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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blm1007blm1007 | @blm1007blm1007 | Feb 22 9:43am
In reply to @sueinmn "I use Mucinex LA 600 mg twice a day - it is guaifenesin extended release. I..." + (show)
@sueinmn

I use Mucinex LA 600 mg twice a day - it is guaifenesin extended release. I use the plain version without decongestants or anything else added. If you look in the stores, it is quite expensive, so I order mine on-line, often from e-Bay (where it comes in the factory-sealed boxes, often for 1/4 the price of the drug store) Most of the generic brands are not time-release, so don't be fooled by the lower price - you have to take it 4 times a day, and the action is not the same.

It effectively thins all the secretions - nose, ears, lungs... I have used it for over 30 years without any bad effects. My husband uses it too. I use the singulair and during bad allergy season a non-steroid saline spray. Years ago I was cautioned that incorrect use of nasal lavage can force germs deeper into my sinuses, so I don't use it - don't really need it with the Mucinex keeping things moving.

Sue

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Sue-
Have you ever tried the CVS liquid guaifenesin? What are your thoughts about the CVS liquid?
Is there a best time, etc. to take the Mucinex LA 600?
Did you start out with 600 or a lower dosage?
Do you still take it 2x a day?
I just finished Paxlovid.
I am having head congestion, could the mucus have anything to do with the feeling of head congestion and ear feeling stopped up.? I'm not having pain at this time. I did have a couple of times a quick shooting pain in the ear. Hard to get into see the PCP and the ENT as soon as I would like. I may go to Urgent Care. Any thoughts?

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1 reply
reneemc | @reneemc | Feb 22 12:24pm

How did your Dr help your immune system? Were you tested for immunodeficiency? Did you have gamma globin infusions?

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Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 22 1:48pm
In reply to @blm1007blm1007 "Sue- Have you ever tried the CVS liquid guaifenesin? What are your thoughts about the CVS..." + (show)
@blm1007blm1007

Sue-
Have you ever tried the CVS liquid guaifenesin? What are your thoughts about the CVS liquid?
Is there a best time, etc. to take the Mucinex LA 600?
Did you start out with 600 or a lower dosage?
Do you still take it 2x a day?
I just finished Paxlovid.
I am having head congestion, could the mucus have anything to do with the feeling of head congestion and ear feeling stopped up.? I'm not having pain at this time. I did have a couple of times a quick shooting pain in the ear. Hard to get into see the PCP and the ENT as soon as I would like. I may go to Urgent Care. Any thoughts?

Jump to this post

I have never used liquid guaifenesin, only the long-release tablets, so have no idea of effectiveness. I have been taking it for so long (decades) that I have no recollection of the dosage when I started.

Also, not being a doc, I don't feel qualified to comment on you head congestion and ear pain. My personal rule of thumb is, if it's a cold, it will either begin to clear up or get worse in about 7 or 8 days. If not, I see my doc. Or if I am running a fever for more than 3 days or get sudden ear or sinus pain, off to the doc or Urgent Care.

Do you have the option to call your doc for advice?
Sue

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1 reply
squire123 | @squire123 | Feb 22 8:43pm
In reply to @suzanne11 "Hi Ric, How do I avoid that? Doctors say the Mac is flowing in my lungs...." + (show)
@suzanne11

Hi Ric,

How do I avoid that?

Doctors say the Mac is flowing in my lungs. I have had 2 cat scans. But the problem is I am very uncomfortable and I have a lots of sputum. I feel like I have infection all the time. And my life quality has changed. 🙁
I also have tow cats and I am sure my cats are not helping my situation. I love my cats but everyone is telling me I should give them up. I am so confused. I wonder if anyone else hear has cats or dogs?

Thank you,

Suzanne

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Have a cockatiel and a Goldendoodle. Put the bird on the back porch when warmer and vacumn alot! Keep the cats if possible out of your bedroom. My door is closed and Murphy doesn't come in the bedroom. Change filter in ac more frequently. B

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suzanne11 | @suzanne11 | Feb 22 9:00pm
In reply to @rstel7272 "The big 3 does not cause a cavity. If you have Mac + cavitation, they might..." + (show)
@rstel7272

The big 3 does not cause a cavity. If you have Mac + cavitation, they might add Amikacin or Arikayce in addition. If Mac does not respond to the big 3, Arikayce may be added

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Hi Rick,

I understand. Mac Causes the Cavity. I have an appointment with infectious disease doctor on 02/29.

