for 3 years now.

It seems to be running harvick on my body with sore, painful muscles and pain in my joints. (Now i am older so some of this comes with age). A month ago they did a procdure on my lower back. Yesterday i had shots put into my left and right Sacroiliac Joints. Ouch..
Has anyone had any of these symptoms of very sore muscles and joints?

Aaches and pain different in parts of my body. Im Worn out, feel uncomfortable, fatigued often, difficulty breathing as I try to get something done. I'm just tired of it all..

Hi Help2025,
You poor thing. That is a lot to have to deal with I am completely on board with you. I posted a reply. Hopefully there will be some helpful information for you.

I would recommend you research Mycobacterium avium complex (MAC),
I think that would help you to see if it may or may not be your symptoms.

I hope you don't have it. It is a very unforgiving illness

@kimba@help2025
Hopefully others who have been on this Bronchiectasis and MAC (infection health problem) journey will begin to discuss all here.
However, with the little bit I know my question to you both, are you seeing a doctor, pulmonologist, that is dedicated to and specializes in Bronchiectasis with MAC infections. These types of pulmonologists are not as prevalent as pulmonologists that are more or less generalists in the pulmonology world.
Many people on this site have had a period of being misdiagnosed due to a lack of knowledge by the doctor they are seeing. It does require a pulmonologist who specializes in BE, Bronchiectasis and an Infectious Disease Doctor.
It takes much research and time for us. The internet and asking questions via google and going to reputable sites like this or information given by Mayo Clinic, Cleveland Clinic, National Jewish Hospital can help also.
Barbara

Hi Barbara,
Tnx for the response. I have been ill for over 3 yrs now. I'd say it all again but it's long. Could you please read my post? It explains what I have gone through with my MAC. I have a infectious diease doctor that is in Madision Wisconsin. He is a professor. He only specializes in Mac.

Sorry. I didn’t put “here” at end of sentence about the support group. I have found this group to be the most knowledgeable and helpful one I’ve tried.

Are you on the meds for MAC? I see you have an ID doc that specializes in it and that’s a good thing.
It’s also good that you’re healing enough to cough out mucus. I don’t see your airway clearance routine-are you on one? It’s the basic treatment for bronchiectasis and even those of us without MAC are taught to do it every day. If you haven’t been taught to do it, we can provide resources.

I can’t answer about the muscle aches. I was thought to have MAC based on CT’s, but cultures at Mayo were negative.Therefore, I haven’t been on any of the meds. I do think the fatigue and feeling short of breath are common.
I’m so sorry you’re feeling so miserable and hope the injections give you relief.

I’ve just started the MAC journey so don’t know a lot. I had terrible body aches for a while. They took me off albuterol nebulizer and gave me a levalalbuterol inhaler. MUCH better…less trembling, aches, jitteriness. I also had just started a statin and went off that as it can cause body aches so I’m not sure which was the cause….maybe both? I’m taking good curcumin for inflammation, too. Hard to say what causes what, but I feel MUCH better!

Hi Pacathy,
I'm sorry you have MAC. I know the meds mess up your body to.
After 3xs a wk for three months on a very high does of antibiotics, Infusions. It was not fun at all, but I got through it, and I feel much better as well. Im on strong meds for MAC. I take 5 a day for the last 5 months. As soon as they do 3 sputum test to see where I am. If my 3 test comes back all 3 pass I start 12 to 15 more months on the meds.

Are you seeing a infectious diease doctor?
I don't know what state you are in but I am going to UW in Madison Wis. A specialist for MAC. He is Awsome. I would highly suggest you go to a infectious doctor. I've been through many doctors through the years. They tried to help me, but I have found other doctors just dont undersunderstand MAC.

P.s. My lungs are now cleared up fron bad flem. I tried to do the 3 sputum test and I had nothing to give. Now I have to do them all again.