Mycobacterium avium-intracellulare -- Have you had treatment, what are the side effects, honestly?
Question posted by katemn on 12 May 2011
Last updated on 30 April 2024 (9 weeks ago) by Cooperlynn
Mycobacterium avium-intracellulare -- TreatmentSide Effects - Need Honest Imput! I was diagnosed with ... avium-intracellulare (by culture) 08/07 and Bronchiectasis. In time I was blessed the find Doctor Timothy Aksamit at Mayo Clinic in Rochester MN who specializes in MAI/MAC. My understanding is that it is hard to know which one came first .. the MAI or the Bronchiectasis. My lung status has been up and down since diagnosis. I have made sure to get a lot of sleep .. try to eat fairly well .. take lots of vitamins .. have used Homeopathic remedies .. use the inhaler Qvar 80mcg twice a day for the Bronchiectasis .. and until 5/09/11 I was able to avoid the “toxic” treatment of 3 antibiotics for the MAI.
I have now been told that at my next 3 month check up if not improved we MUST discuss “the treatment”. I am a very analytical person so when pinned down he finally estimated that since 03/10 I have gone from approx a 2-3 to now a 5-6 according to the xray/additional lung infiltrates/breathing tests.
I have a TERRIFIC fear of the awful side affects of the 3 antibiotics. I have read just horrible things about them on other websites. To the point that I have considered just not doing it. I am nearly 68 years old .. have had just a wonderful life .. have no fear of dying .. would rather have quality than quantity of life.
My question is .. if you have done or are doing “the treatment” .. what has been your experience? What was your symptoms .. how severe .. for how long? Migraines is a horror of mine .. I take 4 preventives per day .. and headaches is listed! I would really appreciate your honesty .. what is .. is! But I need to honestly know what I am dealing with .. and I think Doctors downplay it. That it isn’t like going through chemo .. even though two doctors have said it was “toxic”! (Truth is I'm pretty scared .. AND I'm a pretty brave person!)
I’m 66 and just start antibiotics for MAI complex. In week 1 first one week 2 second one and than week 3 third antibiotic. It’s wait and see
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KI
Kinder2018
7 Jan 2019
I have been on the big 3(Rifampin, Ethambutol and Azithromycin) for 3 months. At first I was extremely fatigued and had lost my appetite. This lasted for over 2 months. Miserable is an understatement. I am fine now but I am also taking probiotics, like over 10 billion/12 strains. I make a tea out of turmeric root, ginger root, coconut oil, black pepper, lemon and cinnamon. I also take CBD oil and a liquid multivitamin. I'm doing everything I can to feel well. I am planning on getting a baseline vision screening as I was told the Ethambutol can affect your vision. Hope this helps. Take care of yourself.
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NevadaleeC
22 Sep 2017
Hello, my name is Nevada and I live in Iowa. I too have been told I have MAC and mycrobacterium assesses ( non curable) I went threw 135 bags of antibiotics chemo. And still have 6 months of oral antibiotics. If you are still on this group , I sure could use some one to talk to. Thank you.
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HA
HaleanaE
10 July 2018
I have mac lung disease and I’m trying to find the best way to get better without taking a lot of pills
TE
teatahira
24 July 2011
I've also been advised to ask about Cellcept as a form of treatment for MAI. A patient in Rockhampton, Brisbane Australia is now on this as a form of treatment and is experiencing good recovery and improved health and wellbeing. Its worth looking into and asking questions about.
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teatahira
24 July 2011
Honestly... the side-effects ARE toxic. My husband has just turned 51, is 6ft 1, was 120kgs is now 60, was extremely active, strong, independant, hardworking and outgoing. He had a quad triple by-pass at 40 (herediarcy disease as we found out) had been smoking since 23 on and off, stopped for a while after the heart operation then started up again as a social smoker - generally didn't take the best care of himself but wasn't overly abusive either. Throughout the whole time he suffered a skin disorder which was put down to working in Freezing work conditions, working with farm animals, reactions to heat, metal, food you name it. There were stages where his face, arms and legs were bleeding from the scratching and left rubbery when not bleeding. All specialist and natural treatments didn't work. Until he got diagnosed with a rare disease called Whipple's. The treatment for this sorted his skin and after a year cleared the Whipples.
