Alternative Treatments for MAC: immunotherapy, etc.

Sue, thanks! Do you like the Voltaren gel? I'd never heard of it before.

Lori - I find it helpful because I have to strictly limit oral NSAIDS. Not everyone gets relief, but it is very useful for severely achy joints. Especially my hands, where I apply it over a beeswax cream and rub it in. The curcumin has helped a great deal too, especially with my bad knee, shoulders and elbows.
Generic versions of Voltaren are now readily available too.
Sue

Sue, I take CurcuminRich double-strength Theracurmin, which seems to help some. Naproxen wiped me out, so I take only mild OTC NSAIDS when I really hurt. I'll try the Voltaren idea. Thanks again! I've decided to stop taking NAC for a couple of weeks. However, I fell on Friday evening and needed 14 stitches in my forehead, so I'll have to try to figure out what pains are due to what problem 🙂

Phage therapy may be coming to clinical trials for MAC one day. I think I’m going to set my Google alerts and just try to keep my airways cleared through vigorous airway clearance techniques and pray for rapid advances in this emerging cutting edge science!

Are there any therapies besides the triple antibiotic avaiable yet? My mom has it and cannot take the triple antibiotic. She was unable to tolerate the side effects. Thanks so much

Has the doctor recommended daily airway clearance using saline solution in a nebulizer to help your Mom get the mucus out of her lungs? That is where the bacteria hides, and some people can clear out, or at least knock down the infection that way.

Yes, she is doing both albuterol and saline nebulizers, plus symbicort. . Unfortunately, the cat scan this week shows infection is spreading. Since trying the triple antibiotic therapy she has lost significant weight and strength. We are meeting with hospice tomorrow. I am just throwing a Hail Mary pass here…. Thanks

Maybe her airway clearance could be optimized. In addition to what she’s doing, she could use an Aerobika and perhaps get a vibration vest

Also, her nutrition is very important. Is she supplementing at all with drinks or through a feeding tube? In addition, there are medications to increase her appetite. Have you thought about making an appointment at National Jewish? One of the nutritionists there who has done a dozen webinars for NTM info and Research, a not for profit, also does individual consultations.

Message me if you would like more information.

Warm regards,
Linda Esposito

Does anyone make those type drinks without so much sugar or sweetners? I find it hard to understand why they make them so sweet. How is that possibly healthy!

Hi Irene! I understand your concern but when a person is drastically underweight with BE/NTM the primary concern is supporting the body with nutrition. Certainly, finding a supplemental drink that you feel works for you is ideal. Here are some options:

VHC or Boost Plus
Ensure EnLive/Plus
Bolthhouse Farms ProteinPlus
FairLife (lactose-free, high-protein shakes)
Kate Farms 1.5 (plant-based) - not very sweet
Orgain (plant-based options) - not very sweet

ConsumerLab.com's *Top Picks* for protein powders:
Now Sports Pea Protein Pure Unflavored - Overall Top Pick
PB&Me
Nutiva Hemp protein powder
Jay Robb Egg White Protein
Nutricost Grass-Fed Whey Protein Isolate — Unflavored (should be lactose-free because it's an isolate)
(Also approved = VegaOne French Vanilla)

Let's get some thoughts from others? Do you have a drink that you like? is it both high protein and high calories?

Best, Linda Esposito