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Pellegrino - could it be the cause for MAC?!
Hi everyone!
I have been a longtime lurker here on this forum ever since my mom was diagnosed with MAC over a year and a half ago.
She has been getting treatment at NJH for the past year. They put her on the “big three” daily since she began treatment.
The issue is that she has been testing positive for months… until one day my fiancé pointed out that perhaps the water she was drinking constantly on a day to day basis could be the cause. (Pellegrino)
It could very well be unrelated however ever since stopping- her cultures have been coming up negative for 5 months now.
Based on my understanding MAC seems to have a preference for a certain type of person: thin women.
The reason for my post is to try to somehow find a common link and cause - I understand it’s very well likely not that simple and maybe I am naive for thinking this but what if the cause and therefore cure to MAC is something so simple like the kind of water you drink.
Does anyone else here drink Pellegrino day to day?
I look forward to hearing from you all and like everyone else, I am praying for a speedy recovery for everyone who has been diagnosed with this stubborn bacteria!
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@ale3300 - That is an interesting question.
Here is my (non-scientific) opinion -
San Pellegrino water is from a deep well source, and tests negative (undetectable) for most pathogens, but I couldn't find whether they tested specifically for mycobacteria. There has never been any speculation that I can find about NTM in SP water.
SP it is a carbonated and sweetened beverage, so there could be a different correlation. If she had GERD (gastro-esophageal reflux) carbonated beverages can make it worse, causing stomach contents to enter the lungs via aspiration. If she was drinking a significant amount of sweetened SP, she may have been contributing fuel to the infection through reflux as well. So - one possible correlation.
But, being on meds daily, the typical time to a negative culture is about a 6-12 months. This fits the time frame for her conversion from positive to negative, so it could be just a coincidence...
This is an annoying infection with so few sure answers, it can make you crazy trying to figure the source. I stopped trying when my ID doc pointed out that NTM is everywhere, so unless you live in a bubble, it is impossible to avoid completely.
How is she doing with the treatment? With 5 negative specimens, it seems like the end is in sight for this treatment!
Sue
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9 ReactionsHi Sue,
Thank you so much for your response!
Reading your answer actually makes it all make sense- you’re right, it probably wasn’t the water itself but rather GERD - especially since she would chose to drink this even during her daily workout!
It has certainly made us all crazy in terms of trying to find the root cause.
My mom has been nebulizing daily, taking the antibiotics as well as a bunch of vitamins and supplements including the ones well discussed on this forum like colloidal silver and NAC.
As far as treatment, she’s been doing very well - thank God! She has had some tiredness but thankfully nothing bad enough to force her to change her lifestyle from before the medication.
Thank you so much for asking! She is visiting NJH this month and we’re all hopeful the end is near as long as she continues testing negative and the cavitation in her lung shows signs of shrinkage or at the very least no new growth.
I'm glad she is doing well. If she has added supplements not prescribed by NJH, please be sure she tells them EXACTLY what she is taking and in what quantities - this can be very important, especially when used in conjunction with powerful antibiotics.
Nebulizing colloidal silver is very concerning to me because there is not good evidence for putting heavy metal into our already challenged lungs. Please take a look at this post and the links there for more info:
https://connect.mayoclinic.org/discussion/new-and-undiagnosed/?pg=9#comment-777740
I hope the images continue to improve.
Sue
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2 ReactionsThank you for all your advice!
She has told her doctor about all the supplements she’s taking but yes I agree with you. Just to clarify in case someone else reads this and misunderstands my previous post - we have read many articles about nebulizing colloidal silver and we both felt that was too scary to try so she’s not doing that - just a spray every once in a while orally if she feels a cold or virus coming on (never more than that!)
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1 ReactionI love San Pellegrino water, too! But, unfortunately carbonated drinks can cause reflux. And refluxing anything, especially bacteria, into our lungs is not good.
Now, only rarely do I have carbonated drinks and my favorite San Pellegrino.
Best,
Linda Esposito
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1 ReactionInteresting. I usually have Perrier or San Pellegrino if I’m somewhere (eg a restaurant) without my own water because I don’t usually drink pop. I’m always worried about tea because I’m concerned about that water too.
You make a good point about carbonated drinks so perhaps that’s one more beverage I should strike off my list…
Thanks for the information. I will have to be more diligent about bringing my own water whenever I go out!
I do allow myself a carbonated treat from time to time. I guess it would depend on how concerned you are about gastric reflux. Also, for my own mental health, I occasionally relax my standards.
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5 ReactionsMay as well look at food and drug intake before a quality water drink. Bubbles bad for you? Don't do the bubbles.
Reflux is associated with bronchiectasis so, yes, it’s probably best to watch those bubbles!
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