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

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?

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”.

@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.

Sue, I am going to attach a screen shot of the study I have on EO. It is an in vitro study. You may remove it if inappropriate.
I also use multiple oils primarily for pain (5 back fractures) and lung issues.
I use the first 3 oils listed in the study for Absessus and a variety of others for all my other ailments.
Frankincense mainly. Pain oils I use topically diluted in a carrier oil.
Thank you!

First, Mayo Connect will NOT "kick you off" for mentioning essential oils or any other valid, legal alternative medication or therapy, so no worries there. Essential oils have been around for a long time, and there are many well-documented uses for them, mainly on the outside of the body.

Next, here is a link to the full article:
https://pmc.ncbi.nlm.nih.gov/articles/PMC10920374/
Here is my take after reading the article from beginning to end:

Eighty essential oils were considered and 12 essential oils that seemed to have an effect on M. Abscessus were tested on samples in a laboratory. Many were found to kill M. Abscessus within 1 - 7 days, far better than the antibiotics currently available. Remember TESTED ON CULTURE PLATES IN A LAB - not animals, not people, noy in the body.

Many of these essential oils pose extreme difficulty in delivery because they have toxic properties which make them not suitable for injestion or potentially damaging to tissue. In addition, no testing was done to determine if the beneficial properties survived delivery, via inhalation, injection or capsules. In their discussion they stated "Essential oils have significant cytotoxic properties that may affect their use in vivo (in the body)."

This report does not address the safety or usefulness of inhaling or nebulizing any of these essential oils - I hope with the information they got, more studies are being designed to do this.

The takeaway, at least for me, would be to do this VERY cautiously, a tiny bit of a single oil at a time, being sure to use pure products from reputable sources (not the vape shop or a reseller), dilute only with sterile water (not a carrier oil) and keep everything scrupulously clean. I would also run it by ALL of my docs beforehand, and check one of the interaction checker sites for any potential adverse reaction between any medication or supplement and any essential oil or herb.

It is too bad research is so costly - in NTM we have a rare infection, and M Abscessus is a very rare subset. So it is hard to get funding for the few when there are conditions like diabetes and heart disease that affect millions.

Please keep us and your doctors in the loop if you decide to try essential oils, and please be aware that your body may not like some of them, or their active ingredients, at all. Stop right away if you feel any adverse reactions like wheezing, shortness of breath, you don't want the cure to make you worse.

First, Mayo Connect will NOT "kick you off" for mentioning essential oils or any other valid, legal alternative medication or therapy, so no worries there. Essential oils have been around for a long time, and there are many well-documented uses for them, mainly on the outside of the body.

Next, here is a link to the full article:
https://pmc.ncbi.nlm.nih.gov/articles/PMC10920374/
Here is my take after reading the article from beginning to end:

Eighty essential oils were considered and 12 essential oils that seemed to have an effect on M. Abscessus were tested on samples in a laboratory. Many were found to kill M. Abscessus within 1 - 7 days, far better than the antibiotics currently available. Remember TESTED ON CULTURE PLATES IN A LAB - not animals, not people, noy in the body.

Many of these essential oils pose extreme difficulty in delivery because they have toxic properties which make them not suitable for injestion or potentially damaging to tissue. In addition, no testing was done to determine if the beneficial properties survived delivery, via inhalation, injection or capsules. In their discussion they stated "Essential oils have significant cytotoxic properties that may affect their use in vivo (in the body)."

This report does not address the safety or usefulness of inhaling or nebulizing any of these essential oils - I hope with the information they got, more studies are being designed to do this.

The takeaway, at least for me, would be to do this VERY cautiously, a tiny bit of a single oil at a time, being sure to use pure products from reputable sources (not the vape shop or a reseller), dilute only with sterile water (not a carrier oil) and keep everything scrupulously clean. I would also run it by ALL of my docs beforehand, and check one of the interaction checker sites for any potential adverse reaction between any medication or supplement and any essential oil or herb.

It is too bad research is so costly - in NTM we have a rare infection, and M Abscessus is a very rare subset. So it is hard to get funding for the few when there are conditions like diabetes and heart disease that affect millions.

Please keep us and your doctors in the loop if you decide to try essential oils, and please be aware that your body may not like some of them, or their active ingredients, at all. Stop right away if you feel any adverse reactions like wheezing, shortness of breath, you don't want the cure to make you worse.

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.

Sue, I am going to attach a screen shot of the study I have on EO. It is an in vitro study. You may remove it if inappropriate.
I also use multiple oils primarily for pain (5 back fractures) and lung issues.
I use the first 3 oils listed in the study for Absessus and a variety of others for all my other ailments.
Frankincense mainly. Pain oils I use topically diluted in a carrier oil.
Thank you!