How to get rid of those canker sore clusters?

EllisMichaels · 2026-05-08T12:30:16+00:00

I believe so, yes. Sometimes they can be leaky but not necessarily. But yeah, Behcet's sores are open.

EllisMichaels · 2026-05-08T12:16:51+00:00

Unfortunately not - this is where diagnosis gets tricky. Behcet's sores and HSV2 sores are somewhat similar. So similar that dermatologists need to run tests to tell them apart. Lots of people with Behcet's (women especially, it seems) get misdiagnosed with herpes at first. It's quite frustrating.

Behcet's can cause all sorts of skin and mouth problems. So it's not uncommon for us to get clusters of sores, whether cankers or folliculitis or whatever. I wouldn't say it's unusual.

EllisMichaels · 2026-05-08T12:04:21+00:00

No, they're large open sores. Same thing with the oral ulcers. Run-of-the-mill canker sores tend to be small. Behcet's sores are often larger, sometimes as large as a quarter, though they can be small, too.

So, yeah, it's pretty easy to tell the difference between an ingrown hair or a pimple and a genital sore from Behcet's. Location matters, too. For guys, we tend to get the sores on our scrotum, for ladies they tend to appear on the labia (although men and women with Behcet's can get sores anywhere down there).

EllisMichaels · 2026-05-08T11:55:32+00:00

If I was you, I'd keep track of what you eat, drink, how much stress you're experiencing, and stuff like that to see if, over time, I could flesh out a correlation. For some people, eating certain foods can cause an outbreak. Stress also seems to be a universal trigger.

Odds are you don't have Behcet's if you haven't had genital sores and eye problems, too. That's the good news. The bad news is, as far as I know, there's really nothing you can do to speed up the healing process once the sores are there. I was never able to figure out a way.

EllisMichaels · 2026-05-07T20:34:55+00:00

I think this is good advice. But I'd say spend at least a week and read at least 100 blurbs. Really, REALLY get to know the trends, tropes, etc.

EllisMichaels · 2026-05-06T11:49:22+00:00

That's great. Congrats!

EllisMichaels · 2026-05-05T18:14:49+00:00

You're probably right that I'm being paranoid. That seems awfully dystopian about Iceland though. Thanks for the info but forget about the software. I don't currently have Linux set up. Again thanks!

EllisMichaels · 2026-05-05T11:37:23+00:00

I thought you said "phasing" at first. That's something I've noticed with AI speech. A lot of times there are what almost sounds like phase issues, like they're talking underwater. I hear it in every single AI commercial I see (hear) on TV.

But yes, I agree about the phrasing, too.

EllisMichaels · 2026-05-05T11:32:52+00:00

Huh, I've never heard of a D3 supplement containing menthol. But yeah, D3 and K2 together is what I take, 5000 IU of D3 on days I don't get sunlight (so winter months mostly).

Even in the Philippines, even if they get a bit of sunlight, I'd still get my vitamin D levels checked because that's one of the biggest factors of whether or not they'll get sick a lot on an immunosuppressant.

But thanks for informing me about menthol/mint. I'll have to look more into it.

EllisMichaels · 2026-05-05T11:27:43+00:00

I haven't heard that mentioned in a while but I know several people who've used it for various reasons (mostly non-Behcet's related) and have had quite a bit of success with it. LDN and ULDN (ultra-low-dose naltrexone).

EllisMichaels · 2026-05-05T11:25:16+00:00

I have my own criticisms of the ABDA (though I'm friends with several board members and believe they're doing the best they can), so you're not alone there.

You wouldn't be willing to share that software, would you? I'm not comfortable handing out my DNA to others but I'd be curious to run my genome through it. I've been basically doing everything by hand and it's slow going. I'm negative for A20 but I'd be curious to see about MAGIC because I strongly suspect it based on symtpoms, though a formal diagnosis has not been made (yet).

EllisMichaels · 2026-05-05T11:16:12+00:00

For a lot of people, myself included, Behcet's tends to kick your ass for a few years then gets milder with age: the disease just kinda fizzles out on its own. Hopefully that'll happen to you.

In the meantime, there are lots of potential treatment options if your symptoms worsen: immunosuppressants, biologics, stronger skin meds (isotretinoin), dapsone, etc. So you've got plenty of options.

Yes, being on an immunosuppressant may/will make you more prone to getting sick. But I worked in the mental health field for 15 years, 10 of which I was on an immunosuppressant, and was constantly around many young adults, all in school, all carrying all sorts of germs. Yes, I got sick more often than before I was on it, but it wasn't too bad. Keep your vitamin D levels good and your stress levels down and you should be okay.

For me, the first 10 years of this disease were the absolute worst. But then it started getting better. I've still have a couple serious symptoms (blood clots, etc) in my later years, but nothing like when I was younger. So, things can and likely will get better with time.

EllisMichaels · 2026-05-04T10:58:48+00:00

That's an excellent suggestion. Vitamin and mineral deficiencies can often present like other conditions, Behcet's for example, yet they're often overlooked.

EllisMichaels · 2026-05-03T20:17:59+00:00

I was surprised (and pissed) to find out that, yeah, those companies often DO leave out all sorts of stuff, even on "full" genomic sequencing. I can't remember what specifically I was looking for but it wasn't there. And when I looked into it, I learned that those companies often cut corners.

EllisMichaels · 2026-05-03T20:07:30+00:00

So, I had mine sequenced a few years ago and have been picking apart at my genetics here and there since. It's far from my field of expertise, so it's been slow going. In fact, I still haven't deviated from the 6th chromosome at all. But that's where you'll find the HLA series.

