How is everybody doing?

Hello All! The forum has gone quite. Haven’t heard from some of you in awhile. I am hoping some of you will check in. As for me, I just got ALL of my sputem lab reports going back to 2013 as I had requested. My very last test from June came back negative for everything. Yay!!!! I still battle fatigue and shortness of breath though. There were some organisms picked up in the past that I had not recognized, so I am going to Google them. Look forward to hearing from everyone! -Terri M.

@tdrell

Cld120 re no production of sputum for cultures….at NJH they -respiratory therapists- used a high degree of sodium solution for inhalation to irritate lungs to produce mucus.
At NJH…they collect 3 specimens over 3 days.
I am collecting them here at home in Wisconsin….first one had too much saliva so I had to repeat it…I was going for quantity….lab told me how to differentiate … I have the lung secretions when I awaken I have discovered.
I had a bronchoscopy a year ago….no problems!
Tdrell

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No, they haven’t. Respiratory Therapy at a local hospital was going to try it but the RT’s said they’d NEVER had any success doing it. I am going to an Infectious Disease specialist at the University of Kentucky Medical Center at the end of August. Am hoping that folks there are more experienced with MAC/sputum inducement! After using the nebulizer for several weeks with a 3% saline solution twice/day, I am coughing more & getting a tiny bit of mucous up, hoping this accelerates!

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@tdrell

Cld120 re no production of sputum for cultures….at NJH they -respiratory therapists- used a high degree of sodium solution for inhalation to irritate lungs to produce mucus.
At NJH…they collect 3 specimens over 3 days.
I am collecting them here at home in Wisconsin….first one had too much saliva so I had to repeat it…I was going for quantity….lab told me how to differentiate … I have the lung secretions when I awaken I have discovered.
I had a bronchoscopy a year ago….no problems!
Tdrell

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Cid120 if l recall correctly at NJH the respiratory therapist had me start on back in bed and do inhalation therapy….thendo coughing…with the way they taught there…deep breathes thru nose…huff out 3 times and cough on last…. tdrell

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@tdrell

Cld120 re no production of sputum for cultures….at NJH they -respiratory therapists- used a high degree of sodium solution for inhalation to irritate lungs to produce mucus.
At NJH…they collect 3 specimens over 3 days.
I am collecting them here at home in Wisconsin….first one had too much saliva so I had to repeat it…I was going for quantity….lab told me how to differentiate … I have the lung secretions when I awaken I have discovered.
I had a bronchoscopy a year ago….no problems!
Tdrell

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@tdrell, So you literally do Inhaler (I use Albuterol 1-2 puffs 2x/daily), then Nebulizer laying on your back?
At Mayo, the book they gave me says to sit up straight, but I can certainly try that way.

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I did not have a good experience with Cipro this time. Towards the end, lots of diarrhea, and throughout, I had great difficulty in sleeping. I was up for hours in the middle of the night; just couldn’t go to sleep. I’m still not sleeping well and feel really zonked. Never had that before. I’m not sure that Cipro helped that much; actually the Bactrim worked better on the 99.5 temps and no diarrhea. Just nausea, which, in retrospect, seems a better choice. The amount of sputum now is minimal, which I hope is good. I’m sounding better because I have a better idea of what is wrong. Before, there was no clear picture. I’ve actually had a few mornings when my head was clear, not fuzzy. I have my hands full here with a difficult husband who is terminal with cancer and relatives who are helpful but coming and going. I’m not sure what “improvement” would mean for me. Probably no temperature. The coughing never was a problem since I only cough up stuff once a day. In fact, it’s time for that now. Thanks for your caring, blessings, Robyn

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@robynmar

I did not have a good experience with Cipro this time. Towards the end, lots of diarrhea, and throughout, I had great difficulty in sleeping. I was up for hours in the middle of the night; just couldn’t go to sleep. I’m still not sleeping well and feel really zonked. Never had that before. I’m not sure that Cipro helped that much; actually the Bactrim worked better on the 99.5 temps and no diarrhea. Just nausea, which, in retrospect, seems a better choice. The amount of sputum now is minimal, which I hope is good. I’m sounding better because I have a better idea of what is wrong. Before, there was no clear picture. I’ve actually had a few mornings when my head was clear, not fuzzy. I have my hands full here with a difficult husband who is terminal with cancer and relatives who are helpful but coming and going. I’m not sure what “improvement” would mean for me. Probably no temperature. The coughing never was a problem since I only cough up stuff once a day. In fact, it’s time for that now. Thanks for your caring, blessings, Robyn

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I’m just jumping in here (without knowing exactly which bug you are treating)…… but Mayo’s had me on Bactrim previously…… and cipro……. but clindamycin has been the one that has worked best for me.  Less side effects and better outcome.  Just
wondering if you have tried that.  It’s my favorite of all that’s been tried for me.

Jan Todd

T-Bar Country

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Thanks, Jan. The cipro caused sleeplessness and diarrhea for me. The Bactrim caused some nausea, but not bad. Did you have any side effects, like nausea, with clindamycin? I suspect I will be on more antibiotics to keep the symptoms down. I get a low grade fever with flu-like symptoms (chills, body aches). The original MAC isn’t too active, but there are other opportunistic bacteria that have caused my problems. I’m seeing an Infectious Diseases specialist, so this is a long term treatment. Considering that I am 89 yrs old, I just want to be comfortable. So I’ll keep looking for an antibiotic which is easier on my body. Thanks again for your comments. I’m in California; are you a Texas gal? blessings, Robyn

