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Finally a diagnosis, on 3 antibiotics, anyone else on oxygen at night?
MAC & Bronchiectasis | Last Active: Aug 2, 2022 | Replies (16)Comment receiving replies
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?
Replies to "Hi Sue, You must be an angel. Finally someone listening. I've had 4 pulmonologists in the..."
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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?