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desperada
@desperada

Posts: 17
Joined: Aug 17, 2018

Untreated MAC

Posted by @desperada, Thu, Aug 16 10:20pm

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.

REPLY

@desperada I was diagnosed with bronc and mac about ten years ago. I chose not to take the antibiotics. My doctor supported my choice. I too live alone. I'm 81 and am totally on my own except for my darling two cats. I take each day as it comes.Like everyone else, I have good days and bad. I sympathize with your many illnesses and the loss of your husband. It's a pile of trouble you're dealing with. Good for you for walking your dogs. Activity, difficult a it may be is important..it keeps going. I take various herbs that Terri and others have suggested. I try to eat well though I have very little appetite. I go to the gym twice a week and life weights with a trainer. I never want to go but when I walk out I feel so much better. Though I rarely eat out any more, I work to keep a few friends. Many have disappeared because I was unreliable saying I would do something and then having to cancel because I wasn't up to going out. I don't blame them. It's just another sides-effect of this lousy disease. I can't imagine how hard this must be for you after just loosing your husband. Wising you strength and wellness …you already seem to have a lot of courage.

@desperada. I am glad that you have found this group but saddened to hear that you have to deal with so much at this time. It sounds like the weight of the world is on your shoulders…. So very sorry. I am hopeful that you will find support here. I just sent you a private message…maybe respond when you feel up to it. My best to you….Kate

@windwalker …Hi Terri…good news…I just got an appointment with Dr. Leventhal at Mayo for a second opinion! My insurance finally came through!!

Liked by tdrell

@desperado…hi there…am so sorry to hear that you are carrying so much….I must tell you though, I was scared to death to start the big 3 antibiotics, but after some side effects the first 6 weeks, everything went away….I waited as long as I could before starting them…..sometimes they only want u to take them 3 times a week…walking as often as you can helps with anxiety and depression as well.

@alleycatkate

@windwalker …Hi Terri…good news…I just got an appointment with Dr. Leventhal at Mayo for a second opinion! My insurance finally came through!!

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@alleycatkate Oh happy day!!!! I am so thrilled for you!

Liked by alleycatkate

@alleycatkate

@windwalker …Hi Terri…good news…I just got an appointment with Dr. Leventhal at Mayo for a second opinion! My insurance finally came through!!

Jump to this post

@alleycatkate What day is your appt? I want to follow up and see what you thought of your Mayo experience.

@alleycatkate

@windwalker …Hi Terri…good news…I just got an appointment with Dr. Leventhal at Mayo for a second opinion! My insurance finally came through!!

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@windwalker …Oct 4! Looking forward to meeting Dr Leventhal! Will keep you posted.

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?

@alleycatkate

@windwalker …Hi Terri…good news…I just got an appointment with Dr. Leventhal at Mayo for a second opinion! My insurance finally came through!!

Jump to this post

@alleycatkate Woo hoo! I just adore that man! I think you will too.

Liked by alleycatkate

@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.

@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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I live in Menifee C a. I just had an appointment with my PCP this morning. When I shared my decision with him, he pretty much took on the attitude that I was no longer worth much more of his time. I tried to have a discussion with him – he just smiled kind of pathetically, didn't answer me or pay much attention.
A lot of influence in my decision has to do with the poor health care, the lack of knowledge/experience and just apathy.
My ID and Pulmonologist push my follow up appointments so far out, I don't get a chance to get my issues addressed. I don't see anywhere where my strain has been identified. I'm not even sure what my severity is.
My PCP this morning gives me 2 years! EVERY SINGLE THING I have to initiate myself. I want to get a follow-up CT to see my progression. He left the exam room leaving me sitting there and didn't write me an order. WTH! I just left and came home to take care of the dogs and have lunch.

@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! I also asked for some respiratory PT – he said OK – and didn't write me an order. He recommended I take Reishi Mushroom, and OregaBiotic for my immune system. Next week I go to se another doctor to get complete PFT's including 3D challenge. I'm thinking if he treats me like the others, why bother! Honestly, my dogs get treated better by their Veterinarian! Hey! Maybe I should discuss my issues with her next month when I take my dog for his B12 – HA!

@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.

Liked by tdrell

@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

@desperada Absolutely, we are sisters!

Liked by tdrell

@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 Ha! Your vet might be a good one for you!

Liked by tdrell

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