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.

heathert | @heathert | Apr 7, 2017
In reply to @heathert "Hi @katemn I seem to remember you mentioned using bleach for teeth cleaning, is it just..." + (show)
@heathert

Hi @katemn I seem to remember you mentioned using bleach for teeth cleaning, is it just normal bathroom cleaning bleach?

Jump to this post

Thank you @justdontbreathewell for saving me from the bleach, much appreciated!

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heathert | @heathert | Apr 7, 2017
In reply to @heathert "Hi @katemn I seem to remember you mentioned using bleach for teeth cleaning, is it just..." + (show)
@heathert

Hi @katemn I seem to remember you mentioned using bleach for teeth cleaning, is it just normal bathroom cleaning bleach?

Jump to this post

Hi @ginak, thank you so much, I will go and get some tomorrow.

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terryb1 | @128128terry11t | 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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I, too, was diagnosed by coughing up blood. Ran to the ER where they were just going to send me home with a diagnosis of pneumonia. I advocated for myself, as this forum emphasizes, and asked to speak to a pulmonologist. Had a bronchoscopy to rule out MAI. Needless to say, it was "ruled in". I did not start treatment at that time. Years later, I had another incident of coughing up blood. Called my primary who told me to go to ER. That was a mistake as I just should have called my pulmonologist who would have asked "how much blood" and depending upon the response, simply put me on Avelox for ten days or so. When I was in the ER, the ER staff was clueless as to what to do. It was I who told them that I needed a CT scan. They then asked ME "with or without contrast?" Can you imagine how uninformed they were! Bottom line: you may cough up blood from time to time and it doesn't mean that you will start treatment simply as a result of that symptom. Certainly always call your pulmonologist.

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chinasmom | @chinasmom | Apr 7, 2017
In reply to @katemn "@fransav .. do you have a first name .. more personal. Oh @fransav, this must be..." + (show)
@katemn

@fransav .. do you have a first name .. more personal. Oh @fransav, this must be just awful for you! PLEASE have your Infectious Disease doctor CALL and work WITH your doctor for your psoriatic arthritis! You CANNOT live with unbearable pain AND going on the meds without the two doctors working in tandem .. OR getting to a MAJOR medical facility that can help you work this out. From my File Cabinet two that you might consider are:

MAYO CONTACT INFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63

** Minnesota campus for an appointment, here's the number: 507-538-3270
They will discuss your medical history with you and match you to a specialist suited to your situation. They can help you navigate your healthcare journey, answer your questions and guide you through the treatment plan. For billing and insurance information you can call Patient Account Services at 800-660-4582, or click on this link: http://mayocl.in/2hpba1s

or JEWISH NATIONAL HEALTH https://www.nationaljewish.org/treatment-programs/directory/ntm
Member @128128terry11t, Q National Jewish: how long (approximately) does it take to get in once you have sent the records and the sputum sample? A I believe that once they check your insurance and make certain that all is okay, it was about 5 weeks or so for me. If your schedule is flexible, you could ask that if they have a cancellation to let you know and you might be able to get in sooner. Don't be afraid to call them and ask that question; they are extremely kind and professional. FINANCIAL You will have an excellent experience please call the number on the site to see if you financially could go to NJH......for the first 50 years of their existence....1898 til 1958 they did not charge clients..I am on Medicare....they accepted it fully....3 months after my trip....l have yet to see a bill....they have a separate person who works out the financial part of the visit prior. I know it sounds too good to be true....but it is there to help people. l beg you to contact them to check

@fransav .. I hope some of the above helps you .. I am so glad you found us! Please read the past pages of our Forum .. you will learn a great deal about your MAC disease .. remember KNOWLEDGE IS POWER .. and please keep coming back with ANY questions you might have .. we will be here for you. AND PLEASE Members .. please jump in if you have any thoughts/hints/help on "taken off my biological meds for my psoriatic arthritis. The Otezla I was given worked for 2 yrs, but isn't working anymore & my pain is unbearable" .. she really needs our help! Hugs to all! Katherine

