(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.

@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input....Dee

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@barbjh you do not take Colloidal silver on a long term basis.  Most natural med. should not be taken on  a long term basis.  I have been using it for years  when needed and it worked find for me but I do not  used on very short term.  It is great for a burn

that doesn’t want to heal.  

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@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input....Dee

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Nick... hi there...when do you take colloidal silver...is it when you are beginning to get sick. I use echinacea only when starting to feel sick...use clear lungs every day, 1 pill to maintain(blue)....am I doing it right✌️

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@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input....Dee

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@nick..Hi Nick. I make my own colloidal silver with a generator but have not used it for my lung...I have used it for 20+ years now with great efficacy often instead of scripted antibiotics. If I get pneumonia or bronchitis, I take prescripted antibiotics. How long of a period did you use it for your lung? How high is your ppm in your silver? How much did you take? Do you take a maintenance dose ongoing? My brother is pushing me to nebulize silver to kill the MAC which feels a little scary to me. I do prefer it as an alternative to prescription drugs. Do you attribute the fact that you are free from MAC to the use of colloidal silver?...and finally, are we ever really free of MAC?

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@jkiemen What side effects have you experienced, if any, from ingesting silver?

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@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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@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input....Dee

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@alleycatkate i don’t think it is how is got rid of the MAC with collaidal silver.   I have done a lot of things that year.  I have NAET last summer which could have helped because this is working.  I ask her to do a desintoxication of radiation and I reacted

to it with burning sensation in my hands and feet and I had hives a good part of my body also.  I know it got out of my system. She gave me another treatment with another combination and it started to go away.  The next day I was find.  I got rid of the MAC

either by getting a cleaning of my lungs with a bronchoscopy or with Probiotic. My bronchoscopy reveal I was free. My doctor doesn’t do sputum he says it is not accurate.  That year I took DR OHIrra’s professional probiotic twice a day.  Three months 2 a day

and one month 1 a day and the next month 2  every two days.   MAC is an organism so the best of the best for organism is to give your body good bacteria so I started a treatment with Dr. Ohirra professional probiotic.  Right now I am taking one capsule every

day before going to bed. I intend to do so constantly to prevent more bacteria to get into my lungs.  To keep my stomach acid free I am also taking Milk Thistle a teaspoon after a meal not every meal, It depends If I feel my liver isN’t doing a proper job

I do help it with milk thistle but the brown liquid one. Some product are better then other. (Recommanded by my retired Dr) he was a genius with Natural Med. 

How I used colloidal silver. I take it two weeks and then I alternate every two days for three months. I read in Dr Balch book that colloidal silver can get rid of lung lesion.  That is why I started to use it.    I must specify that I treat myself right

away when I have a little difference in my health.  For example if I feel my breath isn’t as normal as usual I will take clear lung to clear it sometimes it is around 1-2 or 3 days.  I do not it go on. I treat right away the problem.  All my blood test are

all normal.  The only thing was when I had the Mac my leukocytes was a little higher.  My doctor said it was not High but to me it wasn’t normal. Now it is normal. I wasn’t afraid to use colloidal silver since Dr Balch was recommending it for pneumonia.  

This is what he says: colloidal silver reduces inflammatin and promotes healing of lesions in lung tissue.

ClearLungs from Natural Alternatives is an herbal combination that helps provide relief from shortness of breath, tighness in the chest, and wheezing due to bronchial congestion.  It is available in two formulas: one with ephredra and the other without.

 They appear to be equally effective. 

Vitamin A isnecessary for maintaining the health of the lining of the respiratory passages.  A deficiency of this vitamins increases susceptibility to respiratory infections, which in turn can lead to pneumonia.

I have had good result with Dr Balch natural recommendation so I will try his recommendation if I need to. I do not have any other disease and do not take any medication so I do not have to watch combination.

Alleycat I have no knowledge about the home made colloidal silver. THe only secondary effects I am aware of was on TV a man took it every years for 10 years and more and his skin has become blue. If you want to take you may want to alternate after three

months. Hope this will help! You can purchase Dr Balch book on the internet.

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@soflo

Hi Kate and all, I am new here to the group and I’m so happy I stumbled upon you all. I have MAC and bronchiectasas and I’m pretty scared. I started three antibiotics for 2 weeks and I just stopped because I got ill and just couldn’t swallow pills for a few days because of nausea. I’m not sure if I got ill because of the antibiotics. I am struggling because I’m not sure how to move forward with this illness. I’m really afraid of the antibiotics and the havec they may cause on my body. I am wondering, do I just move forward and put this in gods hands and be proactive in other healthy ways but not take the antibiotics. I wish us all peace, health and happiness 🙂 Thanks for any input....Dee

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@alleycatkate sorry I forgot to answer your question.  The ppm is 250 . This is super for immune system.  The year I used colloidal silver the MAC was still there when i did the CTscan. I do not believe it got rid of my MAC with colloidal because I used it

vey little,  i believed more on probiotic after I realized probiotic was what helped my brother with his lung severe infection.  Antibiotic wasn’t doing  it’s job as they should but when we combined both it worked marvellous. He had both lungs transplant.

 I decided to give it a go last year. I took it regularly and still do with a lower dose as explain in my other response.  I have never use an ongoing colloidal treatment just few months 3 before and sometimes I take it for a week and stop. Hope this help.

Nick

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Thanks @pfists...what do you consider low dose for maintenance?

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