Finally a diagnosis, on 3 antibiotics, anyone else on oxygen at night?

Hmm, this is quite a list.
Let's start with the length of time to diagnosis and "Why don't doctors tell you more?" Bronchiectasis and MAC are considered rare diseases - especially when compared to things like asthma or COPD, so are often missed or misdiagnosed. Many pulmonologists and family practice docs just don't see it often enough to recognize, and know how to treat it. I was I'll for 3 years before I was diagnosed, with several bouts of bronchitis and pneumonia. This is a typical story on our group.

Second - the fatigue and lack of immune system. Oh yes, the 3 antibiotics can be brutal, especially if you are already run down. Many of us learned to treat the year or more on antibiotics needs to be treated like a prolonged illness, or convalescence, limiting activities and definitely limiting exposure to people who are ill. And we all know small children are germ factories! My daughter is a nurse, and strictly limits my exposure to my little 3 & 6 yo grands. I became accustomed to wearing an N95 mask around them when they may be ill. As you recover and get stronger it does get better, but maybe consider masking?

Third, your question about low oxygen...this is quite possibly one of the biggest reasons for your fatigue. Have you had a sleep study, or do you use a CPAP? If not, it may be a very helpful discussion to have with your doctors. Let's ask another member, Terri, @windwalker about her experiences using oxygen.

Finally, I know you have been seen at Stanford, but are you confident that your current team are experienced in treating MAC and Bronchiectasis? This may be the reason for lack of explanations. You might look up their profile on the web site, or need to ask directly. Treating MAC is a marathon, not a sprint, and you need to have a good team helping you. I switched docs halfway through my treatment because the pulmonologist got angry when I asked to bring an Infectious Disease specialist into the team. Best thing that happened - my new pulmo is great and she listens and explains!

I would love to continue this discussion with you, to make sure you find the resources you need.
Sue

Hi Sue, You must be an angel. Finally someone listening. I've had 4 pulmonologists in the past 16 yrs. and just recently changed to Stanford two months ago where I was finally diagnosed by my new doctor with MAC, so I hope I'm good for now.

I did research doctors for bronchiectasis because I didn't know I had MAC until just a couple of weeks ago. I left my last doc because she yelled at me for taking steroids the ER doctor prescribed and everything seemed to be my own fault, because in her words "she was one of the best pulmonologist" to be found.

In searching for a diagnosis, I did find the most amazing allergist who confirmed I had no allergies but was suspicious of my positive TB test from 40 yrs. ago. She referred me to an Dr. Hwang, ENT at Stanford because I also had rhinorrhea and postnasal drip which aggravated the cough even more. He performed cryoablation therapy which has been wonderful.

I really don't know anything about MAC with bronchiectasis but since the first of the year, my symptoms have more than tripled in intensity. I didn't know I had any choices in treatment so I jumped at the antibiotic treatment. I asked the doctor about the side effects and he told me to schedule a hearing and eye test and liver tests to have a base to watch those things but I didn't know about the exhaustion. I've been beating myself up for having no energy for the last year and just thinking I'm being lazy, because I know I can do better. This having to take two naps a day though, I'm trying to be kinder to myself.
I have so many questions. Have you heard of this effecting the thyroid gland if one is on thyroid medication? I've been on the edge of tears for weeks, does depression accompany this illness?
Are there degrees to this illness? How would an Infectious Disease specialist be helpful?

Hello josey1, my name is Helen and I found this site by chance and it has helped me so much. I have been coughing since 2015 and was told I had TB. I took all the INH Meds for 8 months and felt horrible then better. Unfortunately the cough never went away but, I was too stubborn and was so busy working and living and thought it would resolve. It got worse and I was diagnosed with Bronchiactis, Hypersensitivity Pnomomitisis and Asthma and had SOB. I kept on coughing and so fatigued all they time it started affecting my work. In 2020 I got COVID and was so sick and put on several antibiotics and oxygen. My PFT Tests were pretty bad and was put on steroids which I learned from reading on his site one of the worst things for bronchiactis. In 2021 I again thought I may have COVID but, later learned I had Pnumonia. In March of this year by chest was hurting and ended in the ER. The MD there was great. She did a CT Scan note I have had several and nodules and no big deal per my Pulmonologist. I was then informed I have MAC. Was referred to an ID MD who put me on 3 Antibiotics plus Arykace.
I started weaning myself off the steroids. I have been on MAC meds since June this year 2022. I use oxygen during the day when I so to much. I am pretty fit bit and think this helped me, but for the last 6 weeks I was so tired and scared I could not take all these meds as sick all the time. I started using the saline 3% in late June after reading here with albutetol 2 x a day. I asked for 7% saline but, was told by my ID doctor to hold off. Right now I on a 5 day trip did with 3 teenage granddaughters up the coast. My family didn't want me too. I honestly feel so much better and although I am still coughing I feel better. Here ate challenges and I have learned how to take my meds at different times when to eat as I had no appetite and hope this turning point is due to me getting better and then meds with saline and albuterol are working. I go in for blood, x-ray and sputum on 8/8/22 and pray my MAC is under control and I continue to do well as this is a very difficult disease and with all the other lung issues every small accomplishment is a gift. Hang in there and pray you feel better. Sorry for my going on and on.....

