I wish I felt a little better. Discouraged.

Posted by kayskid @kayskid, Aug 10 3:34am

I am 4 months into Big 3 treatment and still feeling tired. Meds seem to have affected my gut so that I don't feel like eating. Very little cough but tightness in chest. Tried huff breathing after watching video (with some success). My blood work showed lymphocytes low and not sure if MAC is causing it or autoimmune issues. I've been doing heavy yard work for 2 hours per day and that exercise helps

@kayskid…I'm sorry to hear that you are discouraged. We all have come to believe that antibiotics are miracle cures, but that is not always the case.
If you had been diagnosed with TB instead of NTB, you would expect a year of convalescence doing nothing. I look at your ability to work two hours in the yard as positive and something to celebrate. It is OK to take a nap or many to restore your energy throughout the day. Protein drinks or bars may be easier to eat than regular meals .Be willing to change your expectations and activities during your treatment and you will feel better.

Liked by migizii

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Hello Kay. @kayskid I too am sorry that you are feeling cruddy. What used to help with the tightness in my chest was "Breath Easy' tea by Traditional Medicines. I buy mine from a grocery store called Kroger's, and I found it in the Natural food isle, not the tea and coffee isle. It can be purchased online as well. Can totally sympathize with the constant feeling of unwellness and lack of energy. I was in that situation for many, many yrs before getting the right treatment plan. I have been mac-free since 2014, so I want you to know that there is light at the end of the tunnel. It helps to read all that you can about this illness on this site and elsewhere. Be diligent on taking care of yourself. I am one of the Mentors in this group along with Sue. I am here if you have any questions. Are you able to navigate our group site alright?

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@kayskid I feel your discouragement. I was on the antibiotics for 1 1/2 years, and the tired feeling never left until I was off them for nearly four months – even now after nearly 8 months off I do not have the stamina I used to have. My ID doc told me that the antibiotics themselves wreak havoc with the body, so it is a double whammy when you have both an infection and the meds. If you are able to work for 2 hours at a time, you are doing better than many – I used to work 30 minutes, rest an hour & repeat to get that much done!
I second Terri's recommendation for Breathe Easy tea by Traditional Medicinals – I have found it at most large groceries, and depending where you are in the country, even at Walmart. They also have a Ginger tea if you suffer from nausea.
The loss of appetite is typical, and can become problematic if you lose too much weight. You might find some helpful suggestions in our previous discussion here: https://connect.mayoclinic.org/discussion/loosing-weight/
Good luck – MAC is a journey, and there are many here who can help you.
Sue

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I’ve been thinking about posting a question about fatigue. I also have low white blood counts. You have been on the antibiotics for one month longer than I have, and I am tired ever single day. Drug days are definitely a bit worse than my off days. I’ve never been a napper but I am now! I guess if this had to happen, experiencing during COVID-19 isn’t so bad since I really can’t go anywhere or do anything exciting anyway. So, I accept my naps and enjoy biking and gardening on my non-drug days. It’s daunting to think about how long we’ll be doing this, but I’m happy to know there may be an end in sight! Hope we can hang in there like all the others in this group. Their support makes a difference👍

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@n4seth

I’ve been thinking about posting a question about fatigue. I also have low white blood counts. You have been on the antibiotics for one month longer than I have, and I am tired ever single day. Drug days are definitely a bit worse than my off days. I’ve never been a napper but I am now! I guess if this had to happen, experiencing during COVID-19 isn’t so bad since I really can’t go anywhere or do anything exciting anyway. So, I accept my naps and enjoy biking and gardening on my non-drug days. It’s daunting to think about how long we’ll be doing this, but I’m happy to know there may be an end in sight! Hope we can hang in there like all the others in this group. Their support makes a difference👍

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n4seth, I like your attitude! I like that you are doing the things you enjoy i.e. biking and gardening. I hope you know to wear a mask when gardening; especially when handling store bought potting soil. It contains millions of mac in just one tablespoon of it. As far as fatigue goes, it def comes with the territory when you have mac and/or bronchiectasis. It is all about pacing oneself. When I was positive for mac, I could only get up and do some house work, or anything, for only 20 mins, then had to sit and rest for 40 mins. Things got done at a very slow pace, but they got done. My slogan was: A little bit here, and a little bit there, gets the job done! I have been free of mac since 2014 and free of pseudomonas since 2016; and although I still have serious lung issues, I have good energy most days. So, hang in there!

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@windwalker

n4seth, I like your attitude! I like that you are doing the things you enjoy i.e. biking and gardening. I hope you know to wear a mask when gardening; especially when handling store bought potting soil. It contains millions of mac in just one tablespoon of it. As far as fatigue goes, it def comes with the territory when you have mac and/or bronchiectasis. It is all about pacing oneself. When I was positive for mac, I could only get up and do some house work, or anything, for only 20 mins, then had to sit and rest for 40 mins. Things got done at a very slow pace, but they got done. My slogan was: A little bit here, and a little bit there, gets the job done! I have been free of mac since 2014 and free of pseudomonas since 2016; and although I still have serious lung issues, I have good energy most days. So, hang in there!

