Just found out I have mycobacterium abscessus!

Posted by jammer @jammer, Mar 18, 2020

AM VERY SCARED HAS ANY ELSE HAD THIS STAIN OF THE MYCOBACTERIA. WOULD LOVE TO TALK WITH SOMEONE WHO HAS GONE THROUGH THIS!!!

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@brigby

@thielmann1 Who is your Pulmo @ Stanford? I see Dr. Sung.

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I have been seeing Dr. Ruoss. How do you like Dr. Sung?

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@janrn1

Please let me know how your visit turns out. I have untreated MAC and my Dr.s are not recommending treatment. I would love to know how you met Dr Huitt and would you recommend him to others. Thank you, and bless you as you go forward.

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After fighting MAC for 4 years with antibiotics and no change in my situation at Stanford, I decided to take myself to National Jewish Health and ask to be seen by Dr. Huitt, on the recommendation of a few infectious disease doctors. I called them, they interviewed me extensively, and then set up a 10 day visit at NJH in Denver. My time there was well spent as they gave my an extensive battery of tests and sent me to classes. I have been MAC free for 4 1/2 years now; however, this abscessus has just shown up in my sputum sample, which has been quite discouraging for me. Since Gwen Huitt only focuses on MAC, I found her to be much more knowledgeable than my 2 pulmonologists that treat a variety of diseases, of which MAC is one. I will let you know how visit goes with her. Nancy

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@thielmann1

After fighting MAC for 4 years with antibiotics and no change in my situation at Stanford, I decided to take myself to National Jewish Health and ask to be seen by Dr. Huitt, on the recommendation of a few infectious disease doctors. I called them, they interviewed me extensively, and then set up a 10 day visit at NJH in Denver. My time there was well spent as they gave my an extensive battery of tests and sent me to classes. I have been MAC free for 4 1/2 years now; however, this abscessus has just shown up in my sputum sample, which has been quite discouraging for me. Since Gwen Huitt only focuses on MAC, I found her to be much more knowledgeable than my 2 pulmonologists that treat a variety of diseases, of which MAC is one. I will let you know how visit goes with her. Nancy

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Hi Nancy. Yes! Please do check back and let us know what you learn. Good luck with everything. -Terri

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@thielmann1

I too have just recently been diagnosed with abscesses after being MAC free for last 4 1/2 years. Like you, I was disappointed and anxious as I learned that this is a more agressive bacteria and more difficult to get rid of than MAC. My doctor at NJH, Dr. Huitt, said that right now she wouldn’t treat it as there are only a few colonies; however my pulmonologist at Stanford said I should be treated right away with Amikacin via IV 3 x a week, and take Azithromycin. I am currently seeing up a trip to NJH to see Dr. Huitt in person to discuss further. I will keep you posted. Thank you fir posting this. It is comforting to talk with others about this new and emerging bacteria.

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Nancy, are you doing any nebulized saline now to at least try to thwart the infection for now? You may want to question the taking of azithromycin just yet as many mac experienced doctors prefer to use that drug as a last resort. It is considered a 'big gun' so to speak, and the fear is that your abscessus could become resistant to it and then you won't have many options. Mayo drs like to try other antibiotics first.

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@windwalker

Nancy, are you doing any nebulized saline now to at least try to thwart the infection for now? You may want to question the taking of azithromycin just yet as many mac experienced doctors prefer to use that drug as a last resort. It is considered a 'big gun' so to speak, and the fear is that your abscessus could become resistant to it and then you won't have many options. Mayo drs like to try other antibiotics first.

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Thank you. Do you know what other drugs they prescribe?

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@windwalker

Nancy, are you doing any nebulized saline now to at least try to thwart the infection for now? You may want to question the taking of azithromycin just yet as many mac experienced doctors prefer to use that drug as a last resort. It is considered a 'big gun' so to speak, and the fear is that your abscessus could become resistant to it and then you won't have many options. Mayo drs like to try other antibiotics first.

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Yes, I do a nebulizer with aerobika 2x a day with 7% saline solution. Do think this alone could get rid of the new bacteria or do you need to take antibiotics?

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@thielmann1

Thank you. Do you know what other drugs they prescribe?

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Hi Nancy, It's that old answer "It depends" – A sensitivity test is run on the culture to see which drug(s) have the best effect on the bacteria. Also, there is often a repeat sputum culture to confirm you have M. abscessus, and how many colonies, before treatment begins. NJH is the best place you can goto treat it.
Sue

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@thielmann1

After fighting MAC for 4 years with antibiotics and no change in my situation at Stanford, I decided to take myself to National Jewish Health and ask to be seen by Dr. Huitt, on the recommendation of a few infectious disease doctors. I called them, they interviewed me extensively, and then set up a 10 day visit at NJH in Denver. My time there was well spent as they gave my an extensive battery of tests and sent me to classes. I have been MAC free for 4 1/2 years now; however, this abscessus has just shown up in my sputum sample, which has been quite discouraging for me. Since Gwen Huitt only focuses on MAC, I found her to be much more knowledgeable than my 2 pulmonologists that treat a variety of diseases, of which MAC is one. I will let you know how visit goes with her. Nancy

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Hi Nancy and others reading this….I have had a similar experience . Treated for MAC three years ago at NJH IVs and 18 months on big 3….negative for over a year…now very sick….broncoscopy and grown cultures positive for Abscesses…my doctor at NJH is putting me on a daily IV regime of four active drugs 3 months before surgery and 3 months after Devastating news….my husband will administer my daily IVs thank God he is a wonderful caretaker a d as familiar and disruptive to my body interventions antibiotics are and as uncomfortable/painful 6 months of wearing a pic line is I welcome anything doctors can do to treat this awful disease. I feel horrible.

