@anniepie

@alleycatkate No problem Kate. Actually I already have a really good diet with all the things you say and have done for many years. Unfortunately I still had the high cholesterol. It seems to be a problem with Hashimotos Hypothyroidism. It was under control with treatment for many years until I started the Rifampin. Now it's very high and it's risky to have for a long period of time. If I find out about any other options from a cardiac review I will let people know. Hugs, Annie

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Thanks @anniepie. I hope you can find a good solution.

@windwalker

@america Yay!! So glad to hear that! You ARE a shining star! Stay well my friend. You are one more feather in Mayo Clinic's cap. Big hug!

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Thanks Terri!! It’s a great feeling to be well again! Mac is negative and pseudomonas also! My new doctor is great and I’m just enjoying this moment. It’s amazing how life Could be at times so sick when it feels like you never going to get better. But hope and pressing on is what helps and never giving up! I don’t know what tomorrow may bring but for the moment I’m just in a place where I’m content and happy to feel alive again. After being in the hospital for a week with pneumonia and it was scary! I’m so blessed to be well and tested negative!! I do still have Bronchiectasis but it’s really not slowing me down. Dr Johnson has me on some daily meds and it has been working great. So be encouraged everyone there is HOPE!!!! Hugs to Terri who has been a my motivator!!! Hugs to all Rita

Thanks for the positive message! I can relate to feeling hopeless (and overwhelmed). I’ve relied on this forum for information since diagnosed with Mac in early 2019.

As far as my experience goes, I was on the Big 3 for 6 months, until I developed side effects. I saw a wonderful Mac specialist and was started on a nebulizer with lung clearing exercises and the Aerobika every morning and I’m off medication for now. I was positive for Mac at my last visit but finding this helpful in managing symptoms for now. I’m sure I’ll be back on medications one day but trying to keep myself well as long as I can.

Thanks again!

@america

Thanks Terri!! It’s a great feeling to be well again! Mac is negative and pseudomonas also! My new doctor is great and I’m just enjoying this moment. It’s amazing how life Could be at times so sick when it feels like you never going to get better. But hope and pressing on is what helps and never giving up! I don’t know what tomorrow may bring but for the moment I’m just in a place where I’m content and happy to feel alive again. After being in the hospital for a week with pneumonia and it was scary! I’m so blessed to be well and tested negative!! I do still have Bronchiectasis but it’s really not slowing me down. Dr Johnson has me on some daily meds and it has been working great. So be encouraged everyone there is HOPE!!!! Hugs to Terri who has been a my motivator!!! Hugs to all Rita

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@america that is fantastic news!! I am in the same boat after around 5 years, stop the meds in a month and a half, scary but exciting!

@america

Thanks Terri!! It’s a great feeling to be well again! Mac is negative and pseudomonas also! My new doctor is great and I’m just enjoying this moment. It’s amazing how life Could be at times so sick when it feels like you never going to get better. But hope and pressing on is what helps and never giving up! I don’t know what tomorrow may bring but for the moment I’m just in a place where I’m content and happy to feel alive again. After being in the hospital for a week with pneumonia and it was scary! I’m so blessed to be well and tested negative!! I do still have Bronchiectasis but it’s really not slowing me down. Dr Johnson has me on some daily meds and it has been working great. So be encouraged everyone there is HOPE!!!! Hugs to Terri who has been a my motivator!!! Hugs to all Rita

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America. So wonderful that you are feeling great. I am cheering for you!! It’s so good to hear such positive news. Candy

@america

Thanks Terri!! It’s a great feeling to be well again! Mac is negative and pseudomonas also! My new doctor is great and I’m just enjoying this moment. It’s amazing how life Could be at times so sick when it feels like you never going to get better. But hope and pressing on is what helps and never giving up! I don’t know what tomorrow may bring but for the moment I’m just in a place where I’m content and happy to feel alive again. After being in the hospital for a week with pneumonia and it was scary! I’m so blessed to be well and tested negative!! I do still have Bronchiectasis but it’s really not slowing me down. Dr Johnson has me on some daily meds and it has been working great. So be encouraged everyone there is HOPE!!!! Hugs to Terri who has been a my motivator!!! Hugs to all Rita

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Hi Rita @america. So glad to hear all of this news. Please stay in touch with all of us

@heathert

@america that is fantastic news!! I am in the same boat after around 5 years, stop the meds in a month and a half, scary but exciting!

