I have asthma, bronchiectasis, and recently diagnosed with pulmonary Nocardiosis.
I know much about asthma and bronch but need to talk to someone who has Nocardia. Can anyone who has been treated for this, let me know how long treatment was and their current prognosis?
This is a very rare disease and I'm having trouble finding a support group where anyone has been diagnosed with Nocardiosis.
It is unusual to be infected with Nocardia. However it is not rare to be infected with Nocardia when you have bronchiectasis. The length of antibiotic treatment will vary based on how the infection responds. Generally it takes weeks of treatment.
My Daughter was diagnosed with this earlier this year. She spent a month in the hospital on sulpha based antibiotics. She came home on a pic line and had intervenious antibiotics for 3 months then 2 more months of oral bactrum. She was treated at UC davis med center in Sacramento Ca. and at Stanford medical center in Palo Alto both have great pulmonology staffs. Her prognosis is good and she has been healthy for the last few months. She uses pulmozyne to thin her secretions via a nebulizer and the vest airway clearance system every day. A few suggestions, GET A CAT SCAN ! you can not afford to let nocardia disseminate into your blood stream it can be deadly. Get second opinions on all biopsies, these are to read and easy to make a mistake on. When you recover take up walking and jogging it will really help to keep your lungs clear and healthy very important since you you have the bronchectisis (which my daughter also has). I know you have more questions so please post them and I will answer to the best of my ability. Stay strong and I will hold you in my prayers
It is important, from the microbiology lab side of things, that your specimens be sent with a flag of "look for Nocardia." If your doc has been sending all your specimens to the same lab, that is good, as the techs working on your stuff will remember you for sure. However, the techs who set up specimens sometimes are different than the ones who work up the plates.
There are certain media they can use to enhance growth of this organism. Also, increasing normal incubation times can help in looking, as sometimes this organism takes awhile to grow.
I've only seen this organism a handful of times over my thirty year career in microbiology. It indeed can be come disseminated. I remember we had a patient back in the 70's that had it in wounds, urine, CSF, and other specimens. We are a large laboratory and when we suspect it, we send it out to the state reference lab, as the media to ID it is fussy, and we only run into it a couple of times a year. However, we send out preliminary reports so the doc knows we are suspicious of this organism. Looks like you have a good lab backing up your doc.
Unfortunately we lab people are not privy to the treatment regimen for this disease, so I can't help you there. We ID it, then the doc takes it from there.
Not trying to disparage the lab,but as the gentlemen said it can take two weeks or longer to grow Nocardia in a very fussy setting, assuming they get a good sputum sample or fluid sample from a broncoscopy (my daughter had two). Ask for any tissue samples to be looked at by a second pathologist. Baylor university med center in Texas is one good source.
Nocardia is what is termed a fastidious organism. It has certain growth requirements, and needs enriched media to grow. Sometimes it will come up on the regular media used routinely to plate respiratory specimens, but if we know that this organism is suspected ahead of time, we will add brain heart infusion media and hold the culture for longer incubation. When a fungal culture is ordered along with a routine culture, this is the best scenario as we routinely plate to BHI with blood and hold the culture 4-6 weeks as a normal protocol. Routine respiratory specimens for bacterial culture are held for only two days if only normal flora is present and possibly a day or two longer if subcultures of pathogens must be made.
The integrity of the collected specimen is paramount, and the lab is totally dependent upon the physician to collect a good bronchial wash, lavage, or brushing. These types of specimens are pretty much routinely ordered for bacterial, fungal, and mycobacterial culture (acid fast organisms like TB), whereas expectorated sputum specimens are not the best for any type of specimen, unless the patient is actively producing purulent sputum and you get a first morning specimen.
I don't have any contact with the tissue side of the report (i.e. the pathologist reading smears) but I would suspect a thorough history sent along with the specimens would be immensely appreciated by them also. Doctors have the luxury of picking up the phone, calling another physician, and are able to compare notes on specimens. We in the lab don't have that much opportunity to do that, unless infectious disease docs are on the case and happen to let us know what's going on. I would suspect that large medical centers such as a medical school (Baylor is one) would see more of these types of specimens than a small community hospital. It is the same way in microbiology. We do the work for four hospitals and see a lot more in the way of pathogens than a small rural laboratory. Many small hospitals don't even have microbiology departments any more so they refer all their microbiology specimens. Extensive travel time can cut down on recovery of fragile organisms. I personally think it's best to have these types of procedures performed in a place large enough to have microbiology on-site. We get numerous courier runs per day from our community hospitals that feed into our lab, as they are all in the city limits. Some rural hospitals, however, are 50-60 minutes away from their referral lab, and may only get one to two couriers a day to transport these specimens. They may sit in a car for awhile until the courier performs all of their stops and gets back to the lab.
In microbiology, specimen integrity is everything.
I appreciate your information on your daughter's Nocardia. How is she now? I would really like to talk to you more about this and I do live fairly close to Stanford. Is it possible to email you with questions? You are one of the only persons I have found with personal experience. Thank you, Nancy
My Infectious disease doctor has referred me to Stanford Univesity in Palo Alto. He feels my condition is beyond his expertise and was honest enough to let me know that. He doesn't want me to have another allergic reaction under his care. I was just wondering what symtoms your daughter had? Did they improve after treatment and how long?
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