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@katemn

Tutti, re: “administered through a pic line. Has anyone taken a drug this way for their mycobacterium abscessus?”

The FIRST thing I would ask the doctor is WHERE IS YOUR mycobacterium abscessus LOCATED!! When I was googling mycobacterium abscessus .. I didn’t realize it could be in MORE places than the lungs! It can be caused by dental work etc .. I had no idea. SO .. if it is in your lungs .. it would make sense to me to INHALE it by a nebulizer DIRECTLY INTO YOUR LUNGS!! A pic line would get it into YOUR blood stream is my understanding!

So do you due diligence and find out WHERE YOUR mycobacterium abscessus IS .. it is YOUR body!! No body cares about it more than you do! IF it IS in your lungs .. personally I would get my fanny to a SECOND OPINION Infectious Disease Pulmonologist! Just my opinion.

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Tutti, being a former accountant I researched like crazy prior to taking any of the meds .. I just looked through my notes on Amikacin .. found the following .. do with it what you will .. it is ONLY ONE PERSON’S EXPERIENCE AND OPINION .. I just took note of it and put it into my personal notes and am sharing it with you .. it DOES NOT MEAN IT WOULD HAPPEN TO YOU! But personally I would prefer to the hassle of inhaling the Amikacin to a pic line .. just me. (google Pic Line Infection Risks .. interesting)

I saw that some people had been on amikacin to treat this also, has anyone else experienced hearing loss with amikacin? I have lost my hearing due to it, and now have a cochlear implant. I have to say that is one of the harder things that i’ve had to deal with so I am always looking for others who may have experienced the same thing! .. I used IV amikacin for about 6 months and then switched to inhaled amikacin. The hearing loss did not get worse. I was told that inhaled amikacin doesn’t go to your blood directly and that’s why it would not affect the hearing loss like the IV does)

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Replies to "Tutti, re: "administered through a pic line. Has anyone taken a drug this way for their..."

Hi Katherine… Just wanted to tell you I’m going for a second opinion, I
got an appt with your, Dr. Akasmit. My appt is June 2. I’m so happy to
being seeing a Dr who is really knowledgeable about this disease. I’ve been
going to Case Western Reserve university hospital in Cleveland. Very large
teaching hospital, I see a pulmonary dr and infectious disease dr. The
infectious disease dr. has only seen 1 other patient with the
microbacterium abscessus that I have. I have never felt comfortable after
hearing that. Thanks so much for telling how much confidence you have in
Dr. Akasmit. Thanks again, Tutti

Hi Tutti,
I also have been seeing Dr Aksamit. I will be curious what he suggests for you. I go back on June 9 for a pulmonary test, CT scan and sputum sample. I just found out I have a bacterial overgrowth in my small intestine so am on antibiotics for that. Probably from the Prilosec I have been on and antibiotics…not the major ones yet. I feel like a druggy.
I don’t know if this is a good thing but I have been disfusing essential oils, pine oil is suppose to help with bacteria.
Keep in touch. The Mayo clinic is very thorough, I wish you the best.
Barb

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