MAC Reboot - After 3 Years Post Meds

Posted by BlueSplashGirl/ Carolyn @bluesplashgirl, Nov 24, 2019

Hello Group, I am glad I found you. Well, here I am again… with a reboot of MAC. Just finished my sputum tests on Monday and they called me Thursday! The CT scan was pretty evident and the sputum confirmed that it is back. After 3 years off the meds. Disappointing and (secretly) scary. However, I find a lot of comfort in knowing that it isn’t lung cancer. I smoked for about 30+ years and I have always had my lungs checked since I quit 15 years ago. That’s how we found it the first time. Anyway, like most of you have already experienced, the medication was so difficult. 18 months and I stayed faithful to taking it. I had come across another website chat group when I was contemplating go off the meds early because I just couldn’t take it anymore. Several people were discussing doing the same. I am so thankful that some of the members stressed not to go off the meds and to stick it out until the end. One member went off near the end of her time and it came back quickly. After I read that I was determined to go all the way to the finish line. And I did. I think I know why it came back and going forward I will be more careful in the environments I find myself in (I am an equestrian and spend a great deal of time in dusty, dirty barns – not always wearing a mask.) Anyway, I just wanted to say hello and give my words of encouragement to anyone who is struggling and to say thank you for all the wonderful tips and kindness you show every day. We can get through this and like I always like to say: Team work makes the dream work!

@thumperguy

Teri, Do you do anything explicitly to counteract the negative impact of antibiotics on your gut microbiota?

Jump to this post

@thumperguy, No, I am not good about putting probiotic flora back into my gut. I sometimes do it with Kefir milk. I do not have any symptoms or problems with my stomach at all. I guess that is why I do not do it as often as I should. I love sauerkraut, so I may make a batch or buy some. That's what is so good about checking in on this site often; we get reminders to take better care of ourselves.

REPLY
@gj53

Terri, Hello and Happy Thanksgiving! I am new to MAC and this forum and the information has helped tremendously. I just recently received my diagnosis but am presently on no meds. I feel I am doing pretty well. I just received a percussion vest and nebulize twice daily. I have a complication of colitis so am very nervous about taking any antibiotics. I have a follow up appointment with my pulmonologist this Monday and have many questions after seeing all the precautions that everyone takes. My doctor did not cover anything like the gardening, hot tubs etc. It seems logical to me that this is a disease that could easily reoccur since as you said the circumstance to get it has not changed. Your information is always helpful. THank you for that.

Jump to this post

@gj53, Hi there! I am finally over my turkey coma. I hope you had a good Thanksgiving. We spent ours with friends as we have no family in the area. I am not surprised that your dr didn't give you precautions to take with this infection. (do you also have bronchiectasis?) None of my drs ever did, including my wonderful doc at Mayo. They usually just diagnose and treat. That is why this site is so vital to us. I am surprised that you were put on a percussion vest as you are not ill enough to be on a treatment plan. Did they do that as a preventative measure? Will you report back to me after your appt on Monday? I hope that visit goes well for you.

REPLY
@windwalker

@thumperguy, No, I am not good about putting probiotic flora back into my gut. I sometimes do it with Kefir milk. I do not have any symptoms or problems with my stomach at all. I guess that is why I do not do it as often as I should. I love sauerkraut, so I may make a batch or buy some. That's what is so good about checking in on this site often; we get reminders to take better care of ourselves.

Jump to this post

Hi Teri – My nutritionist niece recommends homemade or like-homemade from a specialty grocery or meat market because many of the cans and jars in the supermarket are pasteurized and a lot of the fermentation bacteria are killed by the temperature. Besides the fresh stuff tastes a lot better…

REPLY
@sam33

I have not, but I plan to do some research! I’ll post what I find.

Jump to this post

Feed those microbes lots of dietary fiber from fruits and vegetables and they’ll treat ya right.

REPLY
@sam33

I, too, have done the horse thing my whole life. Oddly, practicing as a vet really ate in to the time for that. Now this…I’m at the beginning of the journey and will be finding out after scan New Year’s Eve if any of the alternative stuff I’m doing helps. If so, I’ll be shouting to the rooftops, so you will know. Yes, horses are a glimpse of heaven…

Jump to this post

Hello Sam33, Small or large animal vet? Yes, that job is an all or nothing it seems and I have mad respect for all of you. My horse, the one in the picture above died last January. He was recovering from an olecranon green stick fracture. He did so great! I had been rehabing him and was set to turn him out and he coliced so bad this time that euthanasia was the only right thing. Devastating. Still is. Do you see a Naturopath for your alt treatment? Please, keep us posted after you get your scans. I would love to hear how you are doing. Take care! Carolyn

REPLY
@sam33

I, too, have done the horse thing my whole life. Oddly, practicing as a vet really ate in to the time for that. Now this…I’m at the beginning of the journey and will be finding out after scan New Year’s Eve if any of the alternative stuff I’m doing helps. If so, I’ll be shouting to the rooftops, so you will know. Yes, horses are a glimpse of heaven…

Jump to this post

I sent you a post sam33 and now I don’t see it… let me know if you didn’t get it and will resend. Thank you! Carolyn

REPLY

Everybody hang in there! We can do this! Thanks for all your information, concern, comments and care.

