Rareshare

In Feb. 2010 my husband was diagnosed with lung nocardiosis at a VA hospital, the medications that were used to treat him were Sulfamethoxazole/trimethoprim - Clarithromycin - and Ethambutol , in which he had to take for 3 months under the supervision of a pharmacy doctor. From what we were told, and from what i have read, is that nocardiosis can in some cases lie dormant in your system for years before it comes to the surface, and usually surfaces when the individuals immune system becomes low, and that the only way to treat this condition is with antibiotic treatments. unfortunately it seems to be a situation where your darned if you do! ( long term use of antibiotic side effects ) and darned if you don't! ( possible fatal outcome ). My husband was very fortunate that his was diagnosed quickly, and was able to stop taking the antibiotic treatments after 3 months ( verses the 6 mo. to 1 yr. treatments ) So far the treatments seem to have work, although he is now dealing with the side effects of which are Migraine headaches - Mussel spasms - and some Vision loss. In my search to understand this condition and the side effects of the treatments i came across a couple of websites that may be of use to you or others whom are searching for answers as well, medications.com is a website that offers a forum where you can type in the name of a medication that you are taking and it will show the results of others whom have also taken that medication and the side effects that they had experienced. If you are a military veteran hadit.com is where i came across the ( schedule list for rating disabilities) and on that list is ( # 6823 nocardiosis ) may be to your benifit to check into it if your still battleing this diease. Wish i could provide more information, good luck with your treatments.

Posted by krd705
28 Jul 2010, 08:01 PM

I would like any info on this disease-first hand,family member,friend,medical professional ect...At this time the nocardia is confined to the lung --diagnosed with radioligy and biopsy-- so far-not a good reaction to drugs bactrim and ceftriaxone combo-- next suggested combo amikacin and ceftriaxone- high risk/ bad possible (permanent ) side effects. treatment antibiotics tried side effects prognosis

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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

Complete the screening form.
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Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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EHF1Washington

I am a 53 year old woman who I believe is imunocompetent. I have recently been diagnosed with nocardiosis, although I have had lung issues, pneumonia ad bronchitis for many years. At the moment I...

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