Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS
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!
KateMN
johnlk
@johnlk
@johnlk
Posts: 7
Joined: Oct 05, 2015
Here I am johnlk. I have just started on this site. I am an 86 yr old white male WASP. Well not P i am LDS since 1988.
Have had MAC the not so bad kind with nodules in the lower portion of lungs for past 2 @ half years. Finally diagnosed for sure this past Sep. Up till 2 years ago I have been very healthy for my age and active. Now not up to doing much and need lots of rest. I had severe phemonia 4 years ago and probably lowered my imunity since then. I was a career pilot in the RCAF in Canada for 21 years and have PTSD so cosiquently have a lot of disturbed sleep that doesnt help one to be rested.
Also had a lot of surgery in past 3 years. With atrial fibulation, had pace maker and surgery to open up caritoid artery to clean out plaqe blockage. Surgery on face for malinoma. Have elected to just be monitored and not take drugs for the MAC. To live as healthy as possible and try to build up my imunity. After all at age 86 I will probably die of some other cause than the MAC or not live until the end of a drug treatment plan. I dont need any more day to day living discomforts than I am already loaded
down with. At present half a flight of stairs is enough for me without a rest.
I would be particularly interested in hearing how it is going for other patients who are not on a drug plan for MAC but are trying to let their own body fight the MAC without drugs. I already take 4 RX for my other conditions.
Just now I dont have the stamina to do much exercise just get through the day.
Best wishes to all. John
THANKS FOR THE INPUT kATEMAN
Yes nI am trying to hook up with someone here in British Columbia Canada,
Perhaps at Kamloops BC for the non drug treatment.
So far no luck but the day is young.
John
James Wall
@jamesoz
@jamesoz
Posts: 3
Joined: Oct 06, 2015
I am new to this forum and I am a 58 y/o white male, diagnosed with MAC via brochoscopy and sputum results just over 15 months ago. I also have bronchiectasis however I am on the mild end of the spectrum with very little in the way of symptoms. Very little dry cough, next to no sputum production, bouts of fatigue that pass and I am keeping a healthy stable weight. Not on medication yet, although that could change down the track. I am under the care of a lung specialist who has other MAC patients at a large hospital here in Sydney, Australia. My biggest test is that I am a depression/anxiety sufferer and when I am feeling low physically my mental state plummets. I just have to remember I am not alone on this journey, and the news of other sufferers helps me along.
James
Liked by Colleen Young, Connect Director, Denise, lorifilipek
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
I am new to this forum and I am a 58 y/o white male, diagnosed with MAC via brochoscopy and sputum results just over 15 months ago. I also have bronchiectasis however I am on the mild end of the spectrum with very little in the way of symptoms. Very little dry cough, next to no sputum production, bouts of fatigue that pass and I am keeping a healthy stable weight. Not on medication yet, although that could change down the track. I am under the care of a lung specialist who has other MAC patients at a large hospital here in Sydney, Australia. My biggest test is that I am a depression/anxiety sufferer and when I am feeling low physically my mental state plummets. I just have to remember I am not alone on this journey, and the news of other sufferers helps me along.
James
James, stay on this forum .. many lovely people!
When I was diagnosed a wonderful woman told me .. and I have repeated it to myself MANY times plus told many other people:
“If we all put our troubles in a great big circle .. more than likely each of us would take back our own troubles!”
This statement is so profound. My husband is on chemo with Stage 4 cancer .. I did 30 months on 4-5 antibiotics and now cough incessantly with Bronchiectasis .. BUT we remind ourselves:
We have never lost a child .. we have never lost a grandchild .. now THOSE are troubles! So we count our “gratitudes” each day and see the glass half full rather than half empty. Each day is a new beginning. Each morning we can DECIDE to be happy. Because happiness truly IS an “inside” job! Each of us knows what “fills” our cup .. exercise .. volunteering with those less fortunate than ourselves .. seeing friends or family. We make that choice each morning to be happy. Depression is a chemical imbalance .. my husband also suffers from that .. but he is careful to take his meds .. exercises .. AND makes the choice each day to make it a better day.
