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Old 05-25-2012, 09:45 AM   #1
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Mac/mai

I used to come here to find help and comiseration with Mycobacterium lung disease. Haven't seen any posts for a long time. Is there anyone here who has any input?

 
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Old 06-12-2012, 02:41 PM   #2
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Re: Mac/mai

I took Biaxin and Ethambutol for 18 mos. several yrs. ago. It got rid of most of the bacteria except the pseudomonas which I still have. Asked lung dr. yesterday if I still have MAC and he said he wasn't sure without growing out some more cultures. Just finished taking this week some Levaquin and prednisone to clear up some of the excess mucous in my lungs. Go back to him in a month to see how my lungs sound. I have bronchiectasis also which complicates things . Trying to figure out now what is getting to the enamel on my teeth. Don't know if it's the mucous coming from my lungs into my mouth at night or silent acid reflux. I have an adjustable bed and try to sleep with my head elevated at night to keep the acid reflux from coming up from my stomach. Will try the gastro dr. who I haven't seen in 2 or 3 years to see what he has to say. Hope you are doing okay.

 
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Old 06-12-2012, 07:31 PM   #3
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Re: Mac/mai

I also used to watch this site for news on MAC/MAI. Makes me wonder if everyone has been cured. That would be great!! As for me, I continue without insurance thus unable to see my doctors. Haven't been on any medications for several months due to side effects. Had a periord where everything was going well - but lately have had increased shortness of breath, chest congestion and especially at night it is hard to breath so I sleep on 3 pillows. A couple of nights ago I was awakened by the feeling of suffocation. It really frightened me. Continue to struggle with maintaining weight at at least 100#. How are you doing?

 
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Old 06-13-2012, 10:25 AM   #4
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Re: Mac/mai

It is a terrific thought that there are no more MACer's around isnt't it? Unfortunately we are still struggling;fortunately we are not alone! I had another CTScan last month that showed more little buggers in the lungs. Also my breathing test was way down from 6 months previous. Now the wait 6 months and see mode. I noticed my breathing is getting worse. I love gardening but now have to take lots of breaks. I don't know if it's the MAC or the COPD. I have been off the Spriva inhaler for a few months because of the expense. Just waiting for October and Medicare. Does anyone know if this MAC ever goes away? Is it just under control or gone?

 
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Old 08-27-2012, 06:53 AM   #5
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Re: Mac/mai

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Originally Posted by sugzey$ View Post
I took Biaxin and Ethambutol for 18 mos. several yrs. ago. It got rid of most of the bacteria except the pseudomonas which I still have. Asked lung dr. yesterday if I still have MAC and he said he wasn't sure without growing out some more cultures. Just finished taking this week some Levaquin and prednisone to clear up some of the excess mucous in my lungs. Go back to him in a month to see how my lungs sound. I have bronchiectasis also which complicates things . Trying to figure out now what is getting to the enamel on my teeth. Don't know if it's the mucous coming from my lungs into my mouth at night or silent acid reflux. I have an adjustable bed and try to sleep with my head elevated at night to keep the acid reflux from coming up from my stomach. Will try the gastro dr. who I haven't seen in 2 or 3 years to see what he has to say. Hope you are doing okay.
Took the 24 hour test for silent acid reflux and don't have that. Will ask my lung doctor if the bacteria in the mucous that comes up out of my lungs at night be causing the erosion of my enamel on my teeth. Anyone else with MAC and bronchiectasis have this problem?

 
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Old 08-27-2012, 06:55 AM   #6
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Re: Mac/mai

According to the NTM website, more and more people are getting it everyday and the last I read they think it is coming from taking a shower and getting in hot tubs.

 
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Old 09-18-2012, 09:36 AM   #7
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Re: Mac/mai

It does seem more and more people are contracting MAC. Originally it was thought to be women who had it most. Thin,caucasian,past a certain age, with lung problems. Now it seems everyone is at risk. My pulmonary doc told me his father in law has it, a male friend of mine just found out he has it too. Sad to say but maybe more illness means research will increase. No one seems to understand this thing either. I had a new eye doc who treated me like I had the plague. Wouldn't get close enough to give me a proper eye examine. Notice I said HAD!! I go back to pulmonary in a few weeks for my 6 month. Don't know what he will find. I had a kidney stone last month and the CTScan showed part of the lung. There are some new nasty nodes. Keep posting.

 
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Old 09-18-2012, 01:10 PM   #8
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Re: Mac/mai

Your eye doctor needs to learn more about this disease. I will be going back to my lung doctor in Oct. and I think he is going to want me to take some sputum samples to the hospital to see what kind of bacteria I have in mine now. Don't know if I have anything other than pseudomonas or not. Hang in there.

 
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Old 09-26-2012, 04:52 PM   #9
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Re: Mac/mai

I was diagnosed with MAC and bronchiectasis four years ago. I decided not to do the antibiotics treatment since so many have suffered through it and the disease frequently recurs within two years. I am now taking serrapeptase three times a day 120spu. My coughing is 75% better, my fatigue which was quite bad has lessen and some days I actually feel like my old self. Also, I'm sleeping welll. Serrapeptase has been used in Japan and Germany for 30 years with no side effects. It is an enzyme that devours dead tissue allowing new, healthy tissue to form. As an extra benefit, serrapeptase reduces joint pain greatly. I'm not a dope, not easily influenced by fads and hold several higher degrees. Do yourself a favor and research this amazing enzyme. Amazon carries it and it cost about $30 a month. I feel it has saved my life....and the quality of my life.

 
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Old 09-27-2012, 09:49 PM   #10
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Re: Mac/mai

I was diagnosed with MAC/MAI and bronchietasis last year. At first it was believed I had infectious TB, but this was later ruled out after I nearly died from the antibiotics (4 different ones taken daily). After only 6 days on these meds I went into liver failure. The meds were stopped, of course, and after a long stay in the hospital, my ID doctor put me on different antibiotics, these taken three times a week instead of daily. He kept a close watch on my liver enzymes and when they again started to climb way out of normal range, these meds were also stopped. At that time he said I was a "treatment failure" and just referred me back to my pulmonary doctor to monitor. So no meds in a year and I continue to fight this disease and all it's lovely symptoms - some days are better than others. I will research the serrapeptase and I hope you continue to do well. Thanks for the info.

 
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Old 10-05-2012, 08:53 AM   #11
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Re: Mac/mai

The serrapeptase sounds intresting. I go for my 6 month pulmonary doc checkup in a couple of weeks and will ask about it. I know I have new nodes because the X-rays for other things showed them. I hope I don't need any drugs this go round. I took them for 22 months last time. Luckily I had very few side affects. Great knowing there is an alternative. That's why I like coming here. Sharing makes things seem not as hopeless.

 
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Old 10-08-2012, 01:17 PM   #12
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Re: Mac/mai

Consie - I hope all goes well at your appt. and that you do not have to go back on any medications. I have not been able to see any doctors for the past year due to no insurance. In January I hope to have insurance started and hopefully my previous pulmonary and ID doctors accept the insurance. That's one reason I was interested in the serrapeptase enzyme. Please let us know if you find out anything about it. Take care.

 
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