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Diagnosed with Pyoderma gangrenosum

Started by Rebecca Miller61 · · 👁 3 views · 18 replies

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Participants Rebecca Miller61Angela WrightSam Hall15ironsurfer8
Rebecca Miller61 Rebecca Miller61 NewcomerOP
7 messages
joined Mar 2007
#1 ·
After doing a ton of research, I finally got a diagnosis for this condition.

Does anyone here know anything about it? There’s hardly any info online because apparently it's pretty rare, and they aren't even sure what the actual cause is. I have to be admitted to Salisbury Hospital in a week. 😕

I’m honestly a little worried there might be something more serious going on underneath. My immune system feels totally trashed—I actually caught the flu for the first time in ten years, and I haven't been able to shake this constant cough since. A few weeks before all this started, I had a couple of vaccinations for an overseas trip, so I'm wondering if that might have played a role.

I've also noticed some mild itching on my skin, and sometimes my eyes get itchy too. To top it off, I’ve dropped 10 pounds over the last three months without trying at all; I could never pull that off even with regular gym sessions since my weight usually stays pretty steady.

The whole situation just feels off to me.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#2 ·
Rebecca Miller61 said:After endless testing, they finally gave me this diagnosis.

Does anyone actually know anything about this? There’s next to nothing online; apparently, it's some rare condition where they don't even pinpoint the actual cause. I have to be admitted to Salisbury Hospital in a week. 😕

I'm terrified there might be something much more sinister hiding underneath this. My immune system feels completely shot—I caught the flu for the first time in ten years, and I haven't been able to shake this cough since. A few weeks before all this started, I picked up several different vaccinations for an overseas trip, so I can't help but wonder if that played a role.

My skin gets itchy sometimes, and my eyes feel irritated too. To make matters worse, I've dropped 10 pounds over the last three months without trying at all. I couldn't even pull that off when I was hitting the gym regularly, and I've never been one for sudden weight fluctuations.

The whole situation just feels wrong.

I managed to track down this medical text about it for you:
http://www.reddit.com
Rebecca Miller61 Rebecca Miller61 NewcomerOP
7 messages
joined Mar 2007
#3 ·
Thanks. I’ve been digging through some English articles online, but there isn't much out there.

It's a similar story for me—my doctor prescribed a regimen of 60-80 mg of prednisone daily, so fingers crossed this does the trick.

Prof. Smith was actually the one who gave me the diagnosis, so I'm really hoping they got it right this time. This is my third attempt at getting a correct diagnosis for this exact issue; the first two were total misses. 😠

I'm just praying it isn't linked to any of those other illnesses mentioned. Honestly, I'd say there's maybe a 40-50% chance it's something else entirely.

I'd likely feel some symptoms if it were, but other than what's already listed, I feel pretty good.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#4 ·
Rebecca Miller61 said:Thanks. I’ve been digging through some English articles too, but there isn't much out there.

It's the same story here—they prescribed me a regimen of 60-80 mg of prednisone daily, so let's hope it actually does the trick.

Anyway, Prof. Smith was the one who made the diagnosis, so I'm just praying they didn't miss the mark again. This is my third attempt at getting this right; the first two diagnoses were total misses.😠

I'm just hoping this isn't linked to any of those specific diseases mentioned. Honestly, I'd say there's maybe a 40-50% chance it's something else entirely.

I'd probably be feeling other symptoms by now, because aside from what's listed, I feel perfectly fine.

