Vitiligo - What's the Bio-Energetic view on this strange autoimmune condition??

[BigShoes]

I have vitiligo. It sucks.

I was diagnosed at age 19 - I am now 32.

Many of my diet choices over the years have been at least partially guided by the thought: "maybe this could help reverse my vitiligo..." - nothing ever has.

I learned around age 23 about "leaky gut". I was working with the theory that a "leaky gut" (from grains, PUFAs, certain vegetables, standard western diet) was causing harmful particles to get into the bloodstream, which were then creating havoc in the system. One of these horrible symptoms being vitiligo.

Paleo -> Low carb paleo -> keto -> carnivore -> carnivore and honey / dairy

All of these were done, at least in part, with the hope that vitiligo would disappear. Maybe if I cleaned up the digestion and repaired the intestine, then the autoimmune condition would regress / revert to previously... this did not work.

Does the bio-energetic view have an understanding of why this condition happens? OR thoughts on how to reverse?

Ideas I have looked into:
- leaky gut
- copper deficiency
- folate / b12 deficiencies
- UVB therapy (this technically works, but is like trying to scoop water back upstream..... not a long terms strategy. It also damages the skin over time if done too much).
- high dose vitamin D (check figure 9 A pilot study assessing the effect of prolonged administration of high daily doses of vitamin D on the clinical course of vitiligo and psoriasis really cannot explain why this would happen... I wonder if high dose vitD is actually immunosuppressive).
- I have even been so desperate as to look into homeopathy. German New Medicine (GNM) associates vitiligo with "separation conflict". I.e. a traumatic separation. This first sounded attractive to me as an explanation, because my vitiligo appeared around a very stressful period, where: my "first love" dumped me, my grandfather died suddenly, and my older brother left home (all in the space of a month or so). However, their "cure" for the condition seemed very dubious - hocus pocus voodoo woo woo... too good to be true. So I didn't pursue it further.

I had guessed that the bio-energetic view would be some kind of "energy" problem. For whatever reason, the melanocytes do not have the energy to create pigment...... why? how? how to reverse?

Interestingly, I also have high autoimmunity in the thyroid gland - apparently this is common in people with vitiligo.

I'm really sick of this condition. And sick and tired of being sick and tired along with it.

 

[PopSocket]

Following this thread. Tried to dig into vitiligo a few years back and could not find a definitive answer either.

 

[Blossom]

@BigShoes, would you mind posting picture of your? Mainstream thought is that it autoimmune but I’ve yet to cure mine even when all other autoimmune processes are in well controlled. Diet also hasn’t helped mine.

 

[Peatress]

Professor Cahill mentions "white patches on the skin" in relation to autoimmune diseases in this interview @9mins. She discusses the links between vaccines and autoimmune diseases.

I think she would be the best person to contact about this condition.

Contact | Prof Dolores Cahill PhD

 

[Nebula]

The immunosuppressant creams often work. I started using tacrolimus last summer. Very off and on and I still got some regimentation. I'm going to begin again and be more diligent this year, thin layer twice per day and get an hour of morning sun. Although I must say it seems to disrupt my sleep especially when I applied to the skin above my eyelid where I have a small lesion that has changed part of my eyebrow hair white, which I've dyed since I was a teenager when my vitiligo first developed. It was really only about a year or two of two small lesions developing when I was about 14-16 and then stopped and never changed since. Until I started the tacrolimus cream I bought from All Day Chemist. So applying only a very thin layer is probably enough and maybe best to space far away from before going to sleep.

I also think hydrogen water/inhalation and redlight can play a role in regenerating the melanocytes. I was inhaling and drinking hydrogen water a couple years ago and I wonder if that helped as well. I'm not currently using hydrogen but I would like to again soon.

As for the cause, I think its probably just a consequence of intergenerational stress, deficiencies, and contaminants. Vitiligo occurs in every population. I don't think its very genetic, although it is heritable.

A non inflammatory diet is probably very helpful too although not enough to cause regimentation on its own.

 

[Peatful]

Stress (cortisol) Can Cause ANY Autoimmune Condition By Disrupting Gut Barrier

A great new study that is not afraid to point out the paradox between mainstream medicine's claims of beneficial effects of cortisol and the reality of "autoimmune" conditions more often than not being associated with elevated levels of CRH, ACTH and cortisol. The role of CRH as a causative...

raypeatforum.com

A Bioenergetic View Of Autoimmunity [Generative Energy #12]

A Bioenergetic View of Autoimmunity [Generative Energy #12] #12: A Bioenergetic View of Autoimmunity 01:16 - Danny’s introduction to autoimmune conditions 02:07 - Autoimmunity and cancer — two peas in a pod 02:58 - Jamie Cunliffe (link: home_page) 03:12 - The mainstream view of autoimmunity...

raypeatforum.com

 

[BigShoes]

hi @PopSocket ! - do you have this too? I'm very sad to hear that.

