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MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Replies to "@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you..."
@pfists .. Shari That is just great! Would you ALSO pass by him the NAC .. that would give our Group ... TWO different options since each of our bodies react differently! Hugs! Katherine
@128128terry11t, Terry, Mystery SOLVED!! And guess who was smart enough to solve it? Colleen! Thank you Colleen!
Your post:
Can't seem to find the post now. It was said in the context of getting an IFD to help her arrive at an appropriate schedule of when to take antibiotics relative to other meds and multivitamins. Love to connect with one!Terry
Ooooop the guilty party was ME!! I must have been typing too fast! Didn't have a clue it was me! It was part of one of my posts to you! I typed too quickly! Should have been ID doctor .. Infectious Disease Doctor!! So sorry for the confusion .. that I myself caused!
Hugs to all! Katherine
What a special ID doctor to take the time to do that. This is a good business for someone who is knowledgeable about drugs. They would make a fortunate. Just imagine googling drug interaction and noting that a person works with you individually to make sure that your meds are not interacting poorly with one another and how best to take them. I'd sign up! Thanks for clearing up this mystery.Terry
<br><br><br><br><br>Terry, do you use nebulized albuterol by any chance? If so, that can cause <br>all of those symptoms you mentioned. If you are using that, there is an <br>alternative kind that does not cause those side effects. I am on that myself. It <br>is called Levalbuterol.<br> <br><br>
<br><br><br><br><br>Amen!<br> <br><br>
<br><br><br><br><br>I know of two good nebulized antibiotics that treat mac and other nasties. <br>They are Tobramycin and Colistlin. They are generally used to <br>treat those with cystic fibrosis because they catch all of the bad <br>"critters". So far, the tobi is working for me.<br> <br><br>
<br><br><br><br><br>Good question. I am going to ask my dr about that when I see him next. (in <br>June)<br> <br><br>
<br><br><br><br><br>Hello. I am so glad you are getting treatment that works for you. You are <br>fortunate to have found a competent doctor. I have been battling lung <br>issues since I was 35 yrs old (am now 58). I went to local <br>pulmonolgists all of those yrs. Every time I would get a flare up of lung <br>infection; I would be put on a two week round of antibiotics and that was it. I <br>would become sick again, same routine. After 20 years of not knowing why I was <br>sicker than other people, I decided to go to a non-profit teaching institution <br>where I knew they would be interested in finding out why I was chronically sick. <br>Turns out, I have a genetic disorder that even the Mayo cannot figure out, but <br>they DID know to put me on alternating monthly prophylactic antibiotics. We are <br>not all standardized with 'MAC' or bronchiectasis, there sometimes are other <br>underlying diseases that are bringing these on. Sometimes it takes a highly <br>specialized doctor to figure it out. There are no competent pulmonologists where <br>I live now. I honestly don't think I'd be alive if I had not gone down to the <br>Mayo.<br> <br><br>
@windwalker, Terri, that you have a genetic reaon is so interesting! I have mentioned before that I showed Dr. Aksamit a report from 23andme my what doctors refer to as a 'spit test' .. that showed I had a genetic predisposition to lung issues .. he did NOT laugh at me .. in fact was interested . and asked if he could keep the copy of the report. INDEED I am convinced someday they will find genetic connections between MAC and many other diseases!
Thanks heavens you came to Mayo .. 'mecca' to many in the world! Hugs! Katherine
Katherine
I will make a copy and ask him about the serrapeptaze. Sounds great and would like to try also if he approves.
I arm currently using NAC
N acytal cysteine 1000 mg, which I have run by my Dr and he approved of.
It loosens phlem also and I can tell the improvement in myself.
Shari