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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit .. all you really have to do is just work with him. Keep notes about your concerns prior to your appointment .. listen to what he says .. make notes as he answers you .. then do EXACTLY what he tells you to do. That is what I did. I have absolute TOTAL confidence in him .. he is the Guru of our disease. Frankly .. if he can’t help you/me I don’t know who can. That said ..
You will ALWAYS have the Bronchiectasis .. if you do some googling you will find it is .. putting it in a simple manner .. a scarring of the bronchial tubes. It is a chronic condition that is VERY important to keep our airways healthy and as clear as possible through exercise etc because it is a breeding place for future mycobacterium to return. Because I was so concerned about the MAI/MAC I didn’t pay much attention to the Bronchiectasis until I became stable with the MAI/MAC .. now I know the importance of keeping the bronchial tubes as healthy and clear as possible.
In terms of the inhaled Amikacin .. as I recall that was for my 2nd serious mycobacteria which was an “abscesses” type . . so most people would never have to take that .. plus it was a pain in the patooty! Unless you have that CERTAIN type of mycobacterium I would not understand why you would take it!! FIRST talk to Dr. Aksamit!!
I googled: does Amikacin have clofazimine in it .. got: Clofazimine has been used as a replacement for rifampin, with similar .... we did encounter M. abscessus isolates .. http://aac.asm.org/content/56/12/6324.full
Frankly I wouldn’t give a darn about the bronze skin color or urine color if it was going to help with the MAI/MAC .. I’d have the attitude .. GET MY PRIORITIES IN ORDER!! Health is first!
I WOULD contact Dr. Aksamit’s re: any vision loss immediately. My opinion.
It was a normal part of my routine to get monthly blood tests .. quarterly vision and hearing tests sent to Dr. Aksamit.
I was told by someone I trust that Crestor was bad news .. I take Lipitor 20mg every other day in a.m. for my particular situation .. that is just my particular body. I have made the PERSONAL choice that as long as my cholesterol is at or below 200 I am not going to take any more than I am .. there are side effects to all drugs and I am already taking the max I want to!
Cataract surgery was a piece of cake for me! I had a contact lens prior to that “MONO VISION” .. one eye read and the other eye saw distance. Not everyone can adjust to that .. but I loved that as I reached middle age and only needed reading glasses. So when I had the cataract surgery .. they put a reading lens in one eye .. a distance lens in the other .. AND at age 73 I do not need glasses .. LOVE IT!!
I do not need oxygen. My oxygen level in in the high 90’s .. I try to work out on my Nordic Track as frequently as I can (NOT as often as I should!) and try keep my lungs as healthy as possible.
Yes fatigue is a part of our journey .. we MUST take care of our bodies .. so our bodies can take care of us! Our immune systems are compromised .. has to work just that much harder to take care of us. Be kind to it. Personally I try to sleep till I wake up. Usually that is about 10 hours per day. I wish it was less .. but it is what it is!
I lost 18% of my body weight at the height of my MAI/MAC .. I kept it from getting worse .. now I DO NOT tell anyone else to do this .. but I ate ice cream every night (LOVE IT!) and ate bacon for breakfast. I happen NOT to have a body that creates cholesterol and it did not create havoc on my body. AND when I became stable .. I quit that habit .. cannot even have ice cream in the house now or I’d eat it .. love the stuff! Ensure is a MUCH better idea .. I was just looking for a good excuse for ice cream at the time!!
Ok, it’s late at night .. I’m tired .. I think I answered all your questions .. hope it helps! Keep in mind .. we have all gone through this journey .. it really is not all that bad .. there truly is a light at the end of the tunnel .. you’ll get there! Just keep putting one foot in front of the other! As I keep telling my husband .. “KEEP SEEING RAINBOWS!”
Sending you Hugs, Katherine
Replies to "Hello e345l, my FIRST thought .. is that since you are working with Dr. Aksamit ....."
