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 | Apr 7, 2017
In reply to @ling123 "Hi Katherine, I was doing a google search and this forum came up as one of..." + (show)
@ling123

Hi Katherine, I was doing a google search and this forum came up as one of the results. I can't believe my eyes when I opened the link to realize that this forum was entirely dedicated to MAC. First of all, thank you so very much to have been organizing this forum for so many years. I'm glad to find out from your forum that I'm not alone in this. I had never heard of the disease before I was diagnosed with it. My first episode occurred in September 2014. It came on suddenly without any warning. It started out as a feeling of wanting to cough and seeing some bright red blood in the stuff that was coughed up. I thought maybe it was bleeding gum or bleeding nose. But the blood kept coming and the amount was increasing for the next few hours until I was forced to admit that it was time to go to the ER. I spent the night there coughing up ton of blood. Well, maybe it wasn't as much as the medical staff would considered concerning because I was the only one who was worried every time I looked at the waste basket getting filled up with bright red tissues. At first, they suspected TB. So everybody was gowned up. By next morning, the blood reduced to negligible so they sent me home. Within an hour of getting home a county infectious disease nurse showed up to collect my sputum samples. And I also made an appointment to see a pulmonary specialist at the university hospital. The specialist didn't thought it was TB because, besides coughing up blood, I did not have any other symptoms that would point to TB. His conclusion was: it could be MAC but we'd wait to see what the sputum test said. Three sputum samples later, sure enough. It was not TB and I was diagnosed with MAC. During the followup visit, the specialist told me that I had the choice of meds or no meds. By then I was feeling great and no more blood. I said I'd rather not on meds if I didn't have to. He said to schedule periodical followup visits and will only prescribe meds if the condition worsens. Well, I was all clear until this morning. I have been coming down with something in the last couple of weeks. It felt like a cold. I'm now at the tail end of it with no chills or fever and coughing is much reduced. But early this morning I saw bright red blood in the stuff I coughed up. Fortunately, it has been intermittently occurring for the last 8 hours, blood, no blood. And the amount has not increased like last time. I emailed the pulmonary specialist asking him for advice. Hopefully it is not going to be bad news.

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@ling123 Ling what GREAT news! Since your Xray looks ok .. and you are feeling ok .. going back for a check up in 6 months .. I am completely comfortable with your situation .. it sound just fine! As he said .. just be aware of your symptoms .. aware of your body .. other than that just live your life .. have fun and be happy! Keep us posted .. we are happy for you! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Apr 7, 2017
In reply to @katemn "Good MAC Doctor? Posted by @chinasmom in MAC & Bronchiectasis, 2 hours ago I have been..." + (show)
@katemn

Good MAC Doctor?
Posted by @chinasmom in MAC & Bronchiectasis, 2 hours ago
I have been searching for either an infectious disease doctor or a pulmonary doctor in the St .Louis Missouri area to treat MAC. It's exhausting work. I currently have pulmonary doctor with a prescription pad and an infectious disease student.
Please help if you know of a good one.
Becky

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@chinasmom Becky, I am going to move your Post to the Main MAC page .. hoping you might get more answers there. Yikes it must be SO frustrating to have that kind of experience with your doctor! "an infectious disease student" .. is that at a teaching hospital? .. and no luck just googling doctors in the area? Hope someone jumps in with some help! Hugs! Katherine

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@beatitnow .. Amy thank you for jumping in with this helpful information .. great for our MAC pages for anyone living in the area! Hugs to both of you! Katherine

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Katherine, Alumni Mentor | @katemn | Apr 7, 2017

@beatitnow .. Amy, the below is ONLY my opinion so take everything with a grain of salt. I hope you find at least SOME help in it! Have a safe trip .. AND have fun as you do it! Hugs! Katherine
a. after a successful 22 year career as a Realtor (after a successful corporate career) I ALWAYS told my clients NOT to build new construction because you are paying TOP DOLLAR .. today's dollar. Find a home 1 to 5 years old with a seller who NEEDS TO SELL .. buy at a good price a home that meets MOST of your criteria .. THEN use that money you saved to make any changes you prefer. MOST people who build new construction put in WAY TOO MANY upgrades that as a 2nd home buyer you will pay ZERO for! Just give it some thought .. if you are retiring .. you can use that xtra money to travel and have fun with. Plus I SAW the strain new construction had on marriages .. BIG TIME! A LOT of stress!

