I can't imagine dealing with Cancer and MAI. I was on three drugs until I<br />
couldn't tolerate the rifampin. It gave me chills, dizziness, rash. I'm<br />
only on the 2 others. My guess is that the rifampin is giving you side<br />
effects. Most people do OK on the other two. The side effects also go away<br />
over time. Also must take good probiotic to counteract the meds. Keep us<br />
posted how you are doing.<br />

Nick, you have found a good source of information and support .. stick with it! These are all good people of good will I have found!

For myself I found on my 30 months on Rifampin the only side affect was sleep disturbance. So I made sure I took it first thing in the morning with food. That seemed to help with my sleep some. I will say that after I stopped the Rifampin .. sure enough my sleep improved. My instinct that the problem was Rifampin proved to be correct.

Good luck on your journey toward taking care of yourself . the advise you have been given I can only second!
Katherine

Good to hear from you Nick. My prayers are with you. The antibiotics are chemical therapy in and of themselves, and to be subjected to more chemotherapy... keep us posted with your progress and we are here for you!

Best wishes and with love,
Melissa

Hello Nick and Paula, Please tell me the name of your Pulmonologist from Central Florida I am in need of one I am presently being tested at National Jewish Health but I cant stay here indefinitely. My home is in Central Florida. I sure hope the best for all of you, as I truly understand the difficulties involved with this disease. I am quite weary and hold on to my faith to get me through all the unknowns and trials. Thank you for sharing.

I am also in Central Fla and I go to University of Fla at shands in<br />
Gainesville. I had a Dr Fennelly who was excellent and specializes in MAC,<br />
he was the director of Nontuberculous Mycobacterial Disease program but he<br />
has moved on so now seeing another dr there who also seems quite good. has<br />
replaced him. Dr. Moguillansky . Their phone if you are interested is 352<br />
265 0139<br />
<br />

In the Orange City/Lake Mary area (Volusia County/Seminole County), Dr. <br />
Karuna Ahuja.<br />
http://www.FLHeartLung.com<br />
<br />

Lainey, I am in Milwaukee (southeast Wisconsin) and not Florida. I go to the best teaching university & affiliated hospital around, and see the specialist in MAC. I'm about 6+ hours from the Mayo Clinic, and if I didn't go to such a great doctor and teaching hospital, I'd go to Mayo. My pulmonologist told me several years ago that Mayo Clinic was doing a study on patients with MAC; don't know the outcome of that. Seems all of us here are not the 'typical' people with this nasty disease - - we're not immune compromised (having organ transplant, AIDS, etc). Sure wish there was a study for the common factors among us, that we ended up with MAC for years.
Someone here recently mentioned they found exercise so helpful with MAC and why doesn't the medical profession push exercise. I think the medical profession is way behind when it comes to the benefits of exercise! I asked my pulmonologist why he doesn't write a prescription for Pilates or yoga or some exercise to promote enhanced breathing. He said they felt most women like me do some form of exercise like yoga. Really??
I'm glad to report that I am having the best health this winter than I've had in 8-10 years. Plenty of exercise, rest, and taking my 3 meds every other day.

melissa23 - I've read your blog posts; boy, the VA is not doing right by you! Several others here have posted their thoughts on what to do when you see your doctors next! PLEASE keep us posted! Will be crossing my fingers for you.

Paula and Melissa, I would tell you that it depends on the doctor re:<br />
exercise. My beloved Dr. Aksamit at Mayo Clinic, Rochester MN asks me<br />
EVERY visit about my level of exercise .. and encourages me because of the<br />
beneficial affects on my lungs and overall health. This even when<br />
I was not/felt I could not exercise due to the back pain resulting from the<br />
horrific coughing. He just kept quietly encouraging me to exercise.<br />
<br />
So I began again in May .. doing really well on my Nordic Track and yoga ..<br />
but hurt my back again with a DUMB move with a Kettle Ball exercise! Now<br />
after steroids, physical therapy etc I am hoping to get back to my exercise<br />
program .. encouraged by my Pulmonologist!<br />
-- <br />
*Interesting about the Mayo MAC/MAI study .. I have not been invited to be<br />
a part of?! Oh well.*<br />

Thank you Paula for your response!<br />
I had just purchased a Palates video and now I am even more determined to be disciplined about using it! Plus I do have the Aerobika and an Elyptical exerciser. Also I am convinced to go beyond my county knowing the importance of finding a better, more informed Doctor ( esp. after hearing what Melissa has been through). I guess I was just concerned about what to do in an emergency/ urgent situation But shy of relocating, I suppose you have to hope for the best and get to the specialist as soon as possible. I am actually thinking That it wouldn't be a bad idea to have my MAC Dr.'s name & contact info (also NJH contact info) on a medical bracelet or anklet. ??<br />
It is VERY good news to hear you are feeling better. I've been blindsided with this diagnosis and even more so with the prognosis of MAC Just trying to wrap my head around it and do any and everything to beat it. Sure appreciate your encouraging words<br />
To All: Prayers for strength and courage and blessings to all who are in this struggle <br />
<br />

Are you doing ok? It has been a year since you wrote.terri