I wish I felt a little better. Discouraged.

Posted by kayskid @kayskid, Aug 10, 2020

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

@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?

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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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Very good advice about wearing a mask when working near soil and wood chips.

I wonder if this would apply to walking on dirt/gravel paths or those that have been covered with mulch, especially when dry? And on a windy day to add to dust stirred up by walking?

I usually walk behind my husband and our (big) dog if we’re on a narrow path so that I don’t risk tripping over the dog’s leash as she’s exploring. That’s probably the worst place to walk!

I’m guessing this is also a place where I should wear a mask?

Any suggestions would be appreciated.

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@kathyhg

Very good advice about wearing a mask when working near soil and wood chips.

I wonder if this would apply to walking on dirt/gravel paths or those that have been covered with mulch, especially when dry? And on a windy day to add to dust stirred up by walking?

I usually walk behind my husband and our (big) dog if we’re on a narrow path so that I don’t risk tripping over the dog’s leash as she’s exploring. That’s probably the worst place to walk!

I’m guessing this is also a place where I should wear a mask?

Any suggestions would be appreciated.

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Thanks for posting about working in soil and mulch. My doctors know that I get through the tiredness by working in the yard but have not said anything about the dangers. I should be finished in two more months. My eyes and hearing have been affected. Will this get better once I am off the med?. I feel sorry for the ones just starting but you will get through the rough times. Just hang in there and keeping reading the posts and voicing your problems. This group has gotten me through the last Thanks to everyone for your comments and help.

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@derbeltal

Thanks for posting about working in soil and mulch. My doctors know that I get through the tiredness by working in the yard but have not said anything about the dangers. I should be finished in two more months. My eyes and hearing have been affected. Will this get better once I am off the med?. I feel sorry for the ones just starting but you will get through the rough times. Just hang in there and keeping reading the posts and voicing your problems. This group has gotten me through the last Thanks to everyone for your comments and help.

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@derbeltal, Hello. I am sorry to hear that you have issues with your eyesight and hearing. Sometimes these side effects will resolve themselves, and sometimes they can be permanent. You must be very happy about going off of your meds in two months. How long have you been on them?

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@kathyhg

Very good advice about wearing a mask when working near soil and wood chips.

I wonder if this would apply to walking on dirt/gravel paths or those that have been covered with mulch, especially when dry? And on a windy day to add to dust stirred up by walking?

I usually walk behind my husband and our (big) dog if we’re on a narrow path so that I don’t risk tripping over the dog’s leash as she’s exploring. That’s probably the worst place to walk!

I’m guessing this is also a place where I should wear a mask?

Any suggestions would be appreciated.

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Masking up never hurts! The less debris we inhale the better as our lungs are not good at self cleaning due to bronchiectasis.

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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, the fatigue can be very daunting and depressing. I suffer from multiple serious lung issues that would naturally slow me down; one of them being a rigid and nearly flat diaphragm. It takes a LOT of energy for me to consistently draw in good breaths. I begged my dr for Adderall, a stimulant. He is my cousin's dr (she has sarcoidosis, & very fatigued) he believes that people w/chronic illness can benefit from a little lift. He prescribed 20 mg, but I break it off in 2.5 mg. So my 30 day supply lasts a long time. Most drs will frown on this concept, but it is along the lines of 'micro-dosing' like they do with LSD now for depression. I told that prescribing dr that I didn't want to live anymore if I cannot get up off of the couch and enjoy life. I had always been a very active person, so I was very down about the situation. I have ADD also, so it wasn't a big stretch to put me on it. I find that ginsing, a natural herb suppliment, also helps. I buy it by the box of 30. It comes in little glass bottles and also contains Royal bee pollen, which is also supposed to boost energy. Most Asian or international markets carry it. Can buy ginsing tea too. My daughter uses that. Once you have the infection gone, your natural energy should return. Exercise is a great booster too. Remember, A body in motion, stays in motion!

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OMG, wood mulch has it too? Thanks, Sue. Today I wore a mask when planting a shrub, but I took it off to rake the mulch – shoot! Thanks for the info about Rifampin lowering lymphocyte counts. This cheers me a little…

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Okay, so now I have a question. Is it only the bagged potting soil and mulch that has the mycobacteria and because it is dry and dusty it is inhaled? Mostly I make my own compost and I compost my own wood chips. Usually, it is not dry when I use it…..I wonder if it is safe. I live in the Northeast. ..

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Hi Kay,
Good question! I make my own compost too. Dr. Joe Falkinham says commercial potting soil is rich in peat and contains high numbers of NTM-1 million per gram. He suggests that we use an N95 mask to avoid dust inhalation. Of course, he made that recommendation prior to COVID 19 and he doesn't address compost. I've tried wearing an N95 mask while weeding and it was tough. I do wear a surgical mask now and try to limit my gardening to early morning when it's not so hot. I guess not matter what, we need to be cautious.

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@windwalker

@n4seth, the fatigue can be very daunting and depressing. I suffer from multiple serious lung issues that would naturally slow me down; one of them being a rigid and nearly flat diaphragm. It takes a LOT of energy for me to consistently draw in good breaths. I begged my dr for Adderall, a stimulant. He is my cousin's dr (she has sarcoidosis, & very fatigued) he believes that people w/chronic illness can benefit from a little lift. He prescribed 20 mg, but I break it off in 2.5 mg. So my 30 day supply lasts a long time. Most drs will frown on this concept, but it is along the lines of 'micro-dosing' like they do with LSD now for depression. I told that prescribing dr that I didn't want to live anymore if I cannot get up off of the couch and enjoy life. I had always been a very active person, so I was very down about the situation. I have ADD also, so it wasn't a big stretch to put me on it. I find that ginsing, a natural herb suppliment, also helps. I buy it by the box of 30. It comes in little glass bottles and also contains Royal bee pollen, which is also supposed to boost energy. Most Asian or international markets carry it. Can buy ginsing tea too. My daughter uses that. Once you have the infection gone, your natural energy should return. Exercise is a great booster too. Remember, A body in motion, stays in motion!

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Hi Terri,
You always have such great suggestions. I totally understand the depression that comes with fatigue and I think you are so lucky to have found a physician that you can work with. I am a total believer that a body in motion, stays in motion and that is what keeps me going. I think my fatigue now is mostly due to the drugs so I shouldn't complain. Thanks for your help! Nancy

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