1. < MAC & Bronchiectasis

(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

Katherine, Alumni Mentor | @katemn | Jun 19, 2017
In reply to @ling123 "@katemn Thanks for the complement, Katherine. You are the one who has taught us that knowledge..." + (show)
@ling123

@katemn Thanks for the complement, Katherine. You are the one who has taught us that knowledge is our best weapon against our medical problems. A lot of times, people are not doing the right things to help their own situation because they don't know what the right things are and usually resort to what they assume is the right thing to do. If it is just for something not so serious, not much harm done. But the problem that we are all sharing on this site is serious enough that we need to try to do as many right things as we possibly can. Like many of the posters on this site have stated, doctors may or may not even know enough to help us. So we must use this site as a tool to try to help each other out if we can. Information from the Internet may or may not be accurate, or even correct. So we must, first of all, understand our disease(s) as much as possible in order to use this understanding as basis to decipher the information we obtain from the Internet or any other source. I admit, I do get lazy a lot of times myself and frustrated enough to not want to be vigilant and mindful ALL THE TIME. But also catch myself asking: our body is our castle. If we don't do our best to defend it, who will?

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@ling123, Ling .. well said My Sister! Hugs! Katherine

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Katherine, Alumni Mentor | @katemn | Jun 19, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

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@ling123, Ling, as we always say "Knowledge is Power" .. I personally take a medication that THINS the mucus .. making it easier to cough up .. because I am very aware that I do NOT want that mucus staying down there breeding mycobacterium! I merely want it not quite so "sticky" .. quite so difficult to cough up. (The medication I take daily is kind of like a super Mucinex type thing .. NO it is not available in the USA .. the product is available in many countries around the globe .. I get it when I travel .. prescribed initially by a doctor in Geneva when I had pneumonia. YES, it is listed on my Med List and my doctor at Mayo Clinic knows about it!) Hugs to all! Kaherine

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JK | @contentandwell | Jun 19, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

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@katemn Katherine it is so wrong. As I have said, either he is burned out, very quickly considering he is only in his mid-50s and has been a doctor for about 18 years after being an engineer, or he simply does not like me. Not everyone can like everyone else but it should not interfere with the care that person receives. So many issues...
JK

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tdrell | @tdrell | Jun 19, 2017
In reply to @katemn "Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would..." + (show)
@katemn

Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would only say it was very important to deal with an "Independent Insurance Agent" ie one who represents many different insurance companies .. AND one who will spend time explaining your various options for Medicare medicare supplemental insurance policies! That way you will truly understand exactly what you are purchasing .. AND what you will be hit with cost wise when ill health happens. Hugs to all! Katherine

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Katemn....the videos from the national NTM May 2017 are now posted !! Paula or Terri or?? could you post the link...it contains 360 or something?thanks tdrell

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ling123 | @ling123 | Jun 19, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

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@katemn Katherine, thanks for sharing this information. I have been thinking about mucus thinning medication, but each time I went to see my pulmonary doctor, I would forget to ask. I will make sure to ask during my next appointment in September. Like you, the stickiness of my mucus worries me the most right now. I know if I get bacteria again, the thick mucus will make it fester. What is the name of this mucus-thinning medication that you are using?

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Paula_MAC-2007 | @Paula_MAC2007 | Jun 19, 2017
In reply to @katemn "Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would..." + (show)
@katemn

Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would only say it was very important to deal with an "Independent Insurance Agent" ie one who represents many different insurance companies .. AND one who will spend time explaining your various options for Medicare medicare supplemental insurance policies! That way you will truly understand exactly what you are purchasing .. AND what you will be hit with cost wise when ill health happens. Hugs to all! Katherine

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@tdrell, the videos for the NTM conference are in 4 parts and are available on YouTube. I'll post the link to them.

