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.

@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?

Jump to this post

@ling123 That's right Ling, it needs to be cultured for a mac diagnosis. I am glad you mentioned that because it seemed to have jarred @desperado's memory of her bronchoscopy sample. I swear, I love all of you!

REPLY
@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?

Jump to this post

@desperada On what grounds did your dr give you a two year expiration date? You can live out your natural life span with fibromyalgia and mac. I asked my dr at Mayo how long he thought I had. He gave me an odd look and said "We don't go there, our job is to keep you alive." Good answer!!

Liked by heathert, tdrell

REPLY
@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?

Jump to this post

Terri, I asked my doctor too how long I had to live. He said until a bus ran over me.

REPLY
@jkiemen

@desperada I just wanted to tell you that I have not had a horrible experience with the antibiotics. I am making sure to take a high dose probiotic every day and have been OK. Not everyone gets every side effect listed. There are also complementary medications you can also try. Our group has lots of Ideas to offer you. Keep on with our group, you are with people that have lots of experience with this condition and support each other like sisters.

Jump to this post

And there are a few brothers amongst us too. 🙂

REPLY
@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?

Jump to this post

@flib Ba, ha, ha!

REPLY
@jkiemen

@desperada I just wanted to tell you that I have not had a horrible experience with the antibiotics. I am making sure to take a high dose probiotic every day and have been OK. Not everyone gets every side effect listed. There are also complementary medications you can also try. Our group has lots of Ideas to offer you. Keep on with our group, you are with people that have lots of experience with this condition and support each other like sisters.

Jump to this post

@colleenyoung That is true.

REPLY

@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

REPLY
@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

Jump to this post

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!

REPLY
@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

Jump to this post

@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

REPLY
@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

Jump to this post

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.

Liked by tdrell

REPLY

@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

REPLY
@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

Jump to this post

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

REPLY
@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

Jump to this post

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.

Liked by tdrell

REPLY

Amen

REPLY
@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

Jump to this post

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

REPLY
Please login or register to post a reply.