1. You CANNOT prevent MAC/MAI .. the best thing written I've seen I put in my File Cabinet:
I LOVED THIS NOTE OF SANITY FROM MEMBER @maryjo2sell .. Mary Jo Just to join the discussion I think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don't think any of us truly know how we got our NTM. (non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live. (p.s. After I read Mary Jo's note I thought about I had just been to a movie the night before .. had a soda out of THEIR faucet with IT'S biofilm and had ice cubes from THEIR machine .. had not even thought about it! Plus had dinner at a restaurant before that .. just think about that .. heavens protect us!! Mary Jo is SO correct in bringing sanity to our conversation!)

PLUS from Dr Aksamit Mayo Clinic:
FILTERATION OF HOME WATER SYSTEMS Hello Katherine, Again, apologize for the delayed response. Let me share with you information received from a colleague, Dr. Joseph Falkinham from Virginia Tech University. He is one of the leading experts in the country and world, studying these very issues for many years. I might add that there is no definitive data as to whether any of these home water modifications of exposure will impact the clinical course of pulmonary NTM patients, and if so to what extent. Likewise, it is equally unclear as to what impact these modifications would have on minimizing risk of development of pulmonary NTM disease if changes are made prior to development of disease. Please let me know if additional information is needed or if I can clarify further.
Regards,
Dr. A
(from Dr. Falkinham)
(1) Even with installation of a 0.2 micron meter pore size filter, the house will always have NTM as they are in the pipe biofilms. They grow in the biofilm on nutrients in the filtered water and inoculate the water.
(2) As an alternative, I suggest filters on just those water sources where aerosols can be generated; namely a shower and a water tap in the bathroom...maybe even in the kitchen. Those places should only be used by the NTM patient, not everyone, as the filters are expensive and need regular replacement.
(3) The 0.2 micron filters clog, so it is important to pre-filter the water (1-5 micrometer filters). The larger pore filters are less expensive than the expensive 0.2 micro meter pore size filters.
Content above is information provided by Aksamit, Timothy R., M.D. on 03-Feb-2017 14:09
@pamelasc1, Pamela I think you hit the nail on the head. You would have to CONSTANTLY have the water tested for mycobacterium because as Dr. Aksamit said .. my kitchen special filtration system ONLY has 0.2 micron filtered water going through it .. but he said the faucet itself would STILL retain SOME moisture after use/shut off .. developing in biofilm in the faucet .. developing in mycobacterium!!

2. Personally I do wear a mask when flying because of all the cold/virus .. and my compromised immune system .. mine is:
TRAVEL-MASK and Air Supply Mini-Mate Personal Ionic Air Purifier--Black I was traveling to a VERY air polluted area .. I did a LOT of research and found there was a BETTER mask than the 3M N95 mask .. PLUS could looked kinda cute! I found it decent to breath with. I now will carry it as needed. https://www.amazon.com/gp/product/B01KK2NSVK/ref=as_li_qf_sp_asin_il_tl?ie=UTF8&tag=cambridgemask-20&camp=1789&creative=9325&linkCode=as2&creativeASIN=B01KK2NSVK&linkId=f4be07a257cb28b462c1db1dc0c037ab
CLEANING Washing Instructions – can I wash the mask? Yes, you can CAREFULLY hand wash it with some mild soap. Note that the masks are washable, but cleaning them only removes dirt not pollution trapped inside the filter. So the mask needs to be replaced after extended use to ensure proper filtration.
SIZING We have found that the best way to choose the mask is by weight. MEDIUM: 33 – 64kg= 73 to 141#
*REPLACMENT TIME How long can I use it? Cambridge Masks™ are non-disposable, meaning that you can use them for potentially hundreds of hours. The length of time they are suitable for depends on how polluted the environment is when you use it. A table is provided below, but a “rule of thumb” (a guideline) is that you can use the masks on a regular basis for 3-6 months before it needs replacing. Note that the masks are washable, but cleaning them only removes dirt not pollution trapped inside the filter. So the mask needs to be replaced after extended use to ensure proper filtration.
NOTE: Beyond Index Over 500 Visibility below 600 meters. Fog-like clouds of pollution clearly visible even in bright sunlight. WILL LAST 90 hours Hope you find this helpful! Katherine ALSO use: Air Supply Mini-Mate Personal Ionic Air Purifier--Black https://smile.amazon.com/gp/product/B000B6CMZ4/ref=oh_aui_search_detailpage?ie=UTF8&psc=1

