I was recently diagnosed with Bronchiectasis.

@patw .. Pat, I am so glad you called your doctor .. red and swollen extremities sound like a strange reaction. I would really like you to discuss with you doctor the fact that you have found our Mayo Clinic Connect .. that others on this Forum have doctors that CONSULT with doctors at Mayo Clinic, Rochester Minnesota who are experts on Mycobacterium Avium-Intracellulare Pulmonary Disease. Will she please call them and consult. Pat, if she refuses .. I would STRONGLY suggest that you seek out an Infectious Disease doctor and get a second opinion on your situation. I can guide you if you choose to do this. This is YOUR body .. you are given just ONE body in this lifetime .. if you don't take care of it .. no one is going to do it for you. YOU must be your own best advocate .. no one is going to do it for you girlfriend!

I am so sorry you are going through this .. a tough situation .. a real rip. Get some rest .. take good care of yourself right now over the week end and know that I am thinking of you .. sending you lots of positive energy and a Big Hug! Katherine

Hello. I went to the dr and she said it was the Doxy-cycline      She said I had to keep taking it and to stay out of the sun! I may be going to Scott and White in Temple Texas. I am at a lost about all of this medicine. It causes so many side effects. I am going to take all of my records and X-rays with me if I go. Thank you for your e-mails

@patw .. Pat, I'm so glad you are checking in. Question: I may be going to Scott and White in Temple Texas .. are they specialist in MAC .. is there a special reason you are going there? I am so glad you are gathering all your records and Xrays .. get any CT Scans also if you have had any .. it will really help lay a foundation for any new doctor. Pat, please keep us posted .. I know it is a scary time with all the meds and not totally understanding it all. When you see the new doctor .. take LOTS of notes at the meetings and then after add to the notes. I know that after the appointment I always remember more things that I can add. I will be thinking of you. Let us know if there is anything else we can help you with! Sending you a big Hug .. I know this is a tough time! Katherine

<p>I was recently diagnosed with Bronchiectasis post pneumonia. I have no to few symptoms (very occasional productive cough). No sputum culture yet. Had second CT scan last Friday, definitive results not in. Pulmonologist started me on Hypertonic saline with albuterol nebs and flutter device twice a day to try to induce sputum. Will start today. Would like a second opinion at Mayo with pulmonologist specializing in Bronchiectasis. I don't know if I have MAC as no sputum has yet been analyzed.</p>

Hi @conniec, welcome to Connect.
I moved your message to this discussion about bronchiectasis so that you could meet other members who have it. Please meet
@katemn @mmteach @lauralynn @tutti @dixer @kaystrand and @_bri_, several of who are currently Mayo Clinic patients.

To request a second opinion, please contact Mayo Clinic at one of our 3 campuses in Minnesota, Florida or Arizona: http://mayocl.in/1mtmR63

You may also be interested in reading and joining in these discussions:
- (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS http://mayocl.in/2cwX36M
- Bronchiectasis and staving off recurrent infections http://mayocl.in/2oEU1BY
- Have Bronchiectasis, recently diagnosed with pseumonas. http://mayocl.in/2pXkHio

Connie, when do you expect to get the results of the CT scan?

Dear All, if you have Bronchiectasis AND in case you are not already a subscriber please DO subscribe to day at:

Ignore if you already have read .. but I really liked .. Hugs to all! Katherine

9 QUESTIONS TO ASK THE DOCTOR ABOUT YOUR BRONCHIETASIS:
https://bronchiectasisnewstoday.com/2017/06/05/nine-questions-to-ask-the-doctor-about-your-bronchiectasis/?utm_source=BRO+E-mail+List&utm_campaign=a33add213b-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-a33add213b-72040541
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PLUS I just registered for the below:
https://www.ntminfo.org/component/k2/item/187?Itemid=566 (check out if there is a facility near you!)

Mayo Clinic, Rochester, MN; Physician: Timothy Aksamit, MD; Coordinator: Kathy Mieras; Phone: 507-284-9187; Email: mieras.kathleen@mayo.edu

Thirteen participating centers in the newly-available NTM Registry (as part of the COPD Foundation’s existing Bronchiectasis Registry) are enrolling patients who are eligible and wish to be enrolled.
The Registry provides a pool of patients as potential clinical trial participants, accelerating the rate of research into new treatments which may help NTM patients. Participation is voluntary, meaning that every patient enrolled has agreed to be entered into the database, and patients can be enrolled through one of the participating centers located throughout the country.
“The Registry expansion to include NTM patients represents a tremendous opportunity to raise awareness of NTM lung disease and to learn more about various aspects of it, including why some get sick and others don’t, and how treatments can be standardized or modified to the greater benefit of patients,” said Philip Leitman, President of NTM Info & Research (NTMir).
NTMir funded the initial work to expand the Registry and will cover the cost of the first 1,500 NTM patients enrolled in it. The organization is also currently exploring the possibility of adding new participating institutional sites in order to broaden the reach of the Registry across the country.
A list of participating centers with approval is below, and we will update it as the remaining centers obtain their approvals.

Dear All, from my File Cabinet re: Blood .. Hugs to all! Katherine

BLOOD/BLEEDING/BRONCHIECTASIS From Member @colapyrus, Jan I have also had hemoptysis (Hemoptysis is the coughing up of blood or blood-stained mucus from the bronchi, larynx, trachea, or lungs) – several times this past year. It usually lasts about 15 minutes and then stops on its own. When I was at NJH in May they said it will stop about 80% of the time on its own and 20% of the time you need some help. In my case I was told to lie on my right side (because my bronchiectasis is in my right middle lobe) then go to a hospital with intervention radiology. They can stop the bleeding by ‘plugging’ the blood vessel. Just wanted to pass that on. Jan **NOTE: : for those of us with Bronchiectasis .. might it be a wise precautionary measure to at least call our closest ER .. ASK if they have an interventional radiologist? Otherwise when we get there we are out of luck! (Interventional radiology is a medical sub-specialty of radiology utilizing minimally-invasive image-guided procedures to diagnose and treat diseases in nearly every organ system.)

Dear All, I just took the time to call my closest ER .. took some doing but I FINALLY got an answer IF I came in needing an "interventional radiologist" because they needed to "stop the bleeding by ‘plugging’ the blood vessel" .. I FINALLY got the answer that the "interventional radiologists" went home .. could not get an answer as to when! That the ER would have to evaluate the bleeding .. THEN decide if/when to call in the "interventional radiologist" .. hmmm. Frankly I just hope I don't need one too soon! But at least I now have my answer! Hugs! Katherine

@colleenyoung and the Rest of the Group!

Hi, my name is Amy. I am currently 48 years old. I have been on the 3 big antibiotics (Clarithromycin, Ethambutol, Rifampin) for almost two years now. My last sputum sample was Dec 19th, 2018 and I was just told that it was positive again. I was wondering if anyone else has done anything if there meds were not helping? I was very interested in what @lauralynn said about her clinical trials where she cleared her NTM after 6 years, plus of being on meds. Does anyone know what drug she inhaled, or any other drug to inhale that will help this go away? I also may need to look to switch my doctors. I live in Caseyville, Illinios, outside of St. Louis by 30 minutes. Thank you for any help anyone is able to give.

@beatitnow Hi Amy, I was on the big 3 for 2 years, 3 days a week with no results. My dr changed me to daily big 3 and inhaled Amakacin and it worked to close my cavities and get rid of the nodules, but some nodules have returned after stopping the Amakacin. Good luck