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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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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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1 Reaction@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.
@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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1 ReactionWow! 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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1 Reaction@heathert, Heather, these are interesting factoids. Will look into the Serina 1 gene. Thank you for contributing this.
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1 Reaction@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.
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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1 Reaction@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!
Super Windwalker!
I am now taking probiotic by Dr Ohhira from OkayAma University in JAPAN
Have you taken probiotics. These are vegetarian formula
Dear Windwalker,
I do not have a clinic around here neither. It is in Moncton NEw Brunswick which is 4 h from home. It was worth it. Does your specialist perform broncoscopy for you?