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13 hours ago, MovingOnMusicGal said:

Hi again,

Here's what makes me think (again, in my case at least), that the problem is some type of genetic suppression/excitation/abnormality (whatever).  So scientific, I know :P

I instantaneously had psychiatric and joint problems after accutane at 16.  I had to stop running track and I was at a varsity level.  My doctor didn't fricken tell me to stop running..Found out the hard way as my IT band and quadricep muscle have become permanently affected/like a living rigamortis-ed young adult body..bizarre.  Thanks to massages and weekly chiro (thank god my insurance covers it!) i have some semblance of low pain/managable pain management schedule now.  I also noticed, after starting methylation that my muscles and tendons started to feel like they were detaching from the bone, more fluid, loose-like.  Something switched in my body.  Like other things however, I feel as though the methylation is only part.  I do think it is linked to candida, as the toxins have built up in the body over years...some processes (likely thyroid, liver, kidneys, lymphatic system, ATP production, adrenals) shut down OVER time.  I Remember in my early 20's still having oil in my skin AFTER accutane.  it wasn't until YEARS later that my oil production stopped or severely decreased, and joint pain became rampant. To me that indicates something shutting down/hitting a limit in the body.  To this day I think it is reversible, as I every once in a while have a "normal" day. It's usually 1 in 30 days, but it's there and it gives me hope.  I think speeding up methylation, getting that working, can help with clearing infections such as candida, bacteria, etc, and get basic metabolic pathways working so the body can detoxify better.  It is strange to me that there are others who didn't have cystic acne, and they were "fine", or at least didn't blame accutane for their mild depression, and perhaps some dry lips, but we know most of us have way more serious fish to fry here.  Perhaps, some of us have a genetic mutation, or given our circumstances when we took it, something amplified the side effects without knowing.  During my serious research phase, I came upon an interesting finding that many people reported more side effects in 2006.  That is when I took the poison.   I wonder sometimes if it was a "bad batch" or something. But then I also don't want to invalidate others who have taken it at other times, who clearly have been devastated by it.  So who knows. Either way, for me, I've hit a point where focusing on the bath pathogens and yeast, and managing that better has yielded positive results. Exercise is also very important, simply getting movement each day.  Sometimes I can't do much, but light stretching can be the difference between searing joint pain and virtually none the next day.  I'm going to start taking glutamine again, as that seriously helped my gut, and seriously improved my muscle function 10 fold. The only issue is it wouldn't persist when I stopped taking it like many things.    If I can take supplements, make dietary changes, and engage in activities that make my life manageable however, you best believe I am going to do it.  I tried giving up.  Inpatient psych wards are necessary, but not fun...and the cocktail of meds they discharge you with, well, laughable, as they will only make the problem worse., and they did.  I have a great treatment team around me who is supportive, and I think that's the biggest thing that has helped me stay motivated and hopeful.  I'm also going to be getting my medical Mx card very soon.  I think high CBD edibles will do justice to my body.  I've smoked/vaped for years, (obviously I know that doesn't help candida), but have taken serious breaks to focus on diet and supplements.  I can honestly say, the anti-inflammatory effects have definitely helped me manage significantly.  Possibly helped me heal in some respects but to a more minimal degree.  The chiro has been the biggest thing for me for pain relief.  Let me be clear, I have one of the best Chiros in the area.  He does massage manipulations and manual adjustments.  and...they...last.  My head pressure is gone, and my sciatic pain is virtually gone.  Never thought that would have occurred in ten million years. If we focus on pain management on a daily bais (as hard as it fucking is), I think it helps stay focused and on track.  I have my severely down days but I'm resilient and have (i think) been through the worst.  I try to focus on one day at a time, and be grateful for the good days. Sorry, don't really know what my ppoint was, other than, this is what has worked for me in terms of management.  Also stepping back from the obsessive searching for a cure has allowed my mental health to slowly get better.  It doesn't mean I don't still look here and there and try new things.  But it isn't my only avenue. I'm not fixated anymore.  I do still want a cure like we all do. Sometimes I think, [email protected] at least we have each other.  I've gotten more support here than I have from most doctors.  Things could look a lot different if this forum didn't exist, at least for me. Thanks for reading my journal entry lol :)  I wish everyone the best as always.

