1. < MAC & Bronchiectasis

Supplements and the Big 3

Posted by Tina Sims @tinaesims, Aug 24, 2019

I have been diagnosed with MAC for about 6 months and have not been on medications because I feel fine with no coughing. The MAC now showed up in the smear test so my pulmonologist wants to start me on the Big 3 for 7 days a week. I've resigned myself to this and my cousin is the nurse practitioner in his clinic so I have a support system. My question is what supplements can I not take. I'm currently taking Vitamin D, Calcium, NAC, and Immune System Support. I asked him about Pro-Biotic and he told me not to go on a crazy high dose. Sometimes that can make things worse. The doctors are not into vitamins I have found!

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Tina Sims | @tinaesims | Aug 31, 2019

Thank you. I'm going to watch most of them tomorrow.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 1, 2019
In reply to @tinaesims "Thank you. This has been most helpful. I was thinking about the Probiotic and Vitamin D...." + (show)
@tinaesims

Thank you. This has been most helpful. I was thinking about the Probiotic and Vitamin D. I go in next week for my hearing and vision screening and then I start! I don't know when I should take the meds. I figure the pharmacist will tell me that. He said he's going to start me on one for a week to see how I handle it and then the next and then the next. I have a trip to NYC and he told me to GO!

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@tinaesims Sounds like your dr is on the ball. Starting on the Big 3 one at a time is the proper way to begin treatment. I hope you have a blast in NYC. I love that place!

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1 reply
Helen L/Orlando | @hsletter | Sep 1, 2019

@windwalker I have been on the Big 3 for 7 months and tolerating well...ONLY because I am taking a good probiotic the night before. My history with antibiotics has shown that I not only become constipated but I don't sleep well and as a result am out of sorts. All fine with the probiotic. We are not only killing off the bad bacteria but the good as well, so replenish your colon with plenty of good! Take at least 12 hours before the antibiotics. ALSO! I have Medicare Humana Choice PPO here in Florida. Found that I could reduce the my co-payment cost of Ethambutol and Azithromycin by having a tier exception request form sent to my Infectious Disease doc who prescribed them. He signed and sent to Humana resulting in a change from Tier 3 drug to Tier 1 copay. Big Savings!

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Tina Sims | @tinaesims | Sep 1, 2019
In reply to @sueinmn "https://www.nationaljewish.org/ntmvideos2016 Here is a whole series from the 2016 conference. Waiting for 2019 to become available." + (show)
@sueinmn

https://www.nationaljewish.org/ntmvideos2016 Here is a whole series from the 2016 conference. Waiting for 2019 to become available.

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I watched the whole series today and I am so happy I did. I wish I would have months ago. I hope this forum puts up the 2019 when it's available. I'm ready to go to the next one!

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diane47 | @diane47 | Oct 28, 2022
In reply to @sueinmn "@tinaesims Supplements, multi-vitamins and probiotics are 3 different issues, I think. Probiotics do seem to help..." + (show)
@sueinmn

@tinaesims Supplements, multi-vitamins and probiotics are 3 different issues, I think.
Probiotics do seem to help me with the digestive issues while I am on the big 3. The flood of antibiotics is so devastating to the normal flora in the GI tract that I see a difference. If I lay off them for a week, it seems like I have constant, watery diarrhea. If I take them 3-5 times a week, alternating 2 different formulas, I just have frequent, loose stools. Live culture yogurt does seem to help, but less than the probiotic.
Multi-vitamins are the ones the docs think just mostly go out the liver and kidneys.
Specific supplements are targeted to an individual's specific needs. I take a divided dosage of calcium, magnesium and zinc because I am at high rick for osteoporosis and actually had too-low levels. The levels have stabilized and I am not showing any bone loss after doing this for over 10 years - I am doing well compared to my same-age cousins who don't take calcium. I also take a magnesium supplement to help regulate my (slightly) elevated blood pressure in lieu pf blood pressure meds I do not tolerate well. These both must be taken far from the time I take my antibiotics to avoid diminished effectiveness of the antibiotics, so I take them with breakfast and dinner. (I take my antibiotics at bedtime.)

