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How is everybody doing?

Posted by Terri Martin, Volunteer Mentor @windwalker, Aug 5, 2017

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.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 9, 2017
In reply to @tdrell "Windwalker....never heard of the yeast!!! Might it be from mouth????? Keep us posted....always something! Tdrell" + (show)
@tdrell

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

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You're right, it is always something!!

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tdrell | @tdrell | Aug 9, 2017
In reply to @tdrell "Windwalker....never heard of the yeast!!! Might it be from mouth????? Keep us posted....always something! Tdrell" + (show)
@tdrell

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

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windwalker.....and our vocabulary increases.....ugh.....and not only from fruits.....but dishwashers.....this might be another question for the hot waterheater temperature specialist....Dr Falkingham...what should dishwasher temperatures be set at.....or are they governed by the main hot water heater???.....
and was the sputum from a bronchoscopy or expectoration......l still wonder if it was from oral cavity not lungs
tdrell

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robynmar | @robynmar | Aug 9, 2017
In reply to @robynmar "Hi folks! I'm just finishing up my Cipro and had a surprise diarrhea attack this morning...." + (show)
@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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Yes. If your cancer is hormone receptive, this will block the enabling hormones. It doesn't work for everyone; it didn't work for my current husband's late wife. As far as I know, they are still using it, just not as long as I took it. Robyn

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tdrell | @tdrell | Aug 9, 2017
In reply to @robynmar "Hi folks! I'm just finishing up my Cipro and had a surprise diarrhea attack this morning...." + (show)
@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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windwalker....a chum just finished radiation for her breast cancer.....l recall her saying tamoxifen is still an option for appropriate folks.....and there are two other similar Meds...one of which she is on...tdrell

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Carolyn | @cld120 | Aug 9, 2017
In reply to @tdrell "Cld120 re no production of sputum for cultures....at NJH they -respiratory therapists- used a high degree..." + (show)
@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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Thank you so much, Terri @ windwalker!!
Very encouraging to hear!!

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tdrell | @tdrell | Aug 10, 2017
In reply to @robynmar "Hi folks! I'm just finishing up my Cipro and had a surprise diarrhea attack this morning...." + (show)
@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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Windwalker...I asked my chum who just had breast cancer...she said Tamoxofen is for pre menopausal women....she is pist menopausal et is on Letrozole...there is a 3rd she did not recall the name...tdrell

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 10, 2017
In reply to @robynmar "Hi folks! I'm just finishing up my Cipro and had a surprise diarrhea attack this morning...." + (show)
@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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That is good to know.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 10, 2017
In reply to @tdrell "Cld120 re no production of sputum for cultures....at NJH they -respiratory therapists- used a high degree..." + (show)
@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, don't forget, you can request a stronger solution of saline, like I said before, I am on the 7% strength. This saline treatment may not always make you cough up stuff, (mine doesn't), but, it does make the mucous thinner and less desirable climate for bacteria to grow on.

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Sumner | @sumner | Aug 10, 2017

I have just been diagnosed with MAC, after also treating pseudomonas with a round of Levaquin, which ended last week. I am about to start the antibiotic cocktail for MAC. I would like to hear how you all have paired probiotics with your antibiotics treatment. What kinds of probiotics have been helpful to you in staving off the gastrointestinal side effects of the Rx? And in what dosage for this power-antibiotic assault? Thanks for thoughts about your experiences.

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6 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 10, 2017
In reply to @sumner "I have just been diagnosed with MAC, after also treating pseudomonas with a round of Levaquin,..." + (show)
@sumner

I have just been diagnosed with MAC, after also treating pseudomonas with a round of Levaquin, which ended last week. I am about to start the antibiotic cocktail for MAC. I would like to hear how you all have paired probiotics with your antibiotics treatment. What kinds of probiotics have been helpful to you in staving off the gastrointestinal side effects of the Rx? And in what dosage for this power-antibiotic assault? Thanks for thoughts about your experiences.

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@sumner, hello and welcome! Do you have a first name? We'd like to know you better. You have come to the right place to get answers and support. We have many older posts to read back on if you want to take the time to read through them. I know that recent posts had comments about probiotics. The only thing I know about them is that 'Live' ones are supposed to be best. They need to be taken two hours away from any antibiotic as antibiotics will kill the probiotic. There are helpful hints about when to take the rifamkin to make it easier on your stomach. Everyone is different, you may have to play with the schedule to see what works for you. Below, you will find info you will need while being on the 'cocktail'.

TESTING-baseline and periodic 1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin - CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY

OR TESTING:
BASELINE: HEARING AND VISION (Vision: Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES
QUARTERLY: HEARING and VISION
NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

**** Lab tests:
CBC- Complete Blood Count (CBC)
ALT- Alanine Aminotransferase (ALT) LIVER
alk phosphatase- Alkaline Phosphatase - LIVER
serum creatinine-. Creatinine and Creatinine Clearance-SERUM CREATININE - KIDNEY

TESTING RECOMMENDED FOR VITAMIN LEVELS 1. Ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD) *From our member @tdrell Terri, my Primary Dr at NJH

We are here for you! - Terri M.

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