REPLY
Katherine, Alumni Mentor | @katemn | Apr 7, 2017
In reply to @katemn "@ling123 Ling, I just found this post from 2016 .. hope these Members jump in with..." + (show)
@katemn

@ling123 Ling, I just found this post from 2016 .. hope these Members jump in with some hints/help. Hugs! Katherine

"For that much blood loss I think it’s worth another visit. I’m also tagging @suzieapples, @ehliny, @melissa23, and @suttonmac2009 who have all written in other MAC discussions about coughing up blood."

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@ling123, Ling I also at times have small blood clots or streaks .. don't give it a thought .. I WOULD if it became excessive .. but so far it never has. Hugs! Katherine

REPLY
ling123 | @ling123 | Apr 8, 2017
In reply to @ling123 "Hi Katherine, I was doing a google search and this forum came up as one of..." + (show)
@ling123

Hi Katherine, I was doing a google search and this forum came up as one of the results. I can't believe my eyes when I opened the link to realize that this forum was entirely dedicated to MAC. First of all, thank you so very much to have been organizing this forum for so many years. I'm glad to find out from your forum that I'm not alone in this. I had never heard of the disease before I was diagnosed with it. My first episode occurred in September 2014. It came on suddenly without any warning. It started out as a feeling of wanting to cough and seeing some bright red blood in the stuff that was coughed up. I thought maybe it was bleeding gum or bleeding nose. But the blood kept coming and the amount was increasing for the next few hours until I was forced to admit that it was time to go to the ER. I spent the night there coughing up ton of blood. Well, maybe it wasn't as much as the medical staff would considered concerning because I was the only one who was worried every time I looked at the waste basket getting filled up with bright red tissues. At first, they suspected TB. So everybody was gowned up. By next morning, the blood reduced to negligible so they sent me home. Within an hour of getting home a county infectious disease nurse showed up to collect my sputum samples. And I also made an appointment to see a pulmonary specialist at the university hospital. The specialist didn't thought it was TB because, besides coughing up blood, I did not have any other symptoms that would point to TB. His conclusion was: it could be MAC but we'd wait to see what the sputum test said. Three sputum samples later, sure enough. It was not TB and I was diagnosed with MAC. During the followup visit, the specialist told me that I had the choice of meds or no meds. By then I was feeling great and no more blood. I said I'd rather not on meds if I didn't have to. He said to schedule periodical followup visits and will only prescribe meds if the condition worsens. Well, I was all clear until this morning. I have been coming down with something in the last couple of weeks. It felt like a cold. I'm now at the tail end of it with no chills or fever and coughing is much reduced. But early this morning I saw bright red blood in the stuff I coughed up. Fortunately, it has been intermittently occurring for the last 8 hours, blood, no blood. And the amount has not increased like last time. I emailed the pulmonary specialist asking him for advice. Hopefully it is not going to be bad news.

Jump to this post

@katemn Thanks again, Katherine, for all you do for the forum that pulls us together and helps us form the kind of comradery that we are not able to find elsewhere. I totally agree with you. We can't let this disease get us down. Love your advice which can't come from anyone who has not been through what we have been through, no matter how much they love us. I'm a happy person and stay very active and eat healthy. I just need to be aware of the symptoms and contact my pulmonary specialist as soon I feel that something does not feel right. At least this time around, there was no big scare and the pit in my stomach as I already know what is going on with me. That is actually a very good feeling. Have a great day. Will keep everybody posted of my progress.