Hi @Blossom! :) thank you for all of your hard work here - so sorry to know that you have this too.

When I say to you both "I am sad... / I am sorry...", I hope you don't find it patronizing of me. I think some of us deal with it better than others, but I can say that it has had a significant negative impact on me and my quality of life, for sure. I hope to goodness that no one else out there has had quite as negative an experience with it as me... but sadly, I'm sure that many have, and worse. With that out of the way:

I have not taken any clear photos of it (I can if you would like). But I can say that:
- I have next-to-no pigment on my arms and legs, barring some pigment on the upper side of my forearms.
- However, most of my torso is completely pigmented above the navel (barring a few specks, and a patch on one shoulder blade).
- Below the navel though, there are broad de-pigmented patches.
- some patches on the back of my neck, and apparently some patches on the side of my nose.

Somewhat fortunately though (depending on how you look at it), I am naturally very fair-skinned anyway, so it is usually quite difficult to notice when fully clothed. However, when summer comes around and the sun comes out, the patches become much more noticeable. I avoid going out in the sun, because I don't want people to notice. Which I'm sure is not doing my health any favours.

I haven't been on holiday in the sun for 12 years - I don't see the point anymore.

I will say, the study I linked with the vitamin D was very interesting to read. I believe it has been posted here before on a psoriasis thread. In case people don't have the time to read, basically:
- 16 vitiligo patients were given an extremely high dose of vitamin D for 6 months (35 000 IU per day)
- 75% (12 people) saw noticeable re-pigmentation - and 4 of those 12 saw 75% plus recoverage of pigment. 25% of people (the remaining 4 of 16) saw no change.

35 000 IU of D3 per day seems to be asking for trouble... not something I would like to try. And I have no idea what the mechanism would have been for the re-pigmentation. At first I thought it might be that: functions were being kick-started again (a good thing), but I have come to understand that fat soluble vitamins can be immuno-suppressing in high quantities - which is not such a good thing, despite the positive effects RE: the skin condition.

Additionally, I have experimented with a small UVB desk lamp (one minute at a time on a very particular patch of skin) and have observed re-pigmentation occurring (small circles literally reverting to full pigment). I have also read a theory (which I have not been able to find definitive mechanical proof of) that the UVB is also temporarily suppressing the skin's immune response too, like the D3 might have been. Not sure if true.

The point is, the melanocytes 100% HAVE TO BE wake-up-able.... revitalize-able? I can't think of the correct word right now... they are dormant - not permanently dead.

This has been with me for over a decade. I have come to "accept" it as best as I can, and would certainly rather I could solve my other symptoms (damaged metabolism / hypothyroidism and its discontents)... but I had a dream one day that I would find a cure that I could share with others...

Ah one other thing I remember reading about was that it was associated with a dysfunction with heat shock protein 70 (HSP70) - but that research ran dry. It was a classic "mainstream medicine" study looking at one very specific thing and trying to find a drug to kill the protein / alter the sufferer's response in some way, rather than a holistic approach.

hi @Peatress - thank you so much for this. I will have a listen now and respond.

hi @Peatful :) I hope you are doing great. Thank you very much for this, yes I have listened to that podcast episode before. I didn't really come away with an action plan though... it all seemed quite abstract. Maybe I didn't follow along properly and am in need of another listen. Stress and stressful events are certainly correlated with the onset of autoimmune conditions, but life is stressful - we cannot always control what happens to us, and cannot always handle the stress response from those events... Side note: I currently feel completely trapped in my own life and in my poor health - I am starting to think that none of my symptoms will ever get better unless I completely destroy my current life, up and start again somewhere else, and completely re-write my entire personality / view of the world / way of being (hopefully it would be like a phoenix rising from the ashes, rather than a burned Christmas turkey). Not sure what I would do though.

But back to vitiligo - very interesting (but devastating) condition - I have pondered about what exactly is going on with it for a very long time. I have very seldom seen any cases where significant and consistent regression has occurred, but I know that it must be possible...

