(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

@katemn

Heather, you are NOT going to believe this .. BUT when reading this article .. something clicked! I went back to my research on my husband’s chemotherapy. If it works for CLL cancer .. WHY couldn’t they come up with something for us??????? Made sense to a NON MEDICAL person like me! Katherine Here is what I found:

MY HUSBAND’S CLL CHEMOTHERAPY DRUG IMBRUVICA that he has been on for two years .. that his Oncologist has said is NOT a cure but is “life sustaining” .. a type of drug called: Immunotherapy.

Immunotherapy is a broad category of anti-cancer therapies that use the body’s immune system to fight cancer cells. These cells are different from normal cells, in that they do not die normally. Think of these rapidly-dividing cells like an out-of-control copy machine that won’t stop creating images. These abnormal cells frequently change, or “mutate,” to evade the immune system. Immunotherapy drugs are designed to alert the immune system about these mutated cells so it can locate and destroy them.
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http://www.voanews.com/a/scientists-natural-immunity-fight-infection-without-antibiotics/3307299.html
Scientists in Sweden, however, may have found an alternative to using antibiotics.
In a mouse model, the scientists trained the body’s natural immune system, called innate immunity, to disarm and destroy a bacterium that causes a kidney infection, often in children.
The innate immune system is the front line of the body’s defenses, and it works in two different ways to fight infections.

The first is what researchers call a “good antibacterial defense” that targets and kills the invading pathogen. The second causes inflammation — the redness, swelling and fever that accompany an illness or injury. It’s a vital part of the immune response but also can cause significant tissue damage, and in some cases it can contribute to the progress of the disease or infection.

“So the question has been: Can you find a way of treating infections by stopping the bad part of the immune defense and still keep the antibacterial defense?” said Catharina Svanborg, a professor of clinical immunology at Lund University in Sweden. “This is what we have done in our model.”

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my pleasure, thanks to you too and keep us posted.

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@katemn

Boomer, what my husband’s Oncologist has told us is that Imbruvica either works front end for a patient .. or it does not. Luckily for my husband it REALLY has .. he has now been on it for two years and doing very well. My understanding of it is that with single drug use has been the most safe .. the most problems have come with combination drug therapy. Luckily my husband’s Oncologist was smart enough to go single drug and all has been well. .. and yes my husband was Stage 4. BUT due to this therapy.. I’m KEEPIN” that fella around! Katherine

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@katemn sounds great, its such a small world isnt it. Together we can do this. I was also thinking there is no register(as far as im aware) for our disease so there isnt any information for doctors to go by, what may have worked for other doctors etc, they all need some sort of communication with each other all over the world to share experiences, what worked and what diddnt(then theres less trial and error, which is what seems to be happening now) We should all suggest it to our doctors/hospitals and see what they suggest. sorry its a bit long winded im great at knowing what I want to say but doing it the long confusing way. haha
. I am thinking that with the drugs we have at the moment (big 3),we need to stay on them,( unless we get a negitive sputum within 6 months of treatment,) to keep them at bay, not reproducing, until there is a treatment to cure this once and for all, relapses happen all too often, to so many ,and are doing damage, we need a kind of long term maintanence, maby at lower doses or month about or something. Sorry just wandered off topic, having one of THOSE days when my head is going to fast.

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Heather, I know for Dr. Aksamit .. it needs to be TWELVE months (sputum samples) prior to the end of antibiotic treatment .. not six and the darn critters are still there lying in wait to multiply! That is why it is so important to maintain our daily “lung hygiene” .. getting the sputum up and out . as well as staying as healthy and serene as possible.

As far as linking the doctors .. I know for Dr. Aksamit .. he speaks at conferences all over the world .. plus writes papers. Truthfully .. this subject is “above my pay grade” .. I really don’t have a clue how doctors keep up on these things. I hate to say this .. but my guess is that perhaps a bit of ego might get involved also? Our type of Forum .. sharing might not work? BUT one of the things I REALLY like about Mayo Clinic is that they DO work as a team .. they DO consult with each other .. team work .. sharing cases with each other .. sharing problems .. ideas .. THAT is what I think is a wonderful part of going to Mayo Clinic! You get the brains of many if there is a problem!

