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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

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:
– Document Title Example:  Mayo Clinic Connect MAI/MAC Information
– 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
– 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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 6, 2016
In reply to @kaystrand "Heather Yes, I think we can be supportive to each other. I'm under. Kay Strand. Eden..." + (show)
@kaystrand

Heather
Yes, I think we can be supportive to each other.

I’m under. Kay Strand. Eden Praire Minnesota. Let me know if that works. Just friend me. That will be fun to see each other away from the stupid MAC.

I feel much better tonight. Took the start of azithromycin tonight and my Ethanutol – I think it’s the Rifamtin that kicks my butt, but hope nor for long. Mayo has you build up to full dose, I would have been in really bad shape I think. The doc emailed me that it will take a few weeks for my body to adjust to all the meds. This morning I felt awful. 2 hours sleep, shaky and nauseated. I didn’t eat much but I think I’m back on the horse. There will be bad days I need to get through. My poor partner Jeff, I feel like I’m wearing him out. It’s so good I have you and one other similar woman to talk to. It really helps!

I have 1 cavity in upper right lung, they are aggressive with that area. I had pneumonia last Dec and they gave me a cat scan for a spot in my xray. When it was still there in June I had a bronchoscopy and lavage and they found MAC. They did test for tons of fungus, all negative for all except MAC. What a shocker to get a weird disease, some days I’m still down, but my life is good otherwise so I’m going to really work to get past this with whatever the Mayo wants to do.

Anyway, we watched a bit of Olympics and a movie and I’m going to try to do Pilates tomorrow. Playing it by ear.

Enjoy your evening and I’ll watch for you to Facebook me. Take care, we can help each other which is good!!

Kay

Jump to this post

Kay, when you respond to a message by email, it is posted to the forum and to all members. This is the strength of community – sharing knowledge of many. You can also click view to see all the messages.

REPLY
Katherine, Alumni Mentor | @katemn | Aug 6, 2016

Hello Jill, you are so correct! As you know I am big on “due diligence” and since so many doctors are not knowledgeable on drugs .. they do NOT go to pharmacy school remember! That pharmacy labels are not always complete etc .. I did a LOT of reading on all my meds .. and one of the things I read said:

Absorption of rifampin is reduced by about 30% when the drug is ingested with food. . So good for you that you are being careful. Each of our bodies are different .. but do read the posts and do what works for you! Hugs to all! Katherine

REPLY
13 replies
Katherine, Alumni Mentor | @katemn | Aug 6, 2016
In reply to @katemn "Hello Kay, I went back on my notes on Rifampin .. this is what I found:..." + (show)
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

Hello Kay S, so glad you are finding it helpful! I also found ginger capsules found online or many stores helpful. I also used ginger capsules before taking grandkids to the local amusement park with all it’s crazy rides!

In terms of notes .. I have Word program on my computer and have saved all my notes there under “Health-Lungs-Antibiotic Notes” .. it has really helped as I have wanted to go back for reference .. or to cut and paste to help others! Sending you a Big Hug Kay! Katherine

REPLY
mimi68 | @mimi68 | Aug 6, 2016

I also am keeping all of these messages about how and when to take the meds. It will be helpful for when the doc starts me on my regimin, which should be soon.

REPLY
boomerexpert | @boomerexpert | Aug 6, 2016
In reply to @blc "I found this discussion while researching side effects for the meds prescribed for MAC, and possible..." + (show)
@blc

I found this discussion while researching side effects for the meds prescribed for MAC, and possible ways to tolerate them.
I was diagnosed in March 2013 after suffering with a cough for approximately 18 months. When I started coughing up a little blood occasionally, I went to my GP and he sent me across the hall to a pulmonologist. After several CT scans and blood tests and finally a bronchoscopy he determined it was MAC. I started the meds about 3 weeks ago and am very uncomfortable the 3 days a week I take them. I had to stop taking the clarithromycin because it made me break out in a rash. I can’t imagine taking these meds for the next year or more!! I’m sensitive to most meds anyway, and this prescription makes me feel worse than the cough. Has anyone really gotten used to the side effects? Normally I’m a very healthy 56 yr old woman, vegetarian, work out 3-4 times a week and eat a lot of fruits, veggies and yogurt. Any suggestions on how to cope with the side effects is appreciated. *B

Jump to this post

Does anyone else have difficulty taking the pills due to their size?

