I was recently diagnosed with Bronchiectasis.

Thank you Colleen. I contacted mayo clinic in Jacksonville but was told they are not taking any more Medicare patients for at least a year. I am so disappointed! I am so desperate to find a good doctor for my husband.

Diane, if I was sitting in your shoes here is what I'd do. I takes work .. but I've done it for my husband .. and I'll bet you will do it for yours!

1. I would google "Infectious Disease Doctors" and then "Pulmonologists" within reasonable driving distance from your home or whatever you are willing to fly to.

2. Google the name of each. Check into each bio.
a. Check to see if MAC/MAI is ANYWHERE in their area of interest .. papers they have written .. ANYWHERE in their bio
b. Look to see where they went to school. I feel the tougher the school they went to .. the brighter they probably are.

3. If you find more than one
a. call and ask: How many MAC patients has the doctor treated in the past 12 months
b. explain your husband's situation and try to get him in ASAP

I hope the above helps just a little bit. Don't give up. I am a great "googler" .. It takes time but it is amazing what you can find on bios by going from link to link. Sending you a hug in this tough time! Katherine

Thank you Katherine. I will get to work on this!

Good for you Diane! Just develop your plan .. and work that plan! You go girl! Good Luck! Hugs! Katherine

Was given the news of having the mycobacterium abcessus at the end of nov. Totally sent me on an crazy feeling i have an infectious disease doctor. Imipenem and amikacin for 2 months . Now on claritromyc, ciprofloxacn anddoxy-cycline 2 times a day. This has been trying but i am feeling better. According to our control disease center they did not know how to treat this disease. Just had another CT scan and do not see the dr for about 2 weeks. Not fond of going out anymore.

Dear @patw,(do you have a first name) I am going to answer you despite the fact I have been lying low .. my wonderful members have been taking up the slack answering VERY well!

I am taking the time to answer you because getting a diagnosis of mycobacterium abscessus is not that common .. but we share that. I also did. BUT I came out on the other side and you will also! BUT it bugs me to have you be told 'According to our control disease center they did not know how to treat this disease.' Well, THEY are VERY misinformed .. or poorly educated .. OR just don't want to make the effort!!

You can tell them that My doctor, Dr.. Timothy Aksamit at Mayo Clinic, Rochester Minnesota CERTAINLY did know how to treat this disease when I was diagnosed in 2007!! He certainly did NOT whine and say he didn't know what to do! Here is what I was prescribed .. YOUR situation may be different .. I am jus saying this is what I did:

per day: Azithromycin 250mg ..Avelox 400mg ..2-Rifampin 300mg .. Amikacin 2ml-inhaled 5x week Ethambutol 800mg

One important question I would be asking you Infectious Disease doctor: How many MAC patients have you treated in the past 12 months? THIS will tell you just how knowledgeable this person is about our shared disease! You want someone who KNOWS!!

@patw, I really glad you found us .. you will find a really supportive community of people .. I would encourage you to read the pages of the main Forum to educate yourself to our shared disease ..then to post any questions you might have .. we have really nice people here. I just jumped in because not many people share the mycobacterium abscessus .. it is more difficult to treat. Hugs to you in this tough time. Katherine

Check out: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=25

Thank you for the info. I had IV for 2 months but I only take 3 pills twice a day. It is rough sometimes due to stomach painI see the dr in a couple of weeks and I will ask how many mac patients she has. 

Dear @patw, .. do you have a first name? When you see you doctor .. you might notice in previous posts up above from @tutti .. that she says "I feel very lucky that my doctor in Cleveland will be working with the doctors at the Mayo Clinic on my treatment.' Why not ask your doctor ALSO to consult about your treatment of mycobacterium abscessus .. BECAUSE it IS more difficult than the usual MAC. I would advice you to be your OWN best advocate! You are only given one body in this lifetime .. and NOBODY cares about it as much as you do! NO DOCTOR for sure .. YOU need to do your 'due diligence' in getting the very best medical care possible!

In terms of the stomach pain .. have you been diagnosed with GERD? Are you taking medication for it? It is very common with MAC. Ask your doctor about it. Until then:

* Prop up the bed. When you stick blocks under the head of your bed and raise it 6 to 8 inches, gravity will prevent the acids in your stomach from flowing into the esophagus during the night. Tight waistbands can aggravate your GERD symptoms. Wear looser clothing, especially at night. YOU COULD DO THIS .. which a good friend of ours did with his GERDS .. RAISED HIS BED VIA BED RISERS .. read the reviews $18. Home-it Adjustable Bed Risers or Furniture Riser bed lifts in Heights of 8, 5 or 3 Inches Heavy Duty Set of 4 bed riser
https://smile.amazon.com/Home-Adjustable-Risers-Furniture-Heights/dp/B00MH74S16/ref=sr_1_cc_1?s=aps&ie=UTF8&qid=1484857546&sr=1-1-catcorr&keywords=bed+raiser
ALSO Helpful: *fluid restriction 6 ounces an hour including yogurt ice cream....no eating 3 hours before sleep...no laying on right side when sleeping....anatomically it encourages fluid from stomach to go into lungs.

Another thing:
ANTIBIOTIC ..MY PERSONAL EXPERIENCE WITH SCHEDULING ANTIBIOTICS
These would be my suggestions to you based on my experience and my research:
**Make SURE you request a “test for antibiotic sensitivity after your sputum culture showed MAC” .. so your doctor KNOWS exactly WHICH antibiotic will be effective for YOUR particular mycobacterium!!
**With my history to drug sensitivity .. I requested that I start ONE DRUG at a time for ONE WEEK .. or at LEAST 4 days before adding a second drug .. so I could tell EXACTLY which/what drug was causing ANY potential side effect and I could isolate it .. hopefully watch for a side effect dwindle etc. THEN introduce a SECOND DRUG. Frankly WE are in the driver’s seat in our own lives .. our own bodies. Take charge and request that type of schedule if you want it!
**Below is what worked for me .. but keep in mind .. Basically everyone experiments with what med schedule works best for them:
1. PROBIOTIC: take probiotic half hour before breakfast on an empty stomach (when on meds I also took a 2nd probiotic in the evening on an empty stomach)
2. RIFAMPIN: Take this medicine on an empty stomach .. OR either 1 hour before or 2 hours after food NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds! (Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Be aware it can cause: Reddish discoloration of Stool or Urine etc.) FOR ME Rifampin caused sleep disturbance so I tried to take it FIRST THING in the morning!
3. ETHAMBUTOL AND AZITHROMYCIN: BEST with an empty stomach! .. BUT either 1 hour before, or two hours after meals! (taking BOTH at one time gives “greater punch!” (NOTE: take 4 hours after vitamins: as minerals and most other supplements weaken effect of meds!) * take with a LIGHT snack at most.

Hope some of the above helps! Sending you a hug! Katherine

Hello, my name is Bri. I am 25 years old and got diagnosed with Bronchiectasis about 1.5 years ago. I present with many symptoms and have a constant cough. I am lucky that I was able to be seen at Mayo so quickly after my diagnosis as it is very severe for an unknown reason. I did not have any illness or infection that is thought to have caused it. I am in the middle of being tested for everything under the sun... hopefully answers will come soon! Just wanted to introduce myself in hopes that this support will help ease some of the angst.

It is Pat. Thanks again for information. I called my dr this morning because my hands and face were red and swollen. No meds until I see her Tuesday.