Frankly I think as patients we can EASILY see just how difficult it is for doctors to “keep up” when they must see a new patient every 15 minutes (as now allotted by the insurance companies), keep all the new computerized medical records required .. PLUS even attempt to keep up on ANY new illness they are unaware of/do not remember from medical school .. or all the new medical treatments/medicines that have been discovered!!

I think that is WHY I am such a BIG advocate on our Forum of each of us doing our OWN “Due Diligence” .. printing out information .. AND taking that information to your doctor! Many on our Forum have said that information they have learned on our Forum is NEWS to their doctor! It may be sad .. but true .. “If it is to be .. it is up to ME!”.

That said .. I still REALLY like your idea of contacting labs .. MANY OF US blasting them with letters requesting help with new antibiotics for our disease. Dr. Aksamit has told me that since it is a relatively rare disease .. there just has not been money for research. Maybe no money .. but maybe publicity?

By the way .. are ALL of you aware that if you shop at Amazon.com you can request a portion of your purchases be given to NTM?? I have been doing it for a couple of years!! It is called: Amazon Smile. You can find out about it at:
http://smile.amazon.com/gp/chpf/about/ref=smi_aas_redirect?ie=UTF8&*Version*=1&*entries*=0
NTM Info & Research, Inc.
Location: Coral Gables, FL | Year Founded: 2003
Mission: NTMir’s mission is to save and improve lives by promoting support, research, education, early detection, and improved treatment programs for those with pulmonary NTM disease.

Liked by heathert

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@katemn

Heather, I know for Dr. Aksamit .. it needs to be TWELVE months (sputum samples) prior to the end of antibiotic treatment .. not six and the darn critters are still there lying in wait to multiply! That is why it is so important to maintain our daily “lung hygiene” .. getting the sputum up and out . as well as staying as healthy and serene as possible.

As far as linking the doctors .. I know for Dr. Aksamit .. he speaks at conferences all over the world .. plus writes papers. Truthfully .. this subject is “above my pay grade” .. I really don’t have a clue how doctors keep up on these things. I hate to say this .. but my guess is that perhaps a bit of ego might get involved also? Our type of Forum .. sharing might not work? BUT one of the things I REALLY like about Mayo Clinic is that they DO work as a team .. they DO consult with each other .. team work .. sharing cases with each other .. sharing problems .. ideas .. THAT is what I think is a wonderful part of going to Mayo Clinic! You get the brains of many if there is a problem!

Frankly I think as patients we can EASILY see just how difficult it is for doctors to “keep up” when they must see a new patient every 15 minutes (as now allotted by the insurance companies), keep all the new computerized medical records required .. PLUS even attempt to keep up on ANY new illness they are unaware of/do not remember from medical school .. or all the new medical treatments/medicines that have been discovered!!

I think that is WHY I am such a BIG advocate on our Forum of each of us doing our OWN “Due Diligence” .. printing out information .. AND taking that information to your doctor! Many on our Forum have said that information they have learned on our Forum is NEWS to their doctor! It may be sad .. but true .. “If it is to be .. it is up to ME!”.

That said .. I still REALLY like your idea of contacting labs .. MANY OF US blasting them with letters requesting help with new antibiotics for our disease. Dr. Aksamit has told me that since it is a relatively rare disease .. there just has not been money for research. Maybe no money .. but maybe publicity?

By the way .. are ALL of you aware that if you shop at Amazon.com you can request a portion of your purchases be given to NTM?? I have been doing it for a couple of years!! It is called: Amazon Smile. You can find out about it at:
http://smile.amazon.com/gp/chpf/about/ref=smi_aas_redirect?ie=UTF8&*Version*=1&*entries*=0
NTM Info & Research, Inc.
Location: Coral Gables, FL | Year Founded: 2003
Mission: NTMir’s mission is to save and improve lives by promoting support, research, education, early detection, and improved treatment programs for those with pulmonary NTM disease.

