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You can feel better!

Posted by @windwalker, Mon, Jun 4 12:22pm

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.

REPLY

You look great, @windwalker ! So proud of you for doing all you can to combat this disease. Good attitude is an important key to gaining and maintaining health. You are a role model to all of us here who are faced with similar challenges (some are tougher than others) and are fighting the same fight.

Liked by brigby, jameck

Don’t have one yet, but that is so awesome for you! Yay!

@ling123

You look great, @windwalker ! So proud of you for doing all you can to combat this disease. Good attitude is an important key to gaining and maintaining health. You are a role model to all of us here who are faced with similar challenges (some are tougher than others) and are fighting the same fight.

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@ling123 Thank you Ling! You are a great role model also. You are proof that keeping active keeps us strong. Your tennis playing I am sure; has helped keep your lungs stronger to keep the mac at bay.

Liked by brigby

That's amazing Terry…exercise helps fill the emotional component we all carry…exercising for me as well, helps me cope with the sadness and loss of our health issues…congrats my friend

I think it's wonderful how you have managed and been motivated to help others. A big thank you!

@flib Together we fight!

Liked by Carolyn, brigby

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

@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?

@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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Getting out of house is so difficult but I am bound and determined to try to fight this. I think getting into hospital exercise class to get back breathing is something I am going to try. Heat as you know is horrific and warned about weather. My husband was called up in Desert Storm and I volunteered 80 hours a week in the most filthy Reserve Center. I seemed to get sarcoid while others got strange diseases. Wonder if MAC was overlooked. Told at one point, my problem was COPD because I smoked excessively. I never smoked. Learned I had MAC two years ago but got so intensively sick after horrendous bout of "flu" this past January. Also I had Achalasia and was again tested 2 weeks ago for this. Told to take Pepcid but doubled over in pain and severe headache. I am very "allergic" to many meds and got so violently ill to typical meds given for MAC. One pool is private and checked but can you send tests by NIH. Doctors tell me to exercise in walking in pools at Life Time for winter pool? I have been so week physically but I want to fight this. Does anyone ever have "flu" symptoms they have been able to fight? Going in pool(indoor) with lots of kids may be problem???? Told this is way for me to actually stand up as trying to walk can be so difficult – in pool water floatation was only done twice. This is done in winter. Does getting on bike for short ride down block make sense? Is there doctor in Ann Arbor area who works with Mayo?

@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 I have flu symptoms periodically. That’s one of the reasons I went to the doctor in 2014. I felt like I had the flu 24/7 and was exhausted. It doesn’t seem to matter whether I am on the Big 3 or not. The flu symptoms persist along with periodic night sweats. I went through the change of life stuff almost twenty years ago. The exhaustion is overwhelming. I try most days to keep putting one foot in front of the other. My husband has sarcoid and never smoked . I am going to ask his pulmonologist to check for MAC when he has another bronchoscopy. You take care!

@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?

@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.

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.

@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!

@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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