(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@heathert, Hello Heather. Thank you for this post, it was an interesting read. I added it to my notes on medications. Everyone, do note, that this medication is used when pseudomonas aeruginosa has become RESISTANT to using tobramycin alone. These are good notes to collect in case any of us are ever in that situation; and we could be at some point. I think it is great that you subscribe to CF News Today, as having bronchiectasis is very similar to CF. Many of the drugs used to treat CF is also used for us with broch/mac. I subscribed to that publication as well, thanks to you! This will help us stay on track with what new meds and treatments are coming out. Kudos Heather!

REPLY
@suzylulu

Beat it now, I am on the big 3 3X week. I also get these weird body sensations. Often it is like an electrical shock often causing arms and legs to jump. It also hurts under the skin can’t describe the feeling.

Jump to this post

@suzyluc I get intermittent twitches too on the meds

REPLY
@alleycatkate

@pfists. Hi Sharri…I have pulled up and have been reading all of your past posts as I am interested in the Bidens and Cryptolepsis for preventative measures. I am asymptomatic for MAC….just diagnosed about month ago. I see you went from pos to negative. Do you still feel that you are getting great results with these two tinctures?? Any more you can say about them? I also noticed you mentioning licorice and, shoot, now I forgot the other one but it sounded like it was for Gerd? I am have my shopping cart sitting with the two tinctures and thought I would touch base with you before I ordered. I am feeling like a bit of a maniac with ordering many alternative measures…but, if they bring success, why not? I've always gone the alternative route anyway. Thanks for any input. Kate

Jump to this post

@alleycatkate, Licorice root is good for cough and clearing lungs. (not gerd) There are measures to take to avoid GERD. Are you familiar with them?

REPLY

windwalker …… I just picked up my culture report which says "Few Mycobacterium avium complex isolated"…… I'm faxing it on to Mayo's but wondering if this will mean I will have to start with heavier meds. Your opinion????

REPLY

@windwalker @alleycatkate licorice root, or more specifically Deglycyrrhizinated Licorice (DGL) Root (I use Enzymatic Therapy brand and get via Amazon) are designed for stomach relief and wo/raising blood pressure. I've been using it regularly and have experienced a distinct reduction in my throat clearing and mucus production that I now know was coming from my stomach. Hope this helps.

REPLY
@heathert

Hiya just found this interesting article in the cystic fibrosis news , basically how adding the MS drug Glatiramer to tobramycin, , the killing efficiency increased by up to 71%!!! https://cysticfibrosisnewstoday.com/2018/06/13/ecfs2018-multiple-sclerosis-treatment-glatiramer-acetate-aids-antibiotic-in-killing-pseudomonas-aeruginosa-strains/

Jump to this post

@heathert Hi, Heather, Thanks for that article. I've signed up for the newsletter and also sent that link to my CF doctor asking if taking the amino acids in supplement form would have any benefit with the tobramycin. Still waiting to hear from my insurance on whether I can get coverage for the treatment. I will let you know what I hear back. Linda

REPLY

@boomerexpert ..Thank you!! Will be adding DGL to my never ending list (haha) of things to get for this disease! Appreciate you sharing!
Kate

REPLY
@boomerexpert

@windwalker @alleycatkate licorice root, or more specifically Deglycyrrhizinated Licorice (DGL) Root (I use Enzymatic Therapy brand and get via Amazon) are designed for stomach relief and wo/raising blood pressure. I've been using it regularly and have experienced a distinct reduction in my throat clearing and mucus production that I now know was coming from my stomach. Hope this helps.

Jump to this post

@boomerexpert – I might give that a shot. I've been taking omeprazole daily for heart burn and would love an alternative. Linda

REPLY
@alleycatkate

@pfists. Hi Sharri…I have pulled up and have been reading all of your past posts as I am interested in the Bidens and Cryptolepsis for preventative measures. I am asymptomatic for MAC….just diagnosed about month ago. I see you went from pos to negative. Do you still feel that you are getting great results with these two tinctures?? Any more you can say about them? I also noticed you mentioning licorice and, shoot, now I forgot the other one but it sounded like it was for Gerd? I am have my shopping cart sitting with the two tinctures and thought I would touch base with you before I ordered. I am feeling like a bit of a maniac with ordering many alternative measures…but, if they bring success, why not? I've always gone the alternative route anyway. Thanks for any input. Kate

Jump to this post

@windwalker…I have tried alot…HCL, apple cider vinegar, slippery elm (which was the most effective but not quite cutting it anymore), enzymes, very restrictive diet etc…Have not tried Ginger…Any ideas? Think if I cannot get this issue to go naturally I will need to do a rantadine or one of the more innocuos approaches to digestive issues. Just ordered a good probiotic per Nick! I had not realized that GERD could impact the lung! Yikes!

REPLY
@heathert

Hiya just found this interesting article in the cystic fibrosis news , basically how adding the MS drug Glatiramer to tobramycin, , the killing efficiency increased by up to 71%!!! https://cysticfibrosisnewstoday.com/2018/06/13/ecfs2018-multiple-sclerosis-treatment-glatiramer-acetate-aids-antibiotic-in-killing-pseudomonas-aeruginosa-strains/

Jump to this post

This is very interesting for us who have had pseudomonas. It is more or less amino acids from the looks of it.
Is it available for use now or still is testing stage?
Shari

REPLY
@pfists

@boomerexpert
I use colloidal silver also for over a year now. I use a low dose matenace dosage but more if I feel a cold coming on. I haven't had any known side effect, I just get it on Amazon. My natural practitioner recommended it. I also feel the best I have felt in a long time and no mycobacteria Abcessus showing up.
I have heard of people nebulizing it but I don't feel comfortable with that. Maybe there should be some testing done on it to see if it's safe and effective the inhaled route.
Shari

Jump to this post

@windwalker…Hi Terri. I have used colloidal silver now for probably 20 some years. It has been a very effective antibiotic for me taken orally and also used topically. I have cleared horribly infected cat bites with it in the past. I make my own…I've never had an issue with it's safety …and I am still not blue! My brother is currently nebulizing it for what he feels is an infected root canal that he feels can best be reached with a nebulizer. ??? Not quite sure how colloidal silver could best be implemented for MAC…and not sure about guiniea pigging with the nebulizer. I still have questions and concerns and reading to do. ??

REPLY
@beatitnow

Hi everyone! I have not written in a while, nor been on to review comments. My name was BEATITNOW, I'm not sure if I'm still a "part" of the group with my name coming up. I have been on the Clarithromycin, Ethambutol, and Rifampin for about 13-14 months now…and I still have at least another year. I am ready to take my sputum sample next week to see if the infection is gone. But, MY QUESTION IS….have any of you felt slightly "weird" sensations through your body in taking the meds? Like sometimes it's like there is a bug on/ under your skin for just a couple seconds and then it goes away. Or, sometimes it is like a slight bit of pins and needles on a very small area. This will go on through out the whole body randomly and just every so often. Has anyone experienced anything similar or have any suggestions? I need to get in touch with my doctor on Monday, but I wasn't sure if this was something to try to stop taking the meds for a period to see if it would resolve. Thanks for any help or suggestions you can give!

Jump to this post

@beatitnow yes it happens to me i was feeling  like having ants under my skin or tingling weird sensation.  My Dr told me to take probiotic with my antibiotic to avoid the sensation but the probiotic as to be taken 4 h. Before or after the antibiotics.  It

has worked great for me.  It is a secondary effects for some people. Nick

REPLY
Please sign in or register to post a reply.