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@heathert Fastastic news for you too! Yes I know it must be a bit scary for the future — maybe you could try things like intermittent high vitamin D or other things to help protect you in future after tyhe meds stop.
You've been a wonderful help to me Heather. i hope you can stay in contact with us in future. Hugs and thanks from Annie

@alleycatkate

Thanks @anniepie. I hope you can find a good solution.

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Thanks Kate @alleycatkate — I'm still getting more results from the cardiologist. Apparently there are other things that might help get the very high cholesterol down when the meds knock everything out — eg. antibody therapy, but it's expensive and hard to get. We'll see what happens in the next few weeks. Hugs, Annie

@anniepie

@heathert Fastastic news for you too! Yes I know it must be a bit scary for the future — maybe you could try things like intermittent high vitamin D or other things to help protect you in future after tyhe meds stop.
You've been a wonderful help to me Heather. i hope you can stay in contact with us in future. Hugs and thanks from Annie

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@anniepie Thank you so much. I will be trying some vitamins, I wish there was some sort of protocol to follow tho. I will definitely stay on mayo and help where I can. Hugs to you too Annie

@anniepie

Thanks Kate @alleycatkate — I'm still getting more results from the cardiologist. Apparently there are other things that might help get the very high cholesterol down when the meds knock everything out — eg. antibody therapy, but it's expensive and hard to get. We'll see what happens in the next few weeks. Hugs, Annie

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@anniepie Good luck. I hope the cardiologist will be helpful to you. Please update us.
🤗 Kate

@anniepie

Thanks Kate @alleycatkate — I'm still getting more results from the cardiologist. Apparently there are other things that might help get the very high cholesterol down when the meds knock everything out — eg. antibody therapy, but it's expensive and hard to get. We'll see what happens in the next few weeks. Hugs, Annie

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What is the connection between the Big 3 and high cholesterol? I hadn’t heard of that.
Thanks,

@kathyh The only connection I know of is the effects of both on the liver. One of the big three is of particular concern for the liver, and since most cholesterol meds increase liver enzymes, it can be problematic to take both. I was given the choice of being on cholesterol meds or off while on the Big 3. I chose off. (Irene5)

Thanks!

@kathyhg

What is the connection between the Big 3 and high cholesterol? I hadn’t heard of that.
Thanks,

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Hi Kathy @kathyhg. The Big 3 don't cause high cholesterol. The problem is that Rifampicin can, for some people, interact with anti-cholesterol drugs, making those drugs stop working. As a result, because the anti-cholesterol drugs stop working, people with a cholesterol problem before they took the Big 3, can find they have high cholesterol again. That's what happened for me. I hope this expalantion helps, Annie

Hi All, just some info I read about for anyone suffering from the chronic cough that comes with MAC. Not talking about the productive cough to rid the lungs of excess mucus, but the annoying, constant cough that sometimes even leads to gagging. I just read an article in the ASHA Leader. (That’s the professional magazine for Speech Language Pathologists.) When The Coughing Won’t Stop, November 2019. It talks about receiving Behavioral Cough Suppressant Therapy, (BCST), from a Speech Language Pathologist, (SLP), that specializes in voice and upper airway disorders and has received additional training in BCST. I AM an SLP and have never heard about this before. I found it very interesting. 80% of patient’s benefit from BCST therapy to learn how to control and minimize the coughing that interferes with everyday life. They talk about the cause being hypersensitivity to outside stimuli; perfume, smoke, dust, change in air temps, talking, laughing, etc., and can also occur in certain areas of the brain. Hypersensitivity can also be caused by coughing! So coughing makes us cough more! Only problem is physicians are not aware of this therapy, (surprise), so they don’t know to recommend it, AND there aren’t many SLPs trained or educated in it. I thought everyone would find it interesting and there may be some who would really benefit from this type of therapy.
Gina K