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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!
If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Thanks for the information and I do understand. But I was diagnosed with cold by the doctors and I knew they was wrong because the symptoms didn't fit and the medication didn't help. So, how do I leave it all to the doctors . I would tell them they were wrong and I could tell , all it did was make them mad .
Thank you , why are my post not being placed where I reply ?
Bruce, here is what I would do if I was sitting in your shoes re: your denial of disability claim. KNOW that you are ALWAYS denied on the first claim .. they WANT you to give up! Do NOT give up! Make the below phone call .. NOW!!
1. CONTACT: Legal Aid of North Carolina Website http://www.legalaidnc.org/Pages/Homepage.aspx
Legal services in Asheville, North Carolina · Burton Street Address: 547 Haywood Rd, Asheville, NC 28806
Phone: (877) 579-7562
2. UNDERSTAND YOUR RIGHTS: https://www.legal-aid.org/en/civil/civilpractice/disabilityadvocacyproject.aspx
Disability Advocacy Project
The Disability Advocacy Project provides a full range of legal services for children and adults who are eligible for, but have been denied or terminated from:
Disability benefits
Retirement benefits
Other benefits under the Supplemental Security Income (SSI) or Social Security (OASDI) programs.
The Society represents children and adults with their applications, administrative hearings, and court appeals, and gives advice and counseling.
Did you know… example of New York: Thousands of New Yorkers who qualify for disability benefits from the federal government instead receive public assistance from New York City. By helping these children and adults to receive the federal disability benefits to which they are entitled, the Society saves the City and State millions of dollars each year.
Case Example In one case, the Society represented an 11-year-old boy who had experienced several traumatic events. When he was four years old, his father was murdered. His uncle — who had become his surrogate father — was subsequently murdered, his depressed mother was prone to suicide attempts, and his mother’s boyfriend was abusive. Despite the psychological trauma inflicted by these circumstances, the boy was denied SSI disability benefits. With the Society’s help, the denial was reversed and the boy was awarded $13,500 in retroactive SSI benefits as well as ongoing monthly benefits.
Getting help with getting on disability would be a good first step in gaining medical help .. serenity which will help you overall. Remember .. there is a tremendous connection between mind and body. Stress affects our bodies also. Please DO make this phone call .. get started! We are all behind you .. rooting for you! Sending you lots of positive energy! Hugs! Katherine
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3 ReactionsBruce, I truly do understand. Others on our Forum have had the same experience .. perhaps they can jump in and tell you how THEY handled this type of situation?
Personally in one situation I told the doctor "I have lived in this body longer than you have been a doctor. I KNOW my body and I KNOW what you are saying is not correct for my body. I would like xxxxxx further testing for my comfort level. If you do not feel you can order this/these tests I would like to see another doctor in this practice or please order copies of 'Any/All medical records' for me to seek a second opinion elsewhere."
Bruce, I will not say this conversation with the doctor was comfortable .. BUT we MUST be our OWN best advocate. These doctors are our EMPLOYEES .. WE are the EMPLOYERS!! They are NOT Gods as our parent's generation revered them to be! For a doctor to sluff you off in this manner is NOT ok.
Take Charge of your health .. nobody else is going to do it for you!! Frankly it is do ... or die .. at this point it is in your hands. I hate to be so honest .. but with all that you and your wife have going on .. you are going to have to "man up" .. and get moving .. it is "show time". Talk is cheap .. you need to take action .. make those phone calls .. your wife is depending on you. If you won't do it for yourself .. do it for her. I KNOW this is really tough with all you have going on .. but just do it. I am sending you LOTS of positive energy AND a big Hug! Katherine
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2 ReactionsHi Bruce Kate is right andI'm so glad she gave such sound advice; in some way we all decide, especially with disability, whether we wish to live or die. I'm so concerned about what it might be in your home that may perhaps be affecting you and your dear wife so severely. Do you have good support? A church, family, neighbors, or friends who care about you? Most cities and towns have someone who can come and test your home for toxins, mold, etc. surely there must be a caring person in social services who can help navigate some of this with you so you can begin to go forward in your lives. Please know people care very much, and I LOVE that Kate mentioned the mind-body connection. The foods we eat can harm or heal us too. Many people on this Forum know how awful suffering is. There is a God who loves you, and created you for a purpose. God does not make mistakes! With Love, JMS : )
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2 ReactionsJMS, what a wonderful response! Thank you! I had not thought of calling for Social Service Agencies. You are SO correct .. they absolutely could help Bruce and his wife navigate some of these things! It is just great that you stepped up to the plate! Sending you a hug and so glad you are helping! Katherine
@bruce668, I don't know if this MIGHT be a helpful starting point or not? Hope it does! Know that we are all here for you! Katherine https://www.buncombecounty.org/Governing/Depts/PublicAssistance/Default.aspx
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2 ReactionsWell dear friend you started this train of support and strength for Bruce and his wife. I simply got on board and hooked up my engine LOL! You stepped up with loads of strength, and I knew stepping up too was the right thing to do. We are "to share one another's burdens," which is how anything gets done, with God's loving hands and guidance. Seriously, I PRAY for the right person, the right information, for God to direct my steps ... and He ALWAYS DOES. God bless you for all you do for others and how much you care. It is so purpose-filled for you. AMEN. : )
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2 ReactionsJMS .. beautifully said .. thank you! Katherine
Bruce...I was denied 5 times over 3 years and was at last approved last March...took going before a judge...and my disability is quite visible... the first thing I did was hire a disability attorney...they work on consignment so you pay nothing until you win then their compensation is taken out of your back benefits (you get back payments from 6 months after you first claimed up to the present in one lump sum). Having an attorney vastly increases your chances of being approved. Go get one!
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1 ReactionGiven that Chapel Hill is 3.5 hours away from you, recommend you call the docs recommended to you here, tell the staff of your dilemma, and ask if the doc can recommend anyone near you. Also, please see my reply to Kate below re: disability.
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