Flu-like symptoms

Sorry to hear you're feeling unwell. I can speak only about the bronchiectasis.

Body aches and weakness happened to me with a bronchiectasis exacerbation, which I used to experience every month or two, even with twice a day airway diligent clearance. I'd produce green mucus, very yucky, and feel like I had pneumonia. Oddly, my sputum culture grew nothing (which I dropped off before starting abx). It turns out the culprit was reflux; small aspirations, likely during sleep, would irritate my sinuses and/or end up in my lungs. Once I raised the bed along with sleeping on a wedge (approx 30 degree angle in total) these frequent exacerbations with the chills, body aches etc went away. Also, my sinus issues also ceased. I also paid very close attention to strict food/drink restriction 3+ hours before bed along with avoiding food triggers (onions and dark chocolate.)

I figured it was worth sharing my experience in case something like this might be happening to you. I hope others will weigh in on the meds you're on and also the MAC.

I had horrible flu symptoms from rifabutin, my id doc had me take 3 weeks off and try it again with the same effect so I’m just on azithromycin and ethambutol at this time. Hope you feel better.

Thank you…..so glad those issues subsided for you when you figured out the culprit. I have not been having the same experience with coughing and mucus. In fact, I would not even have known I had this disease if I had not had a CT scan for a totally different issue. Thank you for your input…could be helpful down the road?? I hope you continue to improve.

Thank you…that is very helpful for me. I wondered why the Dr. discontinued the ethambutol instead of the rifabutin. And i see you are seeing an ID doc …is this in conjunction with a pulmonary doctor or just the ID doctor? I am seeing a pulmonary doctor and wondering if I should also consult an ID doctor. Thoughts? Also, may I ask if you are improving with these 2 antibiotics? Thank you!!!

I take the 3 daily. Most days lately are spent on the couch. Feel terrible in addition to the chest and back pain

Thank you…pretty discouraging but at least I know I am not alone. I hope you start feeling better soon.

I am fairly new to BE and this Support Group.
What I have learned so far is that unless your pumonologist is well educated on all aspects of Bronchiectasis with many Bronchiectasis patients, you may not need an ID doctor, however, Dr. Elizabeth Ann O'Donnell from Georgetown University in The World Bronchiectasis webinar indicates it is wise to have an ID doctor on your medical team. I just secured an appointment with an ID doctor locally, and especially since my Pulmonologist who specializes in Bronchiectasis is in a Bronchiectasis program out of state. I personally will be glad to have him, the ID doctor, as a part of my medical care. This particular ID doctor I have contacted, from what I have learned, has other BE, Bronchiectasis patients. Too many pulmonologists from what I have learned and heard are not as informed and enlightened about Bronchiectasis in general and not well schooled on how to go about treatment for MAC etc. That is what I have come to learn and understand about the pulmonologists locally and of those not associated with specialized Bronchiectasis programs. However there are, from what I have read in this group, individuals who have found pulmonologists who are well educated, informed and have up to date knowledge on BE. I also have learned in the past few years with my trying to find out what was wrong with me, (Bronchiectasis) I prefer seeing specialists well educated in the specific health problem I am having and I have interpreted rightly or wrongly that Medicare is O.K. with that per my working through Medicare...at least so far no problems seeing specialists. You might also like to go to the page in this Mayo Connect that talks about Pulmonologist vs Infectious Disease Doctor. Hope this gives you food for thought.... for what it is worth.

...and some of us educate our doctors about bronchiectasis! I agree with you for a MAC diagnosis you want someone who has treated it before you.

TO: scoop | @scoop | 23 hours ago
Yes scoop, so true: "some of us educate our doctors about Bronchiectais" or nurse pratitioners or PA's.
Yes as others have had to do also....been there done that "educate our doctors", even though it is a short time of my being told I have Bronchiectasis. Most of what I know I had to reseach for answers and understandings on the internet or from this Mayo site or NJH or Tyler etc. etc. and none from my local pulmonologist as one would hope. Yes you said it well again, "treated it before" and I will add......truly into what they are there for. Hope you had a sunny weekend. Enjoy your posts.

I no longer see my ID doctor, or my original pulmonologist. I changed to a pulmonologist that specializes in bronchiectasis now. Thru this site I realized I was getting some misinformation from both doctors, even though they said they treat many MAC patients. I was put on levequin after the rifampin didn't work for 4 months but then got tingly toes and joint pain. My sputem was not tested for 7 months on the 3 meds, which I had to initiate, (which is one more reason I switched drs.) Luckily my sputem sample from July was negative of Mac. so now I am on 500 mg. azithromycin and 1400 ethambutol 3 x week. I am testing sputem every month to make sure MAC doesn't come back while only on the 2 meds. If all goes okay, I'm hoping to get off everything by May/June. I was so hesitant to start meds. and the first docs. basically scared the crap out of me so I gave in. At this point I'm too far in my commitment to stop. Taking the meds. did get a bit easier over time, stomach is not as touchy and I'm not getting pains like I did in the beginning. Good luck and speak up and ask lots of questions, I was too intimidated a year ago.