Hi Katherine,<br />
<br />
Glad to hear from you! I did want to mention, Dr Aksamit said I would be a<br />
good candidate for that amikacin test trial. That's why I am asking about<br />
it. He ordered some test in May that will tell him about the color of my<br />
skin, my weight loss, poor appetite, tiredness, which all the doctors are<br />
concerned about as I deteriorated a lot. If there could be an underlying<br />
problem! I am referring to my gp doctor, my dermatologist, and the lung<br />
doctor down here who are keeping tabs on all this. The ritual of pills I<br />
took didn't stop the bacteria. I forgot about the hearing too, I do have a<br />
hearing aid but forgot if I was supposed to be tested every so often like<br />
the eyes. But temporary I am off ethambutol. My sister use to tell me get<br />
off Crestor but I wanted doctors orders to stop taking it and doctor<br />
Aksamit took me off. That's a question for Dr Aksamit. However I won't<br />
see him in May until he has time to study the test I am taking.<br />
<br />
Hugs to you too, I am 76, healthy all my life until 6 yrs ago! I am<br />
grateful for that as for many other things. More later, really enjoy<br />
visiting with you!<br />
Hi Tutti. I also live in Ohio, Cleveland. I plan to see an infectious disease doctor at University Hospitals soon. I have found very few doctors who know much or anything about MAC. We can' all to to Dr.Aksamit, unfortunately. Finding a knowledgeable doctor is so important so if anyone knows of one in the Cleveland area I would love that information
Hello flib, I just wanted to mention .. due to my husband's illnesses I found that in doing my "due diligence" what I did in trying to find him the best doctors was: 1. go to whatever hospital/clinic we were going to 2. google the name of each doctor .. in this case the Infectious Disease doctors 3. on the google page .. follow each and every link 4. put together data on each one of the doctors
Through doing this I was looking for: 1. what schools did they go to. My theory was .. the tougher the schools they got into probably the brighter they were. 2. What area do they SPECALIZE in .. in my husband's case he has CLL .. I don't want someone who specializes in Colon Cancer! We don't want someone who specializes in Asthma! 3. What papers have they written .. any on MAI/MAC? 4. ANYTHING in their bios that might lead me to think they may stand out in the crowd.
Then for SURE ask when you call for an appointment: How many MAI/MAC patients has this doctor worked with in the past 12 months? You want to make sure they are UP on the latest data on our disease.
Flib, good luck on your journey .. we are all in it together .. the above is ONLY how I went about it .. hope it helps you just a little bit! Katherine
Hi Flib, I just checked the NTM website- http://www.ntminfo.org and there are a number of doctors that are listed as experts in Cleveland. Check it out - https://www.ntminfo.org/patients/physician-referral-list Hope that helps. Janet
Katherine, I'm guilty of using ice cream to keep the pounds on too!! Hey, it works and for some reason that seems more palatable when I'm just not interested in eating. So McD's vanilla shakes (pretend they are some kind of protein shake :)), DQ's Oreo Blizzards and Haagen Daz at home. I too am not telling anyone to do this. Just fessing up. 🙂 Janet
keep it coming@justjanet its making me hungry which is a good thing! Ice cream definitly works, my hubby was addicted to it , a large plate a night,and when he stopped he lost 6 kilos!
Love ya Janet! We are indeed partners in crime! Katherine
I see Dr. Christine Hirsch, she is an infectious disease dr @ University Hospital in Cleveland. I like her very much, she knowledgeable and very caring. She working with Dr. Jeremy Clain, he's a pulmonary dr I saw at the Mayo Clinic. Together they are working on the best plan of action. Right they are still checking me every 3 mos. I feel very lucky to have them for my care. Good Luck! Let me know how your appt goes. Tutti
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Hi Katherine...I am so grateful for your posts. You have helped me so much!<br />
I too was diagnosed with bronchiectasis and mycobacterium abscessus in Dec<br />
2015. I have not started on the meds yet. I've been terrified about<br />
starting the meds. You have inspired me that I can do it...it will work<br />
out. I have a couple questions...did your Dr recommend any particular<br />
vitamins we should be taking? I've had a base line hearing test but no eye<br />
test. I'm adding it to my list of questions. I don't want my vision<br />
affected.<br />
Your advise has been so helpful and helped me understand this terrible<br />
disease.I live in another state but I'm going to try to get an appt with<br />
your Dr and hope to coordinate my treatment here in Ohio. Hope you don't<br />
mind but I will probably have more questions for you. Thanks again for<br />
giving me the inspiration to fight this disease. You've been awesome!!!!<br />
Your grateful friend Tutti<br />