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.

Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 17 10:30am
In reply to @helen1000 "To sum, any disease comes from genetic or digestive issues, or unhealthy life style. You have..." + (show)
@helen1000

To sum, any disease comes from genetic or digestive issues, or unhealthy life style. You have to find deep rooted reason, change the life style, exercise, reduce stress, eat the right food and take the right medicine. It is not just antibiotics!!!

Jump to this post

I would add environmental exposure and prior illnesses to the list of causes. Neither of these would fall under the other causes you listed. There are probably others as well.
Many cancers and lung conditions can be traced directly to exposure to toxins, which in many cases were either not known as toxins at the time, or could not be avoided.
Many late-life ailments, like post-polio syndrome and bronchiectasis, can be traced back to childhood illnesses.

REPLY
1 reply
helen1000 | @helen1000 | Jul 17 1:12pm
In reply to @sueinmn "I would add environmental exposure and prior illnesses to the list of causes. Neither of these..." + (show)
@sueinmn

I would add environmental exposure and prior illnesses to the list of causes. Neither of these would fall under the other causes you listed. There are probably others as well.
Many cancers and lung conditions can be traced directly to exposure to toxins, which in many cases were either not known as toxins at the time, or could not be avoided.
Many late-life ailments, like post-polio syndrome and bronchiectasis, can be traced back to childhood illnesses.

Jump to this post

Yes Sue, you are correct! My grandfather had TB when he was in his 20s in army, and bronchiectasis in an older age, but he still lived up to 90+ years old.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 22 11:15am
In reply to @helen1000 "Hey guys, here is a Pulmonary Rehabilitation Beginner Exercise. You can also google on internet and..." + (show)

Hello Helen - here is the short link if you want to edit your post;


To all - if you find a long link like this to a YouTube video, just click "View on YouTube" and it will open a window with the direct link.

REPLY
helen1000 | @helen1000 | Jul 26 5:30am

Good morning,

I started the journey of antibiotics yesterday. 🙂 Starting from Ethambutul 1200 mg last night with my dinner. Friday is a better time to start Armikacin inhalation definitely. The logic is if you feel anything wrong, you can rest at home during the weekend. My insurance won't approve Arikayce because I have to wait six months. But my NP says Armikacin has no more side effects than Arikayce - probably they are the same but just different brands? I will introduce Azithromycin 250mg and Clofazimine in next two weeks. I am glad that my NTM doctor only gives me 250 mg AZ as I want to keep my good appetite.

As I am taking two medications that will cause hearing loss and two medications that may cause vision problems, and all will cause GI problems, I find that glutathione helps with hearing loss. Probiotics/ yogurt help GI problems. Vinegar + Coffee may help vision as vinegar is fermented food and coffee has a lot of antioxidants. NAC helps with thinning mucus. Fresh veggie/fruit/exercise also contribute a lot to overall health and benefit mitochondrion.

Will see how it goes. 🙂 Good luck to us all.

REPLY
1 reply
helen1000 | @helen1000 | Jul 27 6:02pm

Just finished my fist course of inhaled amikacin - no feeling but do feel vocal cord becomes tight. I rinsed my mouth with salt water and drink a lot of honey water during the process. I also find this article on how to fix a horse voice - humidifier seems to be an effective way, keeping vocal folds hydrated, helping with the vibration of the vocal folds and therefore reducing roughness and hoarseness.
https://theconversation.com/how-to-actually-fix-a-lost-voice-according-to-science-hint-lemon-and-honey-doesnt-work-158230

REPLY
helen1000 | @helen1000 | Aug 2 8:05am

Hi Guys, I am trying various diet to make my guts less sensitive. I recently cut milk, wheat and rice and my guts become much better. I had chinese cabbage with chicken / shitake mushroom/potato as dinner with all big THREE antibiotics yesterday but I only had one formed bowl movement the whole day. I am not sure whether it is probiotics I take also help too. But I hope you can try the best fit food for you and keep your guts healthy. Good luck to all fighters in this forum. I wish everyone rebuild their health after years's fight! Nutrition and exercise always help!

REPLY
1 reply
robinzemp | @robinzemp | Aug 3 11:16am
In reply to @helen1000 "Good morning, I started the journey of antibiotics yesterday. :-) Starting from Ethambutul 1200 mg last..." + (show)
@helen1000

Good morning,

I started the journey of antibiotics yesterday. 🙂 Starting from Ethambutul 1200 mg last night with my dinner. Friday is a better time to start Armikacin inhalation definitely. The logic is if you feel anything wrong, you can rest at home during the weekend. My insurance won't approve Arikayce because I have to wait six months. But my NP says Armikacin has no more side effects than Arikayce - probably they are the same but just different brands? I will introduce Azithromycin 250mg and Clofazimine in next two weeks. I am glad that my NTM doctor only gives me 250 mg AZ as I want to keep my good appetite.

As I am taking two medications that will cause hearing loss and two medications that may cause vision problems, and all will cause GI problems, I find that glutathione helps with hearing loss. Probiotics/ yogurt help GI problems. Vinegar + Coffee may help vision as vinegar is fermented food and coffee has a lot of antioxidants. NAC helps with thinning mucus. Fresh veggie/fruit/exercise also contribute a lot to overall health and benefit mitochondrion.

Will see how it goes. 🙂 Good luck to us all.

Jump to this post

Resubmit insurance. They now allow Arakayce to be prescribed at beginning of treatment - although your insurance may not. They put me on a program that cost $10 per month.

REPLY
1 reply
helen1000 | @helen1000 | Aug 3 11:29am
In reply to @robinzemp "Resubmit insurance. They now allow Arakayce to be prescribed at beginning of treatment - although your..." + (show)
@robinzemp

Resubmit insurance. They now allow Arakayce to be prescribed at beginning of treatment - although your insurance may not. They put me on a program that cost $10 per month.

Jump to this post

Thanks a lot! We tried in June and was rejected. I will double check with my insurance.

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