Managing MAC without antibiotics

Posted by desperada @desperada, Aug 16, 2018

I have just been diagnosed with MAC and Bronchiectasis. I am already mostly deaf in one ear with RAGING tinnitus, I am plagued daily with horrific headaches, I have fibromyalgia, stenosis in the neck and spine and have vision problems. I also have anxiety disorder. I have had C-Diff four times from antibiotics, so my gut is pretty much ruined. EVERY SINGLE DAY is rife with suffering. I am not going to add suffering from these antibiotics that will be exacerbating every single affliction I have to the point of being totally intolerable. Taking these antibiotics scares me to death! The only thing that has stopped my trembling is the decision just to opt not take them. and believe me, the Pulmonologist just gave me brutal hell over MY decision. He was just mean, and I was crying more over his attitude, than having the actual sickness.
My husband just passed away in November, and we had no children. I haven't even finished dealing with his death, I'm still in bereavement therapy, and now i find myself having to plan for mine!
I am not willing to suffer the side effects of these totally toxic antibiotics. I have had a pretty good life. I am 71. No one lives forever.
I am really at peace and content to just enjoy the days I have, and I feel relieved I can just plan to get myself into Assisted Living and let things run their course.
I am totally fed up with the horrible care and berating I'm getting from my doctors with the exception of my PCP. I live in an area where the health care is not that great, and everyone just kind of gets by.
I am using CBD edibles and they actually suppress my coughing and keep me relaxed without being impaired.
My disease right now is not that debilitating, but I know that will be changing.
The thing I am finding out is that there is absolutely no predictability. No one knows how the disease progresses - each person is different. Not everyone "tolerates" the antibiotics, and not everyone has a positive outcome with them.
I have two little dogs - I walk them EVERY day - no matter how I feel. And it takes "activity" just taking care of myself on a daily basis.
I have never been a martyr. This is not a fight I want to participate in.
My support is practically nothing - I have to do the best I can completely on my own.
There are so many, many brave, driven people sharing their experiences here and I take huge comfort knowing this disease is not just mine and I am not being victimized or punished nor the only one going through this.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

tdrell | @tdrell | Aug 18, 2018

@desperada ….doctors that cannot handle input from specialists hat l would want to go to. I live in a small city near Milwaukee WI,I am fortunate to have had even before Medicare with supplement, insurance that has allowed me to go wherever I wanted. When I got back from NJH in 2017. the local pulmonologist was irate l had had the sleep study at NJH even though he had noit scheduled me for one after discovering the issue for 6 months...he too yelled etc.....l switched to the other system we have in town to a doctor who worked with input from NJH.@tdrell

Granny | @goddard | Aug 18, 2018

In reply to @alleycatkate "@desperada ...checking Best Hospitals for Pulmonary by US News and Health.... Your UCLA Medical Center is..." + (show)

I have gone to UCLA for MAC and gotten excellent treatment.

Sophie | @sophie1019 | Aug 18, 2018

In reply to @tdrell "@desperada ….doctors that cannot handle input from specialists hat l would want to go to. I..." + (show)

I have mac and live in Milwaukee. I have a good doc at froedtert and I will not tolerate with any doctor treating me bad. I already feel bad enough sometimes and I don't need the pile on.

auntnanny | @auntnanny | Aug 18, 2018

Amen

tdrell | @tdrell | Aug 18, 2018

In reply to @tdrell "@desperada ….doctors that cannot handle input from specialists hat l would want to go to. I..." + (show)

@sophie1019...who do you go to at Froedert??? I am in West Bend...we have choices here....Aurora as well as Froedert! Tdrell

Terri Martin, Volunteer Mentor | @windwalker | Aug 19, 2018

In reply to @tdrell "@desperada ….doctors that cannot handle input from specialists hat l would want to go to. I..." + (show)

@tdrell Hi Terri. That is an excellent example of self advocacy.

Terri Martin, Volunteer Mentor | @windwalker | Aug 19, 2018

In reply to @alleycatkate "@desperada ...checking Best Hospitals for Pulmonary by US News and Health.... Your UCLA Medical Center is..." + (show)

@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.

desperada | @desperada | Aug 19, 2018

In reply to @alleycatkate "@desperada ...checking Best Hospitals for Pulmonary by US News and Health.... Your UCLA Medical Center is..." + (show)

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.

ginak | @ginak | Aug 19, 2018

In reply to @alleycatkate "@desperada ...checking Best Hospitals for Pulmonary by US News and Health.... Your UCLA Medical Center is..." + (show)

@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

yayaaz | @yayaaz | Aug 19, 2018

In reply to @windwalker "Dear @desperada, Your story saddens me. My condolences on the loss of your husband. I know..." + (show)

@windwalker

Dear @desperada, Your story saddens me. My condolences on the loss of your husband. I know it is a big adjustment to life without him. I am very glad that you have two dogs. They'll keep you going. I have one little teacup poodle that goes everywhere with me and she never leaves my side. It is important to have that added energy in the house to curb loneliness. I was diagnosed on 2005 with mac; I too declined the Big 3 meds. And yes, that pulmonologist was furious with me for doing so. I found a new pulmonologist. Over the following years no pulmonologist knew much about mac or how to treat it. I was VERY sick for a number of years and was told I was headed for a lung transplant by my local dr. He suggested that I go to Florida and seek help at Mayo. Mayo dr agreed, I was getting close to needing a transplant. That was in 2013. I was tested for pre-qualifying for a double lung transplant in 2016. I was placed on the 'deferred' list because I was not quite bad enough to get listed yet. I have been under care at the Mayo Clinic since 2013 and today, I feel like a normal human being! I once couldn't walk 15 feet without stopping to catch my breath. I can now walk many blocks and ride my bike 12 miles. My point is, never give up on yourself. Good medical care can make a huge difference. I have a feeling that your grief is making your other health issues feel that much worse. The mind and body are very much connected. I hope that you will take the time to read over older posts and glean some helpful information about dealing with mac. It would be great if you could get to one of the Mayo clinics. Besides having the best doctors (people come from all over the world to see them); they are always compassionate and respectful of their patients. I am here for you friend, as well as others in this group. You are not alone in this. Getting to GOOD medical help is what you need. I would be happy to look up the nearest medical facility that may be better equipted to deal with mac. May I ask where you live?

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@desperada, Hi, There is a nice little Marriott right next to the Mayo Clinic. You can see the clinic from the hotel, walking to the clinic is an easy short walk. There is a nice little desert trail from clinic to hotel if you want to take that. Good luck. Renee

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