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Do you take all 8 antibiotics at bedtime? That's a lot of pills to take at one time. I am on a 3-day-a-week antibiotic schedule, so that is 8 antibiotic pills on certain days. My doctor told me "take them any way you can get them down," so I take 3 after breakfast, 3 after lunch, and 2 after dinner. That makes it difficult to fit in calcium. Also, I've read that the antibiotics are more effective on an empty stomach, but I don't think I could tolerate that.
Diane

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maureen2022 | @maureen2022 | Feb 3, 2023
In reply to @sueinmn "@tinaesims Supplements, multi-vitamins and probiotics are 3 different issues, I think. Probiotics do seem to help..." + (show)
@sueinmn

@tinaesims Supplements, multi-vitamins and probiotics are 3 different issues, I think.
Probiotics do seem to help me with the digestive issues while I am on the big 3. The flood of antibiotics is so devastating to the normal flora in the GI tract that I see a difference. If I lay off them for a week, it seems like I have constant, watery diarrhea. If I take them 3-5 times a week, alternating 2 different formulas, I just have frequent, loose stools. Live culture yogurt does seem to help, but less than the probiotic.
Multi-vitamins are the ones the docs think just mostly go out the liver and kidneys.
Specific supplements are targeted to an individual's specific needs. I take a divided dosage of calcium, magnesium and zinc because I am at high rick for osteoporosis and actually had too-low levels. The levels have stabilized and I am not showing any bone loss after doing this for over 10 years - I am doing well compared to my same-age cousins who don't take calcium. I also take a magnesium supplement to help regulate my (slightly) elevated blood pressure in lieu pf blood pressure meds I do not tolerate well. These both must be taken far from the time I take my antibiotics to avoid diminished effectiveness of the antibiotics, so I take them with breakfast and dinner. (I take my antibiotics at bedtime.)

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Totally agree with Sue. I also take some supplements (targeted towards deficiencies - not a multi) because of my kidney damage. I am on the big three and cannot live well without daily strong probiotics. Also vitamin D3 and K2, keep certain levels in my labs balanced, and sometimes turmeric for inflammation. I see an individualized approach to supplementing as best, based on tracking labs or outcomes. I'm also in Canada so definitely need the Vitamin D!!

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1 reply
irenea8 | @irenea8 | Feb 4, 2023
In reply to @maureen2022 "Totally agree with Sue. I also take some supplements (targeted towards deficiencies - not a multi)..." + (show)
@maureen2022

Totally agree with Sue. I also take some supplements (targeted towards deficiencies - not a multi) because of my kidney damage. I am on the big three and cannot live well without daily strong probiotics. Also vitamin D3 and K2, keep certain levels in my labs balanced, and sometimes turmeric for inflammation. I see an individualized approach to supplementing as best, based on tracking labs or outcomes. I'm also in Canada so definitely need the Vitamin D!!

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I also agree targeted supplements is very important for some people. I really do not know where i would be if i had not started taking vitamin D for years. I have read that many Pulmos say if you take anything for Bronchiectasis take D. Of course if you have a high calcium issue you should not take D but that would be more rare. Getting your D levels tested once a year to see if your supplement is working is also a good idea. Some assimilate better than others. And adding vitamin K is important but take it at a different time or they compete. Vitamin C is also important for us. And of course probiotics.

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1 reply
dorma | @dorma | Feb 15, 2023

Taking the three, three times a week, causes yeast infections about every 5 weeks. I eat Greek yogurt, and/or drink buttermilk, and I take probiotics. Is there a way to prevent the yeast infections from coming back so often?

I have to take the prescription to get rid of it every time.

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northland | @northland | Feb 16, 2023
In reply to @irenea8 "I also agree targeted supplements is very important for some people. I really do not know..." + (show)
@irenea8

I also agree targeted supplements is very important for some people. I really do not know where i would be if i had not started taking vitamin D for years. I have read that many Pulmos say if you take anything for Bronchiectasis take D. Of course if you have a high calcium issue you should not take D but that would be more rare. Getting your D levels tested once a year to see if your supplement is working is also a good idea. Some assimilate better than others. And adding vitamin K is important but take it at a different time or they compete. Vitamin C is also important for us. And of course probiotics.

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Hay, this is what I found on google about vit d and vit k and taking them together.

"Should you take vitamin D and K at the same time?

It's crucial that these vitamins be taken together because supplementing vitamin K with D helps the body use calcium properly to build bone instead of depositing it dangerously in arteries and soft tissue. Feb 20, 2018

Are you taking Vitamin D3? Don't forget Vitamin K!https://www.balancedwellbeinghealthcare.com › are-yo"

Am I missing something????

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1 reply
irenea8 | @irenea8 | Feb 17, 2023
In reply to @northland "Hay, this is what I found on google about vit d and vit k and taking..." + (show)
@northland

Hay, this is what I found on google about vit d and vit k and taking them together.

"Should you take vitamin D and K at the same time?

It's crucial that these vitamins be taken together because supplementing vitamin K with D helps the body use calcium properly to build bone instead of depositing it dangerously in arteries and soft tissue. Feb 20, 2018

Are you taking Vitamin D3? Don't forget Vitamin K!https://www.balancedwellbeinghealthcare.com › are-yo"

Am I missing something????

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You need to take K if you are taking D3 but not at the same time of the day. I think when it says taken together it does not mean at the same time. It just means be sure to take K if you are taking D3. Then the D3 is more effective.

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