@tdrell, there are a few of us here with NTM/MAC that live in SE Wisconsin, and we have fabulous docs. If you're in Central or Northern Wisconsin, the Mayo Clinic may be the closest for you.

Your daughter lives in Denver? There's a lecture in Denver on Sept 17th for patients & families with NTM/MAC that was posted on the American Lung Association blog -- your daughter (or you) may want to attend. It's at the Molly Blank Conference Center, National Jewish Health Main Campus in Denver. Best wishes to you! - Paula

Welcome tdrell .. so glad you found us! Since you live in Wisconsin you are very close to Mayo Clinic in Rochester MN. You certainly can choose to visit your daughter in Denver .. two birds with one stone .. but if you choose a doctor close by .. my doctor at Mayo Clinic specializes in MAI/MAC. He is Dr. Timothy Aksamit and I can tell you .. he is one of the most caring people on this earth .. I just don't know how I could have done this without him. If you read through the pages of this Forum to educate yourself .. and I HIGHLY recommend you do so .. Due Diligence! .. you will find some others who go to him. It is absolutely your call .. but it gives you an option. If that is what you choose to do .. call 507-266-0415 as soon as possible because he is pretty popular and not quick to get into.

Again, I am so glad you found this Forum at the beginning of your journey .. despite it being a scary thing it is positive to FINALLY have a name for what on earth is happening to your body! Putting a name to the "face". Now it is VERY important for you not to "freak out" .. and start thinking that if you need to start the antibiotic treatment that you are going to have all the crazy side effects that are in the ridiculous inserts that come with the meds .. OR the side effects that perhaps a different person may experience! YOUR body is YOUR body .. and it will react the way YOUR body is going to .. for the period of time YOUR body is going to react! Each of us is unique .. and the time period it takes us to adjust to each of the meds will be different .. SO just go with the flow. "Trust the Process" .. trust that the antibiotics will kill those critters .. trust that your body will adjust .. trust that time will heal .. AND trust that all of us will be here to help and support you through your journey! Then I trust that you will be here to help other new people through THEIR journey when they arrive .. we are all in this together! I am sending you a Big Hug .. keep coming back .. with your questions .. with your concerns .. when you need us! Katherine

Katherine
Absolutely, the drugs are not as bad as all the hype, in some cases. It started out badly for me, I was ready to give up, but stuck with nausea and horrid fatigue when first on the drugs. 4 weeks later, I'm much better, blood work for kidneys and liver is fine, and I'm praying the drugs are working. Will report in 10/6 after my Mayo Rochester appointment with Megan Dulohery who works w Dr Aksomet.

Re Dr Aksomet, I could not get into home, or to any Mayo Pulmonary doc with a MAC diagnosis. A doctor friend got me in. I think you can call back daily and try for a cancelation but I don't want anyone to think it's an automatic to get an appointment. Or, maybe you have a suggestion on how to go about it I did not know about. Does a referral from another doctor help? How did you do it? Just in case someone calls for an appt and is turned down initially, doesn't mean you won't get in. Mayo is a great place, I feel I'm getting some of the best care possible that is close to me. I did have National Jewish lined up for an appointment, staying in Denver for a week would have been costly, but I would have gladly done it. I think finding a doc that knows NTMs is really key.

Thank you Katherine and everyone for your ongoing posts.

Kay S

tdrell and Kay S, I'm SO glad you pointed this out .. the difficulty of getting into Dr. Aksamit. I think that because I was diagnosed in 2007 .. BEFORE he became so "famous" .. I can now get in. BUT in my last appointment he said he now works .. as Mayo Clinic does .. with a "Team" of Pulmonary people in MAI/MAC. SO I wish I had told you tdrell to call that phone number and request a Pulmonologist that WORKS as a TEAM with Dr. Aksamit! That is a MUCH better approach. Truth is I think it is pretty tough to get into him now .. AND my understanding as doctors at Mayo work as a team and discuss things with each other .. the team approach. So your working with Megan Dulohery is EXACTLY what I am thinking of .. a direct conduit to Dr. Aksamit.

Frankly .. people fly into Mayo Clinic from all over the world .. never having a clue WHICH person they are going to see .. and are just grateful they are at "Mecca" .. so I am happy to have access to all these wonderful people and their knowledge of my disease! I think one key to an appointment with a Pulmonologist at Mayo is to make an appointment as far out as necessary .. tell them you will also take any cancellation thereafter .. THEN once you have just ONE appointment .. you are "on the books" .. and you won't have that much trouble ever again. You just have to get that FIRST appointment .. that is why book an appointment even if it is months ahead! Just get started .. that's my opinion. Hope this clarification helps a little! Katherine

Hi @kaystrand,
I noticed you added your picture as an attachment to your post. If you would like to add your picture to your profile, here's how:

1. Click the “Profile and settings” or avatar button in the top right.demo profile button
2. Select “Account Settings” from the drop-down menu.demo account settings drop-down
3. Scroll down to the “SITE PROFILE” section.
4. Click the “Upload Photo” button to the right of the page under the “PROFILE PICTURE” heading.demo upload photo button
5. Click “Choose File” to select a photo from your files. The file cannot be larger than 5 MB and must be in a JPG, GIF or PNG format.demo choose file button
6. Your photo will then appear in the avatar box as it will appear on your profile. Once you are happy with your photo selection, click “I’m finished. Close this popup.”demo close this popup button
7. The popup will close and you’ll be back on the profile page. To finish, scroll to the bottom of the page and click “Save Profile.”

Here are the instructions with pictures: https://connect.mayoclinic.org/get-started-on-connect/#how-to-upload-profile-picture

Thanx a million for the heads up re theworkshop in Denver on Sept 17... We<br>were all ready planning a visit starting on Sept 16! So will plan on<br>trying to attend! Look how quickly positive items are coming as a result of<br>this connection! Thank you!<br>

Wondering about names of doctors to try to make an appointment with in Denver at Natl Jewish hospital...two names pop up for NTM....a Dr Charles Daley... And a Dr Shannon Kasperbauer.... DR Daley is older...has an amazing long resume...Dr K has a shorter but impressive one.

I am all signed up Paula for the conference and I started the process to be a patient at Natl Jewish Hospital.
next day 8/24/2016
Just had a data gathering phone call from NATL Jewish Hospital Nurse Laura as pre planned....the beginning of the journey to be seen there....very thorough...now l have to gather two years worth of all the testing results to submit to the Dr's who will review the records in advance....and she said will be sending their own culture kit.
stay tuned....terri

Thanks great, Terri, that you're registered for the Denver conference and going to the Natl Jewish Hospital. Please let us know your impressions of the conference and how it all goes at the hospital for you. Best wishes!

Traveling tough for me w/RA so not able to get to Denver (I'm in FL).<br><br>But look forward to hearing what comes of it..hopefully something useful at<br>last rather than just more discussion.!