1. < MAC & Bronchiectasis
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You can feel better!

Posted by Terri Martin, Volunteer Mentor @windwalker, Jun 4, 2018

Hello. I thought I would post this pic today to hopefully inspire others to keep plodding along with your treatments whether they be antibiotics or taking a natural approach. Never give up on regaining your health! I just finished an hour long bicycle ride. There have been many years where this was an impossibility. There were many years where I couldn't walk 20 feet without sitting to catch my breath. I am welcoming all other success stories.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 6, 2018
In reply to @windwalker "@macjane Sometimes we have to weigh the benefits over the risk. Is the pool a private..." + (show)
@windwalker

@macjane Sometimes we have to weigh the benefits over the risk. Is the pool a private outdoor pool? If so, that minimizes the bacterial load in it if it is being properly maintained. You can always have it tested by a lab for $150.00. Let me know if that is what you want to do and I will send you the lab info. I have posted links on this thread to connect you all to tests performed by NIH, who I absolutely trust; for you all to read and get the full scoop on what is found in swimming pool water. How infected are you now? Is the pool a possible place where you caught mac in the first place? I joined a gym and take a one hour cardio class (headed there in 5 mins.) I go three times a week. Getting out of the house and joining others helps a great deal with depression. Can you replace swimming for something else?

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@macjane, Hello.Since you are so sensitive to meds; are you at least trying the nebulized saline treatments?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 6, 2018
In reply to @macjane "Can I swim in chlorinated pool? Depression has to be fought. Can lack of physical exercise..." + (show)
@macjane

Can I swim in chlorinated pool? Depression has to be fought. Can lack of physical exercise be problem and lead to extreme fatigue

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@macjane, Exercise def helps with everything. Is there a gym near you that offers a 'Silver Sneakers' program? That is where I get my cardio exercise. It is a class with a leader, music, and it is fun. Some of the exercises are done while sitting in a chair.

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jameck | @jameck | Jul 15, 2018

I am so glad to see this. I am just starting my journey after having a virus in January. Everything I see and read from everyone is scaring me to death. I don’t know what to expect. Surgery, meds being horrible, going on disability?? So scared. I need to know that there is hope for me.

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19 replies
janovr | @janovr | Jul 15, 2018
In reply to @jameck "I am so glad to see this. I am just starting my journey after having a..." + (show)
@jameck

I am so glad to see this. I am just starting my journey after having a virus in January. Everything I see and read from everyone is scaring me to death. I don’t know what to expect. Surgery, meds being horrible, going on disability?? So scared. I need to know that there is hope for me.

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Bless you @jameck ! You will be ok! I was DX in 2015. I cannot take the Big 3 , but as my doctor said... For you the cure is worse than the disease! This bacteria is environmental and is in air, water and soil. My immune system was clearly weakened as I had pneumonia 3 times in a 12 month period. My advice! Find a doctor who is knowledgeable about NTM. I travel 2 hours. Others just throw out the Big 3 as that is truly all they know to do for treatment! Above all.... DON'T PANIC! We are here for you! Hugs and prayers!

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jameck | @jameck | Jul 15, 2018
In reply to @jameck "I am so glad to see this. I am just starting my journey after having a..." + (show)
@jameck

I am so glad to see this. I am just starting my journey after having a virus in January. Everything I see and read from everyone is scaring me to death. I don’t know what to expect. Surgery, meds being horrible, going on disability?? So scared. I need to know that there is hope for me.

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Thank you @janovr I appreciate the encouragement. I need all I can get. I am concerned about taking that Meds. I am allergic to everything. Can I ask what you did instead of those?

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heathert | @heathert | Jul 16, 2018
In reply to @jameck "I am so glad to see this. I am just starting my journey after having a..." + (show)
@jameck

I am so glad to see this. I am just starting my journey after having a virus in January. Everything I see and read from everyone is scaring me to death. I don’t know what to expect. Surgery, meds being horrible, going on disability?? So scared. I need to know that there is hope for me.

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@jameck We have all been in your shoes and I remember how scary it was in the beginning. The big 3 can knock you at first but things get better so dont worry and they do a good job. Lots is happening in the medical world for Mac so hopefully soon an easy cure will be developed for us. hang in there and do your due dilligence, speak out until you get your answers from your specialist, the not knowing is so much worse. Take care and ask as many questions on here as you wish!

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Jane S. Brown | @macjane | Jul 16, 2018
In reply to @jameck "I am so glad to see this. I am just starting my journey after having a..." + (show)
@jameck

I am so glad to see this. I am just starting my journey after having a virus in January. Everything I see and read from everyone is scaring me to death. I don’t know what to expect. Surgery, meds being horrible, going on disability?? So scared. I need to know that there is hope for me.

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I can identify with what you are feeling. I think this support group will come up with some good ideas to problems that seem to be overwhelming. I can't seem to find these answers to taking BIG 3 near us. I got so violently ill and have had such difficulty sleeping. I am planning to seek out answers from our support group as others can identify what we experience. Use the group often. I use a CPAP that I am now questioning. I also think my lack of energy has allowed too much dust and disorganization mentally and physically to take over. Ironically, ran into some people last week who sought second opinions from Mayo. I think you will find this support group incredible.

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jameck | @jameck | Jul 16, 2018
In reply to @jameck "I am so glad to see this. I am just starting my journey after having a..." + (show)
@jameck

I am so glad to see this. I am just starting my journey after having a virus in January. Everything I see and read from everyone is scaring me to death. I don’t know what to expect. Surgery, meds being horrible, going on disability?? So scared. I need to know that there is hope for me.

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Thank you so much. So far this group has helped a lot. Good know I have a place to go for info and encouragement!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2018
In reply to @jameck "I am so glad to see this. I am just starting my journey after having a..." + (show)
@jameck

I am so glad to see this. I am just starting my journey after having a virus in January. Everything I see and read from everyone is scaring me to death. I don’t know what to expect. Surgery, meds being horrible, going on disability?? So scared. I need to know that there is hope for me.

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@jameck, Hello and welcome to our group. Please read from the 'Discussion' board that is located on our Mac & Bronchiectasis face page. There, you can find good information about dealing with this disease. Older posts also hold a wealth of info. What we have is a frightening diagnosis, no doubt. It is a disease that requires careful management. We can live out our lives with this disease, provided we stay on top of it. Learn all that you can about it on this site, as well as other reputable places like http://www.nih.gov. and http://www.ntminfo.org This site here on Connect is a place to share whatever you feel comfortable with concerning our illness. It is a place to ask questions, share experiences and get support. Learn how to use this site, for example, you can click on a member's @name if you want to learn more about that person. I am glad that you found this support group. Please know that I am here for you, and so are others in this group. Do you have a first name? - Terri

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 16, 2018
In reply to @jameck "I am so glad to see this. I am just starting my journey after having a..." + (show)
@jameck

I am so glad to see this. I am just starting my journey after having a virus in January. Everything I see and read from everyone is scaring me to death. I don’t know what to expect. Surgery, meds being horrible, going on disability?? So scared. I need to know that there is hope for me.

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@jameck I Hi. I was diagnosed with mac in 2005. I refused treatment at that time. I sought treatment from the Mayo in 2013 where I started a diff treatment other than the Big 3. I am still here and have had mac free sputem tests since 2014. I did catch pseudomonas in 2016 and was treated for that. Presently, I am infection free and haven't coughed since 2016. I still have the God aweful fatigue that comes and goes on any given day. This makes it difficult to make plans to do things with friends or travel. Despite everything, I have chosen to be happy anyway. We are so much more than this stupid disease.

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