Look, if you ask me, the whole thing smells like an allergy that just happens to manifest on the skin looking like Pyoderma gangrenosum.🤔
I'm no doctor, but sometimes I have a pretty good gut feeling about this stuff... have you done any allergy testing yet?
In my experience, doctors love to jump straight to a complex diagnosis while completely ignoring the most trivial symptoms.
For months, they've been treating me with various eczema creams for my hands, claiming it's neurodermatitis, fungus, blah blah blah... It settles down for a bit, then flares right back up. Recently, my eyes started stinging, my palate got itchy, and my nose started running... I took some Claritin and all the symptoms vanished along with that hand eczema. Turns out, it was just an allergy that had been messing with me for months, even though they kept insisting it was neurodermatitis.👍
Sam Hall15 Sam Hall15 Active Member
225 messages
joined May 2006
#5 ·
hm....hitting the nail on the head 😁
Dermatology is just one of several fields I'm less familiar with (perhaps because I haven't listened to 😁 yet)
A question: have you had a microbiological analysis done—basically a swab from the area? If it really is pyoderma, there should be an underlying cause, likely bacteria, and if that's the case, corticosteroids aren't exactly recommended unless we're dealing with an autoimmune process....hm....let me look into this a bit more and I'll post again...
Sam Hall15 Sam Hall15 Active Member
225 messages
joined May 2006
#6 ·
I've done a bit of research on this... if you're interested, I can send you the full text. Here is the link, though I suspect you might need to log in before it actually opens http://www.emedicine.com/derm/topic367.htm. Just take a look and see what you think
Rebecca Miller61 Rebecca Miller61 NewcomerOP
7 messages
joined Mar 2007
#7 ·
Back in October of last year, I went through a whole round of vaccinations at the local public health clinic—about ten different shots—since I was heading off to Africa for five weeks starting in November. Midway through my trip, I noticed what looked like an insect bite, which eventually started spreading into a small ulcer that would slightly open up. Once I got back to the States, they sent me to an infectious disease specialist who immediately panicked, suspecting cutaneous anthrax. Without any actual lab confirmation, they jumped straight into treating me with penicillin and some other pills. Around that time, my skin and eyes started feeling pretty itchy, though I just assumed it was a side effect from the medication.

When it became clear the treatment wasn't working, they referred me to dermatology. At first, they were looking into Leishmaniasis or Pyoderma. They performed a biopsy, but the results came back negative for any Leishmaniasis markers. Prof. Smith concluded there was a 99.9% chance it was just Pyoderma. He prescribed the treatment I mentioned earlier and recommended I be hospitalized.

Honestly, I'm a bit lost. Every time I read about Pyoderma, people talk about intense pain, but I don't feel any pain at all. Does anyone know of a good private clinic or a specialized hospital I could visit? Money isn't really an issue for me right now.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#8 ·
Rebecca Miller61 said:The deal is, back in October of last year, I was at the local public health department getting a mountain of vaccinations done—about ten different shots—because I was heading to Africa for five weeks starting in November. About halfway through the trip, I noticed what looked like an insect bite, which slowly started spreading into this sort of ulcerated sore that would slightly open up. Once I got back, they sent me to infectious diseases where they actually panicked, suspecting cutaneous anthrax. Without any actual serological proof, they just jumped straight into treating me with penicillins and various pills. Around that time, my skin and eyes started feeling itchy, but I just assumed it was a side effect of the medication.

Once they realized nothing was changing, they referred me to dermatology. They initially suspected Leishmaniasis or Pyoderma. They ran a biopsy, but couldn't find any traces of Leishmaniasis. Prof. Smith concluded there was a 99.9% chance it was Pyoderma. He prescribed the treatment I mentioned and ordered a hospital stay.

I’m at a loss. Every time I read about Pyoderma, people talk about intense pain, but I don't feel a single thing. Is there a private clinic or a hospital I can go to? Money isn't really an issue for me right now.

You know what? If I were in your shoes, I’d run every single one of those basic tests from A to Z. And I’d definitely take it easy with an allergy test. Honestly, I don't even understand what kind of diagnostic tools they could possibly have to claim they can diagnose Pyoderma with 99.9% certainty. From a layman's perspective, everything you described they did sounds incredibly sloppy.
The second thing I’d try is an alternative approach. I’d go see a reputable herbalist or a folk healer to get a fresh set of eyes on it.
For heaven's sake, do you really need to be hit with a barrage of chemical injection bombs when the issue might be something totally unrelated, like a stomach problem that hasn't surfaced yet (just playing devil's advocate here).
Third, and most importantly, stop ignoring your gut feeling that something is off with their diagnosis. Your body often screams at you, but we just don't know how to listen.
Go see a tenth doctor and have them run every test under the sun, but don't mention that they originally diagnosed you with this nonsense. It'll 100% turn out to be something else entirely. Thank God we have private clinics now where doctors will actually lie down with you and give you a thorough, detailed exam, rather than rushing through it like the doctors in public hospitals who just breeze through patients because they're overwhelmed by the workload.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#9 ·
Can you give me a bit more detail on what that wound—or whatever it actually is—looks like?
Rebecca Miller61 Rebecca Miller61 NewcomerOP
7 messages
joined Mar 2007
#10 ·
http://www.medscape.com/content/2001...06.10.fig1.jpg

Something like this, roughly the same size.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#11 ·
Rebecca Miller61 said:http://www.medscape.com/content/2001...06.10.fig1.jpg

Something like this, roughly the same size.

