1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- 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
- 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!

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

beatitnow | @beatitnow | Jun 17, 2018

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!

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1 reply
egayle187 | @egayle187 | Jun 17, 2018

@beatitnow...Yes, the weird feelings seem to come with Clarithromycin for me. I also get the bugs crawling under my skin, but I'm not sure they are only associated with meds. For the past 5 years I have been on Clarithromycin more than I have been off.These symptoms have not been dangerous, just irritating I have nerve problems and have gotten relief from acupuncture.

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suzylulu | @suzylulu | Jun 17, 2018

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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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 17, 2018
In reply to @suzylulu "Beat it now, I am on the big 3 3X week. I also get these weird..." + (show)
@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

@suzylulu, That sounds horrible.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 17, 2018
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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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boomerexpert | @boomerexpert | Jun 17, 2018
In reply to @pfists "@boomerexpert I use colloidal silver also for over a year now. I use a low dose..." + (show)
@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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pfists | @pfists | Jun 17, 2018

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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23 replies
heathert | @heathert | Jun 18, 2018

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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4 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 20, 2018

@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!

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1 reply
Jo Ann K | @jkiemen | Jun 20, 2018
In reply to @suzylulu "Beat it now, I am on the big 3 3X week. I also get these weird..." + (show)
@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

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