1. < MAC & Bronchiectasis

In shock after MAC diagnosis

Posted by sylvermoon8 @sylvermoon8, Aug 17, 2019

I was being followed for a lung problem for 2 years and finally was to have my last CT in June. But it showed pneumonia. I had had a bad cough a month before, they thought I had pneumonia but chest X-rays indicated no, so I wasn’t treated. So after the CT I had 7 days of an antibiotic. 6 weeks later my next CT showed it had gotten a bit worse and now they mentioned something called MAI. That was last Monday. Tuesday I am getting a bronchoscope and biopsy. I am scared. Especially now that I have read so much about this. I don’t have symptoms except maybe if I talk fast I feel like I had to stop and breath. I don’t know what I am in for. Gosh I am scared just about getting the bronchoscope. My doctor said I could have gotten this from gardening, I did a lot...have been doing it for years. This year we had a new mulch supplier...... I could use a pep talk, if anyone has that for this!!

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Jennifer | @megan123 | Sep 1, 2019
In reply to @auntnanny "Jennifer@megan123 Thanks so very much for your post. Would you be so kind as to follow..." + (show)
@auntnanny

Jennifer@megan123 Thanks so very much for your post. Would you be so kind as to follow up after your second opinion. Jan

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Absolutely....

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janovr | @janovr | Sep 1, 2019
In reply to @auntnanny "janovr -- thank you for your info" + (show)
@auntnanny

janovr -- thank you for your info

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We are all in this together!💕

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 2, 2019
In reply to @fdixon63 "I have heard of most all the antibiotics, but what is Toby? Is it a short..." + (show)
@fdixon63

I have heard of most all the antibiotics, but what is Toby? Is it a short for something?

Thanks.

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Fdixon63 'toby' is short for tobramycin, an inhaled antibiotic. That is what I am on as a maintenance drug to stay free of mac & pseudomonas.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 2, 2019
In reply to @auntnanny "sueinmn --- I read with much interest the fact that toby did not help you. I'm..." + (show)
@auntnanny

sueinmn --- I read with much interest the fact that toby did not help you. I'm half way through my 5th session of toby and I sometimes think I cough more than I did before I started it. Maybe not, but tremendous coughing and heavy green phlegm It does not seem to be helping me at all. I just did a sputum sample and sure enough -- pseudomonas as usual. I took Levaquin about a year ago --- and clindamycin prior to that. None of those have helped. I hate to be a constant complainer, but was interested in Colistin. I have the list of susceptibility results and they are aztreonam, celepime, cefazidime, ciprofloxacin, imipenem, levofloxacin, and piperacillin/tazoactam. Has anyone on this forum not been helped by toby -- and found any of the above meds to eradicate the pseudomonas. I would love to know what others have found. I need help (I'm with Rochester Mayo's and I've faxed my report to them so hopefully he'll try something else. I know Terri has used toby and another antibiotic on alternate months and I'm wondering if anyone else is on a program like hers. Thanks for all the info I can gather. Jan

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Jan, as you know, the toby and cipro is what did the trick for me. Toby one month and cipro on alternating months.

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auntnanny | @auntnanny | Sep 2, 2019
In reply to @megan123 "hi aunt nanny...I too have psedo...did sensitivites as well..I am using Colistin every other month to..." + (show)
@megan123

hi aunt nanny...I too have psedo...did sensitivites as well..I am using Colistin every other month to keep the psedo at bay...I’m not doing a drug in between, because these drugs cipro and levaquin have hard sideceffects...I’m going all also for a second opinion with our head of infectious disease..drs feel that for now this might be a better plan...I have Toby and Cayston as a back up...my drs say your chances r better not to develop s tolerance if u r doing drug every other month with nothing in between..better on your kidneys and liver..will see what second opinion dr says

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Jennifer --- thank you for the post -- please report back after your second opinion

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shoregal45 | @shoregal45 | Sep 2, 2019
In reply to @sylvermoon8 "Thank you for the additional information. I am scared of taking so many drugs at one..." + (show)
@sylvermoon8

Thank you for the additional information. I am scared of taking so many drugs at one time. But then again I was treated some years ago for persistent Lyme disease. I was on 2 antibiotics at a time but they were easy ones really. I wonder do those of you that get the 3 antibiotic treatment take probiotics? My Lyme disease specialist had me on 2 while being treated. I have not had an appointment with my pulmonologist since my last CT and was surprised she wanted a biopsy so quickly. However if it will confirm exactly what I have that is good. After that I will look for a specialist I am not sure how far I will have to travel. I am near Baltimore and Philadelphia, that should help.

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When I was treated for Lyme Disease in 1992 my doctor also told me to take probiotics along with the antibiotics which I was on for a year.

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sylvermoon8 | @sylvermoon8 | Sep 2, 2019
In reply to @windwalker "@sylvermoon8, I also have been an avid gardener for yrs. I am super careful now not..." + (show)
@windwalker

@sylvermoon8, I also have been an avid gardener for yrs. I am super careful now not to inhale soil particles, especially from potting soil. I have read that pseudomonas is commonly picked up by handling bush clippings. I now leave that up to my hubby.

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Thank you for telling me this. I was told no gardening, I figured it just meant no digging. I was going to go outside and trim bushes. Now I won’t!

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1 reply
sylvermoon8 | @sylvermoon8 | Sep 2, 2019
In reply to @megan123 "hi aunt nanny...I too have psedo...did sensitivites as well..I am using Colistin every other month to..." + (show)
@megan123

hi aunt nanny...I too have psedo...did sensitivites as well..I am using Colistin every other month to keep the psedo at bay...I’m not doing a drug in between, because these drugs cipro and levaquin have hard sideceffects...I’m going all also for a second opinion with our head of infectious disease..drs feel that for now this might be a better plan...I have Toby and Cayston as a back up...my drs say your chances r better not to develop s tolerance if u r doing drug every other month with nothing in between..better on your kidneys and liver..will see what second opinion dr says

Jump to this post

I just want to mention that I was prescribed 750 mg once/ a day of Levofloxacin. A pharmacist scared me and said he knew many people that can’t take this high dosage, I took it for 10 days with almost no side affects.... I had some trouble sleeping and my one problem shoulder ached a tiny bit sometimes.

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Kathi | @ihtak46 | Sep 3, 2019

Smoon,
With a bronchoscope you are put under mild sedation so dont worry. You may fall asleep; I did and didn't feel a thing. I pray the doctors find that you will be well soon and will give you proper meds. God bless. Im sending you good, healthy, healing vibes!

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vetnyregr | @vetnyregr | Sep 3, 2019

Has anyone had a hole in their lung due to MAC. I do. I was wondering at what point do they sew it up or? I am so tired of amocacin infusions and my 3 oral antibiotics. It is so restrictive!

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