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!

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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:
- 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.

becky33 | @becky33 | Apr 7, 2017

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

@becky33 .. Becky, it sounds like you have a real winner on your hands! So happy for you! Thank you for jumping in! Keep us posted on the Smart Vest .. it seems to help some people and some not. Hugs! Katherine
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If you are interested .. from my File Cabinet on various testing:
TESTING:
BASELINE: HEARING AND VISION (Vision: Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES
QUARTERLY: HEARING and VISION
NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

**** Lab tests:
CBC- Complete Blood Count (CBC)
ALT- Alanine Aminotransferase (ALT) LIVER
alk phosphatase- Alkaline Phosphatase - LIVER
serum creatinine-. Creatinine and Creatinine Clearance-SERUM CREATININE - KIDNEY

TESTING RECOMMENDED FOR VITAMIN LEVELS 1. Ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD) *From our member @tdrell Terri, my Primary Dr at NJH doubled the VD I take to 4000 units a day... my lab test showed I was at 50 and she said she likes to see it at 100.
2. Ask for your B-12 level to be checked .. they can get too low
3. Personally I always purchase the brand Nature Made vitamins for it's quality .. ' Nature Made is the first brand to earn the USP Verified Mark on one of its products, an independent certification for quality and purity.'

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ling123 | @ling123 | 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.

Jump to this post

Becky and Katherine, thank you for your concern and for sharing information. I saw the pulmonary specialist today. He had ordered a chest X-ray to be taken before he saw me. He then compared the X-rays from 2 1/2 years ago when MAC was first diagnosed, the X-ray done when I went in for followup a month ago and the newest one. He said there was a slight change in the newest image but considering that I had had a bad cold that affected my lungs, he was not surprised. But he couldn't see any suspicious development other than the conclusion that it looks like I'm having an infection which should be taken care of. He suggested a 10-day regimen of antibiotics. If the bloody mucus clears up and my condition is restored to prior to the blood episode, then he would see me again in 6 months. But if my condition does not improve or worsens, let him know right away. I'm fine with that. Becky, I can't imagine what you are going through. All I have is coughing up blood, no rash, swelling and thrush. I'm pretty much functioning as I would have without the MAC, although not the first time. That was way too much blood and too frequently to go to work or even go outside the house. This time around, I can keep all my plans.

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ling123 | @ling123 | 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."

Jump to this post

Thanks, Katherine. The large amount of blood was the very first time 2 1/2 years ago that sent me to ER for an overnight stay. It was determined that I had MAC after testing a number of sputum samples. This time around, it either small blood clots or streaks.

REPLY
boomerexpert | @boomerexpert | 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.

Jump to this post

@ling123 Great news!! Yay!

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becky33 | @becky33 | Apr 7, 2017

Thank you for the info. I will certainly ask about all these tests at my appointment April 28th. Love to have found other people with this disease so I know what to look for and how my body compares to other people with MAI.

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beatitnow | @beatitnow | Apr 7, 2017

Thank you to everyone for the advice earlier on my "fluttering" in my lower abdomen. It has pretty much stopped for the last part of the day, so hopefully it will stay that way. 🙂

We are a military family and we currently live in Montana, but we are moving to Illinois in June. We hope to be there for the rest of our lives because my husband will retire most likely in 2 years. (And, my pulmonary doctor is in St. Louis which is 25 minutes away.) Yay!!

We are leaving tomorrow to fly to St. Louis to go house hunting. WE ARE MOST LIKELY GOING TO BUILD A HOUSE, SO......

1) DOES ANYONE HAVE ANY RECOMMENDATIONS ON ITEMS THEY WOULD BUY TO INSTALL IN A NEW HOUSE THAT WOULD HELP PREVENT MAC/MAI AS MUCH AS POSSIBLE?....Like a special water treatment system, bath shower heads, etc. What have you all done to increase prevention at your houses?

2) WHEN YOU ALL FLY, DO YOU WEAR A SURGICAL MASK TO PREVENT YOURSELF FROM CATCHING GERMS? I really don't "want" to, but I am curious what most of you do.

REPLY
2 replies
ginak | @ginak | 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.

Jump to this post

Good luck with your appointment. Coughing up blood was definitely very scary for me too. Especially since I was on blood thinners. I didn't know what was happening! But no meds for me yet since I have no other symptoms. This forum has been very helpful and informative for me. I've really learned so much and everyone is very helpful to each other.
Gina

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beatitnow | @beatitnow | 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

Jump to this post

@chinasmom....I have been going to a pulmonologist in St. Louis for the past two years. His name is Dr. Castro, he is at Barnes Jewish Hospital. He apparently is a "world renown" pulmonologist, and he sees many MAC patients. The other doctors that work with are probably pretty good also, this is a teaching hospital. Please let me know if you have any other questions.

What part of St. Louis do you live in? It's so nice to be able to connect with someone nearby. 🙂

REPLY
ling123 | @ling123 | 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.

Jump to this post

Thank you, @ginak. Hopefully you won't have other symptoms except coughing up blood. That's what was like for me when I was first diagnosed. Seeing blood out of the blue was really shaking me up. This time around, though, I must have caught something which eventually went into my lungs. So I have to be on antibiotics for the next 10 days.

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