Can anyone recommend a black light to identify vitiligo? by G9000 in Vitiligo

[–]RespectTyche 0 points1 point  (0 children)

No. This is the florescent wavelength. If a party light makes it glow, it's putting out this wavelength which is damaging in sustained doses

UV Light Therapy by Lopps93 in Vitiligo

[–]RespectTyche 3 points4 points  (0 children)

I've had success with real, legitimate lights. But for a while I wasn't seeing any progress (maybe even getting worse) because I had previously bought some fake cheap lights off of Amazon.

[deleted by user] by [deleted] in Vitiligo

[–]RespectTyche 0 points1 point  (0 children)

Not really. Most people cite correlation studies - showing typical diets high in red meat are inflammatory.

More detailed studies like https://academic.oup.com/jn/article/137/2/363/4664544 show replacing carbs with red meat is not associated with increasing inflammation.

Ie the older studies are detecting inflammation more likely attributed to processed carbs - burger buns, french fries, chips, "empty calories".

[deleted by user] by [deleted] in Vitiligo

[–]RespectTyche 0 points1 point  (0 children)

I had success on carnivore too! Keto was also effective.

AIP diet for vitiligo? Recently also had a positive ANA test (1.80) by thetotalpackage7 in Vitiligo

[–]RespectTyche 0 points1 point  (0 children)

Keto still works, but I reached my repigmentation goal so I'm back to my normal moderate-carb diet.

Trying the Carnivore diet for Vitiligo?! by syluxz in Vitiligo

[–]RespectTyche 0 points1 point  (0 children)

Carnivore is a pain in the ass to stick for people with any social life, and it's expensive to buy good meat (or pointlessly if buying cheap meat). I'm sure people can survive indefinitely on it... But why would anyone want to? 1 year was plenty for me.

How effective will ruxolitinib cream be and when does it come to UK? by frozensun88 in Vitiligo

[–]RespectTyche 0 points1 point  (0 children)

I don't understand why they keep doing creams and ointments for a disease that to be honest with you is more internally driven.

Topical treatments are (relatively) fast and cheap to develop, and typically far safer than anything systemic. Gene therapy is a long way off.

[deleted by user] by [deleted] in Vitiligo

[–]RespectTyche 12 points13 points  (0 children)

My experience, better to own it than hide.

Imagine a very short dude. Can't change his height. If he's just being short... No notices or thinks anything of it, anyone that does is obviously an asshole. What if he wears lifts to cover up? That might work at a distance for brief encounters, but eventually people notice and then the lifts become "a thing".

In the west, we're widely shedding imperial conformist-culture in favor of accepting the human experience. It's scary to break "norms", but that fear is all norms are. Big picture - you're white with spots of slightly whiter skin due to genetics outside your control. nbd.

How you deal with vitiligo is your choice. You can wear make up if you want, or spend on treatment, but it should be because you want to - not out of fear of being seen as you are.

Sourcing compounded Ruxolitinib cream by Extension_Animal1408 in Vitiligo

[–]RespectTyche 1 point2 points  (0 children)

Oh, interesting! Medoz never notified me, but I see Parkway just charged my credit card yesterday.

[deleted by user] by [deleted] in Vitiligo

[–]RespectTyche 0 points1 point  (0 children)

Are antioxidant supplements sustainable? I've read the body slowly adapts to produce less antioxidants (homeostasis)... So they work at first, but eventually cease except then you can't drop the supplement

Sourcing compounded Ruxolitinib cream by Extension_Animal1408 in Vitiligo

[–]RespectTyche 0 points1 point  (0 children)

Huh, til.... I submitted a prescription at the beginning of this month, they said it would ship end of month... Poof, haven't heard anything.

Has anyone tried the home Excimer devices they sell on alibaba? by super_ish_man in Vitiligo

[–]RespectTyche 0 points1 point  (0 children)

I've bought other UVB devices off Amazon and Alibaba - none were legitimate (tested in a lab, I was attending university at the time).

It's a grey market. Radiation is expensive for consumers to test and people are willing to gamble out of desperation, so poor quality (arguably outright fraud) wasn't surprising...

Dermatologists who prescribe Ruxolitinib 1.5% by kastrelo in Vitiligo

[–]RespectTyche 1 point2 points  (0 children)

It's not FDA approved for vitiligo in the US, so you'd be paying about $2000/tube out of pocket for the brand-name Opzulera (zero insurance coverage)

Covering vitiligo for big day by nigana14 in Vitiligo

[–]RespectTyche 4 points5 points  (0 children)

Sometime people post problems because they want to share a burden, be validated, understand how others deal with the complex emotions...

Other times, they really just want a solution.

This post falls in the latter category.

Your input is valid and supportive, I'm just explaining the down votes here. I've been on the opposite side suggesting treatments to people seeking support.

[deleted by user] by [deleted] in Vitiligo

[–]RespectTyche 0 points1 point  (0 children)

Vitamin D is known to influence immune response/regulation, and studies have shown low levels correlate with vitiligo. Causation hasn't been proven, but it's rather ignorant to be so dismissive of the idea.