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@fransav. I hope your visit today is productive. Also you might want to see a pain management specialist to try to get you some relief. I too have RA and bronchiectasis with MAC. I can't take the new medications because they weaken the immune system. I've given up wearing any rings because my hands swell. Every day In the morning and with supper I take two advil or one aleve. I also grab a cold can or glass jar from thr refriderator and wrap my hands around it to help with the pain and inflammation. Sometimes heat feels better and i warm a cup of water in the microwave and hold that in my hands. I use a microwave heating pad for my back and my neck. I put Topical lidocaine on my neck, back and knees. They make it sent free now. Apply with gloves or wash hands really well afterwards so it doesnt get into your eyes. So i hope this helps a little and take care.
Becky

REPLY
chinasmom | @chinasmom | 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

@ling. Im glad you got that appointment today. For me i have a hard time admitting to myself the seriousness of my own situation and acting on it promtly. My first symptom was coughing up blood but when they asked how much and how long i couldnt say for sure. So im trying to get better . I now take a picture of my symptoms (blood streaked sputum, a rash, swelling in my hands and feet, thrush) with my cell phone and take it with me to my appointment. It also keeps track of the date the picture was taken. Probably best to keep a diary, but not always feasible. Have a great day!
Becky

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beatitnow | @beatitnow | Apr 7, 2017

QUESTION for all PRESENT and PAST BIG 3 medicine takers: This is Amy again. I started taking the big 3 meds four weeks ago...I started the 1st week with clarythomicin, 2nd with rifampin, and 3rd week with ethambutol. So, today is my 2nd week on all 3 drugs together. Last night at about 1:30am I started getting little to larger "pulses" in my intestinal area, right below my stomach. The pulses were kind of on and off for about 40 minutes...then everything was still and fine. When I took my probiotic this morning starting at 5:30am and drank water, the pulsing started a little bit again. Then when I took my Rifampin at 6:00am it started some more and then it would die down. Then, when I was able to eat at 7:15 am, it started again and has continued with just slight "bubbling" here and there. HAS ANYONE ELSE EXPERIENCED THIS, OR HAVE ANY KNOWLEDGE IF THIS IS OKAY? I know I am supposed to get another kidney/liver blood test after one month of being on the antibiotics, which I was assuming I should get after being on all 3 meds for one month? Do you think is a "normal" side effect of being on the meds, and my body will adjust soon, or do you think it sounds like something more concerning?

I thought I was doing really well with the meds besides some insomnia at night. But this knew little stomach/intestinal flutter is worrying me slightly. Please let me know your thoughts or advice if you have some! Thank you so much!!

Like everyone has mentioned, it is amazing having this group. @katemn I will get back to you with my med schedule like you had requested too at some point soon.

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beatitnow | @beatitnow | Apr 7, 2017

This is Amy again. And, by the way in addition to my question up top, I am starting to get my period right now too....so, I don't know if that has anything connected to it?? Thank you!!

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2 replies
chinasmom | @chinasmom | Apr 7, 2017
In reply to @beatitnow "This is Amy again. And, by the way in addition to my question up top, I..." + (show)
@beatitnow

This is Amy again. And, by the way in addition to my question up top, I am starting to get my period right now too....so, I don't know if that has anything connected to it?? Thank you!!

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@beatitnow, AMY this sounds like gas bubbles. Maybe from something you ate. Be more concerned if it is painful. Dont think it would be period related but all of our bodies react differrent . Im 53 still having a period and taking hormones for menopause symptoms. my pharmacy alerted me after takeing the Big 3 for four months that i might become pregnant becuase the antibiotics render birthconrol less effective. So use a backup method. Hope this information helps.
Have a great day,
Becky

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Katherine, Alumni Mentor | @katemn | Apr 7, 2017
In reply to @beatitnow "This is Amy again. And, by the way in addition to my question up top, I..." + (show)
@beatitnow

This is Amy again. And, by the way in addition to my question up top, I am starting to get my period right now too....so, I don't know if that has anything connected to it?? Thank you!!

Jump to this post

@beatitnow .. Amy and @chinasmom .. Becky , I really like Becky's answer. BUT we are not doctors! If you are really concerned I would give a quick call to your doctor's office .. your best bet. Also ask about birth control .. I had not heard that before ..thanks Becky for bringing that up .. excellent information! Hugs to you both! Katherine

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

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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