1. < MAC & Bronchiectasis

Should I take Big 3 + inhaled ARIKAYCE

Posted by helen1000 @helen1000, Jun 5 11:21am

I am currently 48 year old, I have NTM- MAC with a couple of cavities (1.3 cm * 2.2cm , and 0.5cm* 0.5cm), the big one increased in size from last year ( it was 1.9cm * 1.2cm) and this small one (0.5cm* 0.5cm) is new. Also I have nodules in both lungs widespread. I am using Saline 7% but I don't know whether it helps with cavity. Also my sputum test turned from negative to positive this year. My doctor is concerned that the cavity will keep increasing in size and quantity so he wants me to start antibiotics as soon as possible. He is a great doctor.

I am deeply concerned about the side effects of big 3 + inhaled Arikayce, that my doctor is going to prescribe for me.

Do you think these antibiotics will help with MAC? I truly doubt about it. I did a lot of research, MCA is too hard to cure and it may come back. Not to mention the side effects... I also studies Sue's cases and she is doing really great with Saline 7% without extra antibiotics.

My doctor ( NY) also says they are going to study phage therapy next year. ( I shared my story about phage in Belgium in this forum ) But he says that any new type of antibiotics is not in the pipeline yet. So I am thinking maybe I should take antibiotics. He thinks maybe I can tolerate the medication because of my relatively young age. I don't have other diseases so far.

Do you have any suggestion for me? I am thinking of just closely monitoring with CT every three months. Really struggle with my decision.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

helen1000 | @helen1000 | Jun 26 9:35pm

Hi Mariegrace, thx for sharing your story. Did you try digestive enzymes for your IBS? I used Market American brand and it cured my digestive symptoms. I went to bathroom after each meal after using a course of antibiotics. Digestive enzymes works for me quite well!

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1fancydancer | @1fancydancer | Jun 26 10:12pm
In reply to @helen1000 "Hey ladies/guys, did some research on Probiotics/ collagen peptide, here are a list of the best..." + (show)
@helen1000

Hey ladies/guys, did some research on Probiotics/ collagen peptide, here are a list of the best I can find from internet. Some people also mention that probiotics should be taken 4-6 hours after antibiotics were taken. Still studying the collagen peptide said help repair for leaky guts.

1) VSL # 3 medical grade probiotics - contains 8 strains of bacteria found in human gut
2) Culturelle Pro Strength Daily Probiotic - only contains one strain - Lactobacilus rhamnosus (LGG)
3) Seeds DS 01 Formulated with 24 strains (not found in yogurt, most supplements, or and beverages)
4) Live Conscious Beyond Collagen Multi Collagen Powder

You are welcomed to give the recommendation or input about probiotics you tried or felt worked very well on you. Let's do some homework together to fight for the side effects of long- term use of antibiotics!!!

Here is also a link about an Austin Functional Medicine Dietitian who worked on how to prevent antibiotics side effects. She gave a lot of recommendation on food that contain probiotics like Kimchi, bone broth, etc. Broccoli seems to be a very healthy vegetable to lung, which I hate the most 🙂
https://www.plateandcanvas.com/

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Culturelle is the one my Infectious Disease recommended. I forget half the time and probably take it at all the wrong times. I need to pay attention and not just get accustomed to taking my meds at night or in the morning.

I love Broccoli. Crave green stuff. LOL

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1fancydancer | @1fancydancer | Jun 26 10:18pm

The key to winning with this stuff is catching it fast and treating it. I just suck it up and take the meds. I want to live to be an active old lady.

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helen1000 | @helen1000 | Jun 29 12:21pm

Daily findings about probiotics/ Gut/ Liver health - good luck to us all! 🙂

1) Another probiotics that won't be killed by antibiotics, which is to say, you can take it together with antibiotics. 🙂 But some research also says it may bring fungus infection. Please do check with your health provider before you take any probiotics.
Florastor-Daily-Probiotic- contains a yeast Saccharomyces Boulardii CNCM I-745 which won't be killed by antibiotics

2) Digestive enzyme - Market America brand ( search on amazon)

3) Bone broth for liver health

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sadies1mom | @sadies1mom | Jul 3 8:00pm
In reply to @dulwich "PS medications worked for me and no moreMAC for over two years" + (show)
@dulwich

PS medications worked for me and no moreMAC for over two years

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It is really encouraging to know you have been Mac free for two years! Please tell me how many years were you on the medication's and how many medication's? Also, I think I've had this disease a really long time and I'm not sure exactly how to phrase this next question but… Do you feel better now? Can you breathe more easily? Do you have more energy? Can you feel the difference now compared to when you had Mac actively?