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Kate I see one of Dr Aksimet’s fellow docs at Mayo. I was told that coughing and clearing might make a person feel better but that it has nothing to do with getting rid of MAC. I was also told by this doc it could “clear”.
I go back 1-18 and will check again on these things.

I have cavitary MAC in one spot and have never coughed up much of anything. My sputum has been clear except except the first culture and for a lavage showing MAC. On the big 3 for 12-18 months.

What I guess I’m wondering is if you can have MAC not helped by clearing lungs as my doc has told me? Anyone else heard this?

Thanks! Very curious about this..

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Kay, the coughing and clearing absolutely does NOT get rid of MAC. The purpose is that the mucus sitting there is a “breeding ground” for further mycobacterium. That is the reason for trying to get it up and out. Personally the coughing and clearing does NOT make me feel a bit better .. a bit of a pain in the batooty to do it each am and pm after inhaling my two prescription inhalers .. but I do it to get up the sputum .. sometimes clear sputum .. sometimes that dark yellow sputum.

This clearing may not work for others .. but it does for me. What I get up and out proves to me the benefit. I have always had sputum .. so do not have an opinion for those of you have never had sputum.

When you are on the antibiotics as you are .. it is the antibiotics that are “clearing” your lungs. For me .. I have been off antibiotics since May 2014 and am doing all I can to stay off! So for me .. coughing .. clearing .. getting up the sputum so it does not become a breeding ground for further mycobacterium is very important to me. I am happy as a clam being “stable”. I am fully aware those nasty critters are still lying in wait in my lungs .. they don’t get “cured” .. so I will do whatever I can not to give them “care and comfort” in my lungs! Katherine

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@katemn

Kay, the coughing and clearing absolutely does NOT get rid of MAC. The purpose is that the mucus sitting there is a “breeding ground” for further mycobacterium. That is the reason for trying to get it up and out. Personally the coughing and clearing does NOT make me feel a bit better .. a bit of a pain in the batooty to do it each am and pm after inhaling my two prescription inhalers .. but I do it to get up the sputum .. sometimes clear sputum .. sometimes that dark yellow sputum.

This clearing may not work for others .. but it does for me. What I get up and out proves to me the benefit. I have always had sputum .. so do not have an opinion for those of you have never had sputum.

When you are on the antibiotics as you are .. it is the antibiotics that are “clearing” your lungs. For me .. I have been off antibiotics since May 2014 and am doing all I can to stay off! So for me .. coughing .. clearing .. getting up the sputum so it does not become a breeding ground for further mycobacterium is very important to me. I am happy as a clam being “stable”. I am fully aware those nasty critters are still lying in wait in my lungs .. they don’t get “cured” .. so I will do whatever I can not to give them “care and comfort” in my lungs! Katherine

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Kate
Just trying to understand. If you are free of MAC what is all the mucous you have to clear caused by? I know some people have reflux, asthma, etc. I just had a24 hour Impedence test and so not have reflux. I don’t have asthma.

I do have post nasal drip and mucous in my throat and a bit of a runny nose.

Thanks for explaining clearing your lungs. Maybe my PND is the same thing? My doc seems unconcerned and said I needn’t bother with any devices, that they make you feel better but don’t help anything??

Thanks again.
Kay

Just trying to figure this out.

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Hi Kay, to be honest .. I am not exactly clear where/how the sputum comes from/is created .. I have never asked my doctor the source .. I just deal with it. I know that I also have Bronchiectasis which is very common with MAC .. in fact Dr. Aksamit said they really don’t know which comes first .. chicken/egg thing. Very common to have BOTH Bronchiectasis AND MAC .. PLUS common to have GERDS AND post nasal drip .. ahh the beauty of this disease!