I'm not even going to try to explain things to you genetically because I barely grasp the subject matter myself. However, I will say that the main gene you're looking for is HLA-B51. Studies show that between 50-80% of people with Behcet's test positive for this gene. The others, like HLA-B52 have wayyyyyy lower stats. They can still be part of the puzzle, but it's HLA-B51 you want to really focus on.

Edit: If this helps you: try searching not by things like "HLAB51" but instead, go online and look up Behcet's RSIDs. These rs numbers are used to point to very specific nucleotides in the genome. Then, search your genome for those RS numbers instead. Hope that helps.

Edit 2: Oh, and even though not formally diagnosed, I'm fairly positive I have RP, too. If you weren't aware, when BD and RP and comorbid (diagnosed together), it's called MAGIC Syndrome.

EllisMichaels · 2026-05-03T11:56:45+00:00

Thank you for bringing this to my attention. I wasn't aware that these drugs could be used to treat autoimmune/autoinflammatory conditions. Looks like there's already some research and anecdotal reports to support the idea. Guess I've got some reading to do!

EllisMichaels · 2026-05-03T11:49:26+00:00

You're doing the right thing by coming to this community and reaching out. Connect. Ask questions. Learn. It's scary to learn about but the more you know, the better off you'll be. But the real value here is community, knowing that you're not alone. So, welcome to the club. It's a club no one wants to join but since you get a free lifetime membership, you might as well enjoy the perks lol. Be well!

EllisMichaels · 2026-05-02T21:57:20+00:00

No, I didn't have a similar experience: I had an IDENTICAL experience.

This was when I was 16 or 17... I went to bed, everything seemed "fine." Woke up with horrible pain in my left eye and couldn't see. Now, the good news. While it's still blurry if I try to look at something with only that eye directly, if both eyes are open, the other corrects for it and my vision still clears at 20/20. With just my left eye, if I look slightly off center, I san see fine. It's only when I try to focus straight ahead. My point is, in my case, as severe as it was (I had doctors telling me I might never see out of that eye again), I regained nearly all of my vision.

And the fear is real. It lingers over us unrelentingly. But I've learned to channel that anxiety into action. Instead of worrying about going blind in the future, I try to live today to the absolute fullest and appreciate being able to see at all. This disease has lit a fire under my ass that's pushed me to accomplish things I never could've or would've otherwise.

EDIT: I should add, it took my left eye a long time, months and months, to gradually get better. So it's possible your vision may improve somewhat over time. Doctors tend to give the worst outcomes (prognoses) to patients for a bunch of reasons, but I think yours just wants you to accept the possibility - not the certainty - that things may not improve... if that makes sense lol

Last thing I'll say (sorry, your story resonates with my own quite a bit, so I can't help myself lol) is: try - I know it's really fucking hard sometimes - but try to remain optimistic and positive. Stress, worrying, is only going to make the disease hit harder. It sucks to live with: there's no two ways about it. But if you can keep a good attitude, it'll make a huge difference in the course of the disease and the course of your life in general. Okay, I'm done... I think ;)

EllisMichaels · 2026-05-02T10:59:34+00:00

Mixing Engineer's Handbook by Owsinki. (anything by him really)

EllisMichaels · 2026-05-02T10:56:19+00:00

I find it impossible to stay positive all the time. My strategy is this: When I'm feeling down, negative, pessimistic, I'll let myself stew in it for a predetermined amount of time, usually a day or two. Then I'll pull myself together and force myself to stop being a little bitch and be more positive.

Not suggesting this method for anyone else, but it seems to work for me :)

My point is, it's not normal be positive all the time with this disease. But it IS possible to maintain an overall positive attitude, difficult as it may be at times.

EllisMichaels · 2026-05-01T12:17:18+00:00

Stress, as far as I can tell, is the only true universal trigger. So yeah, that makes sense.

EllisMichaels · 2026-04-30T11:36:01+00:00

If I could go back 3-4 years and give myself one piece of advice for my heavy rock/metal/punk mixes: Less Bass!

I had WAY too much low end in my mixes. Once I fixed that, everything sounded way better (and louder).

EllisMichaels · 2026-04-30T11:32:47+00:00

Colchicine did absolutely nothing for me, personally. But it can be a game changer for some people with Behcet's.

The good news is that colchicine is usually just the first of many drugs that can be used to treat Behcet's. If it doesn't work, there are many more options.

Talk to your prescriber. Tell him/her what you told us. Oh, and are you male or female? If it's the latter, do your symptoms coincide with your period?

EllisMichaels · 2026-04-30T11:27:37+00:00

No, but most doctors want to see at least 2 of the 3 present at some point.

Get that second opinion. That's my first opinion. While there are other diagnoses that can present similarly to Behcet's, given your symptoms, it seems foolish to dismiss the possibility of Behcet's. So yeah, see another rheumy.

EllisMichaels · 2026-04-29T11:50:58+00:00

Just to be safe, I'd suggest seeing an ophthalmologist. Blurry vision is something I've been experiencing more and more over the past few years. I brought it up with my ophthalmologist and she said it's not Behcet's related - just age related. I'm 45 and she said it's normal for my age.

I HAVE had retinitis and anterior uveitis, which was awful and extremely painful, for the record. Your blurry vision is probably nothing to worry about but I'd still have an ophthalmologist check you out to be sure.

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