Dosage?

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My allopathic doctor said I have to take better care of myself and watch my diet , I bluntly told him that I never signed up for ANY of this b.s lol .

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2 hours ago, Gladiatoro said:

My allopathic doctor said I have to take better care of myself and watch my diet , I bluntly told him that I never signed up for ANY of this b.s lol .


Wow what a revelation!!
im assuming you didn't pay him, got up and left!?

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He is a good doctor but hey he is trained to had out synthetic drugs however in places like Germany doctors are trained in natural medicine and drug medicine . A much better system. 

So derms are worried about joint pain and depression he said yes that is a direct side effect from Chemotherapy treatment a.k.a isotretinoin. He basically said it's ( drug) not that bad . Either way you look at it we got severely POISONED.

Edited by Gladiatoro

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Dosage of what? I am taking a few things.  

Also, big news, I am homozygyous for the MTHFR mutation.  10-20% efficiency in processing folic acid = high homocysteine, low b12, and folate levels. Something came back.  I have several other mutations as well but I don't want to jump the gun until the doctor interprets them. :)

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2 hours ago, guitarman01 said:

Severe Symptoms of Hyperhistaminemia after the Treatment of Acute Promyelocytic Leukemia with Tretinoin (all-transRetinoic Acid)

http://www.nejm.org/doi/full/10.1056/NEJM199208063270604

WOW - what doesn't Roaccutane do is now the big question!?

So would this be why some people have responded well by taking Zertec and stuff for hay fever?

I saw a new Dr last night who's going to do some methylation testing etc. She was really good to talk to and is in fact the first doctor that I know who has taken accutane themselves!!

She would be in her 60's id say, she said that she didn't feel too crash hot while on it. I think she said she took it in her 30's. She didn't elaborate on any other side effect but she knows that it's a chemo drug and that it's very powerful - that was certainly very refreshing to hear coming from a doctor!

Doing blood tests next week :)

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17 hours ago, TrueJustice said:
WOW - what doesn't Roaccutane do is now the big question!?

Doing blood tests next week :)
What specific tests, if I may ask?

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Without me prompting her, she wants to look at DHEA, glad when she said she wants to look at Vit D levels too.

Even though another recent test indicated nothing wrong with testosterone, she wants to delve a bit deeper into hormone levels.

We will also look at Copper levels ( I wanted that ). I believe with methylation we need to look at Sam e and something else that escapes me right now - It was mentioned by some others in this page or the last.

Once I get it all done I'll be sure to inform about the findings. I'll also be more specific on the exact tests. One also involves giving urine which my local pathology couldn't do - the urine gets mixed with some sort of acid I've been told. This one is not covered by Medicare!

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Thanks! I have an appointment with my doctor next week, he doesn't really believe accutane messed me up and frankly doesn't really care much about what's going on with me really. (My only visible side effects were hair loss, it's been nearly 2 years and my hair is still falling and thinning). I'm gonna ask him about getting my blood tested.

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Just got out from doing an abdominal ultrasound. I have a slightly enlarged & fatty liver according to the lady. Spleen, kidneys and gallbladder checked out ok!

I don't know whether to do more liver/gallbladder flushed or not??

need to speak to my GP to go over results.

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3 hours ago, TrueJustice said:

I have a slightly enlarged & fatty liver

really? I wonder if my ct scan i had would have picked this up. let us know what they say about this when you get more info. thanks

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7 hours ago, TrueJustice said:

Without me prompting her, she wants to look at DHEA, glad when she said she wants to look at Vit D levels too.

Even though another recent test indicated nothing wrong with testosterone, she wants to delve a bit deeper into hormone levels.

We will also look at Copper levels ( I wanted that ). I believe with methylation we need to look at Sam e and something else that escapes me right now - It was mentioned by some others in this page or the last.

Once I get it all done I'll be sure to inform about the findings. I'll also be more specific on the exact tests. One also involves giving urine which my local pathology couldn't do - the urine gets mixed with some sort of acid I've been told. This one is not covered by Medicare!


Where in aus are you?

