(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@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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My local ID doctor, who so far as not proven herself to be that knowledgeable, has told me that I am in the 1% category of patients on azithromycin who has tachycardia, insomnia, nervousness, and possibly some high blood pressure as side effects.  She further stated that the only drug to be used in lieu of azithromycin is clarithromycin but that also has the mentioned side effects in 1-10% of the patient population.  Anyone else have this problem or have knowledge about the absolute necessity of having either azithromycin or clarithromycin as part of the antibiotic cocktail?  Anybody’s cocktail not contain either of those two? Were other drugs substituted for azithromycin other than the clarithromycin?  Always can take anti-anxiety medication for the nervousness and tachycardia but really haven’t come up with any good plan to medicate the insomnia away or at least cause it to be more tolerable.  Words of advice would be greatly appreciated. Disheartening.  So great to be able to reach out. Thanks for the forum to vent.  It helps.Terry

REPLY
@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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My “kind” ID gal (will be leaving her as soon as I find a much more suitable replacement) added salt to the wound.  She called me and knowing that I have rare reaction to azithromycin, said that the only other drug that could be used in lieu of that was clarithromycin … then said “oh no but it has similar side effects”. This compelled me to write my last message about looking for others in the same predicament.  Got off the phone and was down and out, but then morphed into a female Ralph Kramden and wanted to send the ID gal on her own trip to the moon!  It is amazing how insensitive someone could be.  She had no problem leaving off that my option was between bad and worse (my interpretation of what her words translated to).  “To the moon, Alice!”Terry  “The Honeymooners” is still one of the greatest shows ever but then I date myself.

REPLY
@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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@128128terry11t, Terry, sorry you are going through this!

I can only speak for myself .. but I would do ZERO about changing meds UNTIL you get to a good Infectious Disease doctor who treats MAC! You need someone knowledgeable about MAC before you start fooling around with changes. I ALSO took various meds in addition to my antibiotics. I found a GOOD pharmacist and worked with HER (always find a smart female .. sorry!) and my IFD to work out a schedule that worked for me with my current meds PLUS the antibiotics. Some with/without empty stomach .. some hours away from vitamins etc.

In terms of sleep .. sorry but I have come to the conclusion it is partly age? But ALSO if you are taking Rifampin .. be SURE to take it first thing in the morning on an empty stomach. It is KNOWN for sleep disturbance.

SLEEP DISTURBANCE I can only speak for myself .. but I also have sleep disturbance .. and it has continued even after going off the antibiotics .. I am now “stable”. As I have posted I really don’t know if the continuation of sleep issues is the normal aging process .. or a result of being on the antibiotics .. doesn’t really matter .. I have sleep problems every night! So being an avid googler I read one place that it had been recommended to a woman from her Naturopathic Doctor that she use the brand name TwinLab Magnesium 400mg tabs nightly. I now use: a. ONE TwinLab Magnesium 400mg tab
https://smile.amazon.com/Twinlab-Magnesium-Caps-400mg-Capsules/dp/B003DIB8FC/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1484004326&sr=1-1&keywords=twinlabs%2Bmagnesium%2Bcaps&th=1
b. plus 1/2 tablet (tab no the gel) of Unisom .. an over the counter Sleep Aid tab (I purchase the generic brand blue one that I can bite in half) .. AND WOW! I am able to get to sleep plus get back to sleep when I frequently wake up at night! The TwinLab tabs have really helped me .. can’t say they would for you .. but do be aware they will result in looser stools! I no longer need to take Fibercon 2x per day!
PLEASE others jump in with any other thoughts! Hugs! Katherine

REPLY
@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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@pfists, I also have abscessus .. it is ‘ MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES’. It is one of the tougher mycobacteriums to deal with. I can only speak for myself but for this particular one my antibiotic treatment was:
* Azithromycin 250mg/Amikacin 2ML-inhaled/Avelox 400mg.

If I was sitting in your shoes with TWO sputum cultures positive for Mac abcsesses .. I would stay on this like a dog with a bone!! Get on the meds earlier rather than later. Questions I would be asking .. Is your Pulmonologist an Infectious Disease doctor and how many MAC patients have they treated in the past 12 months.

MAC abscessus is not anything to fool with .. you can see from my above treatment .. that is WHY I did an INALED/NEBULIZED Amikacin .. to knock out the MAC abscessus. Just my opinion .. good luck to you! Keep us posted! Hugs! Katherine

REPLY
@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

Jump to this post

Can you imagine that my primary would suggest such a thing!  Pardon my ignorance but what is an IFD?  I take a zillion meds and have been going on Drug interaction site and “trying” to figure out a schedule for myself.  Need professional help! “An IFD an IFD–my queendom for an IFD”!Terry

REPLY
@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

Jump to this post

@128128terry11t, Terry, you are TOO funny! However I have ALWAYS counseled my granddaughters to get to know a FEMALE pharmacist! Why? Because frankly doctors have had VERY LITTLE training in pharmacology .. PLUS there is almost zero chance they can keep up with all the new drugs/side effects! SO the ONLY one I depend on is my local highly trained female Pharmacist who is one smart cookie and will advise me on all potentials any time I call her! I wouldn’t THINK of depending on a doctor for up to date data on drugs! THAT my dear is why I preach on “due diligence” .. educating OURSELVES .. on options/tips/our disease .. all of it. It is OUR body .. WE have to take care of it and advocate for it .. nobody else is going to do it for us! So my dear .. you just “to the moon”! Hugs! Katherine