REPLY
flor | @flor | Aug 7, 2016
In reply to @kaystrand "Heather Yes, I think we can be supportive to each other. I'm under. Kay Strand. Eden..." + (show)
@kaystrand

Heather
Yes, I think we can be supportive to each other.

I’m under. Kay Strand. Eden Praire Minnesota. Let me know if that works. Just friend me. That will be fun to see each other away from the stupid MAC.

I feel much better tonight. Took the start of azithromycin tonight and my Ethanutol – I think it’s the Rifamtin that kicks my butt, but hope nor for long. Mayo has you build up to full dose, I would have been in really bad shape I think. The doc emailed me that it will take a few weeks for my body to adjust to all the meds. This morning I felt awful. 2 hours sleep, shaky and nauseated. I didn’t eat much but I think I’m back on the horse. There will be bad days I need to get through. My poor partner Jeff, I feel like I’m wearing him out. It’s so good I have you and one other similar woman to talk to. It really helps!

I have 1 cavity in upper right lung, they are aggressive with that area. I had pneumonia last Dec and they gave me a cat scan for a spot in my xray. When it was still there in June I had a bronchoscopy and lavage and they found MAC. They did test for tons of fungus, all negative for all except MAC. What a shocker to get a weird disease, some days I’m still down, but my life is good otherwise so I’m going to really work to get past this with whatever the Mayo wants to do.

Anyway, we watched a bit of Olympics and a movie and I’m going to try to do Pilates tomorrow. Playing it by ear.

Enjoy your evening and I’ll watch for you to Facebook me. Take care, we can help each other which is good!!

Kay

Jump to this post

COLLENN, I AM CONECTING YOU JUST TO UPDATE MY SONS PROBLEM HE WENT WITH HIA
PRIMARY DR. IN PORTLAND OREGON AND HE AND AN UROLOGIST DECIDED FOR HIM TO
WAIT 4 WEEKS TO HAVE HIS PSA. WE ARE VERY WORRIED

REPLY
cila | @cila | Aug 7, 2016
In reply to @katemn "Hello Kay, I went back on my notes on Rifampin .. this is what I found:..." + (show)
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

Hi Catherine, I got my lab work last week my vitamin A vitamin B1 are little bit low. The vitamin D is very low and my primary Dr. put me on vitamin D3 10000 IU.  My stomach is cramping all the time. Did you or anyone had this problem?  Still having problem sleeping.  I’m trying to organized my meds when to take them also the probiotic.  It says take it in between meals or empty stomach. I will try to do them early b/c I have to take my acid reflux med on empty stomach.  Thanks for all your help and I’m so grateful on this forum.

REPLY
Katherine, Alumni Mentor | @katemn | Aug 7, 2016
In reply to @katemn "Hello Kay, I went back on my notes on Rifampin .. this is what I found:..." + (show)
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

Hello Cila, so sorry this is happening to you .. what a rip! Yes, I do take extra vitamins. I love the phrase “Americans have the most expensive urine in the world!” My attitude is that if my body does not need the additional supplements .. then my body will excrete them in my urine .. BUT I am careful NOT to take more than the recommended for fat soluble like Vitamin A and E etc.

I do take extra Vitamin D3 and A Super B100. For the Vitamin A I would check with your Doctor since it is stored in the fat. I am a great one for googling .. I just did on the cramping .. it came up as: Vitamin D overdose or deficiency might cause stomach cramps.