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On 4/27/2016 at 7:21 AM, Hitey said:

 


It's diffuse, definitely TE. I never had any shedding before this and based on my parents and grandparents I shouldn't be prone to go balding. And even if I were to lose some hair I wouldn't be like this before reaching 40 or something.

I don't really consider my scalp to be itchy of inflamed at all, and I don't see nothing wrong with my skin, it's just oily as it's always been. I've been to two doctors and a dermatologist in the past 7 months and they all told me the accutane had nothing to do with it and that it wouldn't cause this effect (which I'm really skeptical of) as they've prescribed it multiple times to several patients yada yada. Only one doctor told me that the accutane probably triggered this but that it's still probably a hormonal problem or that I was already gonna lose some hair and I'm just doing it faster.

The mother of a friend of mine took accutane a few years back (she was around 47 at the time) and she experienced quite some hair loss, and then after about 3 years she recovered her hair naturally just like that. I've read some people saying they've never regained hair after years, but also some people saying they did after 6 or 8 years, which is what gives me some hope. I've read recommendations for bumping up my daily biotin dose, taking milk thistle phytosome and changing my diet, and maybe do a liver flush, as my liver and bile flow might still be affected by the accutane. Has anyone gone by this?
Hey dude, im sorry to hear all that suffering  and i really hope that you ill get through this
I think you should seek for a good hairtransplant surgeon and eliminate every other cause of your hairloss one by one so you can aim the problem in a right way.
Seek for a miniaturization test
Seek for a alopecia areata test
and do a blood test aiming your iron level and your biotin level
by what you are saying is possibly that you are experiencing a chronic tellogen effluvium and if its still happening is because the trigger is still there maybe(probably) it was caused by accutane
i recommend you to use rogaine(minoxidil) to help and induce your telogen hairs to the anagen phase again
hang in there bro things will get better

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Update on my situation: as i feared, the success I had with wormwood was short-lived. The positive effects became barely noticeable after just 3 days of usage and the wormwood was really messing with my mind (a side effect I found out was common after a quick Google search). 

Since I stopped that though, I've been working on raising my cortisol. As many of us suffer from adrenal fatigue, cortisol production is halted. Apparently low cortisol leads to dehydration as sodium is flushed out of the body. I have a licorice supplement coming tomorrow, which is supposed to help raise cortisol levels by blocking the enzyme that breaks it down.

Until that arrives, I have been drinking a lot of coffee as caffeine raises cortisol. Despite its reputation as a diuretic, I have actually felt much better hydrated since I started drinking coffee (wasn't a coffee drinker before) and my erections have improved as well (my biggest concern post-accutane).

I'm sure this has already been discussed at some point, but have any of you guys had your cortisol levels tested? 

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37 minutes ago, QuietSoldier said:

Update on my situation: as i feared, the success I had with wormwood was short-lived. The positive effects became barely noticeable after just 3 days of usage and the wormwood was really messing with my mind (a side effect I found out was common after a quick Google search). 

Since I stopped that though, I've been working on raising my cortisol. As many of us suffer from adrenal fatigue, cortisol production is halted. Apparently low cortisol leads to dehydration as sodium is flushed out of the body. I have a licorice supplement coming tomorrow, which is supposed to help raise cortisol levels by blocking the enzyme that breaks it down.

Until that arrives, I have been drinking a lot of coffee as caffeine raises cortisol. Despite its reputation as a diuretic, I have actually felt much better hydrated since I started drinking coffee (wasn't a coffee drinker before) and my erections have improved as well (my biggest concern post-accutane).

I'm sure this has already been discussed at some point, but have any of you guys had your cortisol levels tested? 

I'd be careful what ur taking there. Looked up the supplement it looks like you were taking. Male fern root is highly poisonous. Going to post this excerpt from WebMD. It's crazy this is in a supplement. Also licorice minus dgl licorice I don't think is very safe long term was just reading on it. 

Male fern is UNSAFE. It is a violent poison and should not be taken by mouth. In fact, Canada requires that male fern products be labeled “For external use only.” Since there are other products available that are effective and safer than male fern, there is no reason to use it.

Side effects caused by taking male fern can be serious and include breathing difficulty, nausea, diarrhea, dizziness,headaches, tremors, convulsions, heartand lung failure, eye disorders, muscularweakness, coma, temporary or permanent blindness, and death.