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I forgot to mention I have a hole or cavity in my lung which doctors say attracted the abscesses. Be extra vigilant all of you who have holes in your lungs. I used a percussion vest and nebulized 7% saline twice daily , ate well, was active, wore a mask and still got very sick. I am weak, quivering, and deeply emotional…..this disease killed one of my sisters and caused another to have a double lung transplant. Prayers welcome…I’m very scared and trying hard to appreciate the life I have, nurture hope and look towards the future with positivity to a time when I can embrace my first granddaughter.

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@hydrang3a

I forgot to mention I have a hole or cavity in my lung which doctors say attracted the abscesses. Be extra vigilant all of you who have holes in your lungs. I used a percussion vest and nebulized 7% saline twice daily , ate well, was active, wore a mask and still got very sick. I am weak, quivering, and deeply emotional…..this disease killed one of my sisters and caused another to have a double lung transplant. Prayers welcome…I’m very scared and trying hard to appreciate the life I have, nurture hope and look towards the future with positivity to a time when I can embrace my first granddaughter.

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Thank you for sharing your current situation. I am sorry to hear how bad you are feeling. I am also scared with this recent diagnosis of abscesses. After spending time with Dr. Huitt at NJH, I had my whole left lung removed because most of it was infected and not working well. I have been MAC free for 4 1/2 years doing just what you were doing with saline solution 2 times a day and being very vigilant. Dr. Huitt says this bacteria is in the water, the air, the soil, etc etc. Who is your doctor at NJH? Are you receiving all of the antibiotics intravenously? How long will you be getting the intravenous drugs? I am getting a line put in next week for Amikacin. I am not at all looking forward to it. I am also scheduled to be at NJH for 2 days in August and will see Dr. Huitt again. I hope that you will continue to let us know of your experience and progress. Take good care of yourself. Its wonderful to hear that you have such a caring husband who is helping you with all of this. Nancy

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@thielmann1

Thank you for sharing your current situation. I am sorry to hear how bad you are feeling. I am also scared with this recent diagnosis of abscesses. After spending time with Dr. Huitt at NJH, I had my whole left lung removed because most of it was infected and not working well. I have been MAC free for 4 1/2 years doing just what you were doing with saline solution 2 times a day and being very vigilant. Dr. Huitt says this bacteria is in the water, the air, the soil, etc etc. Who is your doctor at NJH? Are you receiving all of the antibiotics intravenously? How long will you be getting the intravenous drugs? I am getting a line put in next week for Amikacin. I am not at all looking forward to it. I am also scheduled to be at NJH for 2 days in August and will see Dr. Huitt again. I hope that you will continue to let us know of your experience and progress. Take good care of yourself. Its wonderful to hear that you have such a caring husband who is helping you with all of this. Nancy

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Hi Nancy…glad we have connected. I’ve met Dr. Huitt and know of her great reputation. You are in good hands. 3 out of the 4 antibiotics will be IVs..one is a brand new oral drug that only NJH can deliver. I will be on the drugs 3 mo the…the. 2 weeks in Denver for surgery than another 3 months IV and Oral….a six month ordeal which will probably be followed by many more months of oral antibiotics. Abscesses is scary…..I understand your fear probably better than anyone. I’d love to know about you. Why did you have your lung removed? What drugs were you and are you on? Let’s keep in touch during this long haul . Mary

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@hydrang3a

Hi Nancy…glad we have connected. I’ve met Dr. Huitt and know of her great reputation. You are in good hands. 3 out of the 4 antibiotics will be IVs..one is a brand new oral drug that only NJH can deliver. I will be on the drugs 3 mo the…the. 2 weeks in Denver for surgery than another 3 months IV and Oral….a six month ordeal which will probably be followed by many more months of oral antibiotics. Abscesses is scary…..I understand your fear probably better than anyone. I’d love to know about you. Why did you have your lung removed? What drugs were you and are you on? Let’s keep in touch during this long haul . Mary

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I had my lung removed because tests showed that it was only working 23% and Dr. Huitt advised removal as it was filled also with bacteria. I took Rifampin, ethambutol, and azithromycin for 4 years with no change so I went to NJH and had my lung removed and have been doing very well for the last 4 1/2 years with no bacteria. Just this month, the abscesses massilience has shown up. What kind of abscesses do you have? I will be going to see Dr. Huitt on August 16th.

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