So due to these cute little details I take Aciphex for the Gerds daily .. Dr. Aksamit prescribed a VERY helpful nasal spray that I get from the Mayo Pharmacy (they will even mail it to you for refills) .. and for the MAC and Bronchiectasis .. I just do my daily “lung hygiene” . Hope this helps. Our disease journey can be so different because our bodies are so different .. our disease at such different points .. so many variables! Katherine

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@katemn

Hi Kay, to be honest .. I am not exactly clear where/how the sputum comes from/is created .. I have never asked my doctor the source .. I just deal with it. I know that I also have Bronchiectasis which is very common with MAC .. in fact Dr. Aksamit said they really don’t know which comes first .. chicken/egg thing. Very common to have BOTH Bronchiectasis AND MAC .. PLUS common to have GERDS AND post nasal drip .. ahh the beauty of this disease!

So due to these cute little details I take Aciphex for the Gerds daily .. Dr. Aksamit prescribed a VERY helpful nasal spray that I get from the Mayo Pharmacy (they will even mail it to you for refills) .. and for the MAC and Bronchiectasis .. I just do my daily “lung hygiene” . Hope this helps. Our disease journey can be so different because our bodies are so different .. our disease at such different points .. so many variables! Katherine

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Hi Katherine
Thanks so much. I got the same nasal spray from Mayo, and it really is great stuff.

I have a very small area of Bronchiectasis they told me. Maybe that’s why I have nothing to clear from my lungs. It of course makes me wonder how I got MAC since I don’t even take showers, only baths. I guess it doesn’t matter.

I will help Heather and the group by doing some advocacy letters soon. I’m back to work now, so have been too busy with that and Holiday prep.

Our Forum is great source of info and encouragement. Thanks for all you do to help people out.

It’s a strange disease. I feel like I only started being sick When I started the meds for MAC (big 3). I felt well till I started them on August 1. I’ve been tired and nauseated since that time. My MAC was found when a nodule was spotted when I had pneumonia, a CT Scan showed a cavity in my upper right lung. One spot! A biopsy done by a bronchoscopy showed MAC.

I think too, that a part of the pflegm and post nasal drip is stress related. The busier and more occupied I am, the less I have problems with it. Do you find stress makes it worse? If so, we all should relax 😉

Again, thanks to all of you and best of the Holidays.

Kay

Liked by heathert

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@katemn

Hi Kay, to be honest .. I am not exactly clear where/how the sputum comes from/is created .. I have never asked my doctor the source .. I just deal with it. I know that I also have Bronchiectasis which is very common with MAC .. in fact Dr. Aksamit said they really don’t know which comes first .. chicken/egg thing. Very common to have BOTH Bronchiectasis AND MAC .. PLUS common to have GERDS AND post nasal drip .. ahh the beauty of this disease!

So due to these cute little details I take Aciphex for the Gerds daily .. Dr. Aksamit prescribed a VERY helpful nasal spray that I get from the Mayo Pharmacy (they will even mail it to you for refills) .. and for the MAC and Bronchiectasis .. I just do my daily “lung hygiene” . Hope this helps. Our disease journey can be so different because our bodies are so different .. our disease at such different points .. so many variables! Katherine

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Hi Kay, I REALLY do try to focus on serenity. There is such a mind/body connection that I don’t even think science or we have caught up with yet. Plus for me in my life “denial” really works for me .. I really don’t deal with either my or my husband’s issues unless they are staring me in the face. I REALLY focus on living my life as happily and healthily as I possibly can .. putting my “energy into what I can control .. and letting go of what I can’t control.” We all hit hard spots in our lives .. I hit one a few weeks ago .. had to “pull up my big girl panties” .. and plow through it. For me part of it is this Forum .. trying to “play it forward” .. amazing how helping other people truly helps us ourselves!