Look, any layman could guess and be wrong. My grandmother used to get sores just like these from her diabetes. Honestly, it even reminds me of a herpes lesion.
Are you putting anything on it to help those scabs heal?
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#12 ·
I was just thinking... you mentioned feeling some kind of insect bite there. If you were scratching at it, you might have actually pushed some exotic bacteria or even the herpes virus deep into your tissue.
It actually reminds me of a case from about ten years ago down by the coast. A neighbor of mine developed these sores all over his back—they looked almost like pressure ulcers, but they weren't. He was originally from Boston, and doctors spent months cycling through every possible diagnosis without hitting the mark. Eventually, he got fed up, went to the beach to swim, and that’s when the pain really flared up. Since my cousin was the only doctor in town during the summer, he called her when the discomfort became unbearable. She’s a general practitioner working in a small rural area outside of Sedona, and she’s seen just about everything, from hip issues to much worse. She recognized immediately that it was herpes, ran to the pharmacy for some liquid topical treatment for chickenpox, and he just kept swimming in the ocean and applying it afterward. Within about ten days, everything had dried up and cleared.
You mentioned your immune system is down, and that's exactly when herpes likes to strike—right when your defenses are completely bottomed out. 🤔
As for that stinging and itching in your nose and eyes, it might not even be related to this skin issue. You could try taking some Claritin for those symptoms. You can pick it up over the counter at any drugstore, and if it is an allergy, you should start feeling relief after the very first pill.
Of course, everything I'm saying here is just my own speculation; I'm certainly no doctor. I truly believe a good physician—maybe even a specialist in a private practice—will be able to identify exactly what this is and get it sorted out for you.
Rebecca Miller61 Rebecca Miller61 NewcomerOP
7 messages
joined Mar 2007
#13 ·
They didn't find any bacteria at all. Plus, this popped up in two different spots at once—a larger one on my leg and a smaller one on my upper arm. I really don't think I managed to scratch both areas and infect myself at the exact same time. 🙂

As for herpes, I doubt it. I know what that looks like; my niece had it, and if I remember correctly, it’s pretty painful. Mine doesn't hurt at all.

Regarding the allergy theory, I've never dealt with allergies in my life, but honestly, I wouldn't be surprised if that's part of the mix now. Either way, once I'm admitted to the hospital, I'll be asking for a full battery of tests.
ironsurfer8 ironsurfer8 Active Member
76 messages
joined Dec 2007
#14 ·
So, there are certain strong antibiotics that can trigger hypersensitivity reactions that mimic an actual allergy.
You should take a look at the thread regarding histamine allergies—it's often referred to as a pseudoallergic reaction.
http://www.reddit.com
If one of the antibiotics they prescribed you is on that list, there’s a high probability you’re reacting to histamines in your food. Avoiding certain foods and taking some Claritin might help ease things.
(The symptoms can be pretty varied; it could be anything from the runny nose and itchy eyes you mentioned before to skin rashes or even headaches.)
Rebecca Miller61 Rebecca Miller61 NewcomerOP
7 messages
joined Mar 2007
#15 ·
I was taking Pfizer - http://www.reddit.com

Ever since I started on it, I've been dealing with this itchy skin and eye irritation, plus my heart races every now and then. It felt like poison, especially since I actually needed to be on it.. 😢

I haven't touched the stuff in over a month, but that itching sensation just won't quit.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#16 ·
Are you taking anything to boost your immune system, like some kind of antioxidant or something else?
Rebecca Miller61 Rebecca Miller61 NewcomerOP
7 messages
joined Mar 2007
#17 ·
I picked up some Herbion tablets that list "red echinacea juice" on the label. Does anyone have any recommendations? My immune system definitely feels like it's been through the wringer lately after everything that's happened.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#18 ·
Rebecca Miller61 said:I picked up some Herbion tablets that mention "red echinacea juice." Any recommendations? My immune system is definitely shot after everything I've been through lately.

There’s a thread over on Reddit where we actually dive into this exact topic.http://www.reddit.com
Everything mentioned there has been vetted by people who have actually used it, so just look through and see what fits your needs best.
Personally, I swear by Native Propolis (www.naturemade.com).
ironsurfer8 ironsurfer8 Active Member
76 messages
joined Dec 2007
#19 ·
They really did you dirty with those medications. If you're dealing with a reaction—something like a histamine response—it can actually linger for weeks after you've stopped taking them.
At this point, there isn't much of a workaround other than leaning hard into a clean diet and trying to get your system back into balance.
Echinacea might be a good way to give your immune system a little boost.
As for that itching, it sounds a lot like an allergic reaction, so maybe try some Claritin and see if that helps.

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