Male fern is a very poisonous plant. Taking it by mouth can cause death. Despite these serious safety concerns, some people use the leaf and other parts that grow above the ground, as well as the underground stem (rhizome), to make medicine.

Male fern is used to treat nosebleeds, heavy menstrual bleeding, wounds, and tumors. It is also used to expel worms, typically tapeworms, from the intestines.

Some veterinarians use male fern to treat worms in animals. Edited by guitarman01

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58 minutes ago, QuietSoldier said:

Update on my situation: as i feared, the success I had with wormwood was short-lived. The positive effects became barely noticeable after just 3 days of usage and the wormwood was really messing with my mind (a side effect I found out was common after a quick Google search). 

Since I stopped that though, I've been working on raising my cortisol. As many of us suffer from adrenal fatigue, cortisol production is halted. Apparently low cortisol leads to dehydration as sodium is flushed out of the body. I have a licorice supplement coming tomorrow, which is supposed to help raise cortisol levels by blocking the enzyme that breaks it down.

Until that arrives, I have been drinking a lot of coffee as caffeine raises cortisol. Despite its reputation as a diuretic, I have actually felt much better hydrated since I started drinking coffee (wasn't a coffee drinker before) and my erections have improved as well (my biggest concern post-accutane).

I'm sure this has already been discussed at some point, but have any of you guys had your cortisol levels tested? 


Im currently using a parasite cleanse which has wormwood in it. Not noticing any huge relief but that's not to say it isn't working!

What do you know about it being harmful??

I have been sneezing more when on it which is a good thing - feels like it's cleaning something and making my head a bit clearer.

You can get cortisol levels checked I believe through blood test.
31 minutes ago, guitarman01 said:
I'd be careful what ur taking there. Looked up the supplement it looks like you were taking. Male fern root is highly poisonous. Going to post this excerpt from WebMD. It's crazy this is in a supplement. Also licorice minus dgl licorice I don't think is very safe long term was just reading on it. 

Male fern is UNSAFE. It is a violent poison and should not be taken by mouth. In fact, Canada requires that male fern products be labeled “For external use only.” Since there are other products available that are effective and safer than male fern, there is no reason to use it.

Side effects caused by taking male fern can be serious and include breathing difficulty, nausea, diarrhea, dizziness,headaches, tremors, convulsions, heartand lung failure, eye disorders, muscularweakness, coma, temporary or permanent blindness, and death.

Male fern is a very poisonous plant. Taking it by mouth can cause death. Despite these serious safety concerns, some people use the leaf and other parts that grow above the ground, as well as the underground stem (rhizome), to make medicine.

Male fern is used to treat nosebleeds, heavy menstrual bleeding, wounds, and tumors. It is also used to expel worms, typically tapeworms, from the intestines.

Some veterinarians use male fern to treat worms in animals.

Sorry what is Male fern plant. Who mentioned using it?

Is that wormwood?

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12 hours ago, QuietSoldier said:

Update on my situation: as i feared, the success I had with wormwood was short-lived. The positive effects became barely noticeable after just 3 days of usage and the wormwood was really messing with my mind (a side effect I found out was common after a quick Google search). 

Since I stopped that though, I've been working on raising my cortisol. As many of us suffer from adrenal fatigue, cortisol production is halted. Apparently low cortisol leads to dehydration as sodium is flushed out of the body. I have a licorice supplement coming tomorrow, which is supposed to help raise cortisol levels by blocking the enzyme that breaks it down.

Until that arrives, I have been drinking a lot of coffee as caffeine raises cortisol. Despite its reputation as a diuretic, I have actually felt much better hydrated since I started drinking coffee (wasn't a coffee drinker before) and my erections have improved as well (my biggest concern post-accutane).

I'm sure this has already been discussed at some point, but have any of you guys had your cortisol levels tested? 


My cortisol has been very high when tested (near the top of the range). High cortisol seems to be a common thing amongst the PFS lot too. 

I think something that is often not factored in though (not saying this is the case with cortisol though) is that you may have high levels of something like B12 or via D for example because your body is unable to utilise it properly. Doctor would say oh levels look fine and wave you on sort of thing, but it's more complicated than that. 