Thank you all for all your responses. 🙏🏽

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blm1007blm1007 | @blm1007blm1007 | Feb 22 10:50pm
In reply to @sueinmn "I have never used liquid guaifenesin, only the long-release tablets, so have no idea of effectiveness...." + (show)
@sueinmn

I have never used liquid guaifenesin, only the long-release tablets, so have no idea of effectiveness. I have been taking it for so long (decades) that I have no recollection of the dosage when I started.

Also, not being a doc, I don't feel qualified to comment on you head congestion and ear pain. My personal rule of thumb is, if it's a cold, it will either begin to clear up or get worse in about 7 or 8 days. If not, I see my doc. Or if I am running a fever for more than 3 days or get sudden ear or sinus pain, off to the doc or Urgent Care.

Do you have the option to call your doc for advice?
Sue

Jump to this post

Thanks for your thoughts about the time element for a cold. I haven't had a cold in years, so your 7 to 8 day guidline is good information.
No fever or sinus pain and ear pain was very temporary, thank goodness.
To be cautious, I have made a medical appointment to have the ear checked.

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blixtentoo | @blixtentoo | Feb 23 10:19am
In reply to @rstel7272 "The big 3 does not cause a cavity. If you have Mac + cavitation, they might..." + (show)
@rstel7272

The big 3 does not cause a cavity. If you have Mac + cavitation, they might add Amikacin or Arikayce in addition. If Mac does not respond to the big 3, Arikayce may be added

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I think we've talked before and you mentioned that you tried to take Arikayce for 4 months but you didn't tolerate it well. I've had one dose so far which left me short of breath for days. So the doctor said to wait a week then try again. i have COPD and Arikayce can worsen COPD. I'm wondering if you could share your reasons for not continuing with Arikayce. I understand everyone is different but I'm nearly 80 years old and I just fear that going down this path (of Arikayce) is going to take such a toll on me it won't be worth it. On the other hand I'm scare not to take it. I'm exhausted just thinking about it. Any thing you feel like sharing would be helpful. And I know everyone must make their own decision.

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1 reply
Rick | @rstel7272 | Feb 23 12:00pm
In reply to @blixtentoo "I think we've talked before and you mentioned that you tried to take Arikayce for 4..." + (show)
@blixtentoo

I think we've talked before and you mentioned that you tried to take Arikayce for 4 months but you didn't tolerate it well. I've had one dose so far which left me short of breath for days. So the doctor said to wait a week then try again. i have COPD and Arikayce can worsen COPD. I'm wondering if you could share your reasons for not continuing with Arikayce. I understand everyone is different but I'm nearly 80 years old and I just fear that going down this path (of Arikayce) is going to take such a toll on me it won't be worth it. On the other hand I'm scare not to take it. I'm exhausted just thinking about it. Any thing you feel like sharing would be helpful. And I know everyone must make their own decision.

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At first it was like vaping, no problem. Then a series of headaches and tinnitus. Coughing continually increased each week, by month 5, I had to stop the daily 14 minute treatment somewhere between 7-10 minutes due to heavy unmanageable coughing. With no guidance on reduced dosages, my pulminologist had me stop. I would have stopped anyways.

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1 reply
blixtentoo | @blixtentoo | Feb 23 1:47pm
In reply to @rstel7272 "At first it was like vaping, no problem. Then a series of headaches and tinnitus. Coughing..." + (show)
@rstel7272

At first it was like vaping, no problem. Then a series of headaches and tinnitus. Coughing continually increased each week, by month 5, I had to stop the daily 14 minute treatment somewhere between 7-10 minutes due to heavy unmanageable coughing. With no guidance on reduced dosages, my pulminologist had me stop. I would have stopped anyways.

Jump to this post

I think dosage is important because we are all so different and have different levels of toleration. I'm worried about the tinnitus as well since I already have it. Thanks for your input, I appreciate it.

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wendyes | @wendyes | Feb 29 9:31pm

I had a cavity that would not heal. I tried using Red Light Therapy and after 3 months use, the cavity was healed. I can't swear that it was due to the light therapy, but it says it helps Bronchiectasis and COPD. I took a break from it and developed another cavity so started using it again consistently for about 3 months now so I'll see what the next CT scan shows. My sputum from my daily nebulizer use has decreased significantly with its use. I was diagnosed in 2018 at NJH in Denver and have been able to avoid antibiotic therapy...so far. My tests have been inconsistent.

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