(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Hello cacallahan, welcome! I’m so glad you have found this forum. I think you will find a great deal of comfort if you make the time to read back through previous posts .. it is just FILLED with good information about our disease .. our journey .. and you will find it is really not as scary ONCE you have a better understanding of just what it is about. Remember .. KNOWLEDGE IS POWER!! I am also a caretaker .. I call myself my husband’s “unpaid medical secretary”! He is Stage 4 cancer .. is doing well on a newly approved chemotherapy .. but also has Diabetes, heart issues etc. Life goes on!

It is IMPORTANT for you to think about the mind/body connection that is VERY strong!! When we go into situations with knowledge .. which you can gain on this forum .. a positive mental attitude .. which you can gain from the supportive people on this forum .. you will be MUCH more able to handle EACH area of your life more easily. Fear is negative energy .. feeling empowered is positive energy .. try to empower yourself. I feel for you .. because I started this journey without a forum of this nature .. I also was scared like you are .. but keep coming back here .. we are all on this shared journey. PLUS keep in mind that because I stuck with it .. I have been off antibiotics and STABLE!! since May 2014!! Yeah!! There IS light at the end of the tunnel!! Go in serenity .. seek it .. find it .. live in it!

Hi. Thanks for asking about my situation. I don't have one single person I can talk too and I am so stressed out. The meds I am supposed to have started taking are as follows:1)AZITHROMYCIN 500 MG 2 TABS 3 X WEEK2) RIFAMPIN 500 MG 2  TABS 3 X WEEK3) ETHAMBUTOL 1200 MG 3 X WEEKSThe last one is for nausea & vomiting called " ondansetron" 8mgI spoke with the doctors & pharmacist and they said I would be very sick by throwing up, diarrhea, dizzy & vision problems. The pharmacist said it wasn't going to be easy at all. I am my parents caregiver & I have an adult handicap son who depends on me for everything. I am so worried I will be so sick I won't be able to take care of anyone, and worried I will be so sick I won't be able to go do everyday things like grocery shopping, doctor appointments. I am seriously thinking of not taking it and just putting my life in Gods hands. I already am so overwhelmed I haven't slept in 3 days. This is too much, and all I do is secretly cry in the bathroom or in the garage. I just am beside myself.Thanks, Cheri  

Thank you Katherine for responding to my post. I was on rifampin and<br />
ethambutol and azithromycin for 1 year, it didn't stop the spread of the<br />
mac besides having bronchitatsis. So then I met with Dr. Aksamit, he is<br />
wonderful, knowledgeable and kind, the best! I was taken off azithromycin<br />
and rifampin, which turned my urine yellow, and put on claritromycin and<br />
rifabutin and ethambutol again. The rifabutin I feel turned my skin<br />
bronze. I was on those meds since last June. I had to go to the<br />
ophthalmologist every 3 months. Now I wonder about my eyes as I too can<br />
not read the green overhead signs or the smaller ones. The eye doctor<br />
would always ask me if my sight has changed, I did mention I couldn't read<br />
the street signs until I was right below them. I wasn't taken off<br />
ethambutol though. Just recently the concern over the bronze skin color,<br />
the doctor took me off all 3 meds plus crestor. I was wondering if anyone<br />
else out there took rifabutin and if their skin as well as urine turned<br />
bronze. I am getting some more tests done to figure the yellowing all out.<br />
I seen that you did the amikacin 2 ml inhaled 3 x a week plus. Did that<br />
have clofazimine in it? I guess there is a possible enrollment into the<br />
liposomal amikacin trial. How was that? Was it awful? Bad taste in your<br />
mouth? Please tell me something about it as I think I might be going to be<br />
doing something like that.<br />
<br />
Since I was due for cataract surgery, that might be why I couldn't see<br />
that well. I have had it done, will see if the signs are any better when<br />
I get my new glasses.<br />
<br />
Do you have to have oxygen? I have difficulty with shortness of breath<br />
after a brief walk, very brief. But my oxygen level is 98, that's good.<br />
I am not on oxygen, thank the lord. My only problem is being tired and<br />
sleeping for 2 1/2 hours most every day. My appetite isn't very good, but<br />
I eat small portions, did you lose weight at all? I did. Am now taking<br />
Ensure, Enlive with lots of good nutrients in it. So thankful you take the<br />
time to answer people. You are a saint!<br />

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

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 />

Hi Tutti,
So glad you found our forum! Because Dr. Aksamit is so busy I would suggest you call ASAP because it will be a bit of time before you can get in .. but waiting for him is absolutely WORTH IT!! We were spending 6 months a year at a winter home and Dr. Aksamit FAITHFULLY sent a follow up copy of our appointment to my winter Pulmonologist .. BUT I never considered any doctor my primary EXCEPT for Dr. Aksamit .. and made every follow up appointment with him. I make my schedule work to accommodate his in getting an appointment!

