Absolutely you must have a doc....either pulmo or ID...who fully understands MAC! Best is to find well regarded docs then call the office of each and ask about their knowledge of MAC. I find that the front line staff know immediately.

Here is a post of Katherine's from last January that I kept. Also, I know she made a checklist of questions to ask because I used it once. I can't find it in my file cabinet now, but I would bet it's in the first 30 pages or so of this forum. Linda

Reply
These are the notes I have made on finding a good doctor .. good luck! Hugs! Katherine

INFECTIOUS DISEASE DOCTOR
1.GOOD Infectious Disease doctor locally. Just google it
2. call the various offices .. ask to speak to a nurse .. ask 'How many MAC patients has your doctor seen in the past 12 months?' If a NURSE in the office does not even KNOW what MAC is .. that is a pretty good tip off that office does NOT treat MAC patients!
3. Request an appointment with the BEST ID doctor locally you can find
4. I would collect AN/Y/ALL medical records I could get my hand on from ANY/ALL doctors you have seen. It may take them emailing you Authorizations for Release of Information .. BUT DO get started.
5. Having read ALL the back pages of this Forum .. done your 'due diligence' .. educating yourself .. you will NOW have a LONG page of questions and will KNOW exactly WHAT the ID doctor SHOULD be doing for you .. or NOT doing.

Hello, I am new to Mayo but I would like to share what my 71 year old husband is going through. He has severe COPD including Bronchiectasis. He also is in early stages of Alzheimers. He is currently waiting for the results to come back from his second sputum culture. The first one from mid-March resulted in a pulmonary Mac infection. The second culture will confirm the diagnosis. My husband has lost about 18 pounds in the past 1.5 years without trying. He is 5.6 and weighs 119. He also has been an anemic for the past 2 years. Due to his illnesses, he is currently on 15 prescription drugs. I am wondering, if he is confirmed to have Mac, if he should go on the strong antibiotic treatment.

@suzie2017 Hello Suzie, welcome to our group. Wow, it sounds like tough times for your husband. That is a lot on one plate. This has got to be hard on you too. As far as whethet or not he should go on treatment for mac; that is something to discuss with his doctor. That doctor must be a good one that knows his stuff about treating mac. Be sure to ask the dr about the test results. Ask what specie the mac is, ask about the suseptibilty test results (that is a test on the bacteria to see which antibiotics will work), ask about colony size. Sometimes, if the colony size is minimal, it is possible for the infection to go away on it's own. He may benefit from a prophylaxis treatment with antibiotics. That is where he would take alternating monthly antibiotics that is easier on the body. He also needs a good Infectious Disease specialist to work with his pulmonologist. There is a lot of information on our site about mac if you want to take the time to read from past posts & other areas on this thread. Please feel free to ask questions or share things here on Connect. We are here for you. P.S. please tell your hubby that I hope he gets to feeling better soon. Tell him too that once the mac gets knocked out, he will regain his weight. I am putting mine back on as fast as I lost it. Will you keep us posted on how he is doing?

Yes, welcome Susie! You will find a wealth of information on this forum as well as the kindest and most caring people I have had the privilege to email. I am so sorry for your husband. My husband has the same things minus the MAC. I have MAC. He has Sarcoid instead. Alzheimer’s is the scariest of them all I think. I hope you have family support. My husband is 72. Sending you a hug.

Hi @lindam272
Here's the link to Katherine's "Questions to Ask" message for your file cabinet.
https://connect.mayoclinic.org/discussion/update-on-treatment-of-mac/?pg=3#comment-63228

I'll also paste her Questions to Ask here:

From KATEMN
From my File Cabinet:
QUESTIONS TO ASK OF DOCTOR
This is the question form I use when I see my MAC/Bronchiectasis doctor. This is merely the form I put together for myself .. cut/pasted from numerous sources .. use it .. redesign it for your own needs or whatever. You could easily copy/paste/ADD SPACES FOR NOTES/redesign it for your own use. Hope it helps someone! Hugs! Katherine
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
Questions to Ask Your Doctor-LUNGS-MAI- Bronchiectasis
DOCTORS’ NAME: PHONE #: FAX #:
_______________________________________________________________________________________________________
Questions To Ask Your Doctor
DOCTOR: _________________________________SPECIALTY______________________ DATE_______________
1. Where is the MAI/Bronchiectasis located currently? Are there new areas or new changes? At what stage would you say it is on a scale of 1 to 10? How does it compare to my last appointment for each.
2. Are the drugs I am taking currently effective for the two mycobacterium/Bronchiectasis?
a. Are the dosing level for each medication effective or do they need to be adjusted? b. What period of time before one of the medications can be adjusted or eliminated?
3. Based on the current progress how long would you project that I would me to be on the medications?
4. What monitoring will I continue to need? When will I need my next: a. Follow up appointments with you? b. X-rays/ CT scans
c. Monthly Lab work
d. Hearing testing
e. Vision testing
f. Monthly salt induced Sputum Cultures (Hypertonic Saline Induced Sputum Culture)
5. How long would you anticipate the side effects of night sweats/sleep disturbance/fatigue/oral thrush/dry mouth/geographic tongue to continue? a. Do you have any suggestions for coping with the less serious side effects?
6. Do you agree with the current Medication Schedule I am following?
7. Do you suggest any other lung clearance devices? How often/when?
8. What cleaning methods do you suggest for lung clearance devices? Method/How Often?
9. When/how do I still take my stated Prescriptions/ over the counter medicines /vitamins / supplements?
IF SUGGESTED NEW Medication:
1. a. Spelling of new drug I will be taking b. dosing level of each new medication c. what period of time before the next medication d. how long do you expect me to be on the medications e. any new monitoring will I need f. any side effects will I likely to have g. which side effect should be reported immediately h. when/how do I take each of these medications/ what schedule should I follow g. Will I also need new inhalers? h. SALINE NEBULIZED TREATMENTS with Aerobika?

Thank you very much. You provided me with some excellent information and good questions for the doctor. It will probably be 2 weeks before we get the 2nd culture results back. I am glad to hear that you are doing better and gaining your weight back. I will get back to you.

@colleenyoung -You rock, Colleen! Thank you! Linda

@colleenyoung - Cracks me up that this was page 24. Katherine would be so pleased to see the activity on this forum! Linda

You're so right, Linda. This discussion remains the longest thread on Connect with now almost 6000 messages. Boy, did Katherine hate it when I called it a thread. She said that made it sound too little and she is right. This is a community!