 

[Blossom]

35 000 IU of D3 per day seems to be asking for trouble...

I would personally feel uncomfortable taking that amount although apparently some Coimba protocol people do so successfully.

I am starting to think that none of my symptoms will ever get better unless I completely destroy my current life, up and start again somewhere else, and completely re-write my entire personality / view of the world / way of being (hopefully it would be like a phoenix rising from the ashes, rather than a burned Christmas turkey).

I can definitely relate to this sentiment. I’ve only got one major stressor to eliminate at this point.

 

[BigShoes]

For what it's worth, I took 10 000 IU of D£ per day for a few months, and have now dropped to 5 000 IU - definitely no change to vitiligo in me from those doses.

 

[Nebula]

For what it's worth, I took 10 000 IU of D£ per day for a few months, and have now dropped to 5 000 IU - definitely no change to vitiligo in me from those doses.

Yeah there's no real evidence vitamin D megadoses makes an impact on vitiligo. Most consistent results for most people are the immunosuppressant topical creams such as tacrolimus and even just sun exposure for UV exposure. I'm definitely getting some even being irregular in my application of the cream.

 

[BigShoes]

Thanks @Nebula - I am certainly interested in reading into the cream more - thanks so much for the information.

Although I must admit, my initial instinct is to say that it may not be the "right" way to go about it.

Instead of preventing the unhealthy state that is causing the auto-immune response in the first place, the cream is basically crushing the immune response at the source... like a drone strike / nuclear bomb to stop an army... I'd rather negotiate and stop the conflict from first principles - if you get my drift.

Similarly with the UVB - the UVB definitely does work to *some* extent. But it's like trying to scoop water back upstream - it feels futile. Repeatedly low-level burning your skin to quash the immune response... probably not the best way to go about it long term, and could create other problems even if it is partially successful.

Still, if I can confirm that there are no other downstream effects, I think I would consider trialling the creams.

 

[WombOfFuturity]

I avoid going out in the sun, because I don't want people to notice.

I know this is an annoying reply but I am contractually obligated to remind you nobody cares what you're doing or what you look like, and even if they do (they don't), it's their problem, not yours.

N.B. ☞ If you feel attraction to more emotional explanations of GNM you could try reading psychoanalysis or similar directly, e.g., Object relations theory - Wikipedia

 

[mostlylurking]

I had guessed that the bio-energetic view would be some kind of "energy" problem. For whatever reason, the melanocytes do not have the energy to create pigment...... why? how? how to reverse?

OK, so here's what I've found about it:

Vitiligo

Find out about vitiligo, which is a long-term condition that causes pale, white patches to develop on the skin.

www.nhs.uk

"Vitiligo is a long-term condition where pale white patches develop on the skin. It's caused by the lack of melanin, which is the pigment in skin."

and then there's this:

Effect of fatty acids on melanogenesis and tumor cell growth in melanoma cells

Fatty acids have various physiological effects on melanoma. For example, palmitic acid (PA) increases melanin levels; linoleic acid and DHA decrease melanin levels; and DHA suppresses tumor growth. In this study, we focused on the relationship between ...

www.ncbi.nlm.nih.gov

"Fatty acids have various physiological effects on melanoma. For example, palmitic acid (PA) increases melanin levels; linoleic acid and DHA decrease melanin levels; and DHA suppresses tumor growth."

My own experience with this is limited to my husband's skin issue. 37 years ago, he had a dark tan, which made sense because he is 5/8's American Indian. However, over the years, he insisted on eating at restaurants a LOT and he ate a boat load of PUFA on a regular basis. Now the skin on his arms, hands, and face no longer tan; instead they burn. He has lost a lot of melanin.

Around 8 years ago, when the skin doctor started burning things off of my husband on a regular basis, I talked him into avoiding PUFA and to slather himself with hydrogenated coconut oil or a mix of half coconut oil and half lanolin. He did that everyday. After several months of this, low and behold, the skin doctor couldn't find anything that needed burning off and told him that he didn't need to come back anymore. So my husband's skin massively improved on this regimen. However, he fell off the wagon after a few years and his skin has deteriorated again.

So my suggestion is to avoid PUFA like the plague and slather yourself with hydrogenated coconut oil and lanolin (50-50 blended together).

 

[Nebula]

Thanks @Nebula - I am certainly interested in reading into the cream more - thanks so much for the information.

Although I must admit, my initial instinct is to say that it may not be the "right" way to go about it.