I've never had folate tested, but apparently (going back to 23andme results) you may have high levels of folate on tests which again the doc would say is fine, but very low levels of active (methyl)folate because you don't produce enough of the enzyme used to convert into the active form.  Edited by tanedout

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17 hours ago, TrueJustice said:

Im currently using a parasite cleanse which has wormwood in it. Not noticing any huge relief but that's not to say it isn't working!

What do you know about it being harmful??

I have been sneezing more when on it which is a good thing - feels like it's cleaning something and making my head a bit clearer.

You can get cortisol levels checked I believe through blood test.
Sorry what is Male fern plant. Who mentioned using it?

Is that wormwood?
quietsoldier mentioned  fern in a supplement he was taking with wormwood. 

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On ‎5‎/‎2‎/‎2016 at 10:27 PM, Off the wall said:

Hello everyone. What a thread! I have spent the last 6 years doing all kinds of alternative healing to cure eczema on my hands which started during my 3rd course of roaccutane. Every practitioner sidestepped the crucial information I gave them being that I never had eczema prior to taking roaccutane expect only briefly as a baby. I now have all kinds of allergies and intolerances I also did not have prior to roaccutane. Finally something clicked and I now know roaccutane is the culprit and general eating healthily and exercising does not help with the eczema. I'm going to see an integrative doctor, but does anyone know what things I should test for and what I can do? Because for starters I don't even know which integrative doctor to choose and if they'd even know much about roaccutane damage. 

Thanks 

I am a veteran per say being around these boards for many years. I have to admit I haven't read the following posts. However, with that said Eczema post Accutane is not abnormal,,,,being you tried diet etc...( I am curious on what type of diet) I will do some digging and let you know what helped others :)

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Sorry am new to this page so not really sure how to reply to you? I clicked on quote and am now typing in the box. Also, can I get emails for people replying to my posts? 

My diet is paleo plus rice. No grains apart from rice, no legumes except for tamari, no beans or legumes.  I  tried to go full paleo but without the carbs I felt awful for weeks and it didn't seem to be die off. Just needed the carbs. Sometimes when I eat out my diet isn't so clean (like obviously the foods cooked in vegoil and with soy sauce that has gluten) but basically organic grass finished meats, veg, white rice, root veggies, coconut oil l, nuts and all tht paleo stuff. Minimal sugar. Sometimes dried fruit or honey but not much and not everyday. Bone broth too but my eczema had flared up like crazy and I suspected the broth because over summer (I'm in Australia) my skin really cleared up and I was not drinking broth but kombucha instead. Now it's cold I'm drinking broth and skin is crazy. Last year around winter when I was drinking broth my skin was crazy too. Also, when I first had the eczema  years ago I used Chinese medicine and acupuncture. My doc did things to cleanse my blood and liver and the eczema went away for a year. I was dairy free and gluten free at the time and then when I started eating them again the eczema came back and I developed an allergy to dust mites which makes
me get full blown cracks and itching. 

I don't know what to do. At this stage anything to manage it is better than the full reversal of roaccutane damage.

 

3 hours ago, oli girl said:
On 2 May 2016 at 1:27 PM, Off the wall said:

Hello everyone. What a thread! I have spent the last 6 years doing all kinds of alternative healing to cure eczema on my hands which started during my 3rd course of roaccutane. Every practitioner sidestepped the crucial information I gave them being that I never had eczema prior to taking roaccutane expect only briefly as a baby. I now have all kinds of allergies and intolerances I also did not have prior to roaccutane. Finally something clicked and I now know roaccutane is the culprit and general eating healthily and exercising does not help with the eczema. I'm going to see an integrative doctor, but does anyone know what things I should test for and what I can do? Because for starters I don't even know which integrative doctor to choose and if they'd even know much about roaccutane damage. 

Thanks 

I am a veteran per say being around these boards for many years. I have to admit I haven't read the following posts. However, with that said Eczema post Accutane is not abnormal,,,,being you tried diet etc...( I am curious on what type of diet) I will do some digging and let you know what helped others :)
 Ah I figured how to reply- click the quote box PROPERLY. My reply is above. Thanks! 

