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Hello. My first time here and I can see that the information I am reading is helpful and I don't feel so alone. I recently have been diagnosed with mycobacterium Abscessus. I can't walk very far without going into a breathing attack. I wonder if this disease is the reason I can't walk very far? I've had two sputum tests, one positive and one negative. My doctor says I need to take another sputum test as she doesn't want to go forward with certain drugs until she sees if the next test is negative or positive. I am on oxygen full-time. I am unable to clean my house or cook. I've had bacteria pneumonia twice in a year since I moved from Missouri to Texas. I am 77 years old and have been in fairly good health until about two years ago in MO I started getting tired and sleeping a lot. I unfortunately had a doctor that did not give me the care I needed but I didn't realize it at the time. I was not referred to a pulmologist, did not know I had copd and learned from other people that I needed more help. I begged for oxygen and a nebulizer and finally got it and it helped a great deal. Now that I am in TX I am getting great care. I'm just worried about this disease if I can beat it or not. It's a tough one. I want to walk again. Any advise you can give me is greatly appreciated.
Replies to "Hello. My first time here and I can see that the information I am reading is..."
Katherine, thank you so much for your encouraging words. I will most definitely take your advise and read all I can to educate myself on this disease. It is comforting to know others like yourself understand. I am excited to learn all I can and to know I could actually beat the MAC is giving me hope. I appreciate what you said about the cultures. I will be considering this seriously and if I don't get answers, then I will get a second opinion.
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Hello Sandy, I am SO glad you have found our Forum .. Welcome! If you have done any reading of past pages .. which I STRONGLY suggest you do to educate yourself on our disease .. you will find that I ALSO had “MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES”. Now Sandy .. if you read past pages you will find MANY of us have “beaten” this disease ie have become “stable”! Myself .. I have been “stable” .. off antibiotics since May 2014 .. travel .. live a full happy live .. age 73 .. life is good!
Sandy, you REALLY need to educate yourself on this disease that we all share. I would especially recommend an article I just recently happened upon .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. I have put the link below:
GOOD INFO http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf
and GOOD INFO: http://maclungdisease.org/frequently-asked-questions
The reason it is SO important to educate yourself is that YOU are your OWN best advocate. Just as in Mo where you got poor care .. had you known what you are going to learn here .. you would have FOUGHT for yourself! You are given but one body in this lifetime .. you MUST take care of it .. so it can take care of you! Frankly I DISAGREE with your doctor relying ONLY on a positive/negative sputum test! WHY? Because you will learn from reading the pages of this Forum that your doctor could end up with 2 out of 3 NEGATIVE sputum tests BUT that could ONLY mean the sputum came from areas of the lungs that do NOT have issues! That is WHY there is usually a SERIES of cultures .. so that there will be cultures from VARIOUS areas of the lungs! BUT with your related issues of fatigue .. poor breathing .. sleeping a lot. YOU must TELL the doctor all these issues .. THEN get a second opinion if you are NOT satisfied with it! Keep in mind it is the overall picture of your health that the doctor should be considering .. NOT just 2 out of 3 cultures.
Now Sandy, WITH a good Infectious Disease Doctor that is EFFECTIVELY following your MAC .. Yes .. you absolutely can “beat” the MAC .. I did and many of the rest of us have! But you must keep in mind that MAC can only be “stabilized” .. not cured. That is why after the antibiotics have stabilized the MAC .. we must continue to be followed with check ups. Please do your reading .. and keep coming back to our Forum .. you will find our people are all on the same journey .. plus are very kind and supportive! I am sending you a hug during this tough initial time! Stay strong and stay peaceful! Katherine