Instead of preventing the unhealthy state that is causing the auto-immune response in the first place, the cream is basically crushing the immune response at the source... like a drone strike / nuclear bomb to stop an army... I'd rather negotiate and stop the conflict from first principles - if you get my drift.

Similarly with the UVB - the UVB definitely does work to *some* extent. But it's like trying to scoop water back upstream - it feels futile. Repeatedly low-level burning your skin to quash the immune response... probably not the best way to go about it long term, and could create other problems even if it is partially successful.

Still, if I can confirm that there are no other downstream effects, I think I would consider trialling the creams.

Just passing along my experience with achieving some repigmentation and what I've observed from those trying to repigment. The only people who have any significant results are using immunosuppressant creams + UVB. There's a lot of wishful thinking and scams surrounding vitiligo treatments. I do think anti inflammatory and mitochondrial treatments help, things like molecular hydrogen and red light, but might not cause much repigmentation.

 

[Blossom]

@Nebula, thanks for sharing your experience with tacrolimus cream. I might give it a try since I've been low pufa for a longtime, my D status is good and I've tried red and UV light.

 

[mostlylurking]

@Nebula, thanks for sharing your experience with tacrolimus cream. I might give it a try since I've been low pufa for a longtime, my D status is good and I've tried red and UV light.

Hi Blossom, Have you tried slathering yourself with some hydrogenated coconut oil + lanolin? Also, I recently listened to a Ray Peat interview where he says that as people age their skin becomes deficient in cholesterol and he suggested applying it topically.

It's this video, but not queued to exactly the right spot:

View: https://youtu.be/5j-SodZE6C8?t=745

 

[Lejeboca]

- I have even been so desperate as to look into homeopathy.

Curious what homeopathic remedies did you try or what have you read/considered with respect to homeopathic treatment for vitiligo?
There seem to be many and their choice would depend on concomitant symptoms.

 

[PhilParma]

I have vitiligo on one of my eyelids. I have recently begun applying copper and folic acid directly onto the skin around my eye. It probably won't improve anything, but I'll let you know if it does.

 

[Ras]

I have vitiligo. It sucks.

I was diagnosed at age 19 - I am now 32.

Many of my diet choices over the years have been at least partially guided by the thought: "maybe this could help reverse my vitiligo..." - nothing ever has.

I learned around age 23 about "leaky gut". I was working with the theory that a "leaky gut" (from grains, PUFAs, certain vegetables, standard western diet) was causing harmful particles to get into the bloodstream, which were then creating havoc in the system. One of these horrible symptoms being vitiligo.

Paleo -> Low carb paleo -> keto -> carnivore -> carnivore and honey / dairy

All of these were done, at least in part, with the hope that vitiligo would disappear. Maybe if I cleaned up the digestion and repaired the intestine, then the autoimmune condition would regress / revert to previously... this did not work.

Does the bio-energetic view have an understanding of why this condition happens? OR thoughts on how to reverse?

Ideas I have looked into:
- leaky gut
- copper deficiency
- folate / b12 deficiencies
- UVB therapy (this technically works, but is like trying to scoop water back upstream..... not a long terms strategy. It also damages the skin over time if done too much).
- high dose vitamin D (check figure 9 A pilot study assessing the effect of prolonged administration of high daily doses of vitamin D on the clinical course of vitiligo and psoriasis really cannot explain why this would happen... I wonder if high dose vitD is actually immunosuppressive).
- I have even been so desperate as to look into homeopathy. German New Medicine (GNM) associates vitiligo with "separation conflict". I.e. a traumatic separation. This first sounded attractive to me as an explanation, because my vitiligo appeared around a very stressful period, where: my "first love" dumped me, my grandfather died suddenly, and my older brother left home (all in the space of a month or so). However, their "cure" for the condition seemed very dubious - hocus pocus voodoo woo woo... too good to be true. So I didn't pursue it further.

I had guessed that the bio-energetic view would be some kind of "energy" problem. For whatever reason, the melanocytes do not have the energy to create pigment...... why? how? how to reverse?

Interestingly, I also have high autoimmunity in the thyroid gland - apparently this is common in people with vitiligo.

I'm really sick of this condition. And sick and tired of being sick and tired along with it.

Could it be a fungus in the skin? I believe the cause of some skin conditions similar to vitiligo has been proven to be fungal.

 

[BigShoes]

Thanks all, for the ideas and kind words.

