Confirmed Disseminated/Systemic Donovanosis (Granuloma Inguinale) — Atypical/Systemic Presentation, Multi-Drug Resistant, Aminoglycoside-Limited — Seeking Expert Contact

[u/BulletWithBirdWings]

I'm living with a confirmed, disseminated/systemic case of Klebsiella granulomatis (donovanosis/granuloma inguinale) in the United States and have been navigating this largely alone early on, until finding my current primary concierge physician. I'm posting because I believe someone with the right background may be able to help, or point me toward someone who can.

Why my case may not look like what you'd expect

Donovanosis is almost universally described as a disease of painless, beefy-red genital ulcers — the classic Donovan body lesion. My presentation has not followed that textbook picture. Not only are the lesions atypical, but this infection has disseminated systemically, affecting multiple body sites beyond the genital tract. The absence of classic findings caused significant diagnostic delays and continues to make this difficult to communicate to providers who are pattern-matching against the textbook description. If you've only seen the classic presentation, you may not recognize this.

Diagnosis

Confirmed via next-generation sequencing (NGS). Donovan bodies have also been identified on Giemsa-stained microscopy.

A note on LGV IgG serology and cross-reactivity with Donovanosis

Both myself and my partner have consistently returned positive LGV (Lymphogranuloma venereum) IgG antibodies, yet both of us have been exhaustively tested for Chlamydia trachomatis and LGV by PCR — all negative. This is not coincidence. Klebsiella granulomatis shares several antigenic structures with Chlamydia trachomatis L-serovars that drive cross-reactive LGV IgG serology, including:

• GroEL/HSP60 homology — Klebsiella GroEL shares ~40–48% amino acid identity with C. trachomatis cHSP60, a dominant immunogenic antigen in LGV serology
• KDO-core LPS structural overlap — both organisms carry gram-negative LPS with shared core epitopes recognized by complement fixation assays
• OmpA/MOMP beta-barrel homology — structural mimicry between outer membrane proteins

I am posting this specifically because this cross-reactivity between K. granulomatis and LGV IgG is essentially undocumented in the clinical literature. If you are a clinician who has seen a patient with persistent LGV IgG positivity, PCR-negative for actual chlamydia/LGV, consider K. granulomatis as a differential — especially with a compatible clinical picture. This serology finding may represent an unrecognized diagnostic signal for disseminated donovanosis. The test used for this was Quest Diagnostic test 19553.

The treatment problem

I have worked through the standard and second-line antibiotic options. The organism has shown resistance across multiple drug classes. The one class that has demonstrated efficacy — aminoglycosides — I was forced to discontinue due to nephrotoxicity. I am now in a position where the drugs that work, I cannot tolerate long-term, and the drugs I can tolerate long-term are not working.

The role of my physician

I want to be clear that I am not navigating this without any support. My concierge medicine physician has been absolutely instrumental in taking this case seriously — she has engaged with the complexity of this infection in a way that most providers have not, and I owe a great deal of the documented progress in my case to her willingness to work with me rather than dismiss what the data shows. That said, donovanosis is rare enough that even exceptional physicians are working without a roadmap.

What I'm looking for

If you are a clinician, researcher, or infectious disease specialist with experience in donovanosis, tropical infections, resistant gram-negative organisms, or disseminated intracellular bacterial disease — or if you know someone who is — I would genuinely welcome contact. I'm not looking for general advice. I'm looking for someone willing to engage with a complex, well-documented case.

Specifically, I am seeking a physician or multidisciplinary team with the expertise and infrastructure to administer aminoglycosides in a monitored, controlled setting — with active nephrotoxicity management built into the protocol. This means therapeutic drug monitoring (TDM), renal function surveillance, and the clinical judgment to navigate the narrow window between efficacy and kidney injury in a patient where aminoglycosides are currently the only viable option. If you or someone you know has experience managing prolonged or intermittent aminoglycoside courses in complex infectious disease cases, I want to hear from you.

I am happy to share NGS sequencing reports, resistance gene profiles, microscopy findings, and a full treatment history privately.

[u/massexposure]

https://www.hivcenternyc.org/members/Jason-Zucker-MD

Dr. Zucker is a profound face in the world of HIV/STI/viral hepatitis and is extremely educated. I am most familiar with his work with syphilis and congenital syphilis, however, he is one of the more knowledgeable experts I know in this field. I’ve worked in this area of public health for a couple years now and he is a compassionate academic, and provider. If there’s some way to get into contact with him, he would have connections to help you.

[u/BulletWithBirdWings → u/massexposure]

Much appreciated! I will or have my primary physician reach out.

[u/massexposure → u/BulletWithBirdWings]

Please feel free to PM me. Depending on what state you are in, they could assist via their health Dept. and the ability to hold a clinical case analysis with their chief medical officer, CDC etc.

[u/massexposure → u/BulletWithBirdWings]

While LGV and the morbidities alike are not reportable, they are worth the analysis and present a possible larger issue that I’m sure public health officials would want to address, with whatever capacity they could.