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.

irene5 Irene Estes | @irene5 | Jul 3, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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I think if you have a card you are ok. My infectious disease doctor insisted I get one because of my weight. And there are so many different kinds and ways to use maijuana! I have the product but haven’t used it. I’m so not a party gal! I think the sticking point would be using it in a state that hadn’t legalized it. The vape pens are very discreet and don’t produce much odor. The CBD oil is great for arthritis! My PCP told me that! Even my pulmonologist said it is ok for me which I think is crazy! I’ll let you know if I ever use it. It costs mega bucks though as it is not covered by Medicare. Irene

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Jennifer | @megan123 | Jul 3, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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Hi Nick....Canabais Oil will be legal in Canada in a few months...I think when your health continually deteriorates and nothing is working effectively, I think the journey becomes one a personal choice..

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 3, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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Hi all,
As your discussion has turned to cannabidiol (CBD), a naturally occurring cannabinoid constituent of cannabis and medical marijuana, I thought you'd appreciate the following information that I posted in the Chronic Pain group. Below I've gathered articles and information to help give some guidance about the evidence, regulation (or lack thereof), and legalities of CBD use in the US. It's not an exhaustive list, but a starting point to help you with your own research and decision-making.

1. Evidence vs usage
To date CBD to treat epilepsy (in children) is the only condition that has some scientific evidence supporting its use in some cases. CBD for pain, anxiety, inflammation and sleep remains as yet scientifically unproven and requires more validated research.

According to this article by NPR (https://n.pr/2HnI1SM), “By one estimate, the CBD industry has doubled in size over the last two years, and is now worth $200 million. But with this popularity the hype may have gotten ahead of the science.”

While there is promise and ongoing research into CBD effectiveness in managing pain, anxiety, inflammation and sleep, the jury is still out. Here are recent articles that help clarify.

– CBD Oil: All the Rage, But Is It Safe & Effective? (WebMD) https://wb.md/2K11QfD
– Does CBD Really Work For Anxiety? (HuffPost) https://bit.ly/2wF1VUs
– Anxiety Relief Without The High? New Studies On CBD, A Cannabis Extract (NPR) https://n.pr/2HnI1SM

2. Industry is unregulated
CBD is not regulated. “Because of the legally murky nature of marijuana, the FDA has not stepped in to regulate products like CBD oil.” States are struggling to put regulations in place. … Meanwhile, a 2017 study led by Bonn-Miller found that nearly 7 of 10 CBD products didn’t contain the amount of marijuana extract promised on the label.” Read more about regulation in this WebMD article (https://wb.md/2KCS4UW).

There are risks associated with medical marijuana CBD. See this post from a Mayo Clinic pharmacist (https://mayocl.in/2KDyip2). People should also consider interactions with other drugs and always discuss the use of CBD with their medical provider and consult with a pharmacist.

3. Concerns about attracting sellers and fraudsters
With the increasing activity related to CBD on Connect comes the unwanted attention of commercial sellers of product and fraudsters. Mayo Clinic Connect’s Terms of Use (https://connect.mayoclinic.org/terms-of-use/) prohibit “any material which … (viii) contains any information, software, or other material of a commercial nature; (ix) contains solicitations or advertisements of any kind; (x) constitutes or contains false or misleading indication of origin or statement of fact…”

Our Moderating team keeps a watchful eye for people with commercial interests posing as members on Connect. If you see posts that contravene the Terms of Use, please report them. Here's how: https://connect.mayoclinic.org/page/about-connect/tab/moderators/

4. Is it legal?
It has often been stated or asked about the legality of CBD in all 50 states. According to this article in Forbes “CBD is not legal in all 50 states (https://bit.ly/2KFY2nV) — even though it is widely available. At best, the law is murky and open to differing interpretations.” Canada is changing its laws for both medical and recreational marijuana use. It's important to know the law in your jurisdiction.

– Is CBD Legal? The Legal Status of CBD in 2018 (Medium) https://bit.ly/2EEuwYB
– The legal status of cannabis (marijuana) and cannabidiol (CBD) under U.S. law (Elsevier 2017) https://bit.ly/2tk68Zu
– State Medical Marijuana Laws (2018) https://bit.ly/1udxSs4

5. Information from Mayo Clinic
Mayo Clinic provides the following information on medical marijuana https://mayocl.in/2KyrGvp

6. Get informed
Information about the use, efficacy and legality of CBD and medical marijuana is constantly being updated. Do your research. It is advisable to talk with a health care professional if you have questions.

REPLY
Brenda R. | @brigby | Jul 3, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@colleenyoung WOW, Colleen, thank you and bless you for all the wonderful information!

REPLY
Brenda R. | @brigby | Jul 3, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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@yayaaz, Hi, this is Brigby, I just rec’d the Hemp Oil I ordered on amazon and I am taking 1-2 dropper full orally 2x daily. So far I don’t notice any changes/improvement with my arthritis/inflammation, or the amount of phlegm/sinus mucus I have.

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auntnanny | @auntnanny | Jul 3, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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brigby…… thank you for your post. Would you please post again after you've taken it a while and let us know. Besides bronchiectasis, I have tremendous arthritis that nothing seems to help

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irene5 Irene Estes | @irene5 | Jul 4, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

Jump to this post

Must be why I always err on the side of caution! Thank you Colleen.

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nick52 | @nick52 | Jul 4, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

Jump to this post

@megan I agree with you it is a personal choice.  It cost my friend 2000$ and she saidit was a steel and she live in hell when using it.  My cousin has a prescription for pain and it is a pill prescription for fibromyalgia  and said it work very good for her.

 All I am saying is be careful With CBD. Nick

REPLY
Flib | @flib | Jul 4, 2018
In reply to @america "Hi, I’m new on this chat so please any help would be great. I also have..." + (show)
@america

Hi, I’m new on this chat so please any help would be great. I also have MAC since 2012 and was on meds for 6 months. I got really sick and had to stop. I’m always so tired and and can’t do much of what I use to do. I have lost 40 pounds and feel very weak. Just need to talk with someone who understands this disease. Thanks.

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Hi brigby. I had a lot of mucus also. I finally started taking Clear Lung faithfully and it has really helped.Worth a try.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 4, 2018
In reply to @yayaaz "My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It..." + (show)
@yayaaz

My Aunt is 89 years old. She has had bronchiectasis for quite a few years. It was not as serious until recently. She was diagnosed with MAI/MAC a couple of days ago and will see her doctor tomorrow for treatment. Her doctor told her Medicare/Medicaid won’t cover the treatment. The doctor will send a letter asking for a hearing to allow her to have the medicines needed. Do you have any other ideas that might be helpful? She will not have the money to pay out of pocket for the lengthy treatment.
Also, I’m concerned how she will withstand the treatment.
Thank you for listening and for your help.

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@pamelasc1 Hi Pam. I just found this post of yours today. Please remember to begin your posts with @windwalker or @whomever you are responding to; otherwise, your message just floats around. I found it by accident.

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