(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!

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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

@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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@kathyg Hi Kathy. Do you still read posts on Mayo Connect? I pray you are doing well.

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@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

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Unfortunately, evidence of the benefits many derive from a number of treatments does not exist…I think our group members' experiences say volumes

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Regarding coliadial silver
My naturalpathic Dr put me on it, so he must believe there is some merit. Mayo clinic doctors have sent him patients they haven't been able to help.
I have read up on its use quite a bit on and know it was used extensively before antibiotics and they still use it for burn patients There won't be extensive testing on it unless big pharma figures out how to make it into a drug for profit.
I don't think it alone has helped me or if it helped me at all. I always took a pretty small amount. I do know there was a problem with silver salts and all acumillating and causing blueish color.
But saying all that I wouldn't be comfortable nebulizing at all until research was done on it. There could be contaminates in the solution or something. I'm pretty careful about what I inhale avoid dust, scents smoke. I know that when bacteria comes in contract with silver from what I have read can't exist and it doesn't become resistant to colidal silver.
But I have an open mind and will keep researching.
Thanks for your concern!
Shari

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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/

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@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!

Liked by heathert

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@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.

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@suzyluc I get intermittent twitches too on the meds

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@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

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@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?

Liked by alleycatkate

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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????

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@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.

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@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/

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@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

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

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@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.

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

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@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

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@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!

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@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/

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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

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@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

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@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. ??

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