Anyone doing "watchful waiting" with ACTs but no antibiotics?

Posted by loreofox80 @loreofox80, Jul 1 12:58pm

I am soon to be 81, in marginally good health, but am pretty sure the 3 antibiotics will make the remaining quality of my life very unacceptable. So at this time, I am trying all of the ACTs treatment options but not the Big 3 antibiotics. Anyone else doing the "watchful waiting" w/o the antibiotics. I would appreciate any suggestions or comments. Thank you very much!

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lindabreathless | @lindabreathless | Jul 8 3:53pm

Hi! I’m not familiar with the term ACTs. What does it stand for?
Thanks!

loreofox80 | @loreofox80 | Jul 8 5:04pm

In reply to @lindabreathless "Hi! I’m not familiar with the term ACTs. What does it stand for? Thanks!" + (show)

Hi, Linda,

ACTs are Airway Clearance Therapy-- all the strategies used to get the mucus up and out of the airways. It includes deep breathing, Aerobika, Huff Coughing, using a Nebulizer to open airways up and then sodium chloride to help break down the mucus so it can go up and out. I have also seen it written as ACBT Airway Clearance Breathing Therapy. So much to know! Thanks for reaching out. I am just a beginner at this. Lots of folks here with lots of hard earned experience. Good to take advantage of it in helping you to make your decisions about your journey. Nancy

ktw1147 | @ktw1147 | Jul 8 6:56pm

In reply to @sueinmn "@ktw1147 @paxmundi @tcd518 @bamaqueen @wolfplanetzero Essential Oils! YES - I use them (externally) extensively to help..." + (show)

@sueinmn

@ktw1147 @paxmundi @tcd518 @bamaqueen @wolfplanetzero
Essential Oils!
YES - I use them (externally) extensively to help with chronic pain, skin conditions, as aromatherapy...
NO - I do not inhale or nebulize them, even though I purchase mine from a reputable source, store them carefully and try to keep them uncontaminated.
WHY? There is no regulatory body to oversee the production and insure safety. My lungs are already a "hot mess" with Asthma, Bronchiectasis, scar tissue from past infections...

Is there something of interest in this blog?
Absolutely - I will be trying more aromatherapy with Eucalyptus, Tea Tree, Cinnamon and Lemon Grass as my airway clearance seems "stuck" right now and I fear developing another infection.
Also, I feel my lung capacity is diminishing slightly, and eucalyptus has been shown in hospitals to be helpful with respiratory distress, only a single study to be sure, but quite eye-opening.
( https://pmc.ncbi.nlm.nih.gov/articles/PMC9720502/)
The anti-bacterial properties of the other oils are also well-known, but because I have sensitive lungs, I will introduce the oils one-at-a-time, first by themselves, then in combination with eucalyptus, over a period of several days/weeks.
Along with these trials I will continue my airway clearance/exercise routine, with periodic 7% saline nebs, to try to stay healthy.

What concerned me in the blog? Well, this person has Cystic Fibrosis, and whether they chose to continue traditional treatment or not while using the oils is not clear - but suffice it to say Mica was NOT cured in any way by this therapy - two years later they had a double lung transplant. I am not sure if the blog is still active, but the Facebook link does not work and no current classes are offered. So this might not be the "poster child" for alternative medicine.

Finally, keep in mind that you are experimenting with uncontrolled substances - let your doctors know if you have any other conditions or use any medications. I recently learned that the turmeric (curcumin) I used to alleviate inflammation is also an anti-coagulant. When combined with other meds I use it was causing excessive bruising and bleeding from the slightest bump. Good thing I had this on my med list - when I needed surgery, I had to stop it for 14 days beforehand, delaying the operation, or I could have had major bleeding.

Hoping to hear some results from your trials.

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All true and correct. I read numerous articles and have done alot of other research. I’m so sorry to have posted. Thank you for taking the time to respond. I will go back to my “lurking”.

frankie160 | @frankie160 | Jul 8 9:06pm

Hi Loreofox80,

Yes, I've been asked to watch and wait before taking the Big 3 again for this second MAC infection. I have Bronchiectasis and COPD as well.
My ID Doc and PMD both want to see another CT scan to review
a new nodule later this month and will then discuss treatment. I suspect they want to see how serious of an infection I have this time. There are also some new treatments that they may want to try.....I was one of the lucky ones that did not have significant side effects from the Big 3. Hope this helps in some way. NTM MAC is very different for all of us.
Good luck!
Flo at Frankie160

