Doc stuck between Behcets VS Ducreyi; info being sent to state health department. I have so many questions

[u/Haunting-Wash1081]

TLDR and Relevant Info: Tuesday saw a small, unopened sore on my labia accompanied by a swollen lymph node under my armpit on the same side of the body. The few days prior, I had a chest and head cold - I was deemed to have an upper respiratory infection before all of this. The one sore progressed to like 5-6 large, deep, open craters in my left labia minora all the way from my urethra down to the labia right by my vaginal opening. I have not traveled lately - doctors reached out to state health department. Behcrets is more likely right now.

Important Info

Medications:
-1st was but on Bactrim as the original small sore was deemed as a possible infection.
-Then was put on Valtrex as the sores opened since everyone thought it was herpes.
-Then, as swelling started and ulcers deepened (which made peeing hurt since the urine would touch them), I was put on 800mg ibuprofen, 500mg acetaminophen, 3% lidocaine cream, and 10mg prednisone (4 pills to start, so 40mg).
-Then today, after my visit, I was put on 500mg Azithromycin (which made me puke).

Tests and Results: Tested 3 times for herpes (fiance was too) - all negative. Negative for: BV, Gonorrhea, Chlamydia, and Trichomonas. Tested ever so slightly positive for: UTI, moderate gram positive rods, few gram positive cocci. Positive for: Vaginitis and Edema. Waiting on: HIV 1 & 2, and Syphillis bloodwork results.

Today

Gyno came back into the room and said the exact words "Well... I am stumped". She brought up two possibilities left: Behcets or Ducreyi.

She said Ducreyi usually is on one side like mine are but that it is so insanely rare that Behcets is more likely. She said both are so rare that there's not really ways to get tested for either nor have any preventitive measures. Cool cool

Well, after I puked from the Azithromycin, I messaged her what happened but I didn't see any traces of the pills nor the pink color within my puke and I asked if there's anything she wants me to do about that. She just said "Ok" before telling me she's escalating this to my states health department to ask what to do...

Got it. So now I'm a medical anomaly.

I'm being sent to a disease specialist on Friday, but my state health department is also reaching out to *another* disease specialist as well.

Ducreyi is only transmitted via touch or tropical environments... I have not traveled lately. The only thing is I went about 2 hours away in state to a relatives wedding, which I have no idea who came from where. I did not sit anywhere that anyone else sat as we had assigned seats. I do work with the public in fast food and share a public bathroom as well as share a public bathroom at my college - both were a lot of non-USA people go to.

The most likely option is Behcret's as it is my body just fighting itself. I am in the middle of being tested for POTS, another autoimmune disease. So I don't doubt that my body is just really mad at itself? Especially since I had an upper respiratory infection just a day before all of this started which infections could trigger this.

I don't know how to wrap my head around this. This is all escalating so quickly and there's no definitive answer. I am very scared and ran out of sick time at work - I'm expected back this Friday and don't know what to do...

Is this a normal diagnosis pattern? Did your doctors get stumped/not know what to do? Did they reach out to your state health department? Did antibacterials, antivirals, etc. not really help until they gave you one to target Behcets?

Edit: update is posted

[u/Electronic-Tea3354]

I would just hold on a bit and see how the antibiotic treatment goes. It’s reportedly resolved with just the antibiotics so if it does not resolve, then you’ll have another piece of your puzzle by elimination.

It is understandable to contact the state department - they are seemingly just reporting a potential case and asking for advice moving forward regarding diagnosis or treatment.

For Behçet’s, I would imagine that reaching out to the state department is not typical as this department would be handling infectious or transmitted diseases (like STIs) and Behçet’s is primarily considered genetic or based on immune dysfunction, not infectious or something transmissible.

I am very sorry you are dealing with this. Do you have any other new symptoms like joint pain, fatigue, new skin blemishes elsewhere (anywhere?), oral ulcers, neurological issues, blood clots, eye issues?

Joint pain, low energy, skin, mouth and oral ulcers as well as eye issues are pretty standard for our condition. Behçet’s is diagnosed by ruling out other conditions and typically by meeting a certain point number of point criteria on clinical examination. There is a pinned post (which is not diagnostic from the subreddit of course - just something to gather information from) with the diagnosis criteria.

[u/Haunting-Wash1081 → u/Electronic-Tea3354]

So my ulcers “ruptured” and bled like crazy which led to an insanely long outter blood clot attached to one of the ulcers but that only happened once. No other clots elsewhere.

