1. < MAC & Bronchiectasis

Extreme fatigue with MAC

Posted by src3acs @src3acs, Feb 26, 2018

Good Morning, I am new here so this may have been discussed before. I was diagnosed with MAC in 2012 after I was diagnosed with breast cancer. I had a biopsy and lung wedge resection...both confirmed the MAC. In 2015 I had a bronchoscope done which again confirmed the MAC and bronchiectasis. I have seen a Pulmonologist, infectious disease and my primary care doctor. Everyone seems up in the air whether to treat or not. They seem to be leaving the decision up to me. I don't have a cough, I do have some shortness of breath occasionally but I am always tired. No matter how much I rest or sleep.....I am tired and sometimes exhausted after minor activity. Is fatigue a main symptom of the disease. Would treatment help my fatigue or make is worse. Thank you!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 7, 2018

@pfist Good morning. I am glad your mac receded on it's own. You are lucky with that. Mine just made me sick and cough non-stop for years. I had to go on some antibiotics at least. I am thrilled that you are doing the saline. We ALL need to be doing that.

REPLY
Jo Ann K | @jkiemen | Jun 7, 2018
In reply to @cld120 "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..." + (show)
@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

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It is odd how some MD's tell you to hold off until you really need to on the BIG 3 and other's tell you to go on it. I am still waiting and waiting for the Nitric Oxide study results of a small study and the FDA to allow the company AIT Therapeutics to start their Inhaled Nitric Oxide treatment. Some people have also done Inhaled Amikacin and I have also heard of trying other antibiotics

REPLY
Jo Ann K | @jkiemen | Jun 7, 2018
In reply to @cld120 "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..." + (show)
@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

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I also love how they scare us with the severity of the disease but in general, I feel this county and our CDC and FDA and pharma companies do not take this seriously and we are left to flounder.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 7, 2018
In reply to @cld120 "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..." + (show)
@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

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@rmason I remember you had said that in a previous e-mail to me, so I asked my dr if his. MAC treatment plan was published. That is when he said he isn't treating my mac , rather is treating my bronchiectasis. He said he has thought about publishing his outcomes. He then followed up with "his proof that his treatment plans work is by the successes like me." He also stated that the way he treats mac is a recipe they tend to follow there at Mayo. I told him that wasn't entirely true, that I have Connect members that go to Mayo and get put on the Big 3. The expression on his face was that of disappointment. He then said "I know, there are a couple of drs there still sticking to the old school way of treating it (at the Rochester Mayo). Pretty much, no drs at the Mayo in Florida would use the Big 3 to treat mac unless it was a severe and cavitary case. You are in charge of your own health and treatment. YOU can ask to try a different treatment plan and tell them you want to try specific drugs. State specifically what drugs you want to try. Most will work with you. Let me ask you this, does your dr have published success stories on using the Big 3?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 7, 2018
In reply to @cld120 "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..." + (show)
@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

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@jkiemen There is inhaled cipro too now, but I just use the pills.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 7, 2018
In reply to @cld120 "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..." + (show)
@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

Jump to this post

@jkiemen It is not only this country, the ambiguity is worldwide. Mac is truly a tough nut to crack.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 7, 2018
In reply to @cld120 "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..." + (show)
@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

Jump to this post

@jkiemen, you are right about the scare tactic. My doctor said mac is so slow growing, that it would take 50 yrs to follow a patient with a placebo group/treatment goup. That is another reason it is hard to get proven treatment documented. Because it is slow growing, you all have some time on your side to try another course of treatment. That applies only to avium bacterium.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 7, 2018
In reply to @cld120 "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..." + (show)
@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

Jump to this post

@rmason Will you ask your physician for documented cases of conversion? Conversion is when a person is totally free of mac and it never comes back. I would be very interested in seeing links stating such.

REPLY
Flib | @flib | Jun 7, 2018
In reply to @ling123 "@flib Got to be a little careful about sticking to 8 glasses of water everyday for..." + (show)
@ling123

@flib Got to be a little careful about sticking to 8 glasses of water everyday for long term. There is no consensus in the medical community as to the benefit of drinking 8 glasses a day. Besides, vegetables and fruits and other foods provide plenty of water unless you have very little of them in your daily diet. Water is a good thing for the most part. But it can also be dangerous if we have too much of it. Here is an article from Huffington Post in which people are debating the pros and cons. https://www.huffingtonpost.com/2011/07/14/drinking-8-glasses-of-wat_n_899276.html

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Thank you for this information.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 7, 2018
In reply to @cld120 "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..." + (show)
@cld120

Thanks to all for addressing the fatigue AND confusion about whether to go on the Big 3 antibiotics. I was diagnosed with MAC in June, 2017. I went to Mayo in Rochester & was told to go on all three antibiotics. When I started the third one, I saw flashing lights/visual disturbances after my second dose. An ophthalmologist told me to stop the Ethambutol (I believe it was that one) immediately, that he'd had patients go blind "pretty quickly" from taking it. I just got my second follow up CT scan, which shows things about the same as last year. A pulmonologist at the University Of Kentucky gave me a strong talk last week about MAC being a "serious" disease (oh thanks, I didn't know that..) & that the sooner I went through 18 months of Big 3 treatment, the better chance I had at beating it before MAC progresses any farther. I decided, at this point, that the side effects of the drugs are not worth it. I am 60 years old & would prefer a shorter lifespan than years of blindness, if forced to choose. That being said, I too have variable fatigue. I push myself to exercise regularly but allow myself to nap as needed.

Jump to this post

@jkiemen Have you contacted the NO group recently to see where it is at as far as a release date?

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