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What happen around the age 21 in a male body ? Seb derm onset
@max-3 Yeah I have been there as well. I've tried all the functionnal tests/diets/supps/topical solution under the sun to get rid of it and it never did anything. I've been low vA since june and nothing either. For me too, it's not flare-up or not flare-up : it's constantly there 24/7. And if I indulge in certain food (milk being one) it will spread on some new area as well.
The honey/lean venison/berries diet would be very hard to handle long term for sure lol.. But I feel even if you have some improvment, not being fully cured nor being able to get out of the diet means that underlying issues are not resolved.
I have recently read Dr Broda Otto Barnes's book on thyroid. He talks a lot about skin issues (not seb derm as it's close to mission impossible to find proper data on it I feel) but a lot on acne - he says that 90% of acne cases respond very well to thyroid, and have low basal temp. IMO acne and seb derm have a lot in common as it's the same spots rich in sebum that are impacted. Often there is hormonal disturbance as well.
So I have done a 24h urinary T3/T4/RT3 per g of creatinine test - and guess what despite my blood results being OK, as per the urine test results my T4 is OK but T3 is actually low (see pictures). It makes actually a lot of sense since during my studies (I have a Master in Biology & Medicine) we used to talk a lot about T3 being intracellularly active and pulsed through the day via certain mechanisms dependant on the SNC and cyrcadian rythm. So basically, your T3 in blood is a poor representation of what's really going on inside the cell AND throughout the day. Basal temp under the armpit upon rising before getting out of the bed is a great tool too - you want at least 36.6°.
So I have started to supplement with NDT (very small dose for now) and as per my OURA ring, my resting heart rate (which is usually very low around 46bpm) is raising (around 53 now) and basal temp is very slowly rising. I feel transit time is better too (constipation tendancy). Goal is to reach 36.6 basal temp and reach 60-70bpm and asses.
As per Dr Barnes, usually you want to stick to the proper dose of NDT for at least 6months to see if there is a result on the skin.
I feel that I have observed the same thing than you, the lack of calories can worsen it a little bit. Like when I fast (I've tried multiple ways of fasting +/- long) it usually will not improve at all, and even worsen on some ways (and no it's not "detox" it's just spreading) and fasting will supress your thyroid even further (like the lack of kcal) so... And I don't know for you but I have low basal temp, low resting hear rate, low blood pressure... So this is why I wonder if the thyroid/pro energetic approach could help. IDK. I guess we'll see !
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Jenny : I think we already discussed this ont the LYL network, but what would be the best way to assess this secondary porphyria ? I don't feel that AC relieve anything for me tho.
So if pyrolurria is and underlygn issue as per dr K, then Kryptopyrole should be elevated ? I'm waiting to receive the test actually.
Also, you're mentionning genetics - what gene is implicated ?
Jiri : Yeah I have tried most of these already and sadly (would be so easy) It's def not mineral/vitamins related. I've been digging the toxicity thing for a while but I really start to doubt that this has anything to do with vA
Hi @mat yes we’ve chatted about this. It’s just a rabbit hole I’m going down. If you get a positive pyroluria test then it may be something worth looking at. However, I thought your ALDH theory sounded interesting along with your thyroid issues. When you get to the bottom of what is going on for you I think you will be able to help other people. We all have our own puzzle to figure out but pieces of ours may be relevant to others too. VA toxicity was massive for me but in addressing that I ignored my pyroluria. I should have addressed both in parallel. Big regret.
There are no gene tests for pyroluria (that I know of) but there are 8 enzymes in the heme pathway implicated in porphyria. People with diagnosed genetic porphyria have mutations in one of these. Secondary porphyria seems to be more a genetic predisposition with an environmental trigger - heavy metals are the best described - that slow one or more of the enzymes and cause porphyrin build up and symptoms. I have a theory that vA toxicity/strong detox could worsen secondary porphyria in genetically susceptible people (idea for detox setback cycle). Lots of other things can trigger porphyria too like excess alcohol and stress.
@jaj Well I'm really curious to see what will give that pyroluria test for sure !
Yeah and those enzymes in the heme pathway that are implicated in porphyria are the one on the picture below correct ? We talked about that and how lead could do that by being a cation thus thioloprive and substitute itself instead of zinc which is a cofactor for these enzymes.
I think I will dig a bit this subject too, since heavy metal replacing certain mineral (such as zinc) is an interesting subject, especially because seb derm is linked to zinc deficiency (among other) but zinc supps never helped so I wonder if something like this couldn't be at play - having enough zinc but certain heavy metals could be interfering with it's proper function..
Edit : Maybe I have already ask you this, but is there a way to measure porphyrin or porphyrin precursor (blood, urine..) to see if there is an excess of it ?
Edit 2 : Do you have low hemoglobin ?
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Dairy just seems to trigger autoimmunity really hard. I think it is mostly the milk sugar, I never had a clear flare up from butter.
Interesting but from my personal experience sebderm has not anything to do with body temp, heart rate and blood pressure. When I did the carnivore diet and worked out a lot I had higher blood pressure and heart rate. It got even too high.
When I was fruitarian both were extremely low. Too low probably. Yet on both diets I never managed to cure sebderm.
Also fasting does help me, but the problem is it does get worse again when I start eating again, so I never gained any longterm benefits from it.
@max-3 Interesting. You too seem to have tried a lot of shit to get rid of this crappy disease.
I'll report about the thyroid stuff in a couple of month just to let you know.
Since when are you doing the low vA stuff ? Did you started it to see if it could help your SD as well ? And what is your current "diet" in order to minimize the SD ?
I have several other rabbit whole that I'm investigating, but I think I will start a new thread where I will list all "theory" of mine regarding seb derm. Maybe some other persistant SD sufferers can join and participate. I'll tagg you there.
Quote from Mat on January 19, 2022, 12:44 am@max-3 .
Since when are you doing the low vA stuff ? Did you started it to see if it could help your SD as well ? And what is your current "diet" in order to minimize the SD ?
I was low A for like 6 months but didnt see anything happening. Yes I tried low A mostly for curing SD, which did not work, not even an improvement. The only time I felt some sort of change while eating low A was when I ate only white rice and 400 g of red meat a day. On this diet my eyes were a lot less dry and it seemed like my myopia got better (this also happens to me when I am fasting). But sadly my sebderm got worse with white rice so I stopped it and switched to honey + low A fruit again as carbs. This made my sebderm better but my eyes worse.
Right now I am not on a strict diet anymore because I was very strict for years (as I told you I was on every diet there is and never cheated!) without much success and I recently found a topical "cure" with seawater. So I am symptom free when I apply seawater 3-5 times a day.
I will chill for a couple of months and then I will try again to find a diet to cure it.
Here are the things I know for sure that makes it worse for me:
- Bananas (only large amounts), tomatoes, peppers
- raw egg whites
- Coconut products (this is the weirdest one I think. But I get very weird symptoms from it)
- Milk and Yoghurt. I react very strong to milk (even raw, organic, grass fed)
- and the last few months I also noticed high amounts of animal fat and commercial beef are a problem for me. I always ate fat trimmings raw btw. And most of the beef I ate also raw.
Things I want to try in the future:
- Really load up on Vitamin D by going in the sun more when it is summer
- 2-3 day juice fast to flush my colon followed up by a 30+ day waterfast
- Eating a lot more calories especially from carbs while keeping the fats lower. Grains are the only carb source that is dense enough to do this. I dont think I should eat 2000+ kalories worth of honey. With all these strict diets I have done I was calorie-starved and very lean most of the time so I think that might have prevented me from healing because of higher stress hormones, but I am not sure.