@Lejeboca - I haven't truly read into the homeopathy side, but recently saw a GNM (German New Medicine) paper which had an interesting section on vitiligo:

"VITILIGO develops when the ulceration reaches into the basal layer of the skin that consists of melanin-producing cells. The depigmentation creates the white patches typical for vitiligo (compare with tinea versicolor involving the corium skin; see also Scarlet Fever). The separation conflict related to the deepest layer of the epidermis is – subjectively - perceived as particularly cruel or “brutal” (loss of a loved one, physical abuse). The white macules appear at the site(s) associated with the separation. Hair that grows on areas affected with vitiligo turns white. Albinism, characterized by white skin and white hair, is caused by a generalized, “brutal” separation conflict suffered by the unborn child. Due to the complete loss of the pigmented skin layer a repigmentation is no longer possible, even if the conflict is resolved." Skin

The idea seemed attractive, because this is exactly what I went through (three-fold) when it first struck me. However, I think this explanation is just trying to tug at my heartstrings, to buy in to their ideas - it's common knowledge that autoimmune conditions' onset often occurs around stressful periods. I found their supposed treatment cure in another paper and it didn't seem like something anyone should try...

Hi @PhilParma - I have tried higher dose copper and B9 internally - no luck. But it does seem to be implicated with deficiencies in copper / B9.

@Ras - due to the lighter colour of my natural skin tone, I was initially convinced that I had a fungal infection after I first noticed the phenomena and did some googling (2009-10?). I thought it might be tinea versicolor, but more likely ringworm - the patches that appeared below my navel were broad white patches with reddish-brown rings around them (I later knew these were essentially concentrated melanin and some inflammation). However, there was no scaling or disruption to the skin as typical in fungal skin infections.

I went to a doctor and told them "I think I have ___" - big mistake. They didn't even look, they just prescribed me an anti-fungal cream (Ketoconazole and corticosteroid mix - a VILE, VILE combination) - this anti-fungal cream did nothing but permanently spoil, destroy and thin the skin in certain places of my body. And obviously, it did not clear the marks (because they are vitiligo, not fungal).

I continued to go to different doctors with the line "I've got a fungal infection and..." - so they kept prescribing anti-fungal things - none of them did anything. After months of panic, and further spread, I developed severe obsessive compulsive disorder / OCD around "germs" - I was terrified of someone touching me, just in case I inadvertently gave them what I had got, and also became fearful of touching my friends (hand shakes, taps on the shoulder, hugs, whatever) because (a) I might give them this thing, and (b) they might give me something else.

My father finally paid the 200 bucks to have a private specialist dermatologist to look at it. Straight away, he told me it was vitiligo. He hung a UV light over me to show me where was affected. He told me it would become very apparent if I went on holiday in the sun... so that's exactly what I did - I went abroad to Cyprus, got a tan, and sure enough... he was right. It was very obviously vitiligo. Damn...

Incidentally, the contact OCD did not leave me after the diagnosis - it spiraled out of control and robbed so much from me between the ages of 20 and 24. The trauma of the diagnosis, and spending so long believing I was infectious to the touch, had deeply ingrained a lot of obsessive-compulsive thoughts and behaviours - and I had no one to talk to about it..... I kept it very well hidden from others for a long time, but people eventually started to realize something was up. I was shunned / made fun of by my family - because they didn't understand it / were scared of what I was doing - I don't blame them for this... "why does [BigShoes] keep standing at the front door for 20 minutes before he finally leaves? Why is the bathroom tap running for 45 minutes at a time? Why does he avoid physical contact / panic when someone touches him? Why does he wash his clothes so often?" - the condition looks like insanity from the outside. My brother called me Howard Hughes / Mr Burns (
View: https://www.youtube.com/watch?v=0EO_r8HnD1s
).

The most painful thing is that the OCD sufferer KNOWS, logically, that what they are doing is ridiculous. But you just can't snap out of it... to this day, I'm pretty shocked I still managed to get a first class honours in my degree (I believe it's called summa cum laude in America) and managed to hold down the job I got in my early 20s (subtle / not-so-subtle brag, I guess). Brutal time.

Interestingly, I managed to "cure" my OCD 95% by quitting all grains in my diet (when I first heard about "leaky gut" and went "paleo"). It went from c. 3-6 hours of compulsive rituals per day, and constant panic / stress, to taking about 15-20 minutes out of my day. These days - it takes around 30 seconds out of my day in terms of "rituals" (counting rituals when locking the front door), but I still have an obsessive personality. Not fun. Would not recommend. Most likely cortisol and serotonin related.