1. < MAC & Bronchiectasis

Alternative Treatments for MAC: immunotherapy, etc.

Posted by jspremich @jspremich, Apr 5, 2018

I was diagnosed with MAC a little over 2 years ago. Have not yet starting taking antibodies. Although I suspect this will happen in the very near future. Has anyone explored alternative treatment, i.e. immune therapy?

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maureengdds | @maureengdds | 1 day ago
In reply to @blm1007blm1007 "Hello maureengdds- Some good information for you so far on the thread. If I may ask,..." + (show)
@blm1007blm1007

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

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I am very sorry Barbara. We were told that the specimen was too foamy and they were unable to get a strain.

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maureengdds | @maureengdds | 1 day ago
In reply to @bayarea58 "@maureengdds the below list is from a website, ntminfo.org, for doctors in Michigan. Depending on where..." + (show)
@bayarea58

@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

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Thank you so very much!!

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rbl | @rbl | 1 day ago

I make a smoothie every day with 6 oz yogurt that has good protein, 1 cup frozen or fresh fruit and Fairlife milk till it’s thin enough to drink. When I needed the extra protein I added the protein shake instead of milk or a scoop of protein powder. When I was on antibiotics it was a good way to get my yogurt in. It makes a big smoothie but I just take my time.

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pacathy | @pacathy | 1 day ago
In reply to @maureengdds "Yes, she is doing both albuterol and saline nebulizers, plus symbicort. . Unfortunately, the cat scan..." + (show)
@maureengdds

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

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I’m so sorry your family is going thru this. I have not been on big 3 but know from my time here that sometimes the meds and med schedule is modified in order for patients to tolerate it better. You might discuss that with her physicians.
Is the saline hypertonic? Many of us use 3 or 7%, preferably 7 since it’s thought to inhibit bacterial growth. It helps get mucus out. That is another thing to consider.
One other thing to help with weight is to maximize number of calories in every bite and swallow even if using cream and other things considered “not healthy.” We used to say “no free liquids” meaning every swallow had calories.
Good luck to you. It’s so hard to watch family suffer.

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irenea8 | @irenea8 | 23 hours ago
In reply to @becleartoday "Hi Irene! I understand your concern but when a person is drastically underweight with BE/NTM the..." + (show)
@becleartoday

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

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Thanks Linda, Well I am one of those people drastically underweight. Pseudo for sure. MAC suspected but never grows. But with my GI issues/food sensitivities and close to diabetic I find the sweet very off putting and just cannot drink it. But I can see how most people could/should. I did try Orgain. It was super sweet! But thank you so much and I will check out these other options. Barbara posted home made protein smoothie that I will try.

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1 reply
gigiv | @gigiv | 22 hours ago
In reply to @maureengdds "Hi Barbara! My mom just turned 91. Up until last year she was swimming every morning..." + (show)
@maureengdds

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.

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@maureengdds , did your mom try Red Light Therapy? Some people in this group have added it to their toolbox and they seem to be happy with the results.
Some doctors used it successfully on Covid lungs also. There are some YouTube videos on it (e.g. dr. Anderson, etc).
It seems to be quite helpful at reducing inflammation in the lungs. If there is less inflammation, there is less infection (I do believe this, but I could be wrong).
Best wishes of great health to all of us!

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becleartoday | @becleartoday | 22 hours ago
In reply to @irenea8 "Thanks Linda, Well I am one of those people drastically underweight. Pseudo for sure. MAC suspected..." + (show)
@irenea8

Thanks Linda, Well I am one of those people drastically underweight. Pseudo for sure. MAC suspected but never grows. But with my GI issues/food sensitivities and close to diabetic I find the sweet very off putting and just cannot drink it. But I can see how most people could/should. I did try Orgain. It was super sweet! But thank you so much and I will check out these other options. Barbara posted home made protein smoothie that I will try.

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Hi Irene,
Yes, a homemade shake would be best. But, I find that some of the people I speak with don't have the energy or interest to regularly make shakes. Perhaps a solution might be to make a two-day batch so you only have to fuss every other day. Or, maybe you can freeze portions-worth a try.

A nutritionist who works with chronic lung disease and diabetic populations sent me this email when months ago I asked for nutritional drinks that are not sweet:

"I routinely recommend: Kate Farms 1.4 or 1.5 (these are the higher calorie shakes that Kate Farms offers), Ripple, Orgain, Owyn, and Koia. There are others too!
She really wants to pick the highest calorie shakes - Kate Farms 1.4 or 1.5 (1.4 and 1.5 calories per mL) are her best bets."

I hope you find one that works for you. Be sure to let us know.

Warm regards,
Linda

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ktw1147 | @ktw1147 | 26 minutes ago

I make my own yogurt. Recently I decided to try almond milk yogurt (recipe called for Almond milk, plain gelatin, cornstarch and Store-bought plain unsweetened yogurt). Yuck! I didn’t want to waste it so I put it in the blender with fresh almonds a frozen banana and some peanut butter. After refrigerating, it ended up almost like a creamy yummy ice cream! It is high in calories and tastes like a treat…. and YAY, I am gaining weight!

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