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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
Replies to "Hello Catherine - you surely are going through a lot right now. With mine and the..."
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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
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