Untreated MAC

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.

@tdrell

@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

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

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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@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.

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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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.

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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@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

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@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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@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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Thank you. I was going to ask you which Mayo Clinic. But Mayo is out for me anyway. Arizona won't take any new patients and the others are too far.
I'm setting my sights on National Jewish Health in Denver. Rated #1. Still waiting to hear from my e-mail Pal in Colorado Springs.

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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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.

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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@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

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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Google CBD. It doesn't seem to be legal is your State, except for seizures.

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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@desperada…..it clicked in my brain what CBD is…and no …Wisconsin will be the last state to legalize it.tdrell

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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@desperada I don’t have any weight loss, night sweats, fever, fatigue or constant phlegmy cough. I was originally diagnosed when I had surgery in December 2016 to remove and biopsy a lung nodule that they wanted to make sure was not cancer. I had never even heard about MAI/MAC before that. I had a 3 day sputum test last summer and it showed traces of both MAI and MAC. Other than the lung nodules, (that are small and come and go), which my Dr thinks is due to aspiration from GERD, I don’t have any symptoms of being actively sick. That is why I take as many precautions I can to avoid being infected with any additional bacteria. I do have bronchiectasis also, so I use the Aerobika twice a day to clear my lungs. When I go to my next appointment I’m going to ask about using the nebulized saline to make my lungs a less habitable place for bacteria, which I learned about from others on this forum. I have heard mixed things about whether MAC could be cured. Some have said they took the antibiotics and remain MAC free for years. Others have gotten reinfected. I guess it depends on the health of your lungs and if you have a comorbid illness that makes your lungs a nice place for the MAC bugs to thrive.
So sorry about the wildfires in your area. I’m glad it’s staying away from you. It’s a good idea to wear a mask. I also wear a mask when we go on motorcycle road trips. I don’t want to take a chance inhaling any of that road dirt that gets kicked up especially through road construction sites in many states. We just came back from a road trip to Canada. I also wore my mask when we drove through farmland.
Gina K

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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That's very interesting. I don't have weight loss – in fact the opposite. I have fatigue but that's always been the case from my Firbromyalgia. I don't have phlegmy cough either. Where do you see this doctor?
I think where I live they only know one thing to do – bot experienced enough or exposed to many cases – so they just diagnose the worst case scenario.
I've always been kind of phobic about germs. I'm always removing that rubber gasket from the sink disposal – harbors so much crud under there in the folds. I also throw away the fabric softener dispenser and replace it since I removed it once and discovered all black mold under it! I called P&G and it took me forever to find out the MAIN ingredient in it – they told me it's animal fat! That's what makes the fabric soft. They show the ingredient under it's chemical identification so people don't know. I only use the "free and gentle" version now sparingly, combined with plastic dryer balls. Honestly – everything is toxic. Now my Cheerios have Roundup weed killer in 'em. WTH!
They mentioned getting me this compression vest because I have bronchiectasis also.
I see lots of bikers here in SoCal. They all wear masks anyway – I like the ones that look like a skull face – HA! Funny as heck seeing them on the freeway! They look like one of Captain Sparrow's friends!
They have this HUGE biker rally for ladies only every year here in Joshua Tree. They come from all over. It's like a three or four day event. No guys allowed and I think you have to have a bike.
I grew up in Ontario. You must have had a great time. I used to go on bike trips – then my back got bad. Couldn't find a passenger seat that reclined – darn!

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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@desperada I see Dr. Kamelhar in NYC. He was one of the specialists listed on the NTM website. I’m sure there are lots of bikers in SoCal, you have the perfect weather for it. I wear a mask I purchased from Cambridge Mask Co. It filters out PM2.5 particles. It was a mask recommended by the original mentor of the MAC forum, Katherine. That rally in Joshua Tree must be great. Maybe if I’m ever in the area around the time of that rally I’ll get to it. I usually remove my fabric softener dispenser and wash it because it gets clogged up, but I’ve never seen mold in it. That’s kind of gross! With compromised lungs we have to watch out for breathing in any additional mold from everything!

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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@desperada Brochiectasis is incurable, which is one of the major reasons that people are infected with MAC. MAC can be cleared, by itself without treatment for some or by antibiotics for others. It is also possible that the infection is kept at bay with no further development necessary for long periods of time. But It can also recur for those with bronchiectasis or other diseases that weaken their immune system.

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@alleycatkate

@desperada …checking Best Hospitals for Pulmonary by US News and Health…. Your UCLA Medical Center is rated the 9th best in the country! Maybe you need to get a referral there from your GP? Not sure why you are running into bad luck in scheduling an apt.??? Also, Maybe you could go for a 2nd opinion after you get your test results back. ?? Here are the national listings of best pulmonary hospitals: https://health.usnews.com/best-hospitals/rankings/pulmonology

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I think it is THC that is illegal in some states, not CBD that you can buy online.It has no high effect. I've taken it for several months…helps me sleep and may be helping my lungs. I get a cat scan next week and I'll see then. Flib

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