Sue, Volunteer Mentor | @sueinmn | Jul 8 10:19pm

In reply to @ktw1147 "All true and correct. I read numerous articles and have done alot of other research. I’m..." + (show)

Please don't be sorry or stop posting! This was a very good topic to bring forward- many people wonder about it.
Others may be willing to try nebulized essential oils - introducing stuff into my lungs is just beyond my comfort zone. But there is definitely a place and time to consider using them.

ktw1147 | @ktw1147 | Jul 9 5:08am

Thank you for your response. Agreed. It is very scary to put anything in our lungs, especially with a lung disease. I don’t wear a mask but walk away from traffic, stay inside when there are fires or dust storms, avoid crowds, smokers, use lots of filters but waited before trying one drop of tea tree. The results spoke for themselves. I alternate between eucalyptus and tea tree. Sometimes using one drop of each.

ktw1147 | @ktw1147 | Jul 9 5:30am

In reply to @sueinmn "@ktw1147 @paxmundi @tcd518 @bamaqueen @wolfplanetzero Essential Oils! YES - I use them (externally) extensively to help..." + (show)

@sueinmn

Hoping to hear some results from your trials.

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Although they disagree with what I’m doing, my doctors are aware of my DIY projects. What they cannot disagree with is my results. I also take turmeric. I make capsules out of turmeric, cinnamon, ginger and pepper.

cwal | @cwal | Jul 9 6:29am

In reply to @bamaqueen "Summary 2022 multiple specialist for diagnosis of productive cough Result allergies and acid reflux 2023 no..." + (show)

@bamaqueen

Summary
2022 multiple specialist for diagnosis of productive cough
Result allergies and acid reflux
2023 no improvement changed PC doctor after another round of specialist
New NP cultured sputum (shocked it had not been done)
Positive for pseudomonas, treatment Cipro
Off and on for many months. Developed afib somewhere along the way.
ER again Labor Day weekend in afib after Cipro again. Begged to be
admitted for cough because X-ray show lung issues. Nope
Primary care doctor admitted day after holiday and that began my IV
Antibiotics adventure. Four days in and home with line to give at
Infusions at home. Treating pseudomonas still.
Iv line fails. This goes on for ? Total of 3 or 4 PICC lines. Had an allergic
To new iv med.
Infectious disease doc decided I probably have MAC. He orders meds
Big 3, but I have to go to a hospital 40 minutes away twice a day for
Arikaycin infusions. WHAT? How is that even doable?
Thought it over and had home care nurse pull my picc line and found
Another doctor at the University of Alabama. Thought I found a winner,
But turned out she had great intentions (said I was lucky the first one
didn’t kill me), but not experienced. Found out I had Absessus by then.
Ended up at the UAB (Birmingham). They have a 3 year old NT M
Clinic, yay!!! It’s a four hour drive, but so worth it. My CT had
Improved greatly and just an occasional cough. Doctor asked me what
I did to accomplish this. I told him essential oils! I told him about a
Study I had found (he seemed to acknowledge he had seen it) and I had
Been diffusing certain oils. SO I am in the watchful waiting group!! My
Culture a few months ago was negative. I have one in progress that has
Positive for pseudomonas. Pretty sure I’m colonized.
Next appointment 7/29. It will take a lot to get me back on meds. I lost
Over 25 lbs. and was very sick. unfortunately gained it all back plus a
Few. Sorry for the long summary. Best of luck.

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He "seemed to acknowledge he had seen it" ? Did he actually give his verbal approval?

irenea8 | @irenea8 | Jul 9 7:07am

In reply to @bamaqueen "Summary 2022 multiple specialist for diagnosis of productive cough Result allergies and acid reflux 2023 no..." + (show)

@bamaqueen

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diffuse oils means you have it going in a room near you to breath it but not directly?? Have you found any diffused oil for Pseudo? What diffuser do you use?

bamaqueen | @bamaqueen | Jul 9 10:21am

In reply to @cwal "He "seemed to acknowledge he had seen it" ? Did he actually give his verbal approval?" + (show)

He didn't tell me not to use it. This was my first visit and long with lots of info going back and forth. I had not started nebulizing or any "formal" ACT's. I'd been given an Acapella by a previous doctor. I think he was amazed my lungs looked so good. He said I was a lucky woman.
Now I know diffusers can be a bad idea and harbor bacteria. I use the simplest I can find and disinfect each refill. I use sterile distilled water. I also passive diffuse which is putting the oil on objects made for this or simply a few drops on a cotton ball. The oil itself is antibacterial.
I will ask him my next visit.

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