Why don’t you IMMEDIATELY ask your doctor to lower the dose?! I take 3,000 VD3 without any issues whatsoever .. it may take you a bit longer to get your VD3 to where you need to .. BUT with side effects! Call your Doctor! Frankly sometimes I think they don’t THINK!! We need to be our best advocates .. but don’t tell him/her I told you that! .. And don’t forget with acid reflux to raise the head of your bed 4-5″ .. I’ve given a resource elsewhere on the Forum .. and not to eat prior to bedtime. Sending you a Hug! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Aug 8, 2016
In reply to @katemn "Hello Kay, I went back on my notes on Rifampin .. this is what I found:..." + (show)
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

Kay S, sorry to not answer sooner .. your message went to my Spam area.

Absolutely, Rifampin did affect my sleep so I took it in the am. Have you tried my ginger capsules idea for nausea? You can get them online or many stores. In terms of stress .. have you tried meditation. Even if you have never done it .. just google it .. YouTube it .. cell phone apps .. you can pick up some great ideas on how to breathe and how to meditate .. do give it a try.

Kay, I so feel for you .. the beginning part is so tough .. it does get easier but so hard in the beginning. I just wish I was there and could give you a hug .. but I am sending you lots of positive energy to help get you through this tough time! Katherine

REPLY
Kay Strand | @kaystrand | Aug 8, 2016
In reply to @katemn "Hello Kay, I went back on my notes on Rifampin .. this is what I found:..." + (show)
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

Katherine
I did get both ginger capsules and ginger chews. Also boiled ginger to make tea! I was so nauseated yesterday, not sure if anything helped or not. I’ve done Mediation for many years. All my things like that and walking and reading were not working well yesterday. This morning I followed this flower app I have that opens and closes. Long breath in and out. Yes it helps, but good reminder. There are times of intense pain or emotion where I need it most, that is the difficult time to do it.
But today I am a bit better. Amen. It’s been 1 week, but I did a gradual build and the final few days were rough. Patience – I need to remember there is a lot of adjusting my body is doing to some pretty strong drugs!

Katherine, hearing you say the beginning part is tough really helps. I know you did this! Thanks so very much.
Kay S

REPLY
Katherine, Alumni Mentor | @katemn | Aug 8, 2016
In reply to @katemn "Hello Kay, I went back on my notes on Rifampin .. this is what I found:..." + (show)
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

Kay S, I am so proud of you .. such GOOD self care! You are just doing EVERYTHING you can think of to take good care of yourself! That flower app sound SO interesting .. I think I am going to look into that for when my husband is driving me crazy! Just keep putting one foot in front of the other .. WOW I’ll be darned .. you actually do get to the end of the journey! Just keep on .. keeping on! Sending you a hug! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Aug 8, 2016
In reply to @katemn "Hello Kay, I went back on my notes on Rifampin .. this is what I found:..." + (show)
@katemn

Hello Kay, I went back on my notes on Rifampin .. this is what I found:
Ripampin Take this medicine on an empty stomach, either 1 hour before or 2 hours after food with a full glass of water. Absorption of rifampin is reduced by about 30% when the drug is ingested with food. Also 4 hour before vitamins Since I had the side effect of odd feelings in legs at night .. I tried to take it as early in the a.m. as possible. (RIFAMPIN CAN INTERFER WITH LIVER ABSORBSON OF SYNTHROID)

These things may be unique to me since I take Synthroid for thyroid issues .. take quite a few vitamins since I think our food is not as great as it was 50 years ago .. soil and farming methods etc..

Another note I found that I thought was interesting was:
Also a note I made re: using ginger supplements for nausea: Ginger – scientists at the Rochester University Medical Center found that taking ginger supplements with standard anti-vomiting drugs beforehand can reduce the nausea that often accompanies chemotherapy treatment by 40%.

Truthfully I still have an issue with sleep. I am NOT recommending it .. but I bite in half a blue tablet of Unisom (I get the generic one) and that amount seems to just enough to get me to sleep. I have a daughter who can close her eyes and she is conked out .. but that is NOT me!

Hope any of the above helps you! Sending you a hug and lots of positive energy! Katherine

Jump to this post

Kay S, just looked for that flower app .. couldn’t find one .. would you mind letting me know the name of it? I have android but usually can get the same app in android or Apple. Thanks! Katherine

REPLY
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