REPLY
@bluesplashgirl

Hello Sam33, Small or large animal vet? Yes, that job is an all or nothing it seems and I have mad respect for all of you. My horse, the one in the picture above died last January. He was recovering from an olecranon green stick fracture. He did so great! I had been rehabing him and was set to turn him out and he coliced so bad this time that euthanasia was the only right thing. Devastating. Still is. Do you see a Naturopath for your alt treatment? Please, keep us posted after you get your scans. I would love to hear how you are doing. Take care! Carolyn

Jump to this post

Hi Carolyn! I was primarily small animal but since I’ve always had horses, I have worked on them as well as exotics. I hate that about your horse. They are so fragile to be so big and strong. I’m not seeing a naturopath, as they are few and far between in mississippi, but have enough interest and knowledge regarding animals that I can extrapolate. I’m a problem based learning graduate as well, so prone to self evaluation etc. I do a lot of research. Nutrition is huge, and since I’ve been taking the kyolic garlic, my gut health has improved and food sensitivities have decreased. So it can’t hurt! I will certainly report the good and the bad, and am so thankful for you and the others that want to discuss health and passions. It’s a good tribe to be part of I think. 🙂
Sandy

REPLY
@bluesplashgirl

Hello Sam33, Small or large animal vet? Yes, that job is an all or nothing it seems and I have mad respect for all of you. My horse, the one in the picture above died last January. He was recovering from an olecranon green stick fracture. He did so great! I had been rehabing him and was set to turn him out and he coliced so bad this time that euthanasia was the only right thing. Devastating. Still is. Do you see a Naturopath for your alt treatment? Please, keep us posted after you get your scans. I would love to hear how you are doing. Take care! Carolyn

Jump to this post

@bluesplashgirl Awe, Carolyn, I am so sorry about your horse.

REPLY
@windwalker

@bluesplashgirl Awe, Carolyn, I am so sorry about your horse.

Jump to this post

Oh, Terri, thank you so much for that. It is much appreciated.

REPLY
@windwalker

@bluesplashgirl Hi Carolyn. So glad that you found our group; we really do help each other get through this disease. I am sorry to hear that your mac has returned. It is common for mac to return because the reason you got it in the first place hasn't changed. Most of the time the reason is having bronchiectasis, low immune system, immunodeficiency, CF, etc. Mac is usually a secondary condition brought on by a chronic primary condition. If you click on my picture icon,; my maintenance drug regimen should come up for you to read. Right now, I am on alternating monthly meds of tobramycin and ciprofloxacin. I have been on these since 2016. I know that if I go off of them for a length of time, mac or pseudomonas will probably come back. I have been doing very well in the last three yrs. My weight came back, energy improved mostly, no more coughing, and my appetite has been back. I live a lot more carefully now too. I do not get into pools or hot tubs, stay out of the stores in the winter for the most part, wash my hands a lot, avoid sick people, and I do not work in the garden soil anymore. Thank you for sharing your photo with your horse. Did you know that horses can get mac also?

Jump to this post

Hi Terri, I have COPD and also have scarring in my lungs. I am still waiting to see my infectious disease doctor (it’s the end of year craziness with trying to get an appointment). I will talk to her about maintenance after I am finished with the antibiotics in 18 months. I really never thought I would be back in this place again. I am fairly certain I got MAC from the horse barn that I was boarding at. Super dirty, dusty and moldy! I also had aspergillus pneumonia (still waiting to see if I have that back, too) and one of the horse had an “infection” in it’s eye they couldn’t get rid of until they finally diagnosed it as aspergillus! So, now that Dylan is gone and I have stopped riding I am hoping that after my next round of drugs and lots of precautions with gardening, etc. it will stay gone! Thanks for all your great information. What a relief to have this group. I hope you are well and happy. Carolyn

REPLY
@bluesplashgirl

Hi Terri, I have COPD and also have scarring in my lungs. I am still waiting to see my infectious disease doctor (it’s the end of year craziness with trying to get an appointment). I will talk to her about maintenance after I am finished with the antibiotics in 18 months. I really never thought I would be back in this place again. I am fairly certain I got MAC from the horse barn that I was boarding at. Super dirty, dusty and moldy! I also had aspergillus pneumonia (still waiting to see if I have that back, too) and one of the horse had an “infection” in it’s eye they couldn’t get rid of until they finally diagnosed it as aspergillus! So, now that Dylan is gone and I have stopped riding I am hoping that after my next round of drugs and lots of precautions with gardening, etc. it will stay gone! Thanks for all your great information. What a relief to have this group. I hope you are well and happy. Carolyn

Jump to this post

@bluesplashgirl, Hi Carolyn. Yeah, I have COPD and scarring too; along with bronchiectasis, and mild pulmonary hypertension, and SVT of my heart. Oh yeah, and I am an Alpha-1 Carrier. I have been reading almost non-stop about mac and lung diseases since 2007. I did come across articles about horses and chickens being associated with infectious diseases. Like you said, stables can be dusty and moldy. In the case of chickens; their coops can really be nasty. Many bird and chicken keepers tend to catch lung diseases. I have a feeling it may be due to the very fine feather/queill scales that they slough off and get inhaled. Also when their droppings turn into dust form and get inhaled. How long have you known about your COPD? Do you currently have many COPD symptoms?

REPLY
Please sign in or register to post a reply.