@soflo, Hello Dee, welcome to our Connect group. I certainly understand your fear from your diagnosis. Keep in mind that much of what you read when you Google any info is either out-dated or has out-dated thoughts on how to treat mac. My doctor believes that automatically putting people on the 'Big 3' is overkill unless they have many colonies growing and cavities forming in the lungs. He put me on two lighter antibiotics with no side effects for me. My pulmonologosts is with the Mayo Clinic which is a research clinic and hospital. They are world-renown and well respected. Please read over my past posts and you will get a lot of info. If you click on my picture; all of my posts will come up. I was diagnosed 13 yrs ago with MAC and had pseudomonas and another black fungus crop up a ew yrs ago. I coughed non-stop for years, couldn't walk 20 ft., and was pre-qualified for a double lung transplant 2 yrs ago. Today, I can ride my bicycle 12 miles, I can walk many blocks (level ground) without being out of breath. I still have bronchiectasis, get short of breath with strenuous exercise, or going up stairs; and I still suffer unrelenting fatigue. Overall, my quality of life has greatly improved. Most patients with mac; also have bronchiectasis. Do you know if you have that as well?

Who do you see at the Mayo? And which one do you go to?

Thankyou so much for responding. I do have bronchiectasis as well :(...I started the 3 pills for 2 wks and got ill. I was told I have nodules on my lungs, is that what you mean by cavities? Which meds do you take now. I’m so scared and confused about stopping the 3 or doing another treatment. I worry about how fast will my lungs deteriorate? My pulmonologist said I have plenty of lungs left, I’m 52, and he was more against treating because it returns and is hard on the body but my infectiuos desease dr put me on biaxin, rifabutin and ethambutol at first visit but I had to stop I just got ill. I don’t cought. I do have mucus come up in the am, I am very tired when I get home from work and my breathing is heavy at times. Gosh will that get worse if I don’t do treatment? I also wonder what else can I do/take to be proactive? I’m sorry for all the questions, I just am worried about the future 🙁

@barbjh Good morning Barb. I see Dr. Leventhal at the Jacksonville, Fl. location. BTW, he has given me permission to quote him on what I post in these pages. Is your mac stable at the moment? -Terri

@soflo Hi, I read your post to Terri. I am new too. I just started the big 3 treatment, my doctor had me start the first antibiotic three days a week, Mon Wed & Fri for two weeks, then I will start the 2nd one the same way, then the third one the same way, it gives your body a chance to adjust to them before adding the next one. I just finished the two weeks with the first one, Azithromycin, starting Rifampin tomorrow, for two weeks then Ethambutol. So far I have no side effects. I am also doing the Nebulizer with Albuterol, the Capella that you blow through, & laying on a slant downward on your back for 5 min & again on your stomach for 5 min. These exercises promote clearing the mucus from your lungs, I also don’t cough up much mucus unless I do these exercises with the nebulizer. I am feeling better already, I have more energy & able to do the things I like & normally did, like riding my horse 3 times a week & gardening two days a week. Most importantly, “Keep a positive attitude”.

I am glad to hear that you are not experiencing any side effects from your new antibiotics. My husband will probably start on the big 3 at the end of the month. We are currently waiting for the results from his bronchoscopy which was sent out to the Jewish Institute in Colorado. Are these antibiotics expensive. We have Medicare and a very good supplemental that normally pays 80 - 90%.

Hi Soflo: I took the big 3 for 2 years almost, and it does inhibit the growth of the bacteria. However the pills also affect your organs. I am older than you, 70 so I got gerd, severe bowel cramps, rash, ear noise, (tinnitus) eyesight deterioration, and heart palpatations. I am ther only one in my family to have these conditions but also the only one with bronch and MAC. So, when I got nauseus, I ate. I kept a bag of animal crackers (favorite!) with me at all times and that seemed to do the trick. Never take on empty stomach and don't worry about weight, you will lose tons. But, if I were you I would only take for one year. The bacteria is very slow growing!! so no worries, it will not kill you tomorrow, and because you are youngish, they may have a nice inhalant coming on the market in the next 5 years that bypasses the organs and goes straight to the lungs. Research NITRIC OXIDE, In stage 2 clinical trials with great success. You are in pretty good shape, even if you start coughing blood, as I do, it always seems to stop and life goes back to normal. I even went to europe and got ill, sore throat, felt horrible, and for 100 euros!!! , had a doc come to hotel and prescribe amoxycillan. I told him if I got pneumonia I would die so he got right on it, Kicked it, fine now. So stay on this sight and do your own research as we are the guinea pigs for this disease, no one really knows.. If your oxygen is high, in the 90's, and you STAY AWAY FROM HOSPITALS AND ANYONE SICK, FORGET THE GIANT XMAS PARTY, Then you will be fine. Keep your cookies close. xoxo Christa

Soflo: ps forgot to say, the saline inhalant is great, get that, and even though you will be very tired, keep moving, the more exercise the better. xo Christa

@soflo welcome to our sight! You found the right place to make choices.  Our treatment vary and you have nothing to be scare of if you have no symptom or little symptom. I am bronchectasis and had a MAC.  Never taken the antibiotic treatment because my infectious

Dr says it hasn’t proven to be effective as much as they thought and people were getting sicker.  I had mild symptom at the beginning of the MAC and that is used as a last ressource.  In my case I was treating my little symptom with natural therapy.  I have

used Colloidal silver because taken internally it fights infections and it has been shown to be effective against more than 650 disease-causing organisms, including Escherichia Coli (E-Coli)bacteria and the fungus Candida albicans.  It is also good to fight

cold and flu (according to Dr Balch), i also used Clear lungs from Ridgecrest the blue cap to clear the lungs if I had to much sputum or coughing more than I should. I also use Dr Ohirra Professionnal pro and prebiotic.   Soflo you are the only one who knows

your symptom and you can consult an herbal nutritionist or an Omeopatic consultant to help you with natural remedy.  I feel it is safer and I have a normal life as I was before.  I believe in Herbal medicine and it work well for me and sure have no secondary

effect.  Last fall my bronchoscopy confirm that I do not have The MAC anymore so stay positive and do as if you had nothing because many people live with a MAC and are asymptomatic. I am very careful with Dr’s prescription.  I do take some antibiotic when

necessary do not get me wrong but would refuse to be on it the rest of my life.  Good bacteria is what keeps your immune system high to fight bad bacteria so why would I want to destroy that.  For precaution I kept taking Dr Ohirra professional pre and probiotic

to get as many good bacteria in my body.  My doctor compare it to an army.  If you have a good army to fight the enemy chances are higher to win.  Good luck and keep up living normally until you are more symptomatic.  MAC was giving me a feeling of having

slimy throat and i would cough sputum  more than usual and if my lung felt a bit congested I was using Clear lungs right away.  I wouldn’t wait to get it worst.  Do not worry you can get rid of the MAC without antibiotic.  Do you have an acid stomach?  Take

care!

@nick52 Where did you get the colloidal silver and how long did you take it? Did you have CT scans in the beginning?