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Thank you Terri! That’s a good reminder about the potting soil…. I definitely think that’s how I got this in the first place!

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Thanks for the encouragement, everyone. I wonder if I became infected from potting soil as well. I do a lot of outdoor work and can't imagine wearing a mask while breathing hard to get a job done. The outdoor work is keeping me sane during the pandemic. My husband has Parkinson's Disease with dementia and getting outside is an enormous stress reliever. I am worried about low lymphocyte counts; wondering if it is caused by the infection or due to autoimmune issues.

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It’s my understanding that one of the drugs we are taking…. rifampin I believe, can cause low blood counts. One of Dr. Gwen Huitt’s videos from National Jewish Health addresses this.

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@kayskid

Thanks for the encouragement, everyone. I wonder if I became infected from potting soil as well. I do a lot of outdoor work and can't imagine wearing a mask while breathing hard to get a job done. The outdoor work is keeping me sane during the pandemic. My husband has Parkinson's Disease with dementia and getting outside is an enormous stress reliever. I am worried about low lymphocyte counts; wondering if it is caused by the infection or due to autoimmune issues.

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Do what keeps you sane! If you cannot use a mask when handling potting soil; then try holding your breath when scooping it out. That's what I do. Gardening has been a life saver for my daughter and I. That, and adopting a dog that keeps up taking walks.

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@kayskid

Thanks for the encouragement, everyone. I wonder if I became infected from potting soil as well. I do a lot of outdoor work and can't imagine wearing a mask while breathing hard to get a job done. The outdoor work is keeping me sane during the pandemic. My husband has Parkinson's Disease with dementia and getting outside is an enormous stress reliever. I am worried about low lymphocyte counts; wondering if it is caused by the infection or due to autoimmune issues.

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@kayskid – I have an issue with masks while doing hard work too, but I make an exception when handling the potting soil. What I do though, is dump it in a large plastic tub, wet it down thoroughly and walk away to let any dust settle, then use it to fill my pots and baskets. Also, wood mulch can be a source of MAC, so I hire someone to spread it for me. Then, before I work the soil in an area that has the mulch, I wet down the mulch, rake it out of the way, do my planting or digging, then put it back. Just trying to be as safe as I can while getting the job done!
Sue

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These are excellent tips…. I’ve been wearing a mask while weeding soil areas but not mulched areas. Better change my ways!

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@windwalker

Do what keeps you sane! If you cannot use a mask when handling potting soil; then try holding your breath when scooping it out. That's what I do. Gardening has been a life saver for my daughter and I. That, and adopting a dog that keeps up taking walks.

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Couldn’t live without my gardening!

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@sueinmn

@kayskid – I have an issue with masks while doing hard work too, but I make an exception when handling the potting soil. What I do though, is dump it in a large plastic tub, wet it down thoroughly and walk away to let any dust settle, then use it to fill my pots and baskets. Also, wood mulch can be a source of MAC, so I hire someone to spread it for me. Then, before I work the soil in an area that has the mulch, I wet down the mulch, rake it out of the way, do my planting or digging, then put it back. Just trying to be as safe as I can while getting the job done!
Sue

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Great tips Sue!

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@windwalker

Hello Kay. @kayskid I too am sorry that you are feeling cruddy. What used to help with the tightness in my chest was "Breath Easy' tea by Traditional Medicines. I buy mine from a grocery store called Kroger's, and I found it in the Natural food isle, not the tea and coffee isle. It can be purchased online as well. Can totally sympathize with the constant feeling of unwellness and lack of energy. I was in that situation for many, many yrs before getting the right treatment plan. I have been mac-free since 2014, so I want you to know that there is light at the end of the tunnel. It helps to read all that you can about this illness on this site and elsewhere. Be diligent on taking care of yourself. I am one of the Mentors in this group along with Sue. I am here if you have any questions. Are you able to navigate our group site alright?

Jump to this post

Hi Kay,
I took the big 3 for 18mths daily. During that time the Rifampin was lowered due to excessive tiredness Id have huge waves of intense listlessness. The listlessness stopped with the reduction. Im now on the big 3 3X week.Im hoping the cat scan is showing a mucous plug and not another strain of MAI. If its not a plug I think its an outpatient surgery. OMG. I had one surgery (biopsy) that was dx as MAC. Im scrupulous about protecting myself from it now. I exercise. I take super care of myself and Im scared. Im scared becasue the drugs are not taking away the MAC bacteria. I thinks its for life. IM scared to death. I cant get a second opnion from the jewish center unless they see me if thats correct I need to inquire. I need to know my options. Im only 59 and whats it going to look like in my 70 and 80s? Please writing back soon. Im nervous. I have a terrific doctor and this is good. Thankyou Kay, Deborah

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Sorry Kay that was meant for Windwalker. My tech skills are awful!. If this is useful for you the only way I battle my tiredness is exercise and with regular exercise it seemed to reboot my system. I mean I had to fight it hard. Did the treadmill, swam, anything and everything. THen I was able to settle into a regular exercise routine and did much better for it. It took me about 3 months to reboot and so when I was on the treadmill my body had to work three times as hard so I edged it up slowly over time and got my rifampin reduced only still in a dose that is efficient.

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