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DiscussionManaging MAC without antibiotics
MAC & Bronchiectasis | Last Active: Feb 19 4:09am | Replies (115)Comment receiving replies
Replies to "@desperada ...checking Best Hospitals for Pulmonary by US News and Health.... Your UCLA Medical Center is..."
@desperada.....all of the responses posted for you are "right on"....and l agree with comments about you being good humored....l would add resilient and able to problem solve. Those were the traits that shouted out to me as l read your first post.
With MAC infection and bronchiectasis, most usually you have...as my ID doctor from NJH says the luxury of time and also other folks from our group mentioned in messages....unlike so many other diseases and conditions....there is no urgency to begin treatment....if indeed treatment is necessary.
Your next step is a thorough work up by the best resource you can find...even if you have to wait to get in...go to appt at Scripps....BUT go to NationalJewish.org and start viewing. Type in Videos on NTM workshops in search button or find links on this web site...or go to you tube and type in NTM infections etc. NTMINFO.org will connect you to many resources also.
The sponsor to our support group Mayo Clinic in Minnesota is equal in excellence re NTM infection....however they are sooooo far from you...and getting there is so challenging....whereas Denver...NJH.... is closer and the city has so many hotels and ubers and rental cars etc. I have been to both cities and both facilities.
When I went to NJH . I was told that although MAC was cultured from a bronchoscopy done to find out why l coughed for 3 years....my issue was from GERD..that l was silently aspirating into my lungs the MAC germ from water l drank....here in Wisconsin we have lots of NTM in the water..and l did not need antibiotics The CAT scan did not show active infection....they have radiologists there specially credentialed to read chest CAT scans. I go back annually to monitor some other stuff in the scan.
I was given explicit instructions re GERD....l note you are drinking coffee and eating choc...no no's for reflux. they also review all systems.....for me this revealed that l did not have the asthma that l had been treated 30 years for....that l had sleep apnea needed CPAP....have a cough disorder which l have learned to control after lessons from their speech therapist....they review immune system...on and on....THOROUGH!!
Since l follow the GERD guidelines l no longer cough.
I could go on and on....ask me any questions you have...you will get thru this....you are a problem solver and have amazing humor.
@tdrell
So, I don't know where you are geographically, but I am midway between L.A. and Palm Springs. This area is growing quickly. There is a hospital - Loma Linda in San Bernardino County. A group of doctors got together and decided to build a satellite hospital here and keep the same name, except they would all own aka CONTROL it! Well, at the last minute, the people who are responsible for these things said whoaaah! You can't do that! They wouldn't license them. So the original Loma Linda bought it - in paper only - because in reality these doctors still totally control it!
So, it's these doctors I am going to that are all affiliated with this satellite hospital. They would rather see me floating face down in the neighborhood lake rather than speak badly of or in any way betray one of their colleagues.
So, when I go "outside" of this little web, it will probably mean they'll ALL fire me!
They don't take kindly to "outside" campuses, and figure if that's where I want to go, then they don't need to be treating me anymore. Like going over their heads. I will most likely have to be doing all of my medical care down south in Torrey Pines. (Maybe you heard of it - huge golf tournaments there every year. The campus is right in front of it.) If I have to go to any E.R. here, they will have no access to any of my medical records. So in a way this may very well turn out to be like a big nasty divorce - without the alimony!
I have a lot to consider. Shouldn't be this way. Everyone's primary concern should be my health and what's best for me. Too bad.
I have gone to UCLA for MAC and gotten excellent treatment.
@desperada Your area sounds a lot like where I live in that the doctors don't want to take on 'head scratching' cases. I live in a resort area surrounded by 50 or more golf courses. I am convinced the docs here are only here for the golf, boating, and socializing. You think I am kidding? Here is how my annual checkup at my local cardiologist went. Dr.: "your meds still working alright? No more palpitations? Good!" He then wrote another year's worth of heart prescription and walked out of the room. He NEVER used his stethescope to listen to my heart!!! Every dr does that, whether they are a heart doctor or not. A heart dr that doesn't listen to your heart??! I took an elderly sick neighbor to his dr appt. He told the dr that he keeps getting dizzy and falls down. The dr said "hmmm, that's weird" and nothing more. I was flabbergassed. Now, I only go to the Mayo for everything. That way, they have a complete record of what is going on with me and I get superb care. Fortunately, I don't have to see them very often. I feel your pain in dealing with incompetant locals; I absolutely get it.
