In shock after MAC diagnosis

Posted by sylvermoon8 @sylvermoon8, Sat, Aug 17 1:12pm

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!!

@auntnanny

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

Jump to this post

Absolutely….

REPLY
@auntnanny

janovr — thank you for your info

Jump to this post

We are all in this together!💕

REPLY
@fdixon63

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

Thanks.

Jump to this post

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.

REPLY
@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

Jump to this post

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

REPLY
@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

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

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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!

REPLY
@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.

REPLY

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!

REPLY

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!

REPLY
@catalin

Thought to share my experience with those who are treated with 3 antibiotics. Recently it has been confirmed that my vision loss was due to a year treatment of 3 antibiotics. The culprit was Ethambutol. My vision gets a bit improvement about two months after stopping the treatment. Good to know that the process seems reversible. During treatment I have been monitored by a ophthalmologist, the problem was discovered at ~11 month treatment. Please note that not everyone will have this problem, please discuss with your doctor about this issue.

Jump to this post

I am also on this regime. How did you notice your vision loss?

REPLY
@sylvermoon8

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!

Jump to this post

My pulmonologist and ID doc both recommend caution. Here's how i do it with their blessing. Long sleeves and legs, washable gloves and N95 mask. Avoid windy dusty days. Upon coming inside, remove and launder all clothing, shower and wash hair. Also, remember that whatever is in the yard and garden is in your house if shoes are worn inside. For many years, all in our home have replaced outdoor footwear with slippers when coming in. We wipe the dog's feet with a frequently washed towel.

REPLY
@vetnyregr

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!

Jump to this post

@vetnyregr I had 3 cavities in my lungs,they closed over after time on the big 3 and inhaled Amikacin. The big 3 are very restrictive, I have been on them around 5 years, I am about to go off in a few months, yay.

Liked by pfists, rits

REPLY
@heathert

@vetnyregr I had 3 cavities in my lungs,they closed over after time on the big 3 and inhaled Amikacin. The big 3 are very restrictive, I have been on them around 5 years, I am about to go off in a few months, yay.

Jump to this post

5 years!!!!!!!!! Did you ever take Amikacin infused? That is what I'm on besides Zithromycin, Ethambutol and Rifadin. I am prepared for a year and a half but 5, Oh MY! I know everyone is different. So glad your cavities closed on their own. I pray mine does the same!

REPLY

@vetnyregr My Dr said she wrongly put me on them daily for 2 years, it should have been daily for cavities, she had not told me I had cavities for 2 years or I could have corrected her. Yes its a very long time on the big 3 but only a year on Amikacin inhaled, no I haven't had infused at all. My cavities did close on their own but they left a small scar, which I guess would also happen with surgery. I hope yours take alot less time, and hope you are on daily! The big three and Amikacin is a good combination.

Liked by vetnyregr

REPLY
Please login or register to post a reply.