James, I hope the above helps you just a little bit! Go in peace.
Liked by Colleen Young, Connect Director
James Wall
@jamesoz
@jamesoz
Posts: 3
Joined: Oct 06, 2015
Katherine, thanks for the reply. My depression/anxiety, diagnosed as Cyclothymia (Cyclothymic Disorder), is something I have had nearly all my adult life. It stems from losing my brother when he was only 16 years old, I was only nearly 19 years old myself, then my Grandfather and father in a short number of years then the breakdown of my first marriage. I have no contact with my adult children or any grandchild, only my fabulous current wife of 28 years, and some friends to support me in my illness. And, that is more than many I suppose. I am starting to do some volunteer work, as I am a early retiree, and I try to keep my mind busy. It is too easy to lead a very insular life, and miss out on the fun of actually living. I have been told that MAC may be my cross to bear for the rest of my life, and that is a scary thought at times. However, life is there to be lived. It may not be quite what I thought it would be, but it is all I have.
James
Maryke
@maryke
@maryke
Posts: 5
Joined: May 27, 2015
Katherine, thanks for the reply. My depression/anxiety, diagnosed as Cyclothymia (Cyclothymic Disorder), is something I have had nearly all my adult life. It stems from losing my brother when he was only 16 years old, I was only nearly 19 years old myself, then my Grandfather and father in a short number of years then the breakdown of my first marriage. I have no contact with my adult children or any grandchild, only my fabulous current wife of 28 years, and some friends to support me in my illness. And, that is more than many I suppose. I am starting to do some volunteer work, as I am a early retiree, and I try to keep my mind busy. It is too easy to lead a very insular life, and miss out on the fun of actually living. I have been told that MAC may be my cross to bear for the rest of my life, and that is a scary thought at times. However, life is there to be lived. It may not be quite what I thought it would be, but it is all I have.
James
James
I have been diagnosed with MAC the TB one and pleuricy in March 2015, I’m take my antibiotics at night to get relieve from the side effects. I am tired the whole time. Some days are better than others. I stopped taking my anti depression meds. Good luck, we have been put on this journey for a reason.
Maryke
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
Katherine, thanks for the reply. My depression/anxiety, diagnosed as Cyclothymia (Cyclothymic Disorder), is something I have had nearly all my adult life. It stems from losing my brother when he was only 16 years old, I was only nearly 19 years old myself, then my Grandfather and father in a short number of years then the breakdown of my first marriage. I have no contact with my adult children or any grandchild, only my fabulous current wife of 28 years, and some friends to support me in my illness. And, that is more than many I suppose. I am starting to do some volunteer work, as I am a early retiree, and I try to keep my mind busy. It is too easy to lead a very insular life, and miss out on the fun of actually living. I have been told that MAC may be my cross to bear for the rest of my life, and that is a scary thought at times. However, life is there to be lived. It may not be quite what I thought it would be, but it is all I have.
James
Good for you James! It sounds like you do just like I do .. try to see the glass as half full .. even if it might be 1/3 full! I’m so happy you are volunteering .. it helps to be SO aware that we are indeed SO much better off than so many other people .. having an attitude of gratitude. Like you I have a good spouse .. we support each other .. indeed we are blessed. I would NOT want to be walking this journey alone .. and we need to remember that MANY are .. another gratitude! My daughter told me about googling “MeetUp”. It is a WHOLE BUNCH of various groups of people all over the world (they were living in Hong Kong at the time) that allows you to find all kinds of ways to not only volunteer but also to socialize .. NOT focus on ourselves nor our bodies. I did what she suggested and have found it fascinating! My special interest is exploring my spirituality .. but have also joined groups for lunch/dinner/theatre/ballet/volunteer .. you name it .. a GREAT organization .. AND a lot of fun to explore! Give it a try!