Yes, it is a strange disease. With the nausea .. have you tried different timing/rotation of the meds? That helped me .. figuring that out .. with/without food .. even just a little snack helped. I also found I just plain had to listen to my body .. found I absolutely needed about 10 hours of sleep. Found I HAD to go to bed earlier .. respect the signals my body was sending me .. just HAD to take care of that one body I was given for this lifetime.

When you go for your next appointment .. REALLY ask about the Bronchiectasis. I did NOT .. I was so focused on the MAC .. I didn’t even actually think about or realize the ramifications of the Bronchiectasis. Now I think I am actually suffering quite a bit from the “scarring of the bronchial tubes” .. AND that scarring is NOT going to go away. It was not until about a year ago that I even googled the issue and began to really understand the lifetime ramifications of Bronchiectasis. AND Dr. Aksamit says mine is NOT even very bad! Hmmm.. how on earth do people with a severe case handle the coughing?! Oh well .. attitude of gratitude! Happy Holidays to you also! Hugs! Katherine

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@katemn

Hi Kay, to be honest .. I am not exactly clear where/how the sputum comes from/is created .. I have never asked my doctor the source .. I just deal with it. I know that I also have Bronchiectasis which is very common with MAC .. in fact Dr. Aksamit said they really don’t know which comes first .. chicken/egg thing. Very common to have BOTH Bronchiectasis AND MAC .. PLUS common to have GERDS AND post nasal drip .. ahh the beauty of this disease!

So due to these cute little details I take Aciphex for the Gerds daily .. Dr. Aksamit prescribed a VERY helpful nasal spray that I get from the Mayo Pharmacy (they will even mail it to you for refills) .. and for the MAC and Bronchiectasis .. I just do my daily “lung hygiene” . Hope this helps. Our disease journey can be so different because our bodies are so different .. our disease at such different points .. so many variables! Katherine

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Katherine
Actually YOU are the reason I’m doing better with the meds. When I first started them I was flat in bed I was so sick and had terrible insomnia.. You welcomed me to the forum and suggested I change times around on my meds. I talked to Mayo and we changed my Rifampin time, and I was able to sleep and felt better. I’ve tried a lot of variations on time and taking E and Z with food, but the nausea persists, better some days than others. My doc says no food w R as it decreases absorption.

I have asked about Bronchiecstasis to the 2 pulmonary docs I’ve seen. They say a very small amount in one lobe. I don’t think that causes post nasal drip though which is my main bother except for drug side effects!

Again, thanks, hugs back. Have a great Holiday.
Kay

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Hello. My name is Mary Jo. I am new to the forum. I only discovered you while looking for treatment at Mayo in Florida. I did not have MAC, I had its relative called Kansasaii. It is in the same TB family, inhaled water droplets. Where did it come from? Who knows. This was in 1996. I used the same “cocktail” as many in this forum. I recovered and felt very well…until 2009. I learned I had bronchiectasis. The doctor I went to at Duke (after many failed diagnose every where else) told me it was caused by the Kansasaii. Bronchiectasis is widened lung airways with areas that collect mucus and bacteria instead of getting rid of it. That is why you clear and cough up mucus. I take antibiotics 2weeks of every month, switching ABX each time. I use a Aerobika daily and cough up as much “stuff” as I can. Just because you have Mac does not mean you have bronchiectasis. It took years for mine to develope. I did not know that the Mac never really went away, because my doctors said my Kansasaii is gone. I do have problems with staph in the lungs. I realize this group is for Mac, but need to find a good pulmonary doctor in Florida. In 2017 my doctor at Duke cannot take out of state insurance.
My aunt has Mac so I will hook her up with forum. She definitely has trouble with the meds. Wishing you all a lovely holiday season! And stay well!

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@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor’s visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts… Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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Hi Cathy! I was diagnosed with MAC in 2005. Pretty sure I caught it in a hottub. Mayo treats it with alternating month antibiotics. 28 days on tobramycin, then, 10 days twice daily cipro 500 mg twice a day. this seems to keep the infection at bay.

