(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Hello Ellen, myself .. never had a bit of trouble with the inhaled Amikacin .. bothersome in terms of time issue but no nausea at all! In using the baby bottle sterilizer and having a weeks supply of nebulizers .. really it was not that big a deal .. I am just a whiner! Not too patient! Just never had any issues with it .. good luck with it! Hugs! Katherine

Hello Katherine! I hope you got my email with my name. My daughter set me<br />
up and thought we had to be careful with our name. Now I don't know the<br />
link to get on the Mayo news letter or whatever I was on and saw yours and<br />
others post. Can you give that to me? I will be going to Mayo on the<br />
15-16th. Hope I can see Dr A as I have some issues since I am not on any<br />
meds right now.<br />
<br />
Ellen<br />

Yes...I have RA, and pulmonologist now suspects I have MAC...getting bronch on Tuesday although unsure if such an invasive dx tool necessary without doing a sputum first...checking on that... I live in Tampa and can find no good docs here...really have to travel to Gainesville for top notch doc for this infection?? Or CO...or MN...?! Does everyone here know that no meaningful research has been done on this infectious disease, and the same approach to treatment has been used for at least 20 years? Sheesh...And that's in spite of the significant increase in cases. I, too, have extensive reservations about taking so many heavy antibiotics...with such ridiculous side effects. I live alone so must be able to function. Anyone here in FL want to share a trip to Gainesville with me? 🙂

Hello!
I am an active 59 year old woman with pulmonary MAC and aspergillosis. Just started my year long treatment,3x week with three antibiotics. I am having major problems with acid regurgitation. Tried everything: splitting up the dose into two meals, drinking lots of water, light evening meal, not lying down and only taking the meds during the day...my mouth is burning and it is hard to imagine a whole year like this. On a positive note, this is my only side effect. And since my MAC was diagnosed fairly quicly, I also have few symptoms, apart from the occasional asthma. Any pointers on avoiding all this acidity?
Thank you so much!

Yes. Try acidopholis...works wonders to replace the good bacteria the antibiotics are killing!

Kate,
Enjoy reading your blogs. I just found out that I have MAC also. I read some articles about MAC hides in the pipe of the water. Do you take extra precaution with tap water?

Thanks.
Ana

Hello Ana
MAC is a pretty common microorganism. It is found pretty much everywhere. In water, even in salt water, in house dust, in soil, animals and birds...the only reason some of us become infected is because of some underlying condition which allows for the growth of such microorganisms in our tissues. The most common reason a person becomes a host to MAC is when there is a compromise in immunity. Like in AIDS patients for example. Pulmonary MAC is found in folks with underlying lung disease, such as COPD or asthma, as it is my case.
Aside from taking the 12 month course of the 3 prescribed antibiotics, my doctor has not recommended any additional environmental precautions.
All the best to you!
Liliane

Enjoy reading all this information as well. I was diagnosed in January of this year and I have had so much trouble taking the 3 meds. I am now trying essential oils, which seem to be helping. The meds were horrible........even caused my teeth to turn orange.....I grabbed the Crest strips immediately! I am finding that cooler, damp/wet days are much harder than sun/warm days. The meds are so expensive, even with good insurance and they caused me to be in bed REALLY sick for 17-24 hours and being a school teacher I could not do this. I am getting an appointment with an Infection Control Doctor today and seriously considering changing from my Pulmonologist.

Liliane,
Thanks for your note. Have you tried kefir? You can make your own and it has lots of probiotics.

Ana

Hello Liliane, when I started my treatment of 5 antibiotic Dr. Aksamit of Mayo Clinic immediately recommended that I take a daily probiotic. I did a bit of research .. and for myself decided to seek out 3 different brands of the MOST billions of probiotics that I could find. That way I felt I would get the advantage of various types of probiotics .. I rotated daily the 3 brands. So in thirty months of taking 4-5 antibiotics I did not get a single yeast infection.

Because I also have GERDS (acid reflux) I personally take a daily Aciphex tablet AND have raised the head of my bed by 5 inches. This can be done simply by using "bed risers"

( http://smile.amazon.com/Greenco-Super-Strong-Furniture-Storage/dp/B00M9FXFG0/ref=sr_1_2?ie=UTF8&qid=1463723955&sr=8-2&keywords=bed+risers+4+inch "

.. raising the head of the bed helps a lot.

In terms of the burning mouth. Ask your dentist if you have developed "Geographic Tongue" .. google it .. you will be able to tell if you might have it. My dentist recommended using VERY LITTLE "Colgate PreviDent 5000 Plus" toothpaste. Plus I read .. and it has helped .. swish 3x per day a mixture of 5-10 drops of GSE Grapefruit Seed Extract mixed in one cup distilled water. I find that "swishing" for several minutes helpful

Hope this is helpful! Wonderful that you were diagnosed early! Sending you positive energy! Katherine

UPDATE:
June 16, 2016
Just went to my wonderful dentist .. mentioned my "burning .. painful tongue". He told me "geographic tongue" .. is NOT painful! He diagnosed "thrush" and gave me a prescription of Oral Nystation that he is having me "swish" around my mouth for 2 minutes 4x daily. Then because I have had it for so long he feels I have it inside my body so rather than spit it out .. he is having my swallow the Nystatin. I am very grateful for such a smart dentist! Hope he does not retire too soon!