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Robyn, Hi — I’m from the SE corner of Kansas — five miles from the Okla state line. I’m 76. I have no trouble with the clindamycin but did suffer a little from cipro and bacterim (and I didn’t think I got any help from bacterim). I take a large probiotic pill once daily when I’m on antibiotics. It has been good for me with clindamycin. I’ve not taken clinda for more than 2 weeks continuously…… and usually my symptoms are gone for about a month. Then, I go back to clinda for another 10 days-2weeks. I have had a small amount of MAC show up at Mayo’s but they decided it was not enough to treat it. It’s been two years since I was there and I probably need to do another culture to be sure it’s not worsening. I just think that surely — if it were — I would be more ill. My basic problem is horrible, horrible coughing with green phlegm until I can’t go to the store, restaurant or any public place. It’s constant and people would think I had whopping cough. My sputum tests (the 24 hour testing) has shown various bacterias. I’ve had MRSA —- MSSA …… and pseudomonas that I’m aware of. I continue to work with Dr. Moua at Mayo’s through the portal there and he’s wonderful to answer my questions or prescribe right away. I’m not saying clindamycin will work for you but it is the best I’ve found. I hope this helps explain from where I’m coming and I surely hope you will have good luck with it if you give it a try. I take 150 mg 4 times daily. Jan

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Thanks! What probiotic do you take? If I have to go back on antibiotics, I’ll ask about Clindamycin. I took it in 2001 when I was first treated for MAC and I was so sick with the medications, but don’t know which ones made me sick! I’ve been coughing up yellow sputum for a couple of years and diagnosed with asthma and COPD until my pulmonologist wised up and remembered the MAC. I have bronchiectasis from radiation in 1987 for breast cancer; that’s why I’m having problems now. Lots of lung infections and pneumonias. We traveled a lot, so I always came home sick. The MAC may be back, but we won’t treat it. Just try to keep the symptoms down. I felt really sick for 2 years, but am feeling better now. I’ve been referred to an infectious diseases doc so we’ll see what he says. By the way, I live in the Bay Area, have been here since college, although I was born in Southern California. A true native! My parents were from Oklahoma and Indiana.
Take care, and thanks again, Robyn

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I’ve used different probiotics and really never noticed any difference in the brands. The one I have currently came from either WalMart or Walgreens — not sure which. Brand is Renew Life and it’s 30 billion live cultures. At one time I continued probiotics after antibiotics just because I heard maybe everyone should be taking them, but I did get some diarrhea and when I told the doctor, he said to quit the probiotics — I did and it cleared up immediately. Sometimes I have diarrhea from the antibiotics — but not if I take the probiotics. It doesn’t always make sense to me but that’s how it works where I am. Hope this helps. Let me know. Jan

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@robynmar

I did not have a good experience with Cipro this time. Towards the end, lots of diarrhea, and throughout, I had great difficulty in sleeping. I was up for hours in the middle of the night; just couldn’t go to sleep. I’m still not sleeping well and feel really zonked. Never had that before. I’m not sure that Cipro helped that much; actually the Bactrim worked better on the 99.5 temps and no diarrhea. Just nausea, which, in retrospect, seems a better choice. The amount of sputum now is minimal, which I hope is good. I’m sounding better because I have a better idea of what is wrong. Before, there was no clear picture. I’ve actually had a few mornings when my head was clear, not fuzzy. I have my hands full here with a difficult husband who is terminal with cancer and relatives who are helpful but coming and going. I’m not sure what “improvement” would mean for me. Probably no temperature. The coughing never was a problem since I only cough up stuff once a day. In fact, it’s time for that now. Thanks for your caring, blessings, Robyn

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Wow, Robyn, you have had your hands full. I hope you have ways to alleviate the stress that must come with being a caregiver. Stress can bring on illness. Sending you cyber-hugs as our forum member, Linda, would say. – Terri M.

Liked by Carolyn

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@tdrell

Cld120 re no production of sputum for cultures….at NJH they -respiratory therapists- used a high degree of sodium solution for inhalation to irritate lungs to produce mucus.
At NJH…they collect 3 specimens over 3 days.
I am collecting them here at home in Wisconsin….first one had too much saliva so I had to repeat it…I was going for quantity….lab told me how to differentiate … I have the lung secretions when I awaken I have discovered.
I had a bronchoscopy a year ago….no problems!
Tdrell

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Carolyn, @cld120, The saline may be too weak for you. I am on 7% strength that I do twice daily. It seems to be working. You can ask to have a stronger solution. Every time I go to the Mayo and need to give a sputem sample, they induce me with the 10% saline because I cannot cough anything up either. There was a time when I could, but now that I am better, there isn’t much phlegm.

Liked by Carolyn

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@robynmar

Hi folks! I’m just finishing up my Cipro and had a surprise diarrhea attack this morning. Also, trouble sleeping. No mucus is coming up, which worries me. The sneaky low temps are fewer. I’m still waiting for a report from my Infectious Diseases doctor; I’ll nudge him when I am done with the Cipro. My guess is that my MAC is dormant and I have other more common bacteria which is causing the trouble. I’m feeling very fortunate. By the way, asthma was always the go-to diagnosis when the doc couldn’t think of anything else. Then COPD. That was before the discovery of the MAC and M. lentiflavum. Bronchiectasis was the first diagnosis and is the underlying condition of my lungs. We’re having a surprise humid hot summer here in the Bay Area. But the fog is due to arrive any day now. blessings, Robyn

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Robyn, I wonder if they still use tamoxifen any more?

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wait for it….

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Windwalker….never heard of the yeast!!! Might it be from mouth????? Keep us posted….always something! Tdrell

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@tdrell

Windwalker….never heard of the yeast!!! Might it be from mouth????? Keep us posted….always something! Tdrell

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It said it was “yeast-like” not actually a yeast. It is found in soil,bird droppings, on outside of tropical fruit, especially mangos and pineapples (which is why I wash everything!), hot tubs, steam rooms, and dishwashers!

Liked by tdrell

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