Liked by Melissa23
Melissa23
@melissa23
@melissa23
Posts: 17
Joined: Jun 19, 2015
Hello All, I’ve been reading this section and am quite glad to have found it.
I discovered I have MAI/MAC just this February as I was turning 65 and retiring. They found it while trying to figure out what was triggering a glow in the PET scan other than the lung cancer they had just found in the other lung.
I’m now down to 1/2 a lung on the left side and about 3/4 on the right side due to the MAC cavitation. I’m also on chemotherapy, since they found cancer cells in 1 of 13 lymph nodes when they removed the cancer. Since the chemotherapy kills off white cells, the MAI has been taking hold again. So, yesterday I began the 3 antibiotic treatment in addition to chemotherapy.
I was doing a search and found this topic because I was trying to find out what others had been doing to deal with the side affects of the 3 antibiotic treatment. (I’m on azithromycen, rifabutin and ethambutol, daily). So far I’ve noticed that putting something in my belly before and after seems to be mandatory. Yogurt (greek) seems to help a lot. Also, I’m glad to see the comments regarding vitamin D. My regular physician was looking into a vitamin D shortage when this all started.
Fortunately I’ve found a real good pulmonologist here in central Florida that I have a lot of faith in and she’s taking very good care of me. At least I think she is.
Anyway, I just wanted to thank you all for sharing your experiences with this and also let you know how much I appreciate that. It also helps explain why I’ve been feeling so darned tired the last couple days.
Good to hear from you Nick. My prayers are with you. The antibiotics are chemical therapy in and of themselves, and to be subjected to more chemotherapy… keep us posted with your progress and we are here for you!
Best wishes and with love,
Melissa
Melissa23
@melissa23
@melissa23
Posts: 17
Joined: Jun 19, 2015
Here I am johnlk. I have just started on this site. I am an 86 yr old white male WASP. Well not P i am LDS since 1988.
Have had MAC the not so bad kind with nodules in the lower portion of lungs for past 2 @ half years. Finally diagnosed for sure this past Sep. Up till 2 years ago I have been very healthy for my age and active. Now not up to doing much and need lots of rest. I had severe phemonia 4 years ago and probably lowered my imunity since then. I was a career pilot in the RCAF in Canada for 21 years and have PTSD so cosiquently have a lot of disturbed sleep that doesnt help one to be rested.
Also had a lot of surgery in past 3 years. With atrial fibulation, had pace maker and surgery to open up caritoid artery to clean out plaqe blockage. Surgery on face for malinoma. Have elected to just be monitored and not take drugs for the MAC. To live as healthy as possible and try to build up my imunity. After all at age 86 I will probably die of some other cause than the MAC or not live until the end of a drug treatment plan. I dont need any more day to day living discomforts than I am already loaded
down with. At present half a flight of stairs is enough for me without a rest.
I would be particularly interested in hearing how it is going for other patients who are not on a drug plan for MAC but are trying to let their own body fight the MAC without drugs. I already take 4 RX for my other conditions.
Just now I dont have the stamina to do much exercise just get through the day.
Best wishes to all. John
Ahoy John! 🙂 I have been off of the antibiotics since July 2015 after a six months. I still test POS for AFB sputum and still have a productive cough. (My ribs hurt from coughing) I still (in my opinion) have ineffectual physicians overseeing my care. I have developed a consequential fungal infection that is proven to be quite resistant to conventional meds that the ‘ladies’ usually take ;( as a result of the antibiotics…
Nonetheless… I return to my ID doc and pulmonary doc in a couple of week to discuss my alleged normal CT scan with the ever present “reticulondular, interstitial, pleuroparenchymal opacities in both lung apices” which they regard as ‘normal’.
P.S. I regard the LDS as a definite P 🙂 in the broader sense of it all.
Best wishes and may the FORCE be with you!