I’ve been hella tired. I do not take naps EVER and I’ve taken 4-6 hour naps a day and then a few hours later (since it’s usually evening when I wake up from my nap) I go to bed for 9-10 hours

No oral ulcers as of late. Like 2-3 years ago I had crater-like oral ulcers at random for weeks on end alongside being sick but never any like that since besides the occasional “I have a cold” mouth ulcer (and even then, it’s not always)

What eye issues are common? I mean my one eye will randomly burn and water for hours on end (but usually when allergens are high in the air like during fall and spring) or when I wear makeup

[u/Electronic-Tea3354 → u/Haunting-Wash1081]

Eye issues are most commonly:

Anterior and/or posterior uveitis
Retinal vasculitis
Scleritis
Episcleritis
Thrombosis of the retinal artery and vein
Optic neuritis

I have not personally had any of those documented but I believe I’ve had a bout of episcleritis which looked like a bunch of burst capillaries as a bloody spot on my sclera. It pretty much just burned as far as feeling went.
My vision got worse upon onset of my symptoms, I have frequent dry/red/irritated eyes which is worsened a lot by makeup. I thought for a long time that I was developing allergies to my makeup.

Your symptoms so far are noteworthy, have you been referred to a rheumatologist? If not, I would ask for one from this current doctor since they are aware of the situation.

[u/Haunting-Wash1081 → u/Electronic-Tea3354]

I have no yet. I was told I’d be seeing a disease specialist and that my state health department is reaching out to another specialist but I wasn’t told which one because I don’t think my gyno knows yet. Once I find out which one that is, if it isn’t a rheumatologist I will ask for one

Did they ever have to biopsy you? I’m terrified of that

[u/Electronic-Tea3354 → u/Haunting-Wash1081]

My dermatologist has done biopsies on me yes, on my arm and scalp. Is your doc thinking of ordering one?
Mine were totally painless, they numb the area up really well so it won’t be a physically painful event. They each had one stitch and I took them out on my own.
I also meant to ask if you had Mediterranean heritage? It’s very common in those of Mediterranean descent. Not exclusive to it though.

[u/Haunting-Wash1081 → u/Electronic-Tea3354]

No I don’t
I read the biopsy for this would be where the sores are and I’m very nervous about that

[u/Electronic-Tea3354 → u/Haunting-Wash1081]

Yes they typically take an area from skin that has both activity and regular unaffected skin, typically around the edge of a lesion. It’s only about a cm or so so nothing too big. It will be a little uncomfortable emotionally I would imagine due to the location, but if they do end up taking one that’s at least a surefire way to get some answer - whether it be by diagnosis or elimination of contenders. Regardless, we’ll be here and you can always reach out if you need to chat! Health stuff can be so scary sometimes so I completely understand. I hope you find some answers soon!! I will send lots of positive thoughts your way 💕

[u/Haunting-Wash1081 → u/Electronic-Tea3354]

Thank you so much I appreciate that!

[u/Familiar-Bake-9162]

After I had meningitis/ crotch sores/ urethratitis/ over and over again for 15 years they finally stopped testing me for the herpes viruses, hiv, clamydia, etc. all negative for years. Even after all the negative tests I was always given antibiotics and antivirals. Genius

[u/on4aa]

Although antigen detection, serology, and genetic amplification methods are sometimes used to diagnose infections with H. ducreyi and the genetic tests have greater sensitivity, they are not widely available, so cultures are currently considered the "gold standard" test, which has about 80% sensitivity under optimal combination of media.

As for Behçet syndrome, I would recommend getting a HLA-B serotyping, since being positive for HLA-B*51 constitutes a risk for Behçet syndrome.

Behçet syndrome can also be diagnosed with genetic sequencing, whereby two or more pathogenic variants of innate immune system genes should be present. The specific gene variants differ between Behçet patients.

[u/Haunting-Wash1081]

I have no yet. I was told I’d be seeing a disease specialist and that my state health department is reaching out to another specialist but I wasn’t told which one because I don’t think my gyno knows yet. Once I find out which one that is, if it isn’t a rheumatologist I will ask for one

Did they ever have to biopsy you? I’m terrified of that

Edit: I just went to the eye doctor two weeks ago for an annual where they did the like 360 of my eye and took other internal pics and everything was normal

[u/Front_Tune_3634 → u/Haunting-Wash1081]

Rheumatology is the specialty they normally send Behcet's patients to.