Then the skin condition raised its head again - further tests, 3 specialists teams later plus they have now decided that they think he's got MAI and is on the 3 antibotics regime - that the ongoing skin condition was a possible pre-emptier of MAI, but because all 3 teams were working in isolation they were missing cause and effects. Since starting the 3 antibotics in April 2011 he has gone from 80 to 60kgs - has a total loss of apetite but tries his best to eat, suffers daily from all those things mentioned in your post and in responses' posts where he is quite crippled by it all - the lower abdomen pain is excruciating. He is at the stage where he would rather quality of life than quantity and has taken himself off the medication (last 3 days). He has a check up this week and will be challenging doctors on some of the information that we've learned through these posts - eg getting a drug resistance test done and their attitude of "we hope and we think this should work" to something more definate. One of the things we didn't realise was that before starting the treatment we really needed to put our affairs in order - he hasn't been able to do even half of what he was doing pre the treatment, emotionally this stresses him out big time. He has gone from being able to be left alone for a day to needing someone around all the time - as a family we rotate ourselves to provide support and love for and to him and to each other. Will keep you posted on progress or events. I also appreciate that everyone is an individual and our experience may be unique us and your experience will be to you. Forgot to add - when he was first diagnosed with MAI they were surprised at the lack of damage to his lungs. Since being diagnosed the damage has increased where he needs assistance to breath??? Lord Help Us
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HA
harue
24 June 2011
I just responded to a question re: whether there is a cure so you might take a look at that. I was 51 when I was diagnosed with MAI and I was on the Ethambutol, Rifampin and Zithromax for six months (sorry but can't remember the dosages). I didn't have any symptoms and was in good health, so perhaps that's why I didn't have any side-effects (other than one medication causing my urine to turn an alarming color). Let me add that I am 5' 3" and probably weighed about 105# at the time that I went through treatment and I more often than not, have negative side-effects from any medication I try.
It may have had a lot to do with my pulmonologist. From the moment I met him, I knew I was in good hands and I never doubted his recommendations. I hope you can find a physician you trust because that does not sound like the case right now.
I hope this helps -- my mom died from lung disease and it was a slow and debilitating 25 years. Wishing you the best.
Votes: +0
SU
Susan48
6 June 2011
Hi Katemn,
I too have MAI and bronchiectasis for 20 years - but it took me 14 years to have it properly diagnosed and I live in Chicago. I went to the National Jewish Medical Center in Denver. By the time I was diagnosed the MAI was in all 5 lobes. Since 2005, I've been under the care of an infectious disease specialist who came from National Jewish.
First of all, you should insist that they do drug resistant testing on the strain you have. I know they can do this testing at National Jewish if they don't do it at Mayo Clinic. All they would have to do is to send them a sputum sample of yours. There are 12 drugs that have been successful in the treatment of MAI but it may turn out that your strain is resistant to some of them. (Mine is actually resistant to 10 of the 12.) This is valuable information for you because you don't need to be treated by a drug that isn't going to work.
I know there's a standard protocol of 3 drugs and the dosages are standard as well, but the reality is that the side effects make it difficult for many to tolerate them. To start, I was on 500 mg azithromyacin, 1200 mg ethambutol and rifabutin. I got rid of the rifabutin by the end of the second week (with my doctor's knowledge) because it was the culprit in severe stomach and intestinal issues - plus, by then I had read the drug-resistant testing report and found out that my strain was resistant to rifabutin. I then started playing with the dosages because I'm very petite and my very pragmatic doctor agreed that a lower dosage would be better than none. It took 5 months to get the dosages correct so that I was able to lead a fairly normal life. The ethambutol and azithromyacin gave me nausea, dizziness, ringing in my ears, annoying headaches and intestinal problems - which eventually became tolerable when I started taking lower doses and took the ethambutol in 2 doses 2 hours apart in the evening. I made sure I took all drugs with food.
I ended up taking 250 mg of azithromyacin and 800 mg of ethambutol every other day for a total of 18 months. There was significant improvement of my MAI for 12 months. On my "off" days I would take a probiotic - which I would strongly recommend which will help you with the intestinal issues. I was going to graduate school during this treatment and I was able to maintain a fairly rigorous schedule.
Don't be afraid to be insistent with your doctor about getting the drug resistant testing done and the dosages that you'll take - they're going by the book - but we're all different. I wish you luck with your treatment and will keep you in my prayers.