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tdrell | @tdrell | Jun 19, 2017
In reply to @katemn "Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would..." + (show)
@katemn

Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would only say it was very important to deal with an "Independent Insurance Agent" ie one who represents many different insurance companies .. AND one who will spend time explaining your various options for Medicare medicare supplemental insurance policies! That way you will truly understand exactly what you are purchasing .. AND what you will be hit with cost wise when ill health happens. Hugs to all! Katherine

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Katemn....here in wisconsin we have the option of WPS which we have as our traditional medicare supplement. In Wisconsin the MEdicare Plans do not use the letters A thru ??? To explain what is covered..... All aspects are covered except 5 options....out of country...B deductible...A deductible.....to cover leftover if Dr or place does not accept Medicare discounts ( such as Mayo in Minnesota to non residents)....and extra homecare visits.
WPS is a non profit group....sold here thru agents or directly thru company which is the way we bought it 8 years ago.
I pay about $400 a month for medicare B premium ..$120
And $280 a month to WPS for all the basics and 5 options.
We normally never see any bills...the 4 we have received ...for $10 or 15 were errors on providers part and were cancelled with one call .
I just received the EOB explanation of benefits From WPS for the 7 days at NJH, my CPAP machine, a cardiac stress test, echocardiogram and nuclear scan......all the bills had first gone thru Medicare then gone to supplement WPS.

It came to $32,482.....$26,043 discounted
Medicare paid $5130....WPS paid $1308 I owe $000000.
Tdrell

REPLY
Katherine, Alumni Mentor | @katemn | Jun 19, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

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@ling123, Ling, sorry .. not available in the USA! I am NOT recommending it for anyone else .. it just works for me. Hugs! Katherine

(but if you travel and choose to purchase it .. I just go into a pharmacy and BEG! Tell them there are currently 17 trials in the USA .. AND when the drug is FINALLY approved in the USA .. instead of it being so cheap as it is in their country .. it will be $300 per pill in the USA due to our profit making drug companies! They will usually order me a year supply to be picked up the next day .. about $350 or so. I ONLY for conveniece sake purchace the 75mg TIME release .. one time a day capsule.

.. google: AMBROXOL/MUCOSOLVAN https://www.boehringer-ingelheim.cz/volne-prodejne-pripravky/mucosolvan/mucosolvanr

NOTE: main formulations are sustained release capsules for a one-a-day dosing
**Ambroxol, the active agent of Mucosolvan, has several properties that restore the physiological clearance mechanisms of the respiratory tract and therefore play an important role in the body’s natural defense mechanisms. Ambroxol stimulates synthesis and release of surfactant by specific types of lung cells. Surfactant is a complex emulsion and works as “anti-glue” factor which facilitates an optimal flow of airway secretions. Several studies have demonstrated the importance of surfactant in reducing the adhesion of mucus to the bronchial wall, in improving its transport, and in providing protection against bacterial aggression and irritating agents.

REPLY
Katherine, Alumni Mentor | @katemn | Jun 19, 2017
In reply to @katemn "Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would..." + (show)
@katemn

Dear All, just spoke with my husband who is very knowledgeable about insurance .. he would only say it was very important to deal with an "Independent Insurance Agent" ie one who represents many different insurance companies .. AND one who will spend time explaining your various options for Medicare medicare supplemental insurance policies! That way you will truly understand exactly what you are purchasing .. AND what you will be hit with cost wise when ill health happens. Hugs to all! Katherine

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@tdrell, Terry .. good job explaining .. all so complicated .. if we can help each other in this important are .. GREAT! The medical bills can bankrupt people .. so sad. If we all keep sharing what we know .. a wealth of Knowledge! Hugs! Katherine

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ling123 | @ling123 | Jun 19, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

Jump to this post

@katemn That's OK, Katherine. I'm not that bad off that I can't live a normal life without it. But it is helpful to have the information you have provided for future reference. It is a shame that in this country, unless the drugs can find use by large portion of the population, the drug companies can pretty charge whatever they want. Patients be damned (sorry for the swearing). You are right about it not being available in the U.S. This Q&A explains it. http://ask.metafilter.com/271544/Why-isnt-Mucosolvan-Ambroxol-sold-in-US-pharmacies

Pretty much all about whether it makes money for anyone or not. When people's quality of life is tied to profit, guess who is going to lose.....

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