You can ask Dr. A about vitamins .. but truthfully I have never found a doctor that much believes in them so never asked him .. BUT I personally am a BIG believer in them. This is just me personally .. but I read one time that Americans have the most expensive urine in the world! Ie that whatever vitamins your body does not need .. you excrete them through your urine. That is MY personal philosophy .. SO I am CAREFUL NOT to take more than the recommended fat soluble viamins (The fat-soluble vitamins, A, D, E, and K, are stored in the body for long periods of time and generally pose a greater risk for toxicity when consumed in excess than the water-soluble vitamins.) But I take plenty of the other water soluble vitamins. Personally I take the generic CENTRUM SILVER .. BUT I ALWAYS compare the generic with the actual Centrum Silver. I have found some generic brands sneaky! They are NOT equivalent! I have also added various water-soluble vitamins .. but do not feel comfortable advising .. to each their own. I would add that because I have some blood in my coughing Dr. A advised me to stop fish oil and baby aspirin .. anything that is blood thinning.

DEFINITELY ALWAYS get baseline hearing and vision tests prior to starting MAI/MAC meds. AND ALWAYS request a copy of each of your tests. 1. For your personal records for future use 2. To share with any doctors who might want to see them 3. In case you want to change doctors 4. To take with you when you travel

Tutti, you call this a “terrible disease”. I will share with you something wonderful that was shared with me when I was diagnosed. It was “If we all put our troubles in a great big circle .. more than likely EACH of us would take back our own troubles!”

Now isn’t that just wonderful?! Each time I go to Mayo Clinic in Rochester MN .. see what I see there .. the people with BIG problems .. I repeat that saying to myself .. YES! I absolutely WOULD take back my own troubles! There are SO MANY people in this big world who have SO MANY bigger problems than I have. I have SO many wonderful blessings in this beautiful world we share .. this disease is just a lousy inconvenience I have to get through! There is a thought that each evening we should out loud state 3 “gratitudes” for that day .. maybe just that someone smiled at us that day .. that there was sunshine that day .. OR didn’t rain that day .. or a beautiful sunrise .. or sunset .. or you saw a beautiful flower .. or you spoke with a supportive friend .. OR whatever .. SEARCH for a gratitude! They are there if we just look for them! Being positive helps us get through life in a happier way .. when you wake up in the morning .. it is my opinion .. I can CHOOSE TO BE HAPPY! So I DO!! You can also!

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 />

Hello e345l, will it be inhaled Amikacin if you go on it? If so .. let me know and I'll let you know a couple of time saving things I did when I was on it! I know it took 30 months .. BUT the Amikacin finally licked that darn "abscesses" mycobacterium so in the end all the trouble was worth it! Good luck as we go forward on our shared journey!

HEY! I Mentioned in an earlier post that any doctor I have talked to didn't seem to have a positive attitude toward additional vitamin intake .. EAT HEALTHY was what I usually got. BUT as I mentioned .. I still did my due diligence and took them anyway .. BECAUSE I just don't think science has caught up with the complexity of the human body yet .. or certainly won't in my lifetime! SO .. lo and behold .. just read this article .. interesting!!
http://www.newsweek.com/vitamin-stops-aging-process-organs-study-453526
This is just one little nugget of info!

Don't know if anyone is interested .. but I found it fascinating! My son sent me this link to a course he is attending next week. Amazing to me .. a woman who grew up in Montana without running water .. NOW my son is attending this kind of thing .. WOW! The changes in the world are just astounding!! Watch the video .. it will blow your mind .. wish I was 25 years younger and attending!
http://singularityu.org/executive-program/
Best to all! Katherine

Hi Katherine,<br />
I believe it is the inhaled one. In my notes from Dr A. he mentioned<br />
pending clinical response from what they are doing May 15th, there's a<br />
possible enrollment into the liposomal amikacin versus off label amikacin<br />
with or without clofazimine which has rifampin which I was on a full year<br />
and did no good and switched to rifabutin for 10 months which was stronger<br />
and no results yet. Please tell me everything you can about this<br />
amikacin. I believe I was told it was inhaled. I really appreciate the<br />
links you sent me, I haven't read it yet but plan on doing that today. I<br />
don't know how to find this type of information and you can find it! It<br />
seems I am absent minded a lot anymore!<br />
<br />
Have you heard of the Leprosy drug or shot? They considered that but that<br />
too turns your skin very dark! And it isn't approved by the FDA. They<br />
said it was safe. I just don't like the name of it, fear of looking like<br />
a leper! They assured me that wouldn't happen!<br />
<br />
You mentioned the hearing problem and this morning my ears are so plugged<br />
up! For 3 hours! They have never been plugged up before, don't know why.<br />
I have been off ethambutol and the other meds for 4 weeks now so I<br />
shouldn't experience any ear trouble. Yours was mostly loss of hearing?<br />
Today I am getting a sonogram on my carotid artery that was operated on<br />
about 7 years ago. Hope that isn't plugged again. I won't do that<br />
operation again!<br />
<br />
My skin is turning back to normal and I won't have t hat nice suntan look!<br />
Darn. I figured it is the rifabutin but they want to check to see if any<br />
other damage has been done.<br />
<br />
Thanks again for sharing<br />