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@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to “private message” .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said ‘The whole is greater than the sum of its parts.’ .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

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Replies to "@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you..."

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

@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

Terry, do you use nebulized albuterol by any chance? If so, that can cause
all of those symptoms you mentioned. If you are using that, there is an
alternative kind that does not cause those side effects. I am on that myself. It
is called Levalbuterol.
 

Amen!
 

I know of two good nebulized antibiotics that treat mac and other nasties.
They are Tobramycin and Colistlin. They are generally used to
treat those with cystic fibrosis because they catch all of the bad
“critters”. So far, the tobi is working for me.
 

Good question. I am going to ask my dr about that when I see him next. (in
June)
 

Hello. I am so glad you are getting treatment that works for you. You are
fortunate to have found a competent doctor. I have been battling lung
issues since I was 35 yrs old (am now 58). I went to local
pulmonolgists all of those yrs. Every time I would get a flare up of lung
infection; I would be put on a two week round of antibiotics and that was it. I
would become sick again, same routine. After 20 years of not knowing why I was
sicker than other people, I decided to go to a non-profit teaching institution
where I knew they would be interested in finding out why I was chronically sick.
Turns out, I have a genetic disorder that even the Mayo cannot figure out, but
they DID know to put me on alternating monthly prophylactic antibiotics. We are
not all standardized with ‘MAC’ or bronchiectasis, there sometimes are other
underlying diseases that are bringing these on. Sometimes it takes a highly
specialized doctor to figure it out. There are no competent pulmonologists where
I live now. I honestly don’t think I’d be alive if I had not gone down to the
Mayo.
 

@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

I am a carrier for the Alpha-1 gene. My mom died at age 58 from it. So many
carriers have serious lung issues and they don’t know what the connection is.
For right now, they say there is no connection, because they cannot prove it. I
believe there is because so many carriers seem to get MAC and
bronchiectasis.
 

Somebody commented about not needing to go to the ‘Big Box’ medical
institutions for good care. I go because I am a complicated case and my drs can
benefit by learning from my illness.