1. < MAC & Bronchiectasis

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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 17, 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 Personally, it I was you, I'd drive over that mountain range and go to the Mayo Clinic in Phoenix, Az. (Mesa) you do not need a referal. You can check to see if your insurance covers you there. All tests are done in one day, maybe two. Test results are back the same day. At the end of the day, you meet with the pulmonologist and that dr will explain what is going on and get a treatment plan together for you. Bear in mind that a sputem test for mac takes about 8 weeks to grow and do a suseptability test on it. That is a test to see what antibiotics actually work on your mac. Not all mac is the same, so there is no set antibiotic to be prescribed. It would be wise to call your dr's office and ask for a hard copy of your lab results. You should keep a file at home for those. Tell them you want the results complete with colony size and the suseptibility test. If they did not have that info in your lab test, then they are not being accurate or thorough which would cause me to be suspect of how much they really know about mac. What are your thoughts?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 17, 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 No, don't say that! They are just busy with too many patients. Lung diseases are on the rise you know. Usually the ones not taking on new patients are the best ones; everybody wants to go to them. Have your name put on a waiting list while you keep shopping for a good doctor.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 17, 2018
In reply to @jkiemen "@desperada I guess it is time to get another opinion or go to an academic center...." + (show)
@jkiemen

@desperada I guess it is time to get another opinion or go to an academic center. Our group does have some good ideas for alternatives.

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@desperada University of San Diego I believe has a very good pulmonology dept. I know that their sister medical university in San Fran. is highly rated for pulmonology.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 17, 2018
In reply to @jkiemen "@desperada I guess it is time to get another opinion or go to an academic center...." + (show)
@jkiemen

@desperada I guess it is time to get another opinion or go to an academic center. Our group does have some good ideas for alternatives.

Jump to this post

Call the one in Florida and Minnisota. See if you can get in there. You don't need a lengthy rental. Your appts will only take 1-3 days. Perhaps have a dog sitter service come to your home.....

REPLY
desperada | @desperada | Aug 17, 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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THERE IS NO WAITING LIST! NOT AT EITHER PLACE! I told them I was going to drive there, and they told me DON'T come!!!!! I even called Admin in Minnesota - they told me DON'T GO!!!!!!

You're right, no one did a sputum test. I know they aren't taking good care of me! They won't even give me the definitive reports they have. Believe it or not - this is getting too nuts - keeping my own medical records from me. It's illegal, but I have to fight a different war right now! It does say on the CT scan I have the mycobacterium avium - just generalized - not specific of course. I know that makes a difference in treatment. I am not losing weight or coughing up blood - I think they're making me sicker than I am - maybe.
I called down to Scripps La Jolla - I am an established patient there from a few years ago.
I faxed what I have to their ID Dept. Of course it's Friday - the doctor will look at my paperwork next week and let me know if they will see me.
Honestly - I had a war with the girl on the phone - she wanted it faxed ONLY from the doctor's office over "secure" fax. I told her I don't care - just take my fax PLEEEEEEEEEZZZ!
So I sent off what I have. I'm putting this to bed for the week end. Going to grab a cup of coffee, some CBD chocolate, the dogs and just try and relax.
My husband was 100% Service Connected Disabled, so I get a few benefits.
Someone from the Vet Center is coming here today - My Anxiety Disorder has progressed to PTSD! My husband was on life support and I had to sign off on the DNR. He went for a simple exploratory straight to life support. I never got to speak to him. He died in the middle of the night before I got to the hospital. Al that totally sent me over the edge. Then this all hits the fan! Lordy!
So all of these things you all are telling me are VERY MUCH appreciated - probably if I was a bit more "normal," I could handle and process it much better. But this is the best I can do - I can only slay one crappy dragon at a time.
All of you have a terrific week end and thanks!

REPLY
ling123 | @ling123 | Aug 17, 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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How did they diagnose you with MAC without a single sputum test? CT scan can show that your lungs are not healthy. Correct me if I'm wrong, @windwalker Terry, but I don't believe the CT scan or chest X-ray can show whether you have a bacterial infection or not without sputum test result.

REPLY
desperada | @desperada | Aug 17, 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?

Jump to this post

Oh! You know what? They probably took a culture when they performed the bronchoscopy on June 12. I guess that's the culture they said takes 8-12 weeks. So I'm still waiting on that! Things are so messed up. I ask the doctor's office for copies of results and they give me summaries. I'll figure it out next week. Everyone's gone for the week end now anyway.

REPLY
alleycatkate | @alleycatkate | Aug 17, 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?

Jump to this post

@desperada...that is correct about growing a culture. The minimum time to grow MAC is 8 weeks...So if they do not have the results back yet then they cannot give the results to you. I wound up having to go to the hospital that did my bronchoscopy to get a hard copy of my lab results as it was the only place to keep the lab work information on record. My Dr's office said they did not have a copy. Keep in mind that MAC is slow growing so your angst over getting a Dr immediately is only upsetting you. You WILL find a good Dr that will care for you. Until you get your results, you do not even know if you have MAC. Also keep in mind that your body is no different then before the bronchoscopy...the only difference now is that you know you might have an issue. (or maybe not?) Many folks have this disease for years before it is discovered.....and there are probably plenty more walking around with it that have no idea they have it. So we are way ahead of the game with the knowledge that we do have an issue which gives us an opportunity to address it in one fashion or another. I am sorry ....but what in the world is the 2 year nonsense that your pulmonologist said to you. I think I might take a swing at him if he ever crossed my path.
Please have a good weekend...maybe with a great old movie with your dogs by your side. Bring on the stuff you love! Kate

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 17, 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 "One crappy dragon at a time". I can tell you have a good sense of humor despite everything. Please don't fret too much about your mac. Avium bacterium grows very slowly, so you have time to plan your war. I and a few other members have noticed that we came down with our mac infections after a stressful traumatic death in the family. STRESS is a killer. This mac is not going to spread and get you any time soon, so let that dragon sleep for the moment. I have a favorite saying; "Don't let the worries of tomorrow steal from the joys of today." I think you are trying to live in the moment this weekend; enjoying your coffee and your pups. What kind of doggies do you have?

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 17, 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?

Jump to this post

@desperada Sounds like your culture hasn't finished growing yet, so they cannot give you what they don't have yet.

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