Melissa
Melissa23
@melissa23
@melissa23
Posts: 17
Joined: Jun 19, 2015
I am new to this forum and I am a 58 y/o white male, diagnosed with MAC via brochoscopy and sputum results just over 15 months ago. I also have bronchiectasis however I am on the mild end of the spectrum with very little in the way of symptoms. Very little dry cough, next to no sputum production, bouts of fatigue that pass and I am keeping a healthy stable weight. Not on medication yet, although that could change down the track. I am under the care of a lung specialist who has other MAC patients at a large hospital here in Sydney, Australia. My biggest test is that I am a depression/anxiety sufferer and when I am feeling low physically my mental state plummets. I just have to remember I am not alone on this journey, and the news of other sufferers helps me along.
James
Hello and Welcome James!
You are definitely not alone. When I first discovered Katherine’s post and this page several months ago it has been a BLESSING. Just to discuss paths and pathways that others are and have taken and to understand that there is HOPE and that we have Each Other.
I have resigned from volunteering with children (teaching fiddle/violin) as a result of my infection. Two-fold (1) (a) because no one can give me a straight answer as to whether or not my immune system is compromised; and (b) if I am in any way contagious to the kids; (2) FATIGUE. Quitting on the Kids was a very difficult decision to make, as a result… I understand your depression.
I have since taken up school (on-line) and am about to complete my Master’s. I still play music at home (when I feel well) and that helps too.
Find a solace, (not tv…although I am a HUGE ‘Fear the Walking Dead Fan’…) and fill the voids that ultimately fill your life with Happiness 🙂
Once again…. we are here for YOU!
Best wishes and with Love…from the USA
Melissa
Liked by Colleen Young, Connect Director
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
I am new to this forum and I am a 58 y/o white male, diagnosed with MAC via brochoscopy and sputum results just over 15 months ago. I also have bronchiectasis however I am on the mild end of the spectrum with very little in the way of symptoms. Very little dry cough, next to no sputum production, bouts of fatigue that pass and I am keeping a healthy stable weight. Not on medication yet, although that could change down the track. I am under the care of a lung specialist who has other MAC patients at a large hospital here in Sydney, Australia. My biggest test is that I am a depression/anxiety sufferer and when I am feeling low physically my mental state plummets. I just have to remember I am not alone on this journey, and the news of other sufferers helps me along.
James
Melissa, I don’t know if this would help you at all .. BUT I cough horribly because the MAI/MAC left me with Bronchiectasis .. just constant coughing that racks my body. To the point my sacroiliac joint was painful. I purchased the below and wear it 24/7. I am 5’2 and 114# .. the sm/med fits me with 20″ extra at the end to give you an idea.
OPTP 671 Si-Loc Support Belt .. purchased at Amazon http://smile.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=OPTP+671+Si-Loc+Support+Belt+ (by the way: the “smile” portion is every dime I spend at Amazon .. a portion goes to our lung research! The “NTM Info & Research.org” .. if you purchase at Amazon .. check out donating to your chosen charity!)
I had an orthopedic surgeon tell me the SI joint is so tiny .. the belt could not possibly help. SORRY .. I don’t care .. all I know is that if I wear the belt .. raise one leg as I cough .. may look odd .. but it relieves my ribs/SI joint to a very bearable level. Plus the positive is that I have stomach muscles of IRON from the coughing! Hope this helps someone .. it has helped me.
Liked by Paula_MAC-2007, Melissa23
johnlk
@johnlk
@johnlk
Posts: 7
Joined: Oct 05, 2015
I am new to this forum and I am a 58 y/o white male, diagnosed with MAC via brochoscopy and sputum results just over 15 months ago. I also have bronchiectasis however I am on the mild end of the spectrum with very little in the way of symptoms. Very little dry cough, next to no sputum production, bouts of fatigue that pass and I am keeping a healthy stable weight. Not on medication yet, although that could change down the track. I am under the care of a lung specialist who has other MAC patients at a large hospital here in Sydney, Australia. My biggest test is that I am a depression/anxiety sufferer and when I am feeling low physically my mental state plummets. I just have to remember I am not alone on this journey, and the news of other sufferers helps me along.
