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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Hi everyone,I really appreciate all of the info.here. I was just Dx with MAC a week ago. I started meds daily and I assume they are the big three? (Clarithromycin, Rifabutin and Moxifloxacin) I am scared and it's good I found this site. I have COPD/Emphysema (Alpha 1 neg). I was hospitalized for 6 days for pneumonia in April and have thought I was getting better. They did a bronchoscopy and it took a long time for the culture to come back. I saw my Dr. for a follow up and we made an appointment with an ID two days later. Started the meds right away. (I tend to trust Dr.s and she is in contact with my Pulm. Dr. I trust him as he has been treating me for years). I'm not one who can get the sputum out for the most part. When I do it is clear with a spot of yellow ( the same as others have reported). The next day after starting the meds. I vomited and there was blood, the next day again the same thing just not as much.I called the Dr. and she saw me the next day. She changed the way I take them and added Zofran and she said to try that and call her b/c she may need to adjust the dosage. It helped, but, my appetite is terrible and I have already lost weight over the past year. I am an alarming 86 pounds (now mind you I have always been thin, weighing right around 100 lbs). Today I have pain in my lower back and a fever. (worried about my kidneys though I have never had issues with them or any other health issues). I am 52 years old. I am worried in general I went from taking no pills to feel like that is all I do now is take meds. In general I feel worse since I started the meds. Once I get further along with Tx. I will be more positive I'm sure or at least back to living my life at least I hope. Right now they want me to rest. I don't know what that means as I am one who is always on the go, was working 2 jobs prior to this. Now out of work already 3 months and they are saying 3 more. Luckily my job is cooperating for now, been there 12 years yet, I wonder if I will ever get back to it. (I am a Group Home manager of two residences for severe mentally ill adults).
I apologize for this long post, but from reading all the post you might not mind since it's my first time here. Thank you !!! - Patty
Replies to "Hi everyone,I really appreciate all of the info.here. I was just Dx with MAC a week..."
@freedom25 Welcome
to our forum Patty! I think that most of us on this thread has experienced
weight loss from MAC. I dropped from 142 down to 116. I was losing a pound a
week! That is when I knew something was wrong. I had MAC twice, not much
weight loss with that, but had pseudomonas a. the last infection. That is the
one that caused me to drop lbs. After 9 mos of treatment, I am now up to 128
lbs. I am too tired at the moment to go into my treatment journey and I
don't want to confuse you with questioning yours. I suggest that you keep
reading backwards through all of our posts and I assure you that you will learn
a lot. In a nutshell, you have to be extremely knowlegible about this disease,
because many of the ' BEST ' doctors are not. Some seem to be, but still are
not. It is not because they are ignorant, it is because it is complicated
disease. There are lots of variables with each patient. My doctor at the Mayo
does not believe in running straight to the big three drugs upon the newly
diagnosed. He does not believe it to be a one size fits all treatment. So many
doctors think that way. ( I ) believe it is because they are not that
experienced in treating MAC. My doctor was a little horrified that so many first
time first time infections are being immediately treated with three very strong
antibiotics. I have never been on the big three, I am not seeing any difference
in the return rate of the MAC between myself and others taking that big load of
antibiotics. Just food for thought, and all the more reason to do your
homework. - Terri M.
@freedom25 Patty, I am REALLY glad you found us! Welcome! It sounds like you have been blessed to have found doctors you feel comfortable with .. AND work well with you! Changing the regimen to meet your needs .. GREAT! Most of us lost weight .. I lost 18% of my body weight .. part of the game. For me a GOOD thing was to start drinking a product called the "Bolthouse Farms Protein Plus Chocolate" .. it had 30grams of protein .. in the refrigerated section of the grocery store .. at $3.69 not cheap but with the most protein and least sugar I felt it was worth it for my health. (Best price I found 6/19 at Walmart $1.94) .. because my appetite just wasn't there .. I drank that!
Patty, you may be new to MAC .. but trust me .. we have ALL been on this journey .. all of us at a different point .. but all on this shared journey .. we are here to help you .. support you in any way we can. We have "been there .. done that". Know how scary it is in the beginning .. BUT have come through that time .. KNOW there is a light at the end of the tunnel. Know what that light is? Knowledge! Knowledge is POWER! Knowledge is learning to advocate for yourself. Knowledge is TAKING BACK your power over your health care! How do you do that? By reading through the past pages of our Forum! Many pages? Phooey .. you will read a book for pleasure .. you won't read the past pages of this Connect Forum to educate yourself to our shared MAC disease?! Yes, of course you will! Then as you read .. feel free to come back with ALL your questions .. we are here for you EVERY step of the way. We know where you are right now .. how you feel .. how tough it is .. BUT we also know where you are going .. AND how you are going to get there!! BECAUSE we HAVE DONE IT!! We will walk this walk with you .. just keep coming back with your questions ,... concerns .. cares. We will be here. Sending you a hug in this tough time! Katherine
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It is scary! It is alarming (the weight loss)! It is the same for me. But here you will find support, understanding, and a wealth of information.