REPLY
@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

Jump to this post

@128128terry11t, Terry, need the context for IFD. How/where was it used. That may help us define it! Katherine

REPLY
@katemn

128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7,@josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S,@laneyk .. Elaine, @liliane .. Liliane, @lindam272 .. Linda, @lynnettehuler .. Lynn, @marier .. Marie, @margaretg .. Margaret, @mayoclinicseeker .. Pavitra , @maryjo2sell .. Maryjo, @melissa23 .. Melissa, @mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @pamelasc1 .. Pamela ,@reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, and anyone else I forgot to make note of!

HELP! Does anyone use a Mac computer? I use a Windows 10. So on my screen when I get an email .. at the bottom it says “View and Reply”. When I hit that it takes me to your post. I read your post. Below your post it says “Reply”. If I hit that .. it then takes me to a space where I can answer you.

OR below “Reply” it has two symbols:
1. a “heart” which if I hit .. you will receive an email that I “liked” your post.
2. a “flag” .. frankly I don’t have a clue what that is for! Never used it .. sorry!

QUESTION: On a Mac computer .. do you see a ..1. a “heart” which if I hit .. you will receive an email that I “liked” your post. per the above??

Not being familiar with the Mac computer I am at a loss for an answer .. please jump in if you know an answer to the question if the “heart” appears like in Windows .. OR if in a different manner! Thanks to all! Katherine

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Yes, I get the heart for “like” and the flag is for “report.” This means if something is inappropriate or questionable, you click on the flag and Colleen or another moderator will respond to the problem. That’s my understanding. I have Windows as well.

REPLY
@katemn

128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7,@josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S,@laneyk .. Elaine, @liliane .. Liliane, @lindam272 .. Linda, @lynnettehuler .. Lynn, @marier .. Marie, @margaretg .. Margaret, @mayoclinicseeker .. Pavitra , @maryjo2sell .. Maryjo, @melissa23 .. Melissa, @mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @pamelasc1 .. Pamela ,@reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, and anyone else I forgot to make note of!

HELP! Does anyone use a Mac computer? I use a Windows 10. So on my screen when I get an email .. at the bottom it says “View and Reply”. When I hit that it takes me to your post. I read your post. Below your post it says “Reply”. If I hit that .. it then takes me to a space where I can answer you.

OR below “Reply” it has two symbols:
1. a “heart” which if I hit .. you will receive an email that I “liked” your post.
2. a “flag” .. frankly I don’t have a clue what that is for! Never used it .. sorry!

QUESTION: On a Mac computer .. do you see a ..1. a “heart” which if I hit .. you will receive an email that I “liked” your post. per the above??

Not being familiar with the Mac computer I am at a loss for an answer .. please jump in if you know an answer to the question if the “heart” appears like in Windows .. OR if in a different manner! Thanks to all! Katherine

Jump to this post

@hopeful33250 .. Teresa, Thank you!! Luckily I have never needed to use the flag with my delightful group! Now I guess I am glad I DIDN’T know about it! Hugs to you! Katherine

REPLY
@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

Jump to this post

Terry
I have had all of these side effects! And I still do from time to time.

Azithromycin is the most commonly used along with the other 2 big 3. I had a susceptibility panel to tell me what my MAC would respond to and it was one of the few drugs that will work for me and maybe for you. This panel is done from a positive sputum culture or lavage of lung. Did you have that done.

My insomnia acts up only occasionally now. It took about 3-4 weeks on all 3 drugs and I think I got used to them and relaxed. A big part of this disease for me is keeping my anxiety at bay. It’s terrible some days.

Try to do things to calm yourself. Get a little exercise, do deep, diaphragm breathing, stay busy etc. I really think you’ll be fine! Hang with us,

Peace
Kay S

REPLY
@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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@128128terry11t, Terry, @kaystrand, Kay, what a great response! Thank you! I didn’t even think to ask: ‘I had a susceptibility panel to tell me what my MAC would respond to and it was one of the few drugs that will work for me and maybe for you. This panel is done from a positive sputum culture or lavage of lung. Did you have that done.’

That is SOOO important .. and I’ll bet you dollars to donuts Terry’s doctor did NOT do that .. especially with just throwing her on all 3 meds at once! Such good advice for Terry. Again, thank you! Hugs to you! Katherine

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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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Sorry to hear that you went through what I am going through but thank you so much for those encouraging words.  You have made my night!  I was beginning to think that I was some kind of freak when the ID gal told me only 1% get this reaction.  I couldn’t believe it … and now I don’t have to!  My pulmonologist told me that it was done and that is why I let the ID doctor put me on those meds before going to Denver (called Denver and they said could start something and they would tweak if need be).  It is all so confusing and overwhelming.  It’s your kind of response that grounds me.  Thank you.Terry

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