James
Is your MAC in the upper portion of your lungs?
John
onlywalther
@onlywalther
@onlywalther
Posts: 1
Joined: Oct 12, 2015
My husband of 62 years was recently diagnosed. On top of MAC he has Marfan Syndrome. He has had two heart valve transplants, several strokes, bullectomy surgery and a pleurodesis in one lung. He is 6′-5″ and weighs 148 pounds. We meet with infectious diseases at Baylor Scott & White in Temple, TX this week. They will be testing his sputum for drug resistance prior to treatment. He was given 5-7 years with the last heart valve replacement which was 3 years ago. He has to be incredibly careful with medication because of potential affects to his liver. Our concerns are many. The length of treatment and side effects taking a toll on a person that does not have “reserves”. Would appreciate feed back. Thank you
Jill T Payne
@jilltpayne
@jilltpayne
Posts: 7
Joined: Jul 17, 2012
My husband of 62 years was recently diagnosed. On top of MAC he has Marfan Syndrome. He has had two heart valve transplants, several strokes, bullectomy surgery and a pleurodesis in one lung. He is 6′-5″ and weighs 148 pounds. We meet with infectious diseases at Baylor Scott & White in Temple, TX this week. They will be testing his sputum for drug resistance prior to treatment. He was given 5-7 years with the last heart valve replacement which was 3 years ago. He has to be incredibly careful with medication because of potential affects to his liver. Our concerns are many. The length of treatment and side effects taking a toll on a person that does not have “reserves”. Would appreciate feed back. Thank you
I would hesitate to give much “feedback” because your husband’s health is complex and so treating MAC will necessarily be the purview of the doctor who will have to decide if his liver can withstand the drugs that are needed to treat the MAC. They do check for liver enzymes when a person is on drugs that are generally used with this diagnosis. It is so difficult when at an older age one gets multiple diagnoses and treating everything is difficult. I wish you the best.
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Liked by Colleen Young, Connect Director
Melissa23
@melissa23
@melissa23
Posts: 17
Joined: Jun 19, 2015
Katherine, thanks for the reply. My depression/anxiety, diagnosed as Cyclothymia (Cyclothymic Disorder), is something I have had nearly all my adult life. It stems from losing my brother when he was only 16 years old, I was only nearly 19 years old myself, then my Grandfather and father in a short number of years then the breakdown of my first marriage. I have no contact with my adult children or any grandchild, only my fabulous current wife of 28 years, and some friends to support me in my illness. And, that is more than many I suppose. I am starting to do some volunteer work, as I am a early retiree, and I try to keep my mind busy. It is too easy to lead a very insular life, and miss out on the fun of actually living. I have been told that MAC may be my cross to bear for the rest of my life, and that is a scary thought at times. However, life is there to be lived. It may not be quite what I thought it would be, but it is all I have.
James
Thank you Katherine for the heads up on the lumbar / S1 support belt. It is in my Amazon Cart now! 🙂 I will also be looking for a lumbar support for my computer chairs for home and at work on Post, as I spend too much time in front on computers >_< on a daily basis. And James I am happy to hear that you have a 'Rock' and some friends to support you. What kind of Volunteer work do you enjoy? Having experience with persons who are afflicted with Cyclothymia, I know that two that are currently taking nothing but I believe it is 'Gaba' or/& a Theanine combo. One person with whom I have had contact with for years, has told me that the Theanine brand from Natrol available through the Vitamin Shoppe on-line is the BEST, Best wishes to ALL, With Love, Melissa
@jms64
Hi Katemn. I have been on the med’s since 2010 and taking a break from them for a few months. I too have gone into bronchiectasis and COPD and my white count and platelets very low. Going to see if they raise up without taking the drugs. I am interested in the homeopathic remedy. Started out with the MAC only.
Julie
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