(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.

@ginak

Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps no one has been posting that much any more. Just checking in to be sure I'm still connected.
Thanks
Gina K

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We are in BAngor Maine now and as soon as I get home I will send you the ingredients and a phone number where you can call. I also had a treatment for mucus for food sensitivities and now I hardly have mucus. 

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@ginak

Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps no one has been posting that much any more. Just checking in to be sure I'm still connected.
Thanks
Gina K

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@nick52 that is so interesting, I haven't heard of that before, how did they test for food sensitivities and what treatment did they give you?
I feel like dairy sugar and gluten/yeast affect me. Heather

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@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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Nick, are you the same Nick who came to the Atlanta Support in Atlanta? If so, I also use Clear Lung and Broncolin cough syrup W/ honey and Propolis. Both are awesome! Walking and doing any exercise has helped my o2 immensely!
Jan/Ga. ( I have not been on in months)!

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@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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No I am not I am from NB Canada. I buy my clearlungs when we spend summer in Florida at Nature's food patch. 

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@ling123

@colleenyoung Colleen, yes, I do receive daily digest every single day. Just no email notifications for any posting from this group, MAC & Bronchiectasis. I can see it under Groups in my profile. Does that mean that I'm following it, or do I need to click Follow?

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Hi Colleen I am virtuous 69 and I'm in the chronic pain and depression groupd. I followed suggestions on how to get out of the Mac Mai group. I' go down to the bottom and hit unsubscribe. I've gone to my profile I've done everything that I've been told to do and I still get those emails. please cease and desist
sending me anything for Mac bacterium avum etc. I really badly get to the depression group thank you again signed a Dori for to a 69

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Hi all Thought I would share what is on "Bronchiectasis Today "it involves MAC treatment and nitric oxide and bronchiectasis. You can go to the website and have a look at the posts mentioned here.

Bronchiectasis News Today Weekly Digest
Contents:

The post Electromed’s New Bronchiectasis Advisory Board to Help Guide Clinical Research Plans appeared first on Bronchiectasis News Today.

share on Twitter Like Electromed’s New Bronchiectasis Advisory Board to Help Guide Clinical Research Plans on Facebook

Recent Posts
Researchers Identify Novel Genetic Mutation in SERPINA1 Gene as Potential Cause of Bronchiectasis

Aradigm Awarded Grant to Investigate Treatment of Pulmonary Mycobacterial Infections with Ciprofloxacin Therapies

Nitric Oxide Delivered to First Patient Enrolled in Phase 2 Trial for Serious Respiratory Infection

Bronchiectasis is Leading Risk Factor for Chronic Cough, Danish Researchers Find

Researchers Identify Antibodies That Could Predict Whether Bronchiectasis Patients Develop Rheumatoid Arthritis

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@ling123

@colleenyoung Colleen, yes, I do receive daily digest every single day. Just no email notifications for any posting from this group, MAC & Bronchiectasis. I can see it under Groups in my profile. Does that mean that I'm following it, or do I need to click Follow?

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Hi @virtuous, it looks like you have two accounts on this site. I don't know how that happened. But when I type in @virtuous, I can see two listings showing up, one is: virtuous69 (@virtuous69) and the other is: virtuous69 (@virtuous). I suspect that you still have this group listed under one of these two accounts. Besides clicking on the unsubscribe link at the bottom of the emails, have you done the following:

1. Log in to Mayo Clinic Connect web site (or you can just click on the Review and Reply in one of the emails to get to the web site), click on the symbol that shows a person in a circle right under Mayo Clinic Connect in the upper right-hand portion of the page.
2. Select My Profile.
3. Once the My Profile page opens, take a look at what is listed under Groups.
4. Any group listed there that you no longer wish to follow, just click Edit, then the down arrow to the right of the group name. Select Unfollow. Do not notify me about this anymore.
5. After you have done the above, scroll down to the bottom of the page and click Save. If you have done #1 - 4 but did not do Save, your changes will not stick.

Because you have two accounts with different handles (nick name with @), I don't know if you are using both with different password, or you are using one and have abandoned the other. If you have abandoned one of them and that one happens to be the one that is connected to this group, I will need to remove/close that account. Unfortunately I don't know how you should go about doing it. I wonder if @colleenyoung (Colleen) will be able to help you find out.

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@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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Cherry do you have CTScan or x-rays? Do you have nodule in your lung also?

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@ginak

Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps no one has been posting that much any more. Just checking in to be sure I'm still connected.
Thanks
Gina K

Jump to this post

@heathert, Heather, I have the same food sensitivities as you. Especially sugar and gluten. I wonder if there is a correlation? Hmmmm, might have to look into that. It is interesting to me; I could not eat gluten things since I was a child up until this past year. Since I have been treated with tobramycin,; I can eat small amounts of bread without getting all gunked up in my lungs. Sugar doesn't affect me as badly as it used to either. Weird, huh?

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@ginak

Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps no one has been posting that much any more. Just checking in to be sure I'm still connected.
Thanks
Gina K

Jump to this post

To Windwalker and Heather

Treatments for Allergies and sensitivities

Developed by Dr Devi Nambudripad from Buena Park California 

NAET ( Nambudripad Allergy Elimination Technique) is natural, drug free, painless and non-invasive and can be used safely from infants to the elderly.  The brain re-learns what it once thought of an allergen

and interprets it as a harmless, acceptable substance.  The nervous system learns an entirely different response to the same stimulus and you become allergy free - permanently 

Check on the internet if there is a clinic of practitioners who administers NAET treatments.  It includes an allergy test and 10 basic treatments!

My experience: 

to me it was like a miracle to stop mucus in my throat .  I had stop eating butter because I would have too much mucus and also the cheese.  Now I can eat butter and cheese and no mucus.  Sometimes it

comes very little more like throat hum! Hum! but doesn't last long like before and no spitting.

I also can take sugar and many others which I was sensitive. All chemicals or scents like soap, perfume, cutex , wood smoke, cigarette smoke, etc was bad for my breathing now I hardly smell it and it

doesn't bother my breathing any more.  It is almost unbelievable.

My insurance cover 80% of all the treatments except the allergie test 100$.  It is worth the money.  You do not need to stop eating thise specific food but got to be moderate.  If you feel you have difficulties

with certain food it is highly recommended.  It work miraculously!  

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