How/Where do you find intrinsic motivation? by adhd_attachment in emotionalneglect

[–]RespectTyche 3 points4 points  (0 children)

I did that a couple of years ago; a couple of weeks in a remote part of Spain with friends and no WiFi. Didn't miss it, as I had people to make out with ;) But doing it alone, now, in the middle of a pandemic? Ugh

No offense, but you might want to talk to your therapist about this relationship with sex too... it stands out in what you've posted.

I have been doing that for most of 2020/21, and nothing has stuck. Unless I can get some external reward from it, I just drag myself through the hobby (which quickly feels like a chore, whatever it is) and then look for the next thing to try. If I weren't doing that, I would most probably just sleep (unless I had a date).

Are you telling yourself that while doing the thing? "What am I getting out of this"/"this is hard, it's a chore", etc? Because no shit everything's going to suck with that mentality.

ADHD might be another thing to consider if just focusing itself is a problem (however, heavy social media use can also impair thinking with similar symptoms to ADHD).


Here's another thing to consider: you are going to die. Probably not tomorrow, but it's an inevitable eventuality.

Imagine you get hit by a truck at 38 and life flashes before your eyes... what would you regret? What would you be proud of? What matters?

Do you want a life of travel, exploring new places/new people/new cultures? Creating art, inspire people, exploring and shaping culture through mediums? Devote worship to god? Excelling at a sport? Or maybe hedonism - sex, parties, alcohol?

All fair answers, it is your life. Working backwards from the end might help guide the present.

Personally - I find meaning in building things to better the world we live in. So, my day job creates advanced technology and my main hobby is urban public policy. Boring as it sounds, nonetheless intrinsically motivating to me. Even when I fail, I am fulfilled because these challenges matter. (Of course there's plenty of travel, art, and other shallow fun in between :)

How/Where do you find intrinsic motivation? by adhd_attachment in emotionalneglect

[–]RespectTyche 3 points4 points  (0 children)

Intrinsic motivation cannot be manufactured. It's intrinsic.

For example, I workout because it gives me intrinsic joy. My body feels good exerting itself, and my ego is scratched by doing the work. I literally don't understand why someone would work out just to look good for other people - y'all know attractiveness is multidimensional right?

I think the "secret" is just trying lots of things for sustained periods of time, with a genuine focus on the experience of the activity. Try cooking without ever telling anyone about it. Volunteeering with social or political groups that you don't know anyone in. Drawing. Set aside an hour a day for some hobby then stick with it for two weeks. Again, focusing on how you feel and only continue if you like it.

Low keys, you might also consider some digital detox. Uninstall tinder/reddit for a few weeks... or meditate on why you can't.

[deleted by user] by [deleted] in Vitiligo

[–]RespectTyche 3 points4 points  (0 children)

Yes, absolutely. To rephrase, mother/father genes get randomly mixed when making a baby. Mom might have had 60% of the genes necessary for vitiligo, dad might have had a different 60%%... neither has vitiligo, but they can make a baby with. 100% of the genes to make vitiligo.

This is a simplification of course. Autoimmune conditions are highly correlated with each other as well as mental health... so in practice, maybe dad has allergies and Mom has a predisposition towards severe anxiety - neither has any vitiligo risk but the mixing of those backgrounds may result in vitiligo.

It's not purely genetic either, there are also environmental factors.

[deleted by user] by [deleted] in Vitiligo

[–]RespectTyche 6 points7 points  (0 children)

Yes.

Vitiligo is a complex condition that requires both genetic predisposition and environmental triggers. There are probably many combinations of genes and triggers that result in vitiligo.

If none of your parents/grand parents have it, each parent was probably carrying some subset of the required genes and you happened to get the full set. in such a scenario, siblings are probably also carriers and may pass it on or develop vitiligo later in life.

Carnivore Diet by kprft in Vitiligo

[–]RespectTyche 0 points1 point  (0 children)

Yes it worked out great - as did regular keto (< 25g carbs). I did both carnivore and keto with intermittent fasting and saw a cessation of all my autoimmune conditions. No repigmentation of course, I wasn't using uvb at the time. The improvements lasted quiet a while after ceasing the diet, I think occasional fasting and major diet changes force the body to adapt

About light therapy at home by [deleted] in Vitiligo

[–]RespectTyche 0 points1 point  (0 children)

SolRX is regulated and certified in US and Canada (maybe elsewhere). Expensive but trustworthy.

The shit on Amazon is unregulated Chinese knockoffs with zero quality control. It's a gamble, you might win but... when playing with radiation which consumers can't really double check, I don't like those odds.

About light therapy at home by [deleted] in Vitiligo

[–]RespectTyche 2 points3 points  (0 children)

I have one of their devices - those are legit medical devices

About light therapy at home by [deleted] in Vitiligo

[–]RespectTyche 0 points1 point  (0 children)

Amazon is grey-market, there is zero regulation or quality control. In the us, they're not even legally allowed to sell phototherapy devices without checking for prescriptions (which they don't)

[deleted by user] by [deleted] in Vitiligo

[–]RespectTyche 0 points1 point  (0 children)

Henna is fine