Does anyone have abscessus?

I have Absessus and pseudomonas. The Absessus was diagnosed end of last year. I was being treated for pseudomonas at the time. I had been hospitalized for IV meds and sent home with a line. The ID suspected MAC, but came back with Ab. He ordered another iv line and iv Imipenem and two oral meds. I started those in January and didn’t make it through the day due to a reaction to the Imipenem. His next course of treatment was not feasible. Infusions twice a day at the hospital 40 minutes away for three months! Plus oral meds.
I switched doctors and that hasn’t been any better. I did have a bronchoscopy in February that confirmed the diagnosis. I’m currently having no treatments and have been put on the “back burner” while she investigates. That was 4 months ago. She had ordered a PICC line for Tigecycline, Bactrim and Arikayce nebulizer. It was a mess. She had no clue about Arikayce and didn’t understand why the local pharmacy had not filled it. I told her my research showed my insurance did not cover and my out of pocket was $16,000 a month!! Plus no one ordered my PICC line, but my meds were ready.
I am having a CT this week ordered by my PC to see what my lungs look like. I also had Covid 4weeks ago! We will decide what path to take after my report.
Treatment for Ab is more intense then MAC and the results are not great.
Probably more than you wanted to hear, but I don’t see a lot of Absessus patients on here and finding a doctor that really knows is difficult.
For now, since I feel ok I’ve decided to take this path. If I seek help, it will have to be long distance and travel is not a great option.

Bamaqueen. Hi. Wow, you've been going through a lot.
I have been dealing with pulmonary issues for five years now -- Bronchiectasis, Pseudomonas, MAC and now M. abscessus. I could not take the Big 3 but once had a PICC line and did several rounds of Tobramycin. I too had COVID and was an inpatient for 8 days. Not on any medications now for about six months. The doctor is going with the "watch and wait" program. I nebulize the 3% and 7% Sodium Chloride twice a day. He will start treatment based on my condition, i.e. appetite, fatigue, any shortness of breath, night sweats. Question: You're having a CT this week? Surely it is not your first. Interesting that was ordered by your primary care doc. I have changed doctors twice. Once because the first pulmonary doc did not have the expertise needed and finally said, "I don't think I can help you." He never offered to do a referral or anything. I found a doc in Atlanta (3 1/2 hrs away) who was great. After a couple of years I had him refer me to B'ham (1 1/2 hrs away). I still wear a mask in certain situations and try to be careful. COVID is around again and I just feel that one more viral or bacterial lung problem may be all I can fight off. Anyway, I just wanted to respond as I saw a lot of similarities between your bio and mine. Blessings.
Faye

Ohmygosh. Thank you
Prayers up for you

I have Absessus and pseudomonas. The Absessus was diagnosed end of last year. I was being treated for pseudomonas at the time. I had been hospitalized for IV meds and sent home with a line. The ID suspected MAC, but came back with Ab. He ordered another iv line and iv Imipenem and two oral meds. I started those in January and didn’t make it through the day due to a reaction to the Imipenem. His next course of treatment was not feasible. Infusions twice a day at the hospital 40 minutes away for three months! Plus oral meds.
I switched doctors and that hasn’t been any better. I did have a bronchoscopy in February that confirmed the diagnosis. I’m currently having no treatments and have been put on the “back burner” while she investigates. That was 4 months ago. She had ordered a PICC line for Tigecycline, Bactrim and Arikayce nebulizer. It was a mess. She had no clue about Arikayce and didn’t understand why the local pharmacy had not filled it. I told her my research showed my insurance did not cover and my out of pocket was $16,000 a month!! Plus no one ordered my PICC line, but my meds were ready.
I am having a CT this week ordered by my PC to see what my lungs look like. I also had Covid 4weeks ago! We will decide what path to take after my report.
Treatment for Ab is more intense then MAC and the results are not great.
Probably more than you wanted to hear, but I don’t see a lot of Absessus patients on here and finding a doctor that really knows is difficult.
For now, since I feel ok I’ve decided to take this path. If I seek help, it will have to be long distance and travel is not a great option.

Thank you for reaching out! Yes, a lot and I left out my 5 vertebral compression fractures last year along with trying to take care of my 99 year old mother who passed in April! It’s been a challenge.
Why my primary care? Because I don’t really have a pulmonary doctor. The one I had an appointment with at USA on July 2 left them on June 28! I haven’t heard from the infectious disease doctor, so I’m doing my own research and care plan! I do have a home health care nurse also. My primary agreed to order whatever I wanted, so I’m having a CT of my lungs, thoracic and lumbar spine. I was in the ER with afib (yes, just another issue) when they first told me I had pneumonia. Initially disregarded by my then pulmonologist as being pseudomonas they were seeing. Definitely not my first CT, more my like fourth? Last one was October.
I am considering UAB. I qualify having had two positive cultures. Do you see Dr. Garcia? It’s a long 3 hour drive, but doable.
At least your doctor was smart enough to know he couldn’t help you! I think my first one who is well respected around here, just does textbook prescribing. The second doctor I went to said I was lucky he didn’t kill me! And then she orders a med (Arikayce) not really knowing how to even order it!
Watchful waiting is what I’m doing and looking for with more guidance once I get my CT.
Thanks again! 🙏🏻🙏🏻🙏🏻 for us all!

Karen, I’m so sorry to hear you have a similar situation. I don’t believe anyone I know understands the seriousness of this. I have had 2 midline iv’s and a pick line doing infusions twice a day and that was for pseudomonas! I just can’t bear the thought of having another PICC line and for 3 months to a year. My nurse said I’ll end up with a port because the PICC line won’t last. I have very fragile, thin skin and not much subcutaneous fat, I haven’t had a line last for two weeks! I’m all for putting it in God’s hands. The meds I have had caused me to lose 15 lbs and now I’m fighting to maintain. I actually weigh ten lbs less than what my drivers license says! That’s a first because I always tell them my ideal weight! Have to laugh at something.
I tell my friends I’m doing witch doctor, voodoo medicine. I’m really doing essential oils that I’ve read medical studies on. Can’t hurt. I do breathing exercises also. Actual exercising isn’t happening because of my back fractures, but I try.
I’m hoping for no bad news with my CT and then finding doctor to help me with a nebulizer and saline. I will do what you are doing and watch, wait, pray!
Best wishes and prayers to you too!
Diane

Thank you for reaching out! Yes, a lot and I left out my 5 vertebral compression fractures last year along with trying to take care of my 99 year old mother who passed in April! It’s been a challenge.
Why my primary care? Because I don’t really have a pulmonary doctor. The one I had an appointment with at USA on July 2 left them on June 28! I haven’t heard from the infectious disease doctor, so I’m doing my own research and care plan! I do have a home health care nurse also. My primary agreed to order whatever I wanted, so I’m having a CT of my lungs, thoracic and lumbar spine. I was in the ER with afib (yes, just another issue) when they first told me I had pneumonia. Initially disregarded by my then pulmonologist as being pseudomonas they were seeing. Definitely not my first CT, more my like fourth? Last one was October.
I am considering UAB. I qualify having had two positive cultures. Do you see Dr. Garcia? It’s a long 3 hour drive, but doable.
At least your doctor was smart enough to know he couldn’t help you! I think my first one who is well respected around here, just does textbook prescribing. The second doctor I went to said I was lucky he didn’t kill me! And then she orders a med (Arikayce) not really knowing how to even order it!
Watchful waiting is what I’m doing and looking for with more guidance once I get my CT.
Thanks again! 🙏🏻🙏🏻🙏🏻 for us all!