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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Hello. I am new to this. I am a 55 yr old woman, who is a caregiver for my ill parents and an adult handicap son. I was recently diagnosed with MAC and I see a Infectious Doctor on the 26th. I am so scared about the treatment. I have heard the reaction to the meds are worse then the disease. I am afraid I won't be able to take care of my family. I do not have anyone to help and I am in this alone. I really just want to know if the side effects are as bad as my pulmonary Doctor said. I am thinking about not talking the meds. Anyone have any suggestions? Scared.. 4-23-16
Replies to "Hello. I am new to this. I am a 55 yr old woman, who is a..."
Calcallahan, I am SO glad you found this supportive forum! I was diagnosed at age 64 .. I also was very afraid of the antibiotic treatment after reading so much negative on the internet .. to the point that I "refused" treatment foolishly until I was diagnosed with a 2ND very serious mycobacterium "ABSCESSUS SUBSPECIES" . Because I waited for treatment .. I then had a much more serious process of treatment. Frankly I wish I had not waited. For me personally I did have some issues .. fatigue .. sleep disturbance .. weight loss etc. BUT I have now been stable since May 2014!! YEAH!
It might help you to read through the various posts on this forum .. there is a LOT of information here on various people's journeys. Each person must make their own decision .. each body will react differently .. adjust differently .. take a different amount of time to adjust to the meds .. BUT with a positive attitude and putting one foot in front of the other .. knowing that if NOT treated the mycobacterium will NOT go away .. it just gets worse .. it is an easier decision just to put your face to the sunshine and move forward.
Remember .. you are NOT alone .. keep coming back to this forum .. there are a LOT of kind supportive people here to help you along on your journey!
Hi. Thank you for your advice. I have trouble in the past with taking meds and that is one reason why I am so scared. I wonder if I will be able to take care of my parents and my son who is handicap. I am so scared that I find myself crying all the time. I will find out Tuesday more info when I go to this doctor.Thanks again. Good luck!Cheri
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Cacallhan.....I was diagnosed in May, 2015. I tried twice to take the medicine and my body would not tolerate it....that does not mean your body would react the same. Give it a try. That way you will know as many are successful. I was and still am dealing with many other health issues and had to make the choice of one over the many others. Fatigue and weight loss were my biggest issues with MAC. EXTREME, DIBILITATING nausea was my issue with the Big 3 Meds. Take care of yourself and stay tuned. There are many good people on this site who share this weird disease. God bless.Jan<br />
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