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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
I just wanted to share my experience in 2014 I did undergo bronchoscopy procedure without any result of lab test my doctor ASSUMED that I have MDR TB or multi drug resistant tb although my xray and xt scan is negative from TB he prescribed streptomycin and before I was discharge at the hospital he discontinued the streptomycin and asked me to take gene expert test. While I was at the DOTS clinic. For those who are not aware what DOTS is this is a govertment program for drug resistant TB patient who undergo treatment for free but they need to go the the clinic everyday to take their medicine. While I was there, I saw their patients ang they look very sick and fragile they are very thin almost like a skeleton with a skin. I already knew that I dont have TB since compared to them I look very healthy. They even asked me if who is the patient and was suprised when they learned that it was me. While waiting and observing patients around me I felt depressed and was really afraid if my result will be positive. I do not know if I can endure going there everyday and seeing this people who looks very sick. I raelly prayed for miracle and my prayers were answered Im negative from TB so they did not continue the gene expert test. I went back to my pulmonologist and he said we need to start medication while waiting for the result of my culture test. After 45 days I got the result and Im positive of NTM. After taking months and months of taking antibiotics I always tell him that I dont feel any improvement at all. he said that this is normal since it will take more than a year to cure MOTT. After 18 months my culture lab test was positive again for MOTT he again referred me to DOTS and requested for gene expert test Thats the time that I transferred to a different pulmunologist and the new pulmonologist is the one who suggested that I need to get a 2nd opinion from infectious disease specialist. I wanted to sue my ist pulmonologist Ive wasted time and money for my medicine due to his lack of knowledge about treating NTM.
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Hi@acila I live here in the philippines and gratefull that I found this forum. Information here in forum is really helpfull its nice to talk to people who undertstand what your talking and what you are going through. Ive been very diligent in going to the doctor do all the lab test needed. Im gratefull for having a medical insurance its a big help for me. I am also happy that I am single thats why I am able to afford my medication Im not a burden to any of my family member. Ive been going through this battle since 2009 and was only diagnosed of ntm 2014. I live a normal life everyday I still feel very strong physically and emotionally. PRAYING for another miracle that result of my culture test is negative I will get the result befor Christmas day. Hugs and prayers to everyone
Hello Imee, see my other post to you about educating yourself .. the above is a perfect example! Heavens you could have been exposed to TB in all the time you were forced to go the TB Clinic .. BUT that is past .. all you can now concentrate on is getting well .. serenity .. and living life as fully as you possibly can! Hugs! Katherine
Imee, Cila is giving you REALLY good advice! If you take time to read the pages of previous posts .. you will not only learn a great deal about our disease .. about our shared journey .. but also find a community of awfully nice supportive people!
Katherine im really trying to backread all the previous post, you are right educating yourself about the disease is really important. My doctor did not even explain to me if what is NTM I just googled it. When I was taking ethambutol i've learned online that this might impair your vision and I was the one who told him if I need to see an optalmologist to check if the medicine is affecting my eye sight and im glad it did not. I make sure to bring out the phlegm everyday and I also do some deep breathing excercise everyday. I was thinking to undergo broncoscopy/bronchial wash to remove phlegm but I will ask my doctor first if this will be helpfull for me. Many thanks again guys.
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Hi imeehaigt, welcome! I'm glad you find this forum. not many Dr. knows about MAC. Do you in states or Philippines? My own family Dr. don't know anything about NTM ha said I know more about the MAC than he does now. You can read all the post and hopefully will help you.