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@Paula_MAC2007

I was diagnosed with MAC in Feb 2008 (after having intermittent symptoms for 3 years that got progressively worse). For 4 yrs, 3 months (Feb 2008 – April 2012), I was on the 3 standard drugs for MAC . I had some side effects from the drugs but gradually they went away or I learned how to deal with them. If my routine got out of whack (like on vacation) I suffered.

Over the years, I grew to feel like my old self – although as a high energy person, I was somewhat sluggish from the medication. Last April, I negotiated with my pulmonologist to go off the drugs. What a relief! Was like a weight had been lifted . . . I felt much lighter and less sluggish. While my MAC was not gone, my lesions had shrunk over the years of antibiotics. I considered the MAC as hibernating or resting!

Eight months later (December 2012) I began experiencing the cough (which at times results in spasms) and tiredness. Since Feb, I have been on two different antibiotics from my Internist – to rule out a severe sinus infection. No dice! Yesterday (March 2013) I saw my pulmonologist who, before assuming it is MAC and resuming the meds, wants to do a lung lavage and CT scan. Will do this within the next two weeks.

Incidentally, my Internist did a lot of blood workup recently and my Vitamin D is very low. Am now taking 50,000 IU for 12 weeks and then repeat the tests. My pulmonologist yesterday mentioned there is some connection between Vitamin D and lung issues but it’s not real concrete yet.

So my MAC appears to no longer be ‘resting’.

I will follow this blog with great interest. I live in Wisconsin, in the part of the upper Midwest where MAC is found. Yet MAC is not found in some other Great Lake states. Sure is a mystery.

I WOULD LOVE TO GET IN A STUDY WITH OTHERS WITH MAC!!!!!

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Hi Paula, are you a Mayo Clinic patient? And was that lavage treatment a ‘whole lung lavage’ where they actually run liters of saline through your lungs?

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@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can’t imagine taking these meds for the next year or more!! I’m sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I’m a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

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Hi Deby! Where did you get treatment?

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@melissa23

Hello my comrades with MAC. I am Active Duty military and frustrated with my limited access to answers about my infection.

I had a >21mm PPD in 2011 along with gross reading CT Scans and misread chest x-rays. For three months in 2011 I was treated for Latent Tuberculosis then released from treatment after I demanded a QuantiFERON TB test which came back negative for TB.

In 2014, my body finally deteriorated to the point that my neurologist addressed my persistent cough and ordered an AFB sputum culture – Positive for Mycobacterium avium. My doctors act as if they have never seen the manifestation of this infection. My CT Scans have revealed “reticulondular, interstitial, pleuroparenchymal opacities in both lung apices” and x-rays range in readings from “mild, bilateral nodular changes in the lung apices” and “biapical pleural thickening”, to “the lungs are normal in appearance without evidence of active disease”. It seems that “normal” was much easier to deal with than the potential of missing the infection back in 2011.

I am currently on 2 antibiotics (azitrthromycin 500mg 3xs a week and rifampin 600mg 3xs a week) and have been since FEB 2015, yet sputum cultures continue to come back Postive.

Has anybody out there had AFB cultures to determine if the MAC is in their Blood & Urine?

Had anybody out there had their M. avium subspecies identified?

To aggravate matters more, I am told that the MAC is not in my lungs. My doctors are thinking of discontinuing the “toxic” antibiotic treatment. Over the past three years I have developed SVT, Raynaud’s disease, migraines, levido reticularis, vulvudynia, unspecified diffuse connective tissue disease and now I have left-side-facial muscle pain/droop and similar pain/swelling/immobility in my right hand.

I have asked the Military to Please send me to see Dr. Timothy Aksamit at the Mayo Clinic.

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Hi Melissa. I believe your treatment was supposed to include a third anti-biotic along with the other two. I think it is called rifanpin or something like that that. Raynaud’s is an auto-immune disease and as such leaves one suseptable to weird infections. Def get to the Mayo.

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