I was on oxygen at night for over a year up until about 6 weeks ago. My oxygen was dropping in the low 80's at night and I had a dull headache every morning. The pulmonologist at UNC-Chapel Hill ordered a sleep study. I have sleep apnea. It was determined that I needed CPAP. Got the CPAP and am have not used oxygen since. Was afraid to let the oxygen concentrator go, so the doctor ordered all night pulse ox. That was completed a couple of days ago. However, my FitBit for the past 6 weeks has shown average oxygen each night to be anywhere from 92 to 95. So apparently the oxygen dropping was the Sleep Apnea. It will probably be a week or more before I hear the results of the overnight pulse ox.
7% Sodium Chloride: 3 percent which does not good at all. However, there are times when I have used the 7 percent and there is still a lot of mucus in my lungs and the 7 percent is beginning to burn. I mix 3% and 7% in the nebulize cup to make a 5 percent solution and that works to get even more mucus out of my lungs. I don't know whether a 5 % is made or not, but I make it by combining the 2 . It does not burn or make me cough but does work to get mucus up.

Hello Raney! Just read your post. I was going to suggest to Josey als0, to cut the 7% saline with the 3% until she can build a tolerance to it. It was my understanding that the 7% saline is supposed to burn a little and make you cough. It causes your lungs to be irritated to the point of coughing so that you bring up the phlegm. NIH did a study and found that it takes the 7% saline to kill the mac bacteria. I have been nebbing 7% since 2013 and have such a tolerance to it now that I don't even feel it or cough. It is still necessary to do it because the salt keeps the bacteria from flourishing.

Hello Josey. Yes! The three meds taken for MAC can affect your thyroid medication. You need to talk to your dr about that. I feel badly that you are feeling depressed; I wish I could give you a big hug. Trust me, we have all been there. The more you learn and the treatment beats the mac infection down; you will feel better about things. Please keep reading through old posts from the DISCUSSION board; you will learn an incredible amount about living with mac and bronchiectasis. Like you, I went for 10 years going to 'the best pulmonologists' and none could diagnose me properly. It wasn't until 2013 when I went to Mayo that I got diagnosed, and my exacerbations under control. They were able to get the constant cough I had for 10 yrs to go away. Extreme fatigue comes with MAC as you know. I suffered from that for many years, but have more energy now. I still have my off days where all I do is rest on the sofa. I listen to my body; when it says I need rest, I do. Exercise is key, I walk a mile every day, and probably another mile in my house, (even on my sofa days). I have two dogs that need walking, so not doing it is not an option. Weight loss and muscle wasting can also occur, so it is very important to, at the very least, use stretchy armbands to keep your arms toned. There are leg exercises too that can be done while seated. You can do these while watching television. Now, I have never heard of steroids being a No-No for patients with bronchiectasis. I just came off of a five day run of them for a sciatic nerve problem. I felt like a totally normal, healthy human being on them, I wish I could stay on them, but I know that is not a healthy option. Were you on steroids long term?

Raney, you now have me wondering if all I need is a cpap machine instead of sleeping with oxygen, My dr wanted me to do a sleep study last year, but I declined as the benefit to doing one wasn't clearly stated to me. I would love it if I didn't have to have oxygen at night. That would make traveling so much easier if all I had to lug was a cpap machine! How about when you walk? Do your oxygen levels drop down below 90?

A sleep study would show if you needed oxygen at night or if a CPAP would do.
I take a pulse ox in my pocket when I walk and check my oxygen occasionally. It usually gets better when I walk because I am breathing deeper

Most of the time the 7 percent works great for me but occasionally it burns. When that happened I dilute it with 3 percent

Thank you Helen. I appreciate your story, it’s therapeutic for both of us,especially in finding the similarities.