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Has anyone ever been cured of MAC? Or even for at least 20 plus years?
Interested in more discussions like this? Go to the MAC & Bronchiectasis group.
@lmh7 Hi. It is called 'conversion' when a mac patient gets 'cured'. I hope someone who has had mac and it was gone for many years; will jump in and share it with us. I have been free of MAC for five yrs. I did, however, contract a pseudomonas infection in 2016 and that was quickly irradicated. I am staying infection free by taking low doses of monthly antibiotics. Because most of us have bronchiectasis as well; we tend to be prone to catching these bugs. Have you read about how to avoid re-infection?
@lmh7 How To Prevent Re-Infection
Causes in the home can be curtailed to some extent. Turn your hot water heater temperature up to 130 degrees (use caution with children in the house as this is a scalding temperature).Take a bath instead of a shower. The splashes and steam from the shower get inhaled. Remember your hot water tank and the shower head are the biggest offenders for harboring mac and/or other dangerous mycobacteriums. Your shower head should be soaked in vinegar every 6 months or less. It can be removed (ideally) and soaked, or a baggie with vinegar in it wire-tied over the shower head while still in place. It should be left soaking for at least thirty minutes.
Change water filters every two months or boil your drinking water. Do not use ice cubes that your freezer makes or drink the water from the door. That water sits in a bladder inside your refrigerator next to warming elements and breeds mac.
Avoid swimming pools, steam rooms, and hot tubs, and facials using steam. (I know, I just sucked all of the joy out of your life – I‘m sorry.) Avoid unnecessary visits to people in the hospital or nursing homes. These two places tend to harbor some of the very bad infectious bacterias like: m. abscessus, serratia marcescens, and most notoriously klebsiella pneumonia. These last three are particularly bad because they are hard to treat and are famous for being antibiotic resistant. There are new drugs on the horizon that seem to be promising for combating these, but have not been released by the FDA yet. I hate to tell you this, but Florida is one of the hotbeds for mac infections, so you need to be more aware of your lifestyle. Do you have any questions about this?
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Hi, I was diagnosed with MAC about 10 years ago and the doctor just started me on the 3 drug cocktail of azithromycin, rifampin and ethambutol every day. I have only been on the drugs about 19 days but the side effects have all but incapacitated me. Does anyone know if the body adjusts to the drugs and how long it takes before the drugs work? My doctors never mentioned any side effects, only said the course of taking the medicine was 9 months to a year. Thank you!
Ina, I consider antibiotics “cruel and unusual punishment” to force upon oneself; occasionally justifiable but to be avoided if possible. If nebulizing 7% saline won’t do the trick and one must use the microbe assassins I would take measures to offset damage to ones’ Microbiota. A probiotic pill might help. I rely mainly on fermented foods, chiefly kimchi and sauerkraut, some from the refrigerator case at the grocery, but predominantly my own creation.
I enjoy a quiet satisfaction when I realize I have have a “hands on” role in creating my own health supportive foods. Don
Thank you Don, I am 20 days on the meds now and down almost 6 pounds! I am so nauseous it is hard to eat. I am not a complainer so this is such a new experience. I don't understand what the nebulizing 7% saline is but am trying to find it on the internet. Any information or thoughts on what i should get to try that would be appreciated. i have a call into my doctor now as a neighbor said there are anti-nausea meds? I need something if I'm going to do this for the next year! So thankful I found this site for a better understanding of what is going on! Ina
Oh Ina, that is so miserable. There have been many suggestions over time on dealing with the nausea, ginger capsules, candies or tea helped me. And lots of water.. Also, I ate something every hour, a small piece of fruit, an ounce of cheese, a few crackers,
half of a proteindrink. . Also, taking the meds at bedtime allowed me to sleep through the worst of the nausea.
One bit of curiosity, typically treatment starts with antibiotics 3x per week. Did the doctor explain why they were prescribed daily?
I wish you luck finding a strategy that works for you.
Ina, you said, " I don't understand what the nebulizing 7% saline is but am trying to find it on the internet." I'm not the Internet but here's an Okie's take on why it tends to be favored among MAC sufferers. People who know about such things tell us that although lower concentrations of saline are helpful to the extent that they thin mucous which presumably facilitates coughing it up, However, when the concentration reaches 7% it not only thins, but also becomes lethal to mycobacterium avium complex (MAC) infections. Which is most likely the reason a few years ago after switching to 7% from a lower concentration of saline, my Pulmo (for the first time) following a chest X-ray, told me that the radiologist reported that the MAC infection had diminished in size compared to an earlier X-ray.
Thank you so much Sue for the suggestions. I had been drinking gingerale but still having trouble eating anything. I was able to speak with my doctor yesterday and he ordered some nausea medicine and also told to stop the everyday meds and try 3x a week. He said he was trying an aggressive approach with the everyday treatment. We are to check in with each other in a week to see how I do with the 3x regimen. May I ask how long you have been taking the drugs? Has your body gotten more used to them? Ina
Wow! That is encouraging! May I ask how often you do the nebulizer? I discovered I do have one that I was prescribed when I had a bout with pneumonia a while back but my doctor has never suggested it be used to help treat MAC. Anything that will attack the little bug I'm all in for!
At 3x/week my body was able to adjust. When it was stepped up to daily, after 6 months I called "uncle" and the infectious disease doc changed me to 7% saline and no drugs.
How did I adjust? Took meds at night, about an hour before bed, with a light snack. Slept through the worst nausea. Many years ago I had a wicked bout of food poisoning complicated by 24 hour "morning sickness". A coworker told me to drink flat caffeine & sugar Coke and eat whole apples, with skin on – it worked. At first with the MAC meds, I managed maybe 1/8th apple and 2 oz Coke at a time. Then after a few minutes I would try a few bites of something else. Apples are what I give my husband and grandkids when their stomachs are upset. Then I started eating one or two bites at a time at first, then a snack every hour. Also, I would make a pitcher of smoothies – using every fruit on hand, plus carrots, yogurt & protein powder. Keep in refrig and sip 4 ounces at a time.
And probiotics every day – I usually used Jarrow, or whatever my co-op had in the cooler.
Hang in there! You can get through it.
Twice daily, Ina.
Very informative National Jewish Health presentation by Dr Huitt about managing medication side effects.
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