1. < MAC & Bronchiectasis

I was diagnosed with MAC in May 2015.

Posted by pamelasc @pamelasc1, Feb 25, 2016

Hello - I have just joined the group - I was diagnosed with MAC in May 2015. I began the treatment of the 3 antibiotics 3 times a week in October 2015. I plan to stay with the treatment for the 18 months, or longer if I have to. I am 66, thin, 5' 7" and also have bronchiestisis. My question is: when taking these meds, my sinuses act up off and on - lots of nasal drip and then it goes into my sinus as if I have a sinus infection. It lasts for a week or so, then goes away. It comes and goes. I think maybe it is the Rifampin, but not sure. Does anyone else have this problem? Many thanks, Pamela in the Boston area

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tessie | @tessie | Apr 27, 2016
In reply to @Paula_MAC2007 "@pamelasc1 and @tessie -- I noticed a similar thread in your posts. You are both thin..." + (show)
@Paula_MAC2007

@pamelasc1 and @tessie -- I noticed a similar thread in your posts. You are both thin or slim, middle aged women. When I was diagnosed, my pulmonologist told me that the latest manifestation of MAC/MAI is in thin, middle-aged women. Seems to me, what we have in common is changes in hormones. Doctors just don't know the correlation. There is also some connection to low levels of Vitamin D.

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Hi Pamela<br />
True, my doc told me same. Tall, slim older women. I lost weight at first.<br />
Gradually I felt I had to eat with split meals, here and there. I do not<br />
have bronchitis but I caught pneumonia in Oct. 2012. I returned home from<br />
Europe with pneumonia. I think my immune system was weak and I believe some<br />
air borne particle may be blamed for MAC. The medical profession doesn't<br />
know but as I understand it the clinics in the states are the best compared<br />
to Canada. I take Rifampin first thing in the morning on an empty stomach,<br />
then wait one hour before food intake. When do you take yours? I tend to<br />
burp often - stomach upset so I take TUMS which helps somewhat. I don't<br />
have nasal drip but I must say, 3-sets of pills certainly drugs me up. I'm<br />
dazed. And, I've had eye tests too. I hope we get rid of it once and for<br />
all.<br />
<br />
-- <br />
*Gayle*<br />
<br />
*​Toronto Ontario​*<br />

REPLY
janovr | @janovr | Apr 27, 2016
In reply to @pamelasc1 "Katherine or anyone else in the group - has anyone been told not to use their..." + (show)
@pamelasc1

Katherine or anyone else in the group - has anyone been told not to use their hot tub? And do you know if you can have the water tested? My doctor told me not to use it - it is outside, which is better than being enclosed. Does anyone have any experience with this part of your diagnosis of MAC/MAI? I gather that the water and mist can harbor the bacterium but I really am reticent to give it up entirely. Hopefully someone has some experience with this. Thanks, Pam

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pamelasco1, The doctor who is sponsoring our new support group in Atlanta told us Sunday....
ABSOLUTELY stay out of hot tubs, no matter where they are located.
Jan in Ga.

REPLY
tessie | @tessie | Apr 27, 2016
In reply to @pamelasc1 "Katherine or anyone else in the group - has anyone been told not to use their..." + (show)
@pamelasc1

Katherine or anyone else in the group - has anyone been told not to use their hot tub? And do you know if you can have the water tested? My doctor told me not to use it - it is outside, which is better than being enclosed. Does anyone have any experience with this part of your diagnosis of MAC/MAI? I gather that the water and mist can harbor the bacterium but I really am reticent to give it up entirely. Hopefully someone has some experience with this. Thanks, Pam

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The whirlpool is the hot tub. Is this correct? I presume same. Do you have<br />
any information on 'Steam room'. They have one at my fitness club.<br />
<br />
with thanks<br />
<br />
-- <br />
*Gayle*<br />

REPLY
Katherine, Alumni Mentor | @katemn | Apr 29, 2016
In reply to @pamelasc1 "Katherine or anyone else in the group - has anyone been told not to use their..." + (show)
@pamelasc1

Katherine or anyone else in the group - has anyone been told not to use their hot tub? And do you know if you can have the water tested? My doctor told me not to use it - it is outside, which is better than being enclosed. Does anyone have any experience with this part of your diagnosis of MAC/MAI? I gather that the water and mist can harbor the bacterium but I really am reticent to give it up entirely. Hopefully someone has some experience with this. Thanks, Pam

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Pam, in the recesses of my memory .. and I hate to swear by it I think I was told NOT to go into hot tubs .. primarily because of the difficulty of I think of guaranteeing the true cleanliness of them at any given time .. ANYWHERE! Personally there is NO WAY I would even THINK of going near a hot tub/steam room/or even a bath tub much because they really do not have a clear answer yet just how the mycobacterium gets into our lungs .. better safe than sorry! I chose to put a filter on my shower head .. BUT I live in a condo which my trusty plumber pointed out has the newer type plastic tubing/plumbing. Plastic plumbing is a GREAT harbor for mycobacterium .. what am I going to do .. sell my condo when we really don't know really how we get MAI/MAC. I think we just have to do the best we can .. wear a mask when gardening .. use a filter when showering (someone told me a good one was "Sprite HO2-WH High Output Shower Filter"
http://www.amazon.com/Sprite-HO2-WH-Output-Shower-Filter/dp/B0064I246A

take shorter showers .. turn our hot water heater higher so it can kill bacteria .. see that article I noted earlier .. exercise .. eat well. Just plain do the best we can .. BUT for me .. NO hot tub inside OR out! Pam, that is just my opinion.