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helen1000 | @helen1000 | Jul 3 9:05pm

Hey guys, just for your information - MAC can spread to more lobes of your lung if you delay the treatment. It is true!! I hope everyone takes active action and treat the disease sooner. We need strength and support, not fear and worry! 🙂

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pfurcht123 | @pfurcht123 | Jul 8 2:09pm

Hi Helen, I completely understand your ambivalence re these strong antibiotics. Also, the more we read, the more scary it becomes!!!! that being said, there is no way around the fact that MAC is insidious and all the saline rinses and healthy food will not eliminate it from our system. It lays in wait till we get another health challenge, a cold, a surgery and then, when we are compromised...it will blossom again and again. So, after having pneumonia for about 5 months (i would take an antibiotic and it would quiet down for a week, then return, antibiotics again, good for a few weeks , then return, finally had one pos sputum, and all the lung symptoms and radiologic findings that confirmed MAC. I took the suggestions offered on this forum, begin one med at a time with pre and post blood work, one week before you begin any and then one week after, when all is clear re blood work, start the next antibiotic. Ask for Uric acid blood test when start the Raphampin. I take meds in PM so few side effects during waking hours, then take probiotics morning and through out the day with the high probiotic foods I have added to my diet regularly now. Only have Azythro and Raf on board so far. My anxieties about taking the meds were much worse then any side effects I have experienced so far. Good luck and wishing you full healing.

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1 reply
helen1000 | @helen1000 | Jul 8 2:49pm
In reply to @pfurcht123 "Hi Helen, I completely understand your ambivalence re these strong antibiotics. Also, the more we read,..." + (show)
@pfurcht123

Hi Helen, I completely understand your ambivalence re these strong antibiotics. Also, the more we read, the more scary it becomes!!!! that being said, there is no way around the fact that MAC is insidious and all the saline rinses and healthy food will not eliminate it from our system. It lays in wait till we get another health challenge, a cold, a surgery and then, when we are compromised...it will blossom again and again. So, after having pneumonia for about 5 months (i would take an antibiotic and it would quiet down for a week, then return, antibiotics again, good for a few weeks , then return, finally had one pos sputum, and all the lung symptoms and radiologic findings that confirmed MAC. I took the suggestions offered on this forum, begin one med at a time with pre and post blood work, one week before you begin any and then one week after, when all is clear re blood work, start the next antibiotic. Ask for Uric acid blood test when start the Raphampin. I take meds in PM so few side effects during waking hours, then take probiotics morning and through out the day with the high probiotic foods I have added to my diet regularly now. Only have Azythro and Raf on board so far. My anxieties about taking the meds were much worse then any side effects I have experienced so far. Good luck and wishing you full healing.

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Dear Pam, thanks a lot for your sharing! Youw way to take antibiotica is super practical. And you make me more confident about antibiotics. 🙂 Regarding probiotics food, I have poke a bowl as lunch everyday, which contains a lot of ginger, kimchi, seaweed, and mushroomn which always make me gain weight. Sue also recommends home made yogurt ( she is so hard working and super smart!) I am still working and see whether I can keep it after I start a antibotics next week. Right now all prescriptions are ready for me. In addition, I am looking at milk thistle and artichoke which help liver function. Thanks for your blessing and I hope we all have a speedy full healing!!! When did you start a probiotics? Let's keep in touch. 🙂

Love, 😘

Helen

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1 reply
pfurcht123 | @pfurcht123 | Jul 8 6:50pm
In reply to @helen1000 "Dear Pam, thanks a lot for your sharing! Youw way to take antibiotica is super practical...." + (show)
@helen1000

Dear Pam, thanks a lot for your sharing! Youw way to take antibiotica is super practical. And you make me more confident about antibiotics. 🙂 Regarding probiotics food, I have poke a bowl as lunch everyday, which contains a lot of ginger, kimchi, seaweed, and mushroomn which always make me gain weight. Sue also recommends home made yogurt ( she is so hard working and super smart!) I am still working and see whether I can keep it after I start a antibotics next week. Right now all prescriptions are ready for me. In addition, I am looking at milk thistle and artichoke which help liver function. Thanks for your blessing and I hope we all have a speedy full healing!!! When did you start a probiotics? Let's keep in touch. 🙂

Love, 😘

Helen

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I found this delicious high level probiotic called COCOJUENE. It uses a coconut base vs dairy. it tastes like ice cream.....I have taken probiotics regularly thru the years but now have added the COCO and anything fermented >>>love pickles, sauerkraut and kimchi. I too work full-time and enjoy a very active life so want to stay healthy and strong!!

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1 reply
lshawster | @lshawster | Jul 8 9:26pm
In reply to @rstel7272 "Take it from me, you do not want long term cavitation. Scar tissue could form and..." + (show)
@rstel7272

Take it from me, you do not want long term cavitation. Scar tissue could form and then it's permanent or surgery time. Start the antibiotics as your Dr has ordered. Arikayce will be the toughest but they can work with the dosage or stop it earlier than planned. And always do your ACTs

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Did anyone have serious side effects from ARIKAYCE. Reading through the list from the drugs website is frightening! I was just told today that I need to start it.

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