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!

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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@windwalker Terri, I recall pinkish-orange on the fold-over parts of plastic shower curtains, and around the drains of the tub and bathroom sinks not only where I live now, Grady County Georgia, but in Jefferson County and Shelby County Kentucky. Also in Clark County Indiana. My bf has well water in Grady County Georgia and I don't notice it.

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Aerogirl, here’s a piece of whimsy I posted a few months ago during a late Thumper session.


With a nod to Gene Autry; to the tune of "I'm back in the saddle again."

I'm ridin' ole Thumper again,
Chasin' that ole Devil phlegm.
If I don't git him now there's always the next round.
I'm determined to win in the end.

Whoopi-ty-aye-yay, doin' it twice a day.
Ridin' ole Thumper again.

Whoopi-ty-aye-oh,we're givin' it a go.
Ridin' ole Thumper again.

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In some venues“Thumper” Is known as Respirtech Percussion Vest.

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@nannette

@windwalker Teri, I have the pink slime at my house!! Interestingly enough though, I've only seen it in one toilet and not the other. So I would be Beaufort County (like you, right?) zip code is 29902. I was so excited when I saw it! Nan

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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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@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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Hello cali2142. You can reach out to your local water company and ask them to test your water for you. That is what I did. I explained my disease from mac and having bronchiectasis to the quality control person and she was happy to set that up for me. She was unaware that this organism can be in the water supply and unaware of it making people sick. She thanked me for educating her on this subject and was going to write about it within her company. If your water company will not do it for you, there is a lab that you can get to test it. I will get back to you with the lab info. Hopefully, the fact that you have had pink rings in your toilet will indicate the absence of mac in your water. I have a question: have you found a good pulmonologist & I.D. dr in your area? @haydee is looking for both. Thank you!

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@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

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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@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.

REPLY

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

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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@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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