1. < MAC & Bronchiectasis

New to group... hello!

Posted by aerogirl @aerogirl, Aug 8, 2020

Hello - I happened to stumble upon this group today and glad to join a community with same/similar health challenges. It looks like many posts I've seen are dated ... just checking - is this discussion group currently active (August 2020)? Thanks!

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

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 13, 2020
In reply to @cali2142 "I would like to have our municipal water tested for mycobacterium. I recall someone posted, either..." + (show)
@cali2142

I would like to have our municipal water tested for mycobacterium. I recall someone posted, either here or elsewhere, where to send a water sample but didn't write it down. Does anyone have that information? Occasionally, we get the pink ring on one of our toilets and also a small amount on some shower tiles but not recently. My husband resealed the floor shower tiles and it hasn't come back since and sometimes I pour straight bleach on the tiles so maybe that's why. We live in Orange County, CA.
Carole

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Here is a link to a lab that can test for mycobacterium avium complex (mac) and also pseudomonas. The cost used to run around $150.00 http://www.specialpathegenslab.com

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haydee | @haydee | Aug 13, 2020

Hi All! I’m joining this group with the hope to learn and find support. I was diagnosed last year with bronchiectasis, MAC and have cavities. I have not started any treatment but am having more symptoms and am concern that the bacteria has gone to my other lung. Looking forward to hearing recommendations. I’m also thinking of reaching out to the NJH and Mayo for opinions. I live in Los Angeles, can anyone recommend a doctor with experience in MAC. Thank you.

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5 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 13, 2020
In reply to @haydee "Hi All! I’m joining this group with the hope to learn and find support. I was..." + (show)
@haydee

Hi All! I’m joining this group with the hope to learn and find support. I was diagnosed last year with bronchiectasis, MAC and have cavities. I have not started any treatment but am having more symptoms and am concern that the bacteria has gone to my other lung. Looking forward to hearing recommendations. I’m also thinking of reaching out to the NJH and Mayo for opinions. I live in Los Angeles, can anyone recommend a doctor with experience in MAC. Thank you.

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Good morning Haydee! I am so glad that you joined our group. Per our phone conversation, I did look in my notebook and did not have a listing for a recommended pulmonologist in your area. I will 'tap' some members on this site that live in Southern Ca. (& Ca in general) to see if they can help you. @unicorn, @dmarks, @onana, @ronaf, and anybody else; please chime in. Haydee, you will need both a good pulmonologist and Infectious Disease Dr. Have you had a chance to read older posts here? You can call me if you need help navigating this site.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 13, 2020
In reply to @haydee "Hi All! I’m joining this group with the hope to learn and find support. I was..." + (show)
@haydee

Hi All! I’m joining this group with the hope to learn and find support. I was diagnosed last year with bronchiectasis, MAC and have cavities. I have not started any treatment but am having more symptoms and am concern that the bacteria has gone to my other lung. Looking forward to hearing recommendations. I’m also thinking of reaching out to the NJH and Mayo for opinions. I live in Los Angeles, can anyone recommend a doctor with experience in MAC. Thank you.

Jump to this post

Good morning Haydee! I am so glad that you joined our group. Per our phone conversation, I did look in my notebook and did not have a listing for a recommended pulmonologist in your area. I will 'tap' some members on this site that live in Southern Ca. (& Ca in general) to see if they can help you. @unicorn, @dmarks, @onana, @ronaf, and anybody else; please chime in. Haydee, you will need both a good pulmonologist and Infectious Disease Dr. Have you had a chance to read older posts here? You can call me if you need help navigating this site.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 13, 2020
In reply to @haydee "Hi All! I’m joining this group with the hope to learn and find support. I was..." + (show)
@haydee

Hi All! I’m joining this group with the hope to learn and find support. I was diagnosed last year with bronchiectasis, MAC and have cavities. I have not started any treatment but am having more symptoms and am concern that the bacteria has gone to my other lung. Looking forward to hearing recommendations. I’m also thinking of reaching out to the NJH and Mayo for opinions. I live in Los Angeles, can anyone recommend a doctor with experience in MAC. Thank you.

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@haydee, I add my welcome. You'll notice that I moved your message to this "new to the group" discussion. @aerogirl also recently joined the group. This forum was started in 2011 and remains very active to today. You can see the origins of the group and meet most of the members in this discussion
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

I encourage you to browse the topics of the MAC group (https://connect.mayoclinic.org/group/mac-bronchiectasis/). Continue to ask questions.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 13, 2020
In reply to @colleenyoung "@haydee, I add my welcome. You'll notice that I moved your message to this "new to..." + (show)
@colleenyoung

@haydee, I add my welcome. You'll notice that I moved your message to this "new to the group" discussion. @aerogirl also recently joined the group. This forum was started in 2011 and remains very active to today. You can see the origins of the group and meet most of the members in this discussion
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

I encourage you to browse the topics of the MAC group (https://connect.mayoclinic.org/group/mac-bronchiectasis/). Continue to ask questions.

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@haydee may have missed my response earlier.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 13, 2020
In reply to @haydee "Hi All! I’m joining this group with the hope to learn and find support. I was..." + (show)
@haydee

Hi All! I’m joining this group with the hope to learn and find support. I was diagnosed last year with bronchiectasis, MAC and have cavities. I have not started any treatment but am having more symptoms and am concern that the bacteria has gone to my other lung. Looking forward to hearing recommendations. I’m also thinking of reaching out to the NJH and Mayo for opinions. I live in Los Angeles, can anyone recommend a doctor with experience in MAC. Thank you.

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Hi Haydee! Scroll up and see my post to you. So glad that you found us.

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nannette | @nannette | Aug 13, 2020
In reply to @windwalker "Hi Nan, is your water source the same as mine? BJW&S? That is who came to..." + (show)
@windwalker

Hi Nan, is your water source the same as mine? BJW&S? That is who came to my house and tested my water.

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@windwalker Yes! My water source is the same as yours! BJWSA. Nan

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 13, 2020
In reply to @nannette "@windwalker Yes! My water source is the same as yours! BJWSA. Nan" + (show)
@nannette

@windwalker Yes! My water source is the same as yours! BJWSA. Nan

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I figured it was. Good to know we have mac-free water!

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woot | @woot | Aug 13, 2020
In reply to @haydee "Hi All! I’m joining this group with the hope to learn and find support. I was..." + (show)
@haydee

Hi All! I’m joining this group with the hope to learn and find support. I was diagnosed last year with bronchiectasis, MAC and have cavities. I have not started any treatment but am having more symptoms and am concern that the bacteria has gone to my other lung. Looking forward to hearing recommendations. I’m also thinking of reaching out to the NJH and Mayo for opinions. I live in Los Angeles, can anyone recommend a doctor with experience in MAC. Thank you.

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haydee, I’m so sorry. The best investment I ever made was going to NJH in Denver. You will know you’re seeing the best experts in the US for bronch and Mac. Call them direct. You will not get a recording. You will speak to a real live person who will transfer you to the right real live person to set up your first appointment. I flew to Denver. Expensive. I stayed at a hotel. More money (but NJH has a list of hotels that give discounts for NJ H patients). My doctor there is Gwen Huitt, but anyone you get will be so knowledgeable. Your doctor back home can consult with them after NJH sets up your treatments. Do it. It really is your life.

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