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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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?
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?
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.
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
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.
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.
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
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
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.
Nancy I don’t know what kind of Abscessis I have….but I know it’s very serious …requiring oral as well as 3 daily IV antibiotics and surgery. My cavity or hole and massive infection is concerning. I’m trying to be positive and I am grateful for a great care team but I am trembling with subconscious anxiety. Is there a way we may communicate privately? I’d like to know about your condition and management.
Hi, I have been a bit absent from the site and comments for a few weeks as I have had other medical issues to take care of daily. I have been diagnosed with Abscessis Massiliense, which is slightly different than abscessis and treatment seems to be different; however, until I meet with Dr. Huitt at NJH I don't have much to share. I will be going there on the 17th and 18th and will connect with you after my visit; meanwhile, I am presently concentrating on some ongoing symptoms with my recent breast cancer surgery. I do hope that you are getting some relief and help with the major stress that you are feeling. I'll check in with you after NJH. Nancy
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