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Extreme fatigue with MAC

MAC & Bronchiectasis | Last Active: Sep 15, 2019 | Replies (310)

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@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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Replies to "Thanks to all for addressing the fatigue AND confusion about whether to go on the Big..."

@cld120, Thank you for sharing that. Your post is right on time with something I was going to share tonight. I went for my annual wellness check-up today at the Mayo in Florida. Yes, I said wellness check-up. Am I well? Technically, no. I still have bronchiectasis and the propensity to be full blown infected with mac, pseudomonas, or any other kind of opportunistic organism. But! My x-rays look mostly unchanged, my oxygen levels have come up, my six minute walk is normal now, and I haven't coughed in two years. My pulmonologists generously gave me extra office time to ask him questions about mac and treatment amoung other lung related talk. We discussed the Big 3 antibiotic regimen. I asked him why he never suggested putting me on it. He said he would only put a patient on it if they had cavitary mac. (Pseudomonas can also cause cavities in the lungs) He said whenever he gets new mac patients that their previous dr had put them on the Big 3 & they are NOT cavitary, then he takes them OFF! He said the Big 3 is over-drugging. I asked him about my mac treatment (listen @rmason) he said "I am not treating your mac, never have. I am treating your bronchiectasis." I was blown away! I said "Wait, whaaaat?" He repeated it and explained. The alternating monthly antibiotics I take are actually a prophylaxis to keep any kind of infection from my lungs for the bronchiectasis. He said the mac recedes on it's own most of the time. The milder antibiotics I was put on; chased it down to a very small amount and the inhaled saline makes the lungs unsuitable for mac to inhabit. He said there is no cure currently for mac, we can only keep it at bay. It is like rust, it will return. Mac returns for the majority of people who have it, so there is no point in putting the Big 3 toxic drugs in your system. There are members who have posted that that is true from their own experience. Every single one of us should be nebulizing 7% sodium chloride 2x day. It is salt mist, harmless. and it is very effective for minimizing mac. He said it is all a crap shoot no matter what with mac treatments. I will share more tomorrow. What are your thoughts on this? @macjane

@cld120 Do you do nebulized saline?

This makes some sense, but I don’t think any physician in another facility is going to follow a recommendation for a medical treatment or regimen that has not been studied or published-I work in the medical field and know this to be true.

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

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.

@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?

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

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

@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.

@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.

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

@rmason Just wanted to add that Mayo physicians are highly respected around the world because they are among the best. Most other physicians do want to hear about what Mayo's cutting edge physicians are saying. That has been my experience anyway.