Oceanbliss,
Sorry you had a very negative doctor that gave you no hope. That is wrong on many levels!!

Usually if you keep calling Mayo they have several cancellations and you get in much sooner.
Never heard a doc say not to pursue treatment for this. I just was diagnosed in July 16 and am taking the big 3. I was nauseated at first, they take adjustment, and some folks can't tolerate them. But they usually work, so why would this doctor not have you even try?

I go to Mayo, but I hear Minn Heart and Lung is good. I know Park Nicollet ID treats with the big 3 also. Sorry I don't have names, but tell either place you want a doc that has treated MAC.

If you are not in Minneapolis I would call Pulmonary and ID docs and find ones who DO treat MAC.

You can get well from all I'm reading, that's MY plan. All the best to you.

Kay S

Welcome @oceanbliss! I see you addressed @katemn specifically in your post. Katherine is travelling at the moment with no Internet access. This community is strong and I see you've connected with @kaystrand. Thanks Kay.

Oceanbliss, I recommend you take the appointment with Dr. Vassallo at Mayo Clinic. As Katherine points out in this message http://mayocl.in/2cap3wY "...in my last appointment [Dr. Aksamit] said he now works .. as Mayo Clinic does .. with a "Team" of Pulmonary people in MAI/MAC. ...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."

In other words, seeing Dr. Vassallo is a direct conduit to Dr. Aksamit and a whole team of expertise. Let us know how the appointment goes. I also encourage you to read all the messages in this forum, and ask any questions you have of the members to help you prepare for your appointment. Have you got any questions for us now?

I have not been firmly diagnosed yet for MAC but I already got the gloomy story of the side effects of medications. I wish you better advice and help with Dr. Vassalo and know that those on this forum really know what they are talking about. They have gone through this and have strength. Best, Kathryn

Oceanbliss,
So glad you found this forum! You will be in great hands at the Mayo. If they are too far to travel for your follow-up care there are other good doctors out there. One source to find them is on this website https://www.ntminfo.org/patients/physician-referral-list where they have doctors listed by state that are well versed in dealing with MAC and other NTM's. It's also a good website overall. Good luck. Hang in there and keep in touch.
Janet

Nate, Oceanbliss appt is in 2017, long way off. How does she get in sooner, aside from cancellations?

Kay,
I think she may have meant she couldn't get in to see Aksamit until 2017 but she'll see Dr. Vassalo later this month. Not positive but I think that's what she was saying.
Janet

Hi, I have just finished my treatment for MAC. The meds were not as bad as<br>what I had read about. I took Ethambutol 900 mg, 200 Azithromycin, and 600<br>mg Rifabutin for 15 months everyday. The worse thing was feeling tired. I<br>just paced myself and was able to resume most things. I had double whammy<br>as my husband passed away at the same time that I was so sick before<br>diagnosis and treatment was started. I was not diagnosed until about 3<br>months after becoming sick. Misdiagnosed and mistreated for 2 months.<br>Culture was positive but doctor did not look at the results. After repeated<br>chest x-Rays with no change got my records and sought another<br>pulmonologist. 1st month after drugs started there was a big change in<br>X-ray. Do the treatment. We only have one set of lungs and they are vital.<br>EK<br><br>

Oh that's good about the Dr Vasselo appt for Oceanbliss! Read that wrong.

I could not get a date with Aksomet ANYtime. They would not give me an appointment. I see his colleague however, so that's good.

While I'm here, anyone find they cough more stuff after awhile on meds? Wonder if that good or bad or neutral? I really don't feel much different, tired and occasional nausea. Hope the drugs are working. I'll know on 10/6!
Thanks all.

Hi Kay and Oceanbliss,
I may have interpreted incorrectly.
@oceanbliss, I had understood that you can see Dr. Vassallo this year, Sept 22, 2016. If you wanted to see Dr. Aksamit you would have to wait until 2017. Is that correct?

@oceanbliss, I can't believe that a doctor told you there was no point in taking the drugs because they're too harsh and you wouldn't get through it! I was diagnosed in April of this year 2106, am taking all three of the meds and have had no side effects. I'm a little tired sometimes. Yes, there are some that can't take the drugs but not everyone! I've been on them for four months, I take them at three different times during the day, one in the morning, one in the afternoon and one early evening. I also take two different probiotics once in the morning two hours before the first antibiotic and then one at night two hours after the last antibiotic. This forum is such a great support system. And I live in small town in South Carolina and don't have access to these great MAC centers like Mayo and Denver and Texas. Luckily, my pulmonoligist has had over 100 cases, though, of Mac in the past years in his practice so I feel pretty confident. Good luck. I would give the drugs a try. There's a lot of cheerleaders on this site and they're wonderful. And also, I started exercising four times a weeks to get my lungs working. My best friend is a doctor and she said that was a MUST. Hang in there. Nan from SC