(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@lindam272

Ugh! Just received a call from my doc that my 5/30 culture came back showing Pseudomonas Aeruginosa growth. He is starting me on inhaled tobrymicin along with my normal saline neb treatments 2x day. Seriously not happy right now. Linda

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@lindam272 Hi Linda. It really stinks to get that kind of news. Please try not to stress too much about it, for most of us; pseudomonas is easy to knock out. The tobramycin and saline nebs should take care of it. Will this be your first time on tobramycin?

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@lindam272

Ugh! Just received a call from my doc that my 5/30 culture came back showing Pseudomonas Aeruginosa growth. He is starting me on inhaled tobrymicin along with my normal saline neb treatments 2x day. Seriously not happy right now. Linda

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@lindam272 I just got my annual sputem test done last week. So, in 6-8 weeks; I will find out if any cooties have taken up residence or not.

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@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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@unicorn Hi Krista. That is great news. I am a bit ticked off that NIH has known for years that N.O. therapy has worked for us and never pushed forward with it and brought it to mainstream. BTW, how are you doing?

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@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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@yayaaz, Hi Renee. Just want to welcome you to Connect. I am happy that you found us because mac/mai is a challenging disease to deal with. I commend you for advocating on your aunt's behalf. I feel badly for her that she is battling this at her age. I am no medical expert, but I feel like her doctor is right. Due to her age and myeloma; the 'Big 3' might be too much for her system. I refused them at age 48 (12 yrs ago) for fear of their toxicity. I have been treated with cipro, doxycycline, and tobramycin on alternating months. These have been well tolerated by me and seem to work. Not knowing the severity of your aunt's mai, I don't know if these meds would work for her, but it is worth mentioning them to her doctor. It is a Mayo dr that put me on those. You may want to mention that too to her dr. as Mayo physicians are held in high esteem by most medical professionals. I hope you will keep us posted on what treatment plan they come up with for her; and how she is doing. Do you have any more questions that you'd like to ask? -Terri Martin

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@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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@yayaaz, I am on Medicare and it has covered every single drug that I have been put on. (One them cost $2,500.00 a month) at the time. That was the tobramycin; cost has come down by half due to new contracts. I know that drugs tend to get approved without a problem when you are treated through places like Mayo, NJH, Cleveland Clinic, etc. They have swagger I guess. If she doesn't have secondary insurance, and she qualifies financially, the Healthwell Foundation can help with her co-pays on some (not all) meds. They are a Cystic Fibrosis charity, and since bronchiectasis is an 'orphan' disease and effects us similarly as CF, they help us out.

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@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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Good morning Terri,
Thank you for all your information.
I didn’t realize I’d opened up Pandora’s Box! One link lead to another, and then another, etc..
I do have questions, but right now I’m trying to understand all the terminology being used.
The doctor said for right now he will prescribe DOXYCYCLINE and FAMOTIDINE (?). Just the Doxy alone may cause colitis, which she really can’t afford as she only weighs 90 pounds. I will continue to devour all the great information I’m getting here.
Thank you for your concern, renee

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@auntnanny

lindam272 I just did a sputum test and results are the same as yours. I'm on 500 oral cipro. I have taken this previously (late last year) and it worked very well. Am hoping for the same results this time. Best to you and I've read tobrymicin is an excellent drug. Have not yet used that one.

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Thank you, @auntnanny. I am waiting to hear what the doc finds out from my insurance as to what is covered. I'll probably be on tobrymicin and perhaps an oral antibiotic. Glad to hear you had good results. Prayers for good results this time too! Linda

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@lindam272

Ugh! Just received a call from my doc that my 5/30 culture came back showing Pseudomonas Aeruginosa growth. He is starting me on inhaled tobrymicin along with my normal saline neb treatments 2x day. Seriously not happy right now. Linda

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@windwalker Hi, Terri, Yes, first time on it. I think my initial reaction was that I felt that my body betrayed me. After doing everything I can possibly do, I still have stuff growing that doesn't belong there. So frustrating! Hopefully, I don't have any bad side effects from the meds and can knock it out quickly. Thanks so much for the encouraging words! Linda

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@lindam272

Ugh! Just received a call from my doc that my 5/30 culture came back showing Pseudomonas Aeruginosa growth. He is starting me on inhaled tobrymicin along with my normal saline neb treatments 2x day. Seriously not happy right now. Linda

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@windwalker Praying for squeaky clean results! No cooties!! Linda

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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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@jkiemen  yes when I used it my ctscan was worst than the previous years so I tried collaidal silver starting about three months before the next Ctscan ( recommendation was 3 months to have another scan)  to my surprise the next scan revealed no more infection.

The nodules was less in sizes etc.  I would try it again if I have too but I am asymptomatic right now and do not feel I have a lung problem.  i had my yearly scan at the beginning of this month and an appointment in July with my Pulmonary Dr.  Hope it will

continue to be great!  Nick

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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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Collaido silver has some nasty long term effects so I would educate yourself before using. Just like conventional medicine there can be long term damage.

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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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@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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nick…great name, Dr Hope

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@nick52 What is clear lungs . toni ann

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