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pamelasc1
@pamelasc1

Posts: 88
Joined: Feb 25, 2016

I was diagnosed with MAC in May 2015.

Posted by @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

REPLY

Hi @pamelasc1, welcome to Mayo Clinic Connect! I’d recommend that you check out the link below to the thread where @katemn, @Paula_MAC2007 and many others are talking about MAC. I think it will be a really helpful resource for you and a great place to connect with others going through a similar experience. Once you’re there, keep scrolling! There’s almost three pages of great discussion. https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=1

Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here .. I’ve learned SO much from our forum members .. good people! You will see that when I was diagnosed in 2007 .. was on 5 antibiotics for 30 months .. have been negative now since May 2014! See Dr. Timothy Aksamit, a specialist in MAC at Mayo Clinic at Rochester MN. I am now age 72 .. doing great .. exercising, traveling and living life!

I don’t know how you feel about this .. but I have had GREAT experience with acupuncture for sinus/nasal issues. I also have bronchiectasis .. big time but have been told the terrific coughing is in part due to the sinus/nasal issues. I googled acupuncture in our area .. found a practitioner who graduated as an MD Internist in China .. PLUS had been brought here to teach acupuncture. SO .. do your “due diligence” .. find a good practitioner. I found 4 visits really helped my issues .. was told it can take 5-6 depending on the severity.

It worked so well for me I have now sent my husband who has suffered a LOT of sinus issues for a long time .. he has only gone 2 times and says he can see the difference already .. and he is a bit of a sceptic! I reminded him that in some countries they use acupuncture for surgeries!

In terms of the Rifampin .. my only side affect was a LOT of sleep disturbance .. which went away when I stopped taking it. But every person’s body is different and will react differently. Hope this helps!

Stay strong .. stay positive .. stay happy!
Katherine/katemn

@rebeccamcroberts

Hi @pamelasc1, welcome to Mayo Clinic Connect! I’d recommend that you check out the link below to the thread where @katemn, @Paula_MAC2007 and many others are talking about MAC. I think it will be a really helpful resource for you and a great place to connect with others going through a similar experience. Once you’re there, keep scrolling! There’s almost three pages of great discussion. https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=1

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Thanks so much – I will look at the link you suggest. I am very glad to have found this group! Pamela

Thank you Kate – I will most certainly look into the acupuncture option. I never had sinus issues before beginning the meds, so I am suspicious that one of them is the root cause of the problem. If anyone else has had their sinus affected by the MAC treatment, do let me know! Many thanks, Pamela

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

@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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Hi @pamelasc1, I happen to know that @katemn is traveling at the moment and may not have access to the Internet for a while. Pamela, have you been introduced to all the other MAC members on this thread https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/ You may consider hopping over to that thread and posting your question there.

There are over 130 messages, which I encourage you to read. But here’s the last page of messages if you just want to get to posting your question. 🙂

@katemn

Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here .. I’ve learned SO much from our forum members .. good people! You will see that when I was diagnosed in 2007 .. was on 5 antibiotics for 30 months .. have been negative now since May 2014! See Dr. Timothy Aksamit, a specialist in MAC at Mayo Clinic at Rochester MN. I am now age 72 .. doing great .. exercising, traveling and living life!

I don’t know how you feel about this .. but I have had GREAT experience with acupuncture for sinus/nasal issues. I also have bronchiectasis .. big time but have been told the terrific coughing is in part due to the sinus/nasal issues. I googled acupuncture in our area .. found a practitioner who graduated as an MD Internist in China .. PLUS had been brought here to teach acupuncture. SO .. do your “due diligence” .. find a good practitioner. I found 4 visits really helped my issues .. was told it can take 5-6 depending on the severity.

It worked so well for me I have now sent my husband who has suffered a LOT of sinus issues for a long time .. he has only gone 2 times and says he can see the difference already .. and he is a bit of a sceptic! I reminded him that in some countries they use acupuncture for surgeries!

In terms of the Rifampin .. my only side affect was a LOT of sleep disturbance .. which went away when I stopped taking it. But every person’s body is different and will react differently. Hope this helps!

Stay strong .. stay positive .. stay happy!
Katherine/katemn

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I just started on the 3 typical antibx for MAC 2wks ago. I have lost my appetite, constantly thirsty, red urine, insomnia and the worse nausea…. Any suggestions?

@katemn

Hello Pamela, welcome! I second the recommendations of Rebecca about reading the past postings here .. I’ve learned SO much from our forum members .. good people! You will see that when I was diagnosed in 2007 .. was on 5 antibiotics for 30 months .. have been negative now since May 2014! See Dr. Timothy Aksamit, a specialist in MAC at Mayo Clinic at Rochester MN. I am now age 72 .. doing great .. exercising, traveling and living life!

I don’t know how you feel about this .. but I have had GREAT experience with acupuncture for sinus/nasal issues. I also have bronchiectasis .. big time but have been told the terrific coughing is in part due to the sinus/nasal issues. I googled acupuncture in our area .. found a practitioner who graduated as an MD Internist in China .. PLUS had been brought here to teach acupuncture. SO .. do your “due diligence” .. find a good practitioner. I found 4 visits really helped my issues .. was told it can take 5-6 depending on the severity.

It worked so well for me I have now sent my husband who has suffered a LOT of sinus issues for a long time .. he has only gone 2 times and says he can see the difference already .. and he is a bit of a sceptic! I reminded him that in some countries they use acupuncture for surgeries!

In terms of the Rifampin .. my only side affect was a LOT of sleep disturbance .. which went away when I stopped taking it. But every person’s body is different and will react differently. Hope this helps!

Stay strong .. stay positive .. stay happy!
Katherine/katemn

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I feel for you! Been there, done that! Everyone is different but I tried to take the meds. 2 times and ended up in the hospital both times. SEVERE nausea to the point I could not talk. I have learned more on this site than from my doctor….. All he would say is ” you have to take this medicine!” I am waiting to see how I progress and will seek another doctor. Good luck!
Jan

In Nov. 2015, I began 3-antibiotics, 3-days per week. Every Friday (the third day of meds) I suffered many bathroom poops. I complained & doc changed one of the antibiotics. I feel better other than common symptoms associated with MAC. I am 67, tall and slim. Eighteen months medicine is a long, long time with no guarantee. Doc said he thought I got it at my fitness club. (shower head, whirlpool). They say online it’s from municipal water. Health Canada doesn’t know the cause. Comments?

@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.

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


*Gayle*

*​Toronto Ontario​*

@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.

@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
any information on ‘Steam room’. They have one at my fitness club.

with thanks


*Gayle*

@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.

@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?

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