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New Diagnosis of MAC/MAI & I'm scared
MAC & Bronchiectasis | Last Active: Oct 13, 2022 | Replies (349)Comment receiving replies
When i ask dr about the bones and digestive system, he says that is not what i do. I only do lungs. you need to talk to your pcp. It has been a hard journey. I started getting sick 2 years after my only child died. i exercised 4 days a week and started getting dizzy at classes and out of breath. I was diagnosed with just infections for first year til i got pneumonia and shingles. Then I was sent to specialist and he did sputum tests and found out it was micro bacterium avium intercellulare. I was then sent to a disease dr who made me go thru the tests again and i tested positive again. She then put me on 3 powerful antibiotics for almost a year, did blood work every month and then another ct scan to then tell me the meds did not work. She wanted to put me on more meds, but i declined. I suffered for months with stomach cramps, diarrhea and just so sick on the meds. So now i am with lung dr who says every 6 months. lets do another ct scan and talk about it then. I feel like dr does not care. I left his office last week crying.
Replies to "When i ask dr about the bones and digestive system, he says that is not what..."
@cindyrue ....my heart goes out to you for all you have endured...will your insurance cover going for second opinions....either NJH or Mayo? Tdrell
@cindyrue Hi Cindy. I know the frustration that you feel from not getting the treatment and support that you need right now. I have been in your shoes.There are other treatment options out there besides the Big 3 antibiotics. I hate calling them the Big 3 and want to find another name for that combo because they really aren't that powerful according to my doctor at Mayo Clinic. You can click on my photo icon and my bio will pop up and you can read how I was treated, and there are new inhalable antibiotics now available too. There is a wealth of information in our past conversations and on the Discussion Board located on the main Mac & Bronchiectasis group page. You must be your own best health advocate. Learn all that you can about this disease; not only on this site, but others like NJH.org, NIH.gov, NTMinfo.org etc. If you are too tired, upset, or sick to do this legwork, I understand. Feel free to pick my brain. I may not know the answers, but I can help you to try to find them. Hang in there, keep looking for what will make you well again. That goes for mental health also. Losing your child is a tough one, no words of comfort can fill that void. Some say counceling may teach you some coping skills to deal with the grief, I don't know. My daughter just lost her closest friend to suicide a few weeks back and I spent days listening to her cry and howl like a wild animal in grief. The pain of loss was unbearable. It was heart-breaking. I put her into counceling the next week and it is helping her. Stress and depression can cause weakness in your immune system, and then illness ensues; so please take care of yourself.
cindyrue....you have been through so much....if you can try and get into Mayo Clinic or National...they are the best...this support is an incredible support system both emotionally, and info..no that you are being heard and guided in this sometimes difficult journey of lufe💖
@cindyrue Hello Cindy, after reading this post I understand better about your journey. Earlier I asked abt lab testing, and no longer have that question, so please disregard. Thank you for sharing...you are a survivor!
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@cindyrue I am so sorry for you. I think the problem with doctors isn’t that they don’t care, but they are frustrated by this disease. Clearly the meds did not seem to help you but only made you more miserable. I guess then a doctor feels that the “cure is worse than the disease” so they decide to monitor it every six months. Maybe you could ask them about sending you out to National Jewish Health or a particular Mayo near you. Having had shingles doesn’t help either especially if you have post shingles pain (without the rash). Eating a nutritious diet is very important with MAC. I’m not an exercise kind of gal. Vacuuming is good enough for me. I am also so very sorry about your child. I can’t even imagine that pain. Praying for you. Some of us are sicker than others, but we are all in this together. (irene5)