REPLY
jillnalani | @jillnalani | May 1, 2016
In reply to @pamelasc1 "Katherine or anyone else in the group - has anyone been told not to use their..." + (show)
@pamelasc1

Katherine or anyone else in the group - has anyone been told not to use their hot tub? And do you know if you can have the water tested? My doctor told me not to use it - it is outside, which is better than being enclosed. Does anyone have any experience with this part of your diagnosis of MAC/MAI? I gather that the water and mist can harbor the bacterium but I really am reticent to give it up entirely. Hopefully someone has some experience with this. Thanks, Pam

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My pulmonary MD told me that even the shower mist causes problems.  I live by the beach but salty moist ocean air is fine?

REPLY
jillnalani | @jillnalani | May 1, 2016
In reply to @Paula_MAC2007 "@pamelasc1 and @tessie -- I noticed a similar thread in your posts. You are both thin..." + (show)
@Paula_MAC2007

@pamelasc1 and @tessie -- I noticed a similar thread in your posts. You are both thin or slim, middle aged women. When I was diagnosed, my pulmonologist told me that the latest manifestation of MAC/MAI is in thin, middle-aged women. Seems to me, what we have in common is changes in hormones. Doctors just don't know the correlation. There is also some connection to low levels of Vitamin D.

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Hello, I recently started on the 3 antibx for Mac treatment.  I take mine at bedtime to make the nausea a little more manageable.

REPLY
tessie | @tessie | May 1, 2016

Did you tell your doc you're taking medication at night? Mine told me take<br />
medication in the morning. I take them with food, and with lunch. It's the<br />
best I can do as I just don't feel well for 2 hours or more with the<br />
dosage. I don't take them all at once with food, but in between food on the<br />
top.<br />
<br />
I have fatigue effect sometimes.<br />
<br />
​And, I like wine. I take a drink on OFF meds days. Pharmacist told me no<br />
alcohol. I think within reason.​<br />
<br />
-- <br />
*Gayle*<br />

REPLY
2 replies
Turtle3656 | @turtle3656 | Jun 20, 2016
In reply to @Paula_MAC2007 "@pamelasc1 and @tessie -- I noticed a similar thread in your posts. You are both thin..." + (show)
@Paula_MAC2007

@pamelasc1 and @tessie -- I noticed a similar thread in your posts. You are both thin or slim, middle aged women. When I was diagnosed, my pulmonologist told me that the latest manifestation of MAC/MAI is in thin, middle-aged women. Seems to me, what we have in common is changes in hormones. Doctors just don't know the correlation. There is also some connection to low levels of Vitamin D.

Jump to this post

take with food!- I heard an expert say- if your urine is turning orange- enough is getting absorbed to work so take with food to minimize upset stomach

REPLY
tessie | @tessie | Jun 20, 2016
In reply to @Paula_MAC2007 "@pamelasc1 and @tessie -- I noticed a similar thread in your posts. You are both thin..." + (show)
@Paula_MAC2007

@pamelasc1 and @tessie -- I noticed a similar thread in your posts. You are both thin or slim, middle aged women. When I was diagnosed, my pulmonologist told me that the latest manifestation of MAC/MAI is in thin, middle-aged women. Seems to me, what we have in common is changes in hormones. Doctors just don't know the correlation. There is also some connection to low levels of Vitamin D.

Jump to this post

yup, urine is orange. I have follow up doc appt on June 29. They asked for three 'sputum collections'. I'm able to cough just a drop each. Hopefully it's sufficient. I want to avoid CT scan due to radiation. Thanks for writing to me.

REPLY
Katherine, Alumni Mentor | @katemn | Jun 20, 2016
In reply to @Paula_MAC2007 "@pamelasc1 and @tessie -- I noticed a similar thread in your posts. You are both thin..." + (show)
@Paula_MAC2007

@pamelasc1 and @tessie -- I noticed a similar thread in your posts. You are both thin or slim, middle aged women. When I was diagnosed, my pulmonologist told me that the latest manifestation of MAC/MAI is in thin, middle-aged women. Seems to me, what we have in common is changes in hormones. Doctors just don't know the correlation. There is also some connection to low levels of Vitamin D.

Jump to this post

Tessie, I don't know if it would make a difference for you .. but because of my coughing my Dr. Aksamit has me on two inhalers .. Qvar and Atrovent. I find that first thing in the morning before eating or drinking .. if I use BOTH inhalers .. 2 puffs each .. it causes me to cough up more sputum than usual so that I can mail in a sputum sample to Mayo Clinic more easily. Otherwise I am not always able to create the amount of sputum necessary at the Clinic .. that specimen comes back marked "Too Scant" or something like that. So if you use an inhaler and it makes you cough .. you might try my pattern of 1st thing in the morning?

Mayo Clinic gives me a shipping box that I FedEx to them with the sputum sample (placing a freezer thing in it for refrigeration). Hope this idea might help you? Katherine

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