C-diff and Mac lung disease

Welcome, @catherine83. I'm going to tag a few members like @sueinmn @becleartoday @poodledoc and @bluesplashgirl who may have some thoughts regarding dealing with MAC and c difficile.

Catherine, I know what it is like to be in shock and only to realize after you're no longer in the consult room all the questions you should've and could've asked. Are you able to contact your doctor for follow up questions?

Hi Catherine,

I am terribly sorry to hear about your intestinal issues in addition to the MAC!! I hope I can help a bit...

I know that many people take pre and probiotics for diarrhea. At National Jewish they often recommend Jarro-dolphilis, but I'm sure your doctor has a favorite. Also, many consume fermented foods like yogurt , kobucha and kefir.

You mentioned using an Air Physio. It is my understanding that that device cannot be boiled to sterilize it. I sterilize my devices so that in addition to MAC, I don't acquire any new bugs, but not everyone wants to deal with this chore.

Lastly, have you thought about using a LifeStraw pitcher or boiling your drinking water?

(Sorry, if I just gave you lots of additional drudgery. Dealing with this disease can be tedious at times, especially when we are exhausted.)

Best,
Linda

So sorry you are going through all this. As far as water issues, I bought a LifeStraw water bottle and filter replacements (Amazon) and use only bottled spring water for pills and drinking water. I had a cavitary lesion for over a year and stopped the 7% nebulizing and just do dry salt inhaler every day throughout the day and the areobika once a day and see my acupuncturist once a month. The cavity is now gone. Unconventional, sure, but that is what has worked for me. I wish you all the best and hope that you can have improvement soon.

Hello Catherine - you surely are going through a lot right now. With mine and the other replies, you are getting a lot to consider - please don't feel overwhelmed ... there is just much to consider.

I think that as far as the MAI vs C-diff and stopping the Big 3 antibiotics I can give you a little peace of mind. If you have to stop them for a while, it is not necessarily dire - MAI is a type of bacteria that is known to be "slow to grow and slow to go" so interruptions do not mean a big setback in treatment. It is important to deal with immediate threats like e coli and C diff quickly. Once those are cleared, and you have your digestion back to normal, it would be possible to resume the MAI treatment.

You may need to consider an alternate breathing device like Acapela or Aerobika that can be more fully sterilized to keep from reinfecting yourself with the non-MAI germs. Do you sterilize your nebulizer cup and mouthpiece at least weekly?

You mentioned getting e coli and MAI from your well - was the water specifically tested for MAI? It is not part of a routine well water safety test. Do you have a safe alternate source for your water now?

I hear you on the coughing and massive mucus production - it is one of the worst parts of MAC. Is the mucus clear or discolored? If clear, it is possible that the of 7% saline is too irritating, causing more mucus, and you need to back off to something less strong for a while.

Feeling weak and the diarrhea frequently come with MAI and the meds, but also with e coli & C diff, so you are getting really badly attacked. Getting that controlled, probably with antibiotics plus probiotics, should help you feel better.

Hang in there! The key is to be good and try to keep yourself hydrated and get some calories so you don't get weaker. Easy to digest food like apples, saltines, soft cheese, toast and jam can help. Also Pedialyte to replace valuable chemicals lost with diarrhea. Even Coca Cola can sometimes help. Some doctors order a few courses of IV fluids to help get you back up to normal.

Let me know what you learn from the doctor, it is hard to figure out "what next" when so many bad things seem to be going on at once. Do you have someoen to help you get what you need?

Sue

Good morning Thank you to everyone who took a moment to respond I truly appreciate it
and will take all opinions and more.

I will see my gp next week to see if it is C diff. I am hoping they have finally found the reason as to why I am so sick

I got e coli from contaminated water the MAI was diagnosed first they didn't know why I got it put it down to genetics amd immunity.

Our water system has been fixed UV filters etc I only shower in it now. I drink my water from bottled water and yes boil it also I'm afraid to take the risk. I do my sterilisation also from bottled water.

I must try the straw and have it in my amazon basket to purchase.

My sputum is brown/green it changes on days. I must ask about the 7% as I'm currently taking 9% once a day I also take ipramol 0.5mg neb when I feel to conjested

I take inhalers also. Ventilin for Asthma and Trelegy for copd but find I don't take the last one.

I have a cavity on my right lung and on the last appointment with consultant I was told there was signs of improvement.

When asked him why I'm feeling so bad he taught it was just the MAC and the side effects to the pills and all he could say was he sees signs of improvement

Another doctor told me if I had C diff I would be in a morgue I 100% believed my feeling sick was down to ecoli I do not believe its the meds as I had symptoms of explosive diarrhea before any diagnosis of MAC

I went back to the same doctor as another isn't available and my own personal GP has retired I show him my stomach how huge it had got told him I really don't feel good I cannot walk 5 steps he finally says It looks like you have C diff. Everything went blank I could not believe he had said the previous month I would be in a morgue to now believing I have it. I recall him saying you'll have to come off antibiotics if you have. I didn't stay much longer and left. I have dropped samples in now waiting for results. I am not even sure how long this takes. I'm still taking all medication until tests are back but no lay up on symptoms I feel so horrible. I don't have much trust in the health service especially after all of this.

Most will probably say take yourself to hospital but with all my bugs I'm afraid to go with the covid I'd be afraid it will get me.

I have got vaccinated and trying my best to eat healthy if I can eat at all these days I'm drinking tea which I believe is keeping me hydrated as ill as I am I still can drink tea on a sick stomach I'm strange like that, my family didn't have much so when we were sick my mum would give us a cup of tea and I've lived by my tea to this day,

Apologies for the full on rant here I'm just so confused and out of sorts.

Thank you so kindly it makes me feel good that there is a positive road ahead of me and that I can possibly go back on meds if its C diff at all. I will keep you all updated

Hope everyone else is feeling good

X

Good day everyone hope all are keeping as well as can be.

I rang doctors my stool sample came back clear . I am very confused now as I handed two watery stools samples into him and he says there clear I don't understand how this can be

I have booked another appointment with another doctor next Thursday and will speak more about it

I am also deciding now after almost one year of taking the big 3 that I'm not going to take them anymore. I decided to give my body a break over the last few days of the daily dose and have found symptoms have eased a good bit I've only used the toilet once a day rather that 10 times a day no icky tummy either and tiredness is leaving a little bit too.

Has anyone else opted out of taking the big 3 daily or 3 times per week?

How is it going for you are you taking alternative remedies that I could look into?

I cannot be sick anymore it's too much for me I can live with the chesty cough as I have for so long I cannot live with the constant diarrhea and feeling sick and unfortunately for me communication with my GPs are a no no as they tell me their sorry they do not know of my illness and keep referring me back to the consultant who I see every 3 months. When I tried to speak to the consultant secretary I was referred back to my GP so I feel like I'm in a world of my own right now and if I feel better without the medication then it's best to stop them for me.

Apologies if I annoy those who may disagree with my way of song this I can't see any other alternative right now