Just to elaborate on your helpful suggestion about things to avoid - or "no no's" as you refer to them.
I make my own blend of ground coffee - 75% D-Caf, 25% regular. I have one cup in the morning. In the afternoon I have a Decaf K-Kup.
The chocolate I consume is a piece I shave off from my CBD 2 inch square of chocolate - about the size of a small M&M. I can switch to CBD water after I have finished what I have.
For now those are things I enjoy and that bring me comfort.
I think the "culprit" is the caffeine which I am aware of and was why I created my blend to reduce my caffeine consumption.
@desperada I still drink my coffee in the mornings, decaf also. But I don’t think it’s the caffeine so much as the acidity that’s bad for the acid reflux. But I stopped using my Keureg because of the biofilm buildup in the tubes inside of the machine. I am back to perking my coffee the old fashioned way on the stove. Even though I cleaned the machine often with vinegar and used the descaler, I didn’t want to take the chance. The MAI lives in the biofilm inside tubing in water coolers, coffee makers , refrigerator water dispensers and ice makers, etc. I avoid those things whenever possible especially at home. When I’m out I do the best I can to avoid it but I’m not that crazy about it. I also garden with a mask on to avoid MAC inhalation from soil. I was never prescribed the antibiotics because I have no symptoms of active infections. I just try to do the best I can to avoid any additional infection, I try not to eat after 7:00 pm, and I sleep on a wedge to avoid the acid reflux silent aspiration at night. I don’t take any acid reducers because the acid kills the MAI that we ingest. I just try not to ingest too much.
Gina K
I JUST DESACLED BOTH OF MY COFFEE MAKERS YESTERDAY! HA! Is that pfunny?
We all try our own little things to get by huh? You go girl!
I am lucky to have an adjustable bed - so I raise the head at night and it really helps!
I use a mask in the garden now also. And I wore it taking out the dogs during the horrible wildfires here recently that were about 15 miles from where I live. One more freeway to jump and we could have been next! I don't eat after about 6 pm except for a BabyBel around 8:30 I have always been a "grazer" and eat mini-meals every few hours.
I'm not understanding your reference to "no symptoms of active infections." Is your MAC dormant? I thought it could not be cured.
@desperada.....a dietician at NJH said that even decaffeinated coffee or tea can affect reflux.....she is right....l had a few ounces of regular ice tea last night and it even increased...the caffeine in it....my pulse rate. she said there is an item made of prunes to sub for coffee....no thanks....l would then have issues with the other end..ahem.
what is CBD???? Citrus is also a culprit....we are not to lie on right side....tdrell
Google CBD. It doesn't seem to be legal is your State, except for seizures.
So, I checked that link. I have an appointment Friday at Scripps Torrey Pines - part of the Scripps La Jolla Campus - on your list #13 and very accessible for me. Still need a dog sitter but that's O.K.
The ID Physician I will be seeing went to NY University School of Medicine and did internships at USC and UCSD.
I look at that CV and see a doctor who has connections to other campuses, just by his alumnae status. I get the impression they all stay pretty much in touch with other within their field. If I need a Pulmonologist, it will be within the Scripps Campus.
That is my strategy so far. We will see. I have to try to pry the biopsy results from either the hospital or one of the doctor's. In California they take this "Privacy" issue wayyyyyyyyy too far! But this is important and I can be tenacious when I need to be.Don't understand why it should take an Act of Congress! Holy Cow!
If this doesn't work out, I have a couple of weeks to make friends with someone who owns their own Private Jet so I can go to Denver. Hopefully with a Pilot and Copilot named Sven and Laars and a Steward named Wilhelm! HA!