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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Hello, Kate
What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....
Thank you, Kathy
Replies to "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..."
Joann,
I had them done and they were high.
Cindy
Jkiemen or anyone else....is there a way to get water tested for NTM? Tdrell
I am sorry to tell you this Cindy, but my doctor at Vanderbilt was adamant about NOT doing that. That is how resistance happens. I am not trying to sway you one way or another - just giving you information that was given to me by a highly respected ID doctor and transplant surgeon.
I left a message with a person that I was directed to at the CDC asking about testing water samples. Will let you know what I find out.
Cindy, I am assuming you are replying directly from your e-mail in box. (I did the same too until I learned recently how to do it properly) You can ask Colleen for the technical help if you cannot get it figured out. You have to be 'LOGGED IN' to our forum and you check the box that says 'STAY SIGNED IN' if all else fails, you can click on the 'SHOW IMAGES AND ENABLE' message that is highlighted in blue at the top of your e-mail message and then go down to the button on the bottom left side of the Connect message from another member that says 'REPLY AND POST'. by doing that, it connects your reply to the person you are talking to. Otherwise, your message floats out there unattached to the conversation you are trying to be a part of. If you still don't get it straight and need more help, we can ask Colleen.
Cindy, I told you wrong. The button at the bottom left of a post is 'VIEW AND REPLY'.
I was treated the same Cindy, on my first MAC infection back in 2005. It stayed dormant until 2013, then I was treated by alternating months of Cipro for 10 days one month and then the following month 10 days on Doxycycline. That cycle went on for another three yrs as a preventative measure to keep the MAC from colonizing. I did get 'pseudomonas' last Spring. It is another lovely bacteria that likes to attack weakened lungs. I did ask my Dr why he chose not to treat me with the BIG THREE antibiotics; he said he does not believe in it as a first line of defense. He saves that for chronic cases (repeat offenders) and the seriously infected. Doctors have different theories on how to treat MAC. It is only in recent times that this disease got much attention. Plus, the treatment is not a one size fits all kind of thing.
Windwalker.....thanks!!! Tdrell
He said that the Mycobacterium Intracellulare type is generally from Soil
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Terri,
I need help knowing how to log into the forum. Right now I only know how to reply to other's posts.
Thanks.
Cindy