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

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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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@n4seth

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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@n4seth & @kayskid – Here is what my ID doc (a gardener himself) had to say about MAC, soil, compost, etc.
"MAC is ubiquitous. So are many other nasty microrganisms. They are everywhere. The idea is to minimize your exposure & not be paralyzed by fear. Be sensible – wet things down to keep from inhaling dust particles, avoid being in the garden on windy, dusty days, or wear a mask & gloves."

So, that is the policy we follow, we also wear N-95 masks when mowing – the one not mowing stays in the house or a far part of the yard. We shower or at least wash our faces, arms & hands when we get in the house. We toss the garden clothes & gloves in the laundry. It has worked well for us so far.

When we are in dusty, windy South Texas (where I think I got MAC from the feral chickens that nest under our trees) we pay someone to do our yard work, stay away while he does, then he washes down the patio & waters the yard before we go out.

Sue

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@sueinmn

@n4seth & @kayskid – Here is what my ID doc (a gardener himself) had to say about MAC, soil, compost, etc.
"MAC is ubiquitous. So are many other nasty microrganisms. They are everywhere. The idea is to minimize your exposure & not be paralyzed by fear. Be sensible – wet things down to keep from inhaling dust particles, avoid being in the garden on windy, dusty days, or wear a mask & gloves."

So, that is the policy we follow, we also wear N-95 masks when mowing – the one not mowing stays in the house or a far part of the yard. We shower or at least wash our faces, arms & hands when we get in the house. We toss the garden clothes & gloves in the laundry. It has worked well for us so far.

When we are in dusty, windy South Texas (where I think I got MAC from the feral chickens that nest under our trees) we pay someone to do our yard work, stay away while he does, then he washes down the patio & waters the yard before we go out.

Sue

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Thanks Sue! I like the practical, common sense suggestions. I definitely do not want to restrict my life due to fear but I also want to maximize my chances of becoming healthy. All the input from group members had been very helpful!

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