Alternative Treatments for MAC: immunotherapy, etc.

Oops! Posted. a reply to the general discussion and meant it as a reply to your concern. No way to delete it and move it here. Sorry if you have to go on a hunt:) Linda

Irene-
I make my protein smoothie with Greek Yogurt, Banana, Mango, Pumpkin Protein Powder by Sprout Living, and our well filtered/clean drinking water. I always use the banana but I do change the fruits. It is not thick and is not sweet. No particular measurements so you would have to find the right measurement combination for you. For me, I can't get past the thought, just yet, of adding greens to it.
Hope this sounds like something you might be able to try.
Barbara

Sorry to hear about your Mom.
What age group is your Mom?
Has your Mom had other chronic health problems in the last few years besides the mucus lung problem?
Is she able to do the huff coughing with airway clearance techniques considering all you have said?
It sounds like your Mom's Body Mass Index is low??? Building the BMI up is hard sometimes to do, but so very important....It goes along with keeping the immune system strong, as you probably know.
Wish there was a magic wand to help your Mom and us with all that she/we have to concern herself/ourselves with in dealing with it all, it isn't easy and especially hard when trying to get under control multiple concerns.
Hope suggestions given in this Mayo site will help.
Wishing you both all good answers that you have questions about.
Barbara

Thanks Barbara, That sounds fairly easy too. And that protein powder is just pumpkin seeds! Do you get mangos fresh where you live? I think I would have to find canned here at this time of year or use canned peaches. Is it very sweet tasting? I am pre diabetic but close to diabetic. I will order that protein powder. Too much zinc is not a good idea for pseudomonas (as far as I understand) but a natural source should be ok and I do not need to drink it every day either. I eat goat yogurt. Anyway thanks so much!

@maureengdds for refractory MAC, which it sounds like your mother has, there is a fourth inhaled antibiotic Arikayce. Arikayce is an inhaled form of amikacin, which is more commonly given for severe MAC disease by IV. Is your mom’s doctor an NTM specialist? It doesn’t sound like it as there are other drugs than the Big 3. I don’t know your mother’s age and overall health profile so this may not be feasible but as you say you are looking for a “Hail Mary” my suggestion would be to seek out an NTM specialist and see if they can come up with a drug regimen that is more tolerable for your mom. It can often take time to get into see an NTM specialist but if you describe your circumstances perhaps they can get your mom in on an expedited basis. If you let us know your general geographical location we can let you know if we know of an NTM expert near(ish) you.

Fruits for example: Mangos frozen.
I will look for goat yogurt and try it. Thanks.
Barbara

Hi Barbara!

My mom just turned 91. Up until last year she was swimming every morning and walking laps in the pool at the gym. She was 90 so it wasn’t marathons mind you but she was still strong.
She survived breast cancer twice. Both times over 25 years ago. Last year at this time I got the flu. She drove three hours to bring me flu supplies and communion because I missed church. So this weight loss and dramatic down turn came up pretty suddenly. Maybe the last 6 months. I know she’s lived a long life. Just hoping we could eeek out a bit more.
Thanks so much for commenting. I know she’s in Gods hands and those are some pretty powerful hands!! I appreciate the chat. Praying for everyone with this crazy MAC disease! Hoping they come up with a better treatment soon. I was thinking of immunotherapy, or hyperbaric chamber or designer T cells. This bug is so common. I don’t know if it’s strength comes from the bacteria itself or if it’s just its sheer numbers and how rapidly it multiplies.
Again, thank you for commenting. I truly appreciate it.

Gosh, thank you so much! I had no idea there were NTM specialists. Do you any idea where to start? We live in Michigan.

@maureengdds the below list is from a website, ntminfo.org, for doctors in Michigan. Depending on where you are in the state, you may be closer to doctors in a nearby state (a general consideration, though perhaps less so with Michigan), so you can go to the website and look for other nearby states as well if that may apply to you. I have no personal experience with the below doctors (I live out west). Good luck! Not everyone tolerates the antibiotics (though many do) but sometimes it’s just one of the antibiotics that is the most problematic. You need a doctor well versed in NTM to help your mother sort it out. There are not a lot of NTM specialists, but they do exist. The “top tier” NTM specialists are likely National Jewish Health in Denver and Mayo Clinic (MN and FL). But many universities have medical facilities with NTM specialists, off the top of my head Oregon, Washington, Texas/Tyler, North Carolina. I know many here are treated at NYU-Langone. Nearest to you, it looks like Western Michigan University may have an NTM treatment program. Again, good luck. Please let us know how else we can help.

PIMPAWAN BOAPIMP, MD – INFECTIOUS DISEASE
Western Michigan University School of Medicine
1000 Oakland Dr
Kalamazoo, MI 49008
Tel 269-337-4300
VILMA DRELICHMAN, MD – INFECTIOUS DISEASE
22301 Foster Winter Drive, 2nd Floor, Suite 200
Southfield, MI 48075
Tel 248-552-0620
STEPHEN GALENS, MD – PULMONARY
Pulmonary & Critical Care Associates
44344 Dequindre Road, Suite 410
Sterling Heights, MI 48314
Tel 586-262-5100
50505 Schoenherr Road, Suite 340
Shelby Township, MI 48315
Tel 586-314-0080

Hello maureengdds-
Some good information for you so far on the thread.
If I may ask, because I may have missed it and it may help with further information...What did the doctor say the sputum tests indicated, the MAC strand that your Mother has? What is the specific name of the bacteria.? Was that indicated to you?
Barbara