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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@128128terry11t, Terry, I was JUST researching for myself .. Hope you find it helpful! But I WILL say .. I ignored green sputum .. AND perhaps it was a sign of Pseudomonas?? PER my File Cabinet: Common signs and symptoms of pseudomonas include shortness of breath, fever, chills, increased heart rate, decrease appetite, malaise, systemic inflammatory response, productive cough, increase sputum production that may have a yellow-green pigment, is thick, and usually foul smelling. Really do not know .. if I was sitting in your shoes I would request that it be checked out! Bronchiectasis OR Pseudomonas. Hugs! Katherine
Also from my File Cabinet on Bronchiectasis:
BRONCHIETASIS-SYMPTOMS OF
Symptoms of bronchiectasis http://www.nhs.uk/Conditions/Bronchiectasis/Pages/Symptoms.aspx The most common symptom of bronchiectasis is a persistent cough that brings up a large amount of phlegm on a daily basis. The phlegm can be clear, pale yellow or yellow-greenish in colour. Other people may only occasionally cough up small amounts of phlegm, or none at all. Other symptoms may include: shortness of breath wheezing coughing up blood or blood-stained phlegm chest pain joint pain clubbing of the fingertips – the tissue beneath the nail thickens and the fingertips become rounded and bulbous Signs of a lung infection If you develop a lung infection, your symptoms usually get worse within a few days. This is known as an infective exacerbation and it can cause: coughing up even more phlegm, which may be more green than usual or smell unpleasant worsening shortness of breath You may also: feel very tired cough up blood, if you haven't already done so experience a sharp chest pain that's made worse when breathing (pleurisy) feel generally unwell When to seek medical advice If you haven't previously been diagnosed with bronchiectasis and you develop a persistent cough, visit your GP for advice. While persistent coughing may not necessarily be the result of bronchiectasis, it requires further investigation. If you've been previously diagnosed with bronchiectasis and you begin to experience symptoms that suggest you have a lung infection, contact your GP. You'll usually need treatment with antibiotics. Some people with bronchiectasis are given a stock of antibiotics as a precaution, in case they suddenly develop a lung infection. When to seek immediate medical advice Note Some people with bronchiectasis develop a severe lung infection that may need to be treated in hospital. Signs and symptoms of serious lung infection include: a bluish tinge to the skin and lips (cyanosis) confusion a high temperature of (100.4F) or above rapid breathing (more than 25 breaths a minute) severe chest pain that makes it too painful to cough and clear your lungs If you experience any of the above, phone the healthcare professional in charge of your care immediately. This may be your GP, a doctor who specializes in lung conditions (pulmonologist) or a specialist nurse.
AND https://bronchiectasisnewstoday.com/2017/04/13/nine-common-symptoms-of-bronchiectasis/
@chinasmom, Becky, I feel the same way .. I tell MYSELF to ignore Connect .. GET THINGS DONE! But truthfully I learn/receive from all of you just as much as I give! Hugs to all! Katherine
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1 ReactionHi Terry, I also have bronchiectasis andMAC. Doc is putting me on 1/2 hour of exercise daily and nebulizer, to get the sputum up. Do you ever cough up blood? Just curious because I do.
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1 ReactionFrom what I understand, the MAC had become resistant to the average hot
water tank temp. Remember hot tubs were set at 104 degrees max, and that worked
for awhile. They became resistant to that temperature. That is why we
should avoid hot tubs. It was never said to NOT turn up the temps in your hot
water heater because it causes these bugs to become resistant. Because the
MAC has been known to be mutated, the water temp should be raised to
at least 120 degrees.
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1 Reaction@unicorn
Hi Crista, I have coughed up a little blood on two diff occassions. It
wasn't much, but it scared the bejesus out of me. I haven't had it happen in
years, due to the fact that I am on alternating monthly antibiotics. I have
texted you this info in more detail previously. It may have gotten overlooked
because there are so many posts. I had replied to your post about this.
hugs!
@unicorn
Hi Crista. The three drug cocktail is the standard for treatment right now. They
are working on future treatments that will be nebulized only antibiotics. They
are still in clinical trials. I was diagnosed in 2005 with MAC and refused the
treatment because it is hard on the liver and two out of three drs said they
wouldn't advise treating it that way. They felt like it was only a 50/50 chance
of working and that it does not cure it and it usually comes back eventually.
So.....I chose to treat it with antibiotics and it worked from 2005-2013.
It came back in 2013 and my dr at the Mayo decided to treat with a rotating
monthly antibiotic. I was on Cipro 500mg 2xday for ten days, then Doxycycline
500 mg 2xday for 10 days. We switched these two out every other month. Then, in
2016, test revealed pseudomonas infection. So now I am on Tobramycin nebulized
2xday for 28 days, then 10 days off, then 10 days on Cipro etc. That is where I
am at now. Have to run now. Hope this helped.
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1 Reactionso sorry Windwalker, I didread your posts.
@unicorn Christa .. it is important to understand that mycobacterium can be "stabilized" according to Dr. Aksamit at Mayo Clinic but not "cured" .. as such we MUST be vigilant about check ups and our personal health care regime .. once those critters are in our lungs they many lay dormant .. but they do NOT go away. We must remain vigilant. Live our lives happily .. but not neglectfully. . remembering that Knowledge is Power! Hugs! Katherine
Crista, you can register with bronchandntm360social.org it is a research
foundation. They would like everyone that has MAC and bronchiecstasis to sign
the registry. That way they have numbers to work with when trying to get funding
for their research. They also need people to do clinical trials.
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1 ReactionFirst coughed up blood several years ago which led me to go to ER. Very very frightening. I was diagnosed by the ER doctor as having pneumonia. I believed that I did not and insisted upon seeing a pulmonologist (our Katherine always advises us to speak up for ourselves). As a result of seeing that specialist I was eventually diagnosed with MAC. Fast forward several years later and I again coughed up blood. I mistakingly called my primary care physician instead of pulmonologist (stupid mistake and I don't know why I did it). He insisted that I go to ER. I did and there I sat in the ER because they admitted me and had no bed. When I arrived at the ER, I told the ER doctor what I had and that I needed a CT scan. He then asked ME "with or without contrast"! I told him "without" and it was then that I realized that I was caught in Wonderland. It's frightening when you know more than the person treating you. After the fact my pulmonologist told me that I that there was no reason to have gone to the ER. The moral of the story is that if you do need to go to an ER because there is a lot of blood and it can't be stopped, make sure that you go to an ER that has an interventional radiologist. Recently, there have been posts cautioning about that need. Sorry for a long answer to your short question. Terry
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