1. < MAC & Bronchiectasis

Mac + lung cavity

Posted by bevmac @bevmac, Jun 24, 2020

my 3 centimetre cavity has healed in 16 months with the 3 antibiotics - both shocked and delighted. Preventative medicine doctor assisted my immune system cope - also recommended a vegan diet for last 9 months.

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thumperguy | @thumperguy | Sep 3, 2020
In reply to @sueinmn "@debminuet In your situation, I would definitely consider a workup at National Jewish Health or Mayo,..." + (show)
@sueinmn

@debminuet In your situation, I would definitely consider a workup at National Jewish Health or Mayo, if only to confirm that your (more MAC savvy) doc is on the right track.

After 18 months on the 3 antibiotics, 6 months daily, my body was in full rebellion. So last December, with my ID doc & pulmo, consulting with NJH, we decided to stop & see, only using Flovent, 7% saline 1X day & airway clearance. So far, so good. Made it through winter, when I usually get bronchitis &/or pneumonia, and through 2 major allergy seasons, TX & MN, without any illness and minimal need for levalbuterol nebs. Lung scan will be repeated in Dec, sooner if I get symptoms.

I have recovered most of my energy, though none of the weight I lost, and still have no appetite, so must be vigilant about eating enough. As for using the Big 3 to prevent, that will not be something I choose to do - I was too tired and sick from the meds. It will be caution & watching - my docs are happy with that strategy, even though we all think treatment will have to happen again at some point. I get the feeling that is becoming a more prevailing philosophy with MAC, since no matter how long we stay on the meds, it seems we are never really "cured", but always at risk for recurrence. Maybe by the time I need treatment again there will be something better?

Can you produce a sputum sample, either on your own or using saline nebs, so you can avoid a biopsy? So much easier on the body.
Sue

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Sue, you said “ , only using Flovent, 7% saline 1X day & airway clearance.” My question: does “airway clearance” involve using a compression vest? Don

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1 reply
thumperguy | @thumperguy | Sep 3, 2020
In reply to @ckscoville "I’m curious as to why the need to reduce protein in the diet." + (show)
@ckscoville

I’m curious as to why the need to reduce protein in the diet.

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CK, where did you notice a recommendation for reduced protein? I can’t find it for some reason.

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1 reply
janrn1 | @janrn1 | Sep 3, 2020
In reply to @fdixon63 "I would be on the phone immediately to contact Mayo or National Jewish for an appt...." + (show)
@fdixon63

I would be on the phone immediately to contact Mayo or National Jewish for an appt. Your doctor is correct, MAC is hard to get rid of and yes the antibiotic can be very hard on you. That said, it took me over a year of going to different doctors (primary, GI, ENT and local pulmonary doc) and even paying out of pocket to get a CT of my chest to see what was going on in my body. The pulmonary doc did a bronchoscopy and I got the diagnosis of bronchiectasis, MAC and Pseudomonas. He hit me with the 3 heavy antibiotics and I felt I was slowly dying. I found this group and a member sent me the name and info on a doctor 3 1/2 hrs away. I contacted his office and with was able to get an appt. within a couple of weeks. My next option would have been Mayo--either Rochester, MN or Jacksonville, FL. The doctor I saw finally said I probably should never have been put on medication. He also started me nebulizing--that day. I had to undergo some IV antibiotic treatment for a tough (3 strains) of Pseudomonas. It still flares it's nasty head and I'm currently positive but only one strain. I asked if I could increase my nebulizing from 3% Sodium Chloride to 7% and he accommodated my request. Currently I'm not on any medication but do nebulizing once a day. I feel well and do what I can to stay that way. Thank you God the Father.

How long have you been diagnosed? What is the qualification of your doctor--is he a specialist? I learned a long time ago that knowledge is power. Your reaching out to this group is probably the best thing you could do. Everyone here is ready and willing to help you with questions you have. Now, get busy and find your super hero doctor. They're out there.

Pray God will be with you in your endeavours.
Faye

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Thank you for your reply. I have been diagnosed with Mac but have no idea what it cultured out to be exactly. I have an appointment with my pulmonary Dr. but not until October. I hope to have answers before that! Jan

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fdixon63 | @fdixon63 | Sep 3, 2020

Hope all goes well. Would love to hear how your appointment goes.
Faye

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ckscoville | @ckscoville | Sep 4, 2020
In reply to @thumperguy "CK, where did you notice a recommendation for reduced protein? I can’t find it for some..." + (show)
@thumperguy

CK, where did you notice a recommendation for reduced protein? I can’t find it for some reason.

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Re: reduced protein... Look at bevmac's July 2 post in this discussion thread.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 4, 2020
In reply to @janrn1 "Can you tell me what NJH is? I would like to see what my options are...." + (show)
@janrn1

Can you tell me what NJH is? I would like to see what my options are. Thank you Sue. Did it help you to get a further evaluation for treatment?

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Sorry - I usually write things out the first time. National Jewish Health. I was so fortunate - my Infectious Disease doc has ties to NJH, so when he was at a crossroads in my treatment, he consulted directly with them from Minnesota. Being in this large metro area with teaching hospitals, I have been able to find excellent docs locally.
Sue

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Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 4, 2020
In reply to @thumperguy "Sue, you said “ , only using Flovent, 7% saline 1X day & airway clearance.” My..." + (show)
@thumperguy

Sue, you said “ , only using Flovent, 7% saline 1X day & airway clearance.” My question: does “airway clearance” involve using a compression vest? Don

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Don - I use an Aerobika for airway clearance, and with a huff cough am able to bring up lots of mucus, so we have not considered a vest at this point. My pulmo is monitoring, but so far I'm symptom-free.
Sue

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1 reply
thumperguy | @thumperguy | Sep 4, 2020
In reply to @ckscoville "I’m curious as to why the need to reduce protein in the diet." + (show)
@ckscoville

I’m curious as to why the need to reduce protein in the diet.

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CK, in common parlance protein typically means animal-sourced protein and moreover probably beef. Compared to plant protein it’s very acidic which can result in chronic acidosis in an enthusiastic carnivore. To combat that our body draws calcium from bone. T’aint a healthy condition. You would likely enjoy reading THE CHINA STUDY by T. Colin Campbell, Ph.D.

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Sep 5, 2020
In reply to @joanng "Sue I see many people talking about saline nebs what does this help with?" + (show)
@joanng

Sue I see many people talking about saline nebs what does this help with?

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Hi Joan, Switching to 7% solution in my nebulizer from 3% has been a game changer. Here is the article that was posted by someone on here. After I read it I requested to be switched to 7% and I sent the article to my specialists who had never heard of it. I think it has been the big turning point for me: https://pubmed.ncbi.nlm.nih.gov/22018993/

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 8, 2020
In reply to @bluesplashgirl "Hi Joan, Switching to 7% solution in my nebulizer from 3% has been a game changer...." + (show)
@bluesplashgirl

Hi Joan, Switching to 7% solution in my nebulizer from 3% has been a game changer. Here is the article that was posted by someone on here. After I read it I requested to be switched to 7% and I sent the article to my specialists who had never heard of it. I think it has been the big turning point for me: https://pubmed.ncbi.nlm.nih.gov/22018993/

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Hi Carolyn! That was me that posted that article. I am so glad that it made a difference for you. Several other members on this site have printed that article and showed it to their drs in order to get them to prescribe it. The 7% saline has made a big difference for many of us on here. I hope it works well for you too. I am puffing on some now.

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