(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.

@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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Janovr,

I wonder if you got my message?

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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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Dear Heathert,

It is very effective! Sorry for not answering before but I had not a good wifi since we were in Bangor Maine.  Here are the information.

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!

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 but doesn't last long like before. 

I also can take sugar 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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@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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Dear jkiemen,

Back home so here's my answer.  You wonder if it would interfere with azithromycin (antibiotic) according to my reading it is safe to take natural medicine 4 hours before or after chemical med. in case you decide to try it. 

These are the ingredients:

(Homeopathic/HPUS 30C each) Antimonium Tartaricum, Carbo vegetabilis, Natrum Sulphuricum, Phosphorus ........ lung decongestion

Inactive ingredients

Herbal blend: 750 mg/cap:  Chinese Asparagus root, Chinese Licorice root, Chinese skullcap root, Dog Quai root, Gardenia fruit, Lo Han Guo fruit, Ophlopogon root, Platycodon root, Poria Fungal body, Schisandra fruit, Tangerine mature peel, White Mulberry

root bark, Zhejiang Fritillary bulb.

For fast temporary relief of lung congestion caused by cold & flu, allergies, smoking, pollution, athletics or other causes. 

Check the book Prescription for NUTRITIONAL HEALING  written by Dr Balch

Hope this will help.  You could consult an Homeopath for info on the ingredients.  For me it work good! 

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@colleenyoung

@ginak @ling123 That's odd because according to the daily digest there have been 5-25 posts every day since Aug. 25 except Aug . 27. Do you both receive the Daily Digest?

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@nick52, No, not directly anyway. Katherine had a immunocompromised body. She had battled many other serious bacterias over recent years. She had picked up three other types other than MAC that were antibiotic resistant. They weren't the type we would normally come across. They are the ones picked up in hospitals. That is why I stress to avoid hospitals and nursing homes whenever possible.

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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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@tdrell, that is totally understandable. That is why I do not push my daughter into it. Unless she were to marry and want children. If your children develop health issues up the road, then, yes, they should get tested. Also, if they have already had the children they want, I wouldn't do it. I was so sick and ready to go on disability; that I didn't care who knew.

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@colleenyoung

@ginak @ling123 That's odd because according to the daily digest there have been 5-25 posts every day since Aug. 25 except Aug . 27. Do you both receive the Daily Digest?

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Wow! Hospital are really dangerous. I got the CDifficil once. They had me take acidophillus and bifido phylus ( yogourt capsule) Many people died from it! The Yogourt Cap gives you good bacteria to fight the bad one.

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@heathert, Heather, these are interesting factoids. Will look into the Serina 1 gene. Thank you for contributing this.

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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 I actually had heard of NAET treatment a long time ago and then forgot about it. I lived in Tucson, Az for 20 yrs. They are very big on holistic, naturapathic, and alternative medicine, along with Eastern Medicine. Not much of that where I live now. I had sensitivities to all of those too. Unbelievably so. I am glad to know that NAET really does work. Thank you for sharing that, I am sure many have never heard of it.

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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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Thanks for tagging me @ling123. I sent a private message to Virtuous and we are getting her double account sorted out, and her subscriptions to discussions relevant to her. I really appreciate your giving such clear instructions to fellow members on how to use the site. Thank you!

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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 I am familiar with some of those ingridients. The Natrum Sulphuricum is the base of many lung related antibiotics. Some naturapaths with use it in it's purist plant form.(Dr. Andrew Weil). I have used Skullcap along with Mullien leaf. That is what Indians have used for hundreds of years as did the settlers. The Dog Quai root is supposed to be super good. Because I have had good success with Chinese accupuncturists in the past recommending these types of remedies; I totally support it. Thanks!

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