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Hi Chico

Interesting what you say about bile. I have been suffering from eczema on my hands since Roaccutane. I used TCM and acupuncture at the beginning and it actually worked and my skin was clear for a year. My doctor focused on a few things- liver, blood, possibly bile?

I'm gonna give her a ring tomorrow to ask her what she did because maybe there's a clue in there. Sigh, it's kinda of depressing yet I cannot let this bring me down. I feel sorry for the others who have it much worse than me too. 

On 13 January 2015 at 6:45 AM, Chico Esposito said:

 

What happens in my opinion is that during some point during the treatment the bile stops flowing and thats when the problems start. You'd still be taking accutane at this point but the body wouldn't be able to get rid of it. After ceasing treatment the body is incapable of removing the accutane and stores it in the body. Thats were the methylation argument comes from. The genes aren't switched on and off without something to stimulate it, so this idea that accutane just switches genes on and off and then leaves the body i believe to be false. I think the accutane is still there triggering the epigenetic changes.

 

Thats why when some of us eat retinol we react so badly to it. Our body is telling us not to consume that substance because we've already got too much of it. What starts as maybe a skin condition starts to get worse and eventually you end up with testicular or ovarian damage due to the Vitamin A toxicity amongst other things like liver damage, hair loss, joint cracking and other manifestations of Vitamin A toxicity. The skin conditions some people develop after ceasing the drug are conditions were the skin grows abnormally quickly like psoriasis. Accutane is stored were you have skin that grows too quickly, so hypothetically if you've developed sebborheic dermatitis after ceasing accutane, that is were the accutane is stored in your body. I'll explain, retinoic acid causes skin cell differentiation, so were it's stored in high volumes will cause the skin to shed or grow at an abnormal rate in that area.

 

It's complex but it basically starts with the bile flow being affected and then the problems get worse due to the continual consumption of retinol in food. It's a case of adamantly staying away from retinol in food if you have a bad reaction to it, not to make you better but simply to stop making you any worse.

Hi Chico

Interesting what you say about bile. I have been suffering from eczema on my hands since Roaccutane. I used TCM and acupuncture at the beginning and it actually worked and my skin was clear for a year. My doctor focused on a few things- liver, blood, possibly bile?

I'm gonna give her a ring tomorrow to ask her what she did because maybe there's a clue in there. Sigh, it's kinda of depressing yet I cannot let this bring me down. I feel sorry for the others who have it much worse than me too. 

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On 26 April 2016 at 6:37 PM, matysek145 said:

@eph95
How were you diagnosed with Candida? Was it a doctor who recommended those supplements to you?

@Tom87
I did the saliva test in a glass and it came out positive (there were the white strings). But still i'm a little sceptical about this...
The more i read about candina on the internet the less i'm convinced to this. It looks like a bussines to me. As i read doctors have a little knowledge about this and neglect (i know, we shouldn't trust them on the other hand ;)). I can only find on the internet some 'stories' how people wonderfully after years of pain find out the candida is the only cause of all their pain and miraculously cure themselves. They say - do that test, buy this supplement and you will be cured. Can someone provide me some worth, maybe scientific information, that candida can really be the bad guy? One day i even found a guy on youtube, who was convincing that it's certain opposite - candida overgrowth is not the cause of all the symptomps or ills, but the ills (like some autoimmunology diseases for example) can lead to candida overgrowth which is not bad itslef. This is the youtube movie: https://www.youtube.com/watch?v=elaJ8Qx8q_A but its all polish if anybody can handle this :;)

I don't neglect all this stuff, i just want to be careful and be 100% sure something is safe... I would really like to do all the tests for sibo, candida and more, but i'm not sure if this is not just the business to take my money and could accidentally lead to worsen my health ::(

Btw., about vitamin D - how could some of you be defficient in vitamin D, while living in Australia?  (I saw some of you live there) ::) You have nothing but sun in Australia, don't you? Would it mean body is not capable of producing vit D itself anymore?

Im in australia and last time i checked i was deficient in vit D too. It's an epidemic apparently. We have to use sunscreen cuz otherwise we'd get burnt and the UV rays are bad here cuz of the ozone layer. Im gonna cut down on sunscreen though now it's autumn and I don't use sunscreen anymore. I don't know. It's not like I put sunscreen on ALL my  body anyway in summer.. 

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