Supplements and the Big 3

Posted by tinaesims @tinaesims, Sat, Aug 24 5:59am

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!

@tinaesims, The drs at Mayo Clinic don't believe in taking vitamin suppliments. They have told me that people's bodies just cycle them out as waste and it creates more work for the liver. Very few actially get absorbed. It is best to get your vitamins from a healthy diet.

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From what I have read from multiple sources, the studies have not shown that vitamin supplements have any positive effect on our health. I had taken multi vitamin supplements for years until recently when I read more and more about them not being effective. So I decided to stop taking them. Terri is absolutely right that we'd be much better off considering getting the vitamins from food.

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What do you think about the probiotics?

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@tinaesims

What do you think about the probiotics?

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@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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@tinaesims I started out the same. Positive cultures and really no other symptoms. They watched it for 2 years then when there were changes happening on my CT, they started the meds. I wished that they would have started them sooner before the changes showed on my CT. Now I am having a harder time getting rid of this. I was reading about NAC and L Glutathione. I am not sure if that will interact with the Big 3. I am now taking them daily. I do take Probiotics at least 3-4 hours after my dose. I do take Vitamin D. My ID MD told me if you want to help your immune system that is about the only Vitamin he would suggest.

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@jkiemen

@tinaesims I started out the same. Positive cultures and really no other symptoms. They watched it for 2 years then when there were changes happening on my CT, they started the meds. I wished that they would have started them sooner before the changes showed on my CT. Now I am having a harder time getting rid of this. I was reading about NAC and L Glutathione. I am not sure if that will interact with the Big 3. I am now taking them daily. I do take Probiotics at least 3-4 hours after my dose. I do take Vitamin D. My ID MD told me if you want to help your immune system that is about the only Vitamin he would suggest.

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@jkiemen
JoAnn
I take suppliments also I think in a perfect world we would get our vitamins in our food but the ground is depleted from nutrients. Also many people just don't eat healthy nutrient dense foods like we should.
Everyone should get their vitamin D level checked by their primary Dr.
Mine was extremely low now I suppliment 5000 units a day and its up to where it should be. I live in Minnesota so our sun exposure is limited too. Vitamin D is extremely important to your immune system.
I take C, zinc, magnesium aswagandha and NAC.
What type of glutithion do you use? I have heard of nebulizing glutithion also going to check with my Pulmonologist regarding that when I see him next.
Unfortunately in our healthcare Doctors get very little teaching on diet and suppliments.
Shari

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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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See this video for dosing information – https://www.youtube.com/watch?v=L-G8LEy-ehM&app=desktop Dr Huitt is one of the authorities in treating NTM.
Pharmacists generally are not too informed about these multi-antibiotic regimens, unless affiliated with a hospital, clinic or physician who routinely prescribes them. Exception: PharmD medication specialists, usually affiliated with the in-house pharmacy in hospital or clinic, who regularly do consults on complex cases.

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This was a great video. Is there a way to see more? I think at one point I saw you could watch others. Oh… what kind of probiotics do you take and do you take a specific brand and when during the day?

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@tinaesims

This was a great video. Is there a way to see more? I think at one point I saw you could watch others. Oh… what kind of probiotics do you take and do you take a specific brand and when during the day?

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

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

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@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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@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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@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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