REPLY
ling123 | @ling123 | Apr 8, 2017
In reply to @katemn "@ling123 Ling, I just found this post from 2016 .. hope these Members jump in with..." + (show)
@katemn

@ling123 Ling, I just found this post from 2016 .. hope these Members jump in with some hints/help. Hugs! Katherine

"For that much blood loss I think it’s worth another visit. I’m also tagging @suzieapples, @ehliny, @melissa23, and @suttonmac2009 who have all written in other MAC discussions about coughing up blood."

Jump to this post

Good to hear. That is exactly the kind of things you don't get from anywhere else: exchange of information and experiences. Your reply is making my day.

REPLY
Katherine, Alumni Mentor | @katemn | Apr 8, 2017
In reply to @ling123 "Hi Katherine, I was doing a google search and this forum came up as one of..." + (show)
@ling123

Hi Katherine, I was doing a google search and this forum came up as one of the results. I can't believe my eyes when I opened the link to realize that this forum was entirely dedicated to MAC. First of all, thank you so very much to have been organizing this forum for so many years. I'm glad to find out from your forum that I'm not alone in this. I had never heard of the disease before I was diagnosed with it. My first episode occurred in September 2014. It came on suddenly without any warning. It started out as a feeling of wanting to cough and seeing some bright red blood in the stuff that was coughed up. I thought maybe it was bleeding gum or bleeding nose. But the blood kept coming and the amount was increasing for the next few hours until I was forced to admit that it was time to go to the ER. I spent the night there coughing up ton of blood. Well, maybe it wasn't as much as the medical staff would considered concerning because I was the only one who was worried every time I looked at the waste basket getting filled up with bright red tissues. At first, they suspected TB. So everybody was gowned up. By next morning, the blood reduced to negligible so they sent me home. Within an hour of getting home a county infectious disease nurse showed up to collect my sputum samples. And I also made an appointment to see a pulmonary specialist at the university hospital. The specialist didn't thought it was TB because, besides coughing up blood, I did not have any other symptoms that would point to TB. His conclusion was: it could be MAC but we'd wait to see what the sputum test said. Three sputum samples later, sure enough. It was not TB and I was diagnosed with MAC. During the followup visit, the specialist told me that I had the choice of meds or no meds. By then I was feeling great and no more blood. I said I'd rather not on meds if I didn't have to. He said to schedule periodical followup visits and will only prescribe meds if the condition worsens. Well, I was all clear until this morning. I have been coming down with something in the last couple of weeks. It felt like a cold. I'm now at the tail end of it with no chills or fever and coughing is much reduced. But early this morning I saw bright red blood in the stuff I coughed up. Fortunately, it has been intermittently occurring for the last 8 hours, blood, no blood. And the amount has not increased like last time. I emailed the pulmonary specialist asking him for advice. Hopefully it is not going to be bad news.

Jump to this post

@ling123, Ling .. THIS is you and MANY people's answer in a nutshell! A GREAT philosophy for those of us with our health issues to live by .. love your philosophy! " I'm a happy person and stay very active and eat healthy. I just need to be aware of the symptoms and contact my pulmonary specialist as soon I feel that something does not feel right.' Do keep us posted .. AND jump in when you see a newcomer that you might help .. there is always someone that you are ONE step ahead of on our shared journey! Hugs to you! Katherine

REPLY
ling123 | @ling123 | Apr 8, 2017
In reply to @ling123 "Hi Katherine, I was doing a google search and this forum came up as one of..." + (show)
@ling123

Hi Katherine, I was doing a google search and this forum came up as one of the results. I can't believe my eyes when I opened the link to realize that this forum was entirely dedicated to MAC. First of all, thank you so very much to have been organizing this forum for so many years. I'm glad to find out from your forum that I'm not alone in this. I had never heard of the disease before I was diagnosed with it. My first episode occurred in September 2014. It came on suddenly without any warning. It started out as a feeling of wanting to cough and seeing some bright red blood in the stuff that was coughed up. I thought maybe it was bleeding gum or bleeding nose. But the blood kept coming and the amount was increasing for the next few hours until I was forced to admit that it was time to go to the ER. I spent the night there coughing up ton of blood. Well, maybe it wasn't as much as the medical staff would considered concerning because I was the only one who was worried every time I looked at the waste basket getting filled up with bright red tissues. At first, they suspected TB. So everybody was gowned up. By next morning, the blood reduced to negligible so they sent me home. Within an hour of getting home a county infectious disease nurse showed up to collect my sputum samples. And I also made an appointment to see a pulmonary specialist at the university hospital. The specialist didn't thought it was TB because, besides coughing up blood, I did not have any other symptoms that would point to TB. His conclusion was: it could be MAC but we'd wait to see what the sputum test said. Three sputum samples later, sure enough. It was not TB and I was diagnosed with MAC. During the followup visit, the specialist told me that I had the choice of meds or no meds. By then I was feeling great and no more blood. I said I'd rather not on meds if I didn't have to. He said to schedule periodical followup visits and will only prescribe meds if the condition worsens. Well, I was all clear until this morning. I have been coming down with something in the last couple of weeks. It felt like a cold. I'm now at the tail end of it with no chills or fever and coughing is much reduced. But early this morning I saw bright red blood in the stuff I coughed up. Fortunately, it has been intermittently occurring for the last 8 hours, blood, no blood. And the amount has not increased like last time. I emailed the pulmonary specialist asking him for advice. Hopefully it is not going to be bad news.

Jump to this post

Hugs right back. 🙂

REPLY
chinasmom | @chinasmom | Apr 10, 2017
In reply to @becky33 "I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis,..." + (show)
@becky33

I was recently diagnosed with MAI by Dr. Adam Anderson at Washington University in St. Louis, Mo. Have only seen him 1 time last Oct but his nurse has kept in good contact with me since my first visit. He ordered all the usual pulmonary tests that I had before ordered by my pulmonologist and then Dr. Anderson ordered the sputum test and when it came back positive, he then had me do 2 more 20 days apart to make sure they came back positive and they did. He started me on the Big 3 antibiotics Jan 20th and I go back to him April 28th and have appointment for more testing the morning before I see him. His nurses name is Anne Ellis and if I call her, she either answers or gets back to me within an hr. I ask my questions and she gets back to me within 3 hrs . So far I'm happy with him as I feel better than I have in yrs. I can actually breathe. I have the aches and pains of body ache and terrible hot flashes all night and I'm very fatigued but I can breathe. He also ordered a Smart Vest and I believe that has helped a lot. I do it 2 times a day. I do intend to ask Dr. Anderson how many MAI patients he's treating. According to his nurse Anne, he will start monthly sputum tests, and blood work to check my kidneys and liver when I see him again. Will also be asking him about hearing and vision testing at that time. I am a winter Texan and have been gone from the St. Louis area since Dec so that is why he hasn't started the other testing according to his nurse. My pulmonologist referred me to an infectious dr who put me on infusions every 8 hrs for 2 wks and when that didn't stop the coughing his office got me into Dr. Anderson at Washington University. Took from July to Oct to get into see him and that was with the infectious dr's office making the appointment. If you want his #, I can give it to you.

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@becky33, thank you for a prompt response and yes, please, i would like Dr Anderson's information. Im shocked at all the wonderful responses I've been getting. You might want to have your thyroid checked . Some times our antibiotics can affect thyroid hormone levels and cause the hotflashes and fatigue. I understand the winter texan thing, as my mom was one until her Huntington's chorea got too bad and grounded her. I took care of her for a year after her diagnosis, when it became to difficult, she went into a nursing home. We went to the movement disorder clinic at Barnes hospital but not much they could do so she didn't want to go anymore. I have this huntington's gene and will go through loosing my ability to walk and talk. But on to brightside i know whats coming, but i can choose not to think about it. That must be God's work because there is no other way to explain it! I will watch for your reply with Dr Anderson's information. Have a wonderful day!
Becky

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