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*Emily*

At A Loss After 24 Years... Any Suggestions?

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Thanks Jason.

I already struggle to get through the day as I feel tired all the time. I think if I ate less it would affect me (by lunch time I am already starting to feel faint, I need to eat something every 2 hours really), but also I don't think that eating more would be the answer, I think my calories are about right, I have to get my system sorted out and improve the quality and quantity of my sleep if I can.

Had my follow-up naturopath session and some things that he flagged up before were resolved, but others like thyroid and B12 were still an issue, so just waiting for his full report to come through and next bottle of herbs. Will keep going with the diet. Found a recipe for a drink that should be good for skin and cleansing in general: 5 apricots, 1cm slice of ginger, 100ml each of apple juice and oat milk, all blended. Sounded odd but tasted nice and felt healthy.

My skin is much better than it was last year, but still looking pretty far from clear. Probably only 2 big painful lumps and some smaller ones that take ages to go and just stay as smaller lumps under the skin until they flare up again. Been very oily last few days but not sure why.

It's a long road, as you say, but I hope I'm taking steps in the right direction.

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I'm glad to hear things are getting a little better! I'm not sure about your smoothie...it seems like it might be too sweet (apple juice) and may be too high in histamine (dried apricots). A green smoothie made with oatmilk, ginger, greens and some berries might be better if you are still inflamed. I am slowly learning about this myself. Just like you I am taking diet very seriously and it seems to be helping...especially now that I am paying attention to high histamine foods. My skin can flare-up suddenly just like yours...clear skin to lumps in hours...which says to me it is something very internal. My doctor thinks it is allergies and gut issues. You may want to check out my post in nutrition that highlights some articles on histamine and its effect on the body. There is also a list of high histamine foods. Many of which are very healthy but they may not be good for people suffering with inflammatory skin diseases! Anyway, I hope this helps.

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Thanks for the comments. I have never made a green smoothie, they just sound horrible, so I haven't been brave enough to try one yet. I'll have to give it a go. What greens do you use? Lettuce type or cabbagey?

Though I've cut out sugar, I still crave sweet things, and can't drink my herbal teas without honey in them. Really wanted sugar today, but managed to avoid the chocolate my daughter was eating and eat a papaya instead. I feel like I have to keep cutting back on things but I'm not finding much to replace them, so struggling a bit with my diet.

Will have a look for your histamine posts. Thanks.

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Hi Emily, it sounds to me as if you have got your total calories just about right. One thing I suspect from your reply is that you eat breakfast, lunch and diner. Although your total calories may be about right the problem with consuming them in three meals is it sends your blood sugar levels on a rollercoaster ride (not good for creating oily skin and stress for those of us prone to it). What works for me is when I start feeling a little faint I eat about 3 to 4 mouth fulls of food. That way I end up eating somthing about once every hour and have energy to do what I gotta do yet I aviod the acne. I apreciate this may not be possible for everyone depending on your work situation but it has worked for me.

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Hi Jason

I do find that ideally I need to eat about every 2 hours otherwise I can feel myself going downhill energywise. I work in a school though, so it's not usually possible to eat and drink when you need to, you just have to fit it in wherever there's time, and on occasion even going through til 2pm having eaten nothing since breakfast at 8, in which case I am totally lightheaded and heading for a migraine!

I do my best though and try to get in a raw fruit/seed/nut bar at break, then another healthy snack at about 3pm. If I'm at home I can snack throughout the day on seeds, hummous and carrots etc.

Had another whole clear day this weekend, followed this morning by one of those horrible lumps right between the eyes and another mid forehead. Still, the rest of my face is pretty clear apart from the old red marks, so doing much better than when I started posting at the end of last year.

Oh, another observation...

I have always said that sugar and caffeine don't effect me. In the (long distant) past I could drink a cup of coffee and still feel tired, and sugar never gave me a pick-me-up. Cold and flu remedies seemed a waste of time as I never noticed a difference.

This weekend I've had a bad cold and took a couple of flu capsules containing caffeine. Within 20 mins I was properly sky high, like being on speed! On Friday morning the effect was so strong that I was almost too "fizzing" to do my job.

Interesting change. I guess it's the knock on effect from my change of diet. Maybe I have managed to detox my system to the point where it really notices a little caffeine, whereas before I was so overloaded that it didn't even have an effect.

Edited by *Emily*
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Well, 3 months have gone by and I am still no further on, so reluctantly decided to give conventional medicine another try and went back to the doctor, who tried to put me on the progesterone contraceptive pill. From what I read online the common side effects of being on this type of pill are acne, hair loss and depression, all of which I am already prone to, and it seems progesterone is what contributes to pre-menstrual flare ups, so presumably if I take this, it will be like the worst time of the month in every respect, but the whole time! I don't think I'll risk it, unless anyone here has found progesterone a cure?

She also put me back on benzoyl peroxide and referred me to another doctor, who I am due to see next week.

I'm keeping up with the diet changes and still on the herbal medicines and selected supplements, so my overall health has improved even though my skin is pretty much the same. Might sound odd, but although I still have constant breakouts mostly on my chin, the general feeling of my skin has improved.

Any progress and I will post it up.

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I feel for you. I am 31 and had acne since I was 14......I have spent all this time trying to fine a miracle cure.....really sucks.

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Hi Emily,

I really feel for you, love. I'm 38 and have acne issues since I was 14yo. On and off. Just wrote a big description of my scenario in another thread here:

http://www.acne.org/messageboard/index.php/topic/288705-how-i-cleared-my-acne-after-26-years-try-it/page__pid__3256311__st__240#entry3256311

(a recent comment near the bottom of the page).

A combination of Pantothenic Acid and L-Carnetine (both in reasonable amount dosage and not mega-dosing at all) seems to working quite well in reducing my oil and in just one week I can see and feel improvements in my skin. I think Dianette is a progesterone pill, but it worked really well for my skin although it takes a while and can lose effectiveness if you stop and then re-start it....

Anyway, best of luck!

Katy

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Thanks, "thisisnothollywood" and Katy, I wish I had more positive results to report that could help others too!

Katy, Dianette is combined - progesterone and estrogen, which I cannot take as I get severe migraines (numbness, visual disturbances etc) on it, which I think also puts me at higher risk of having a stroke. I was put on Dianette about 15 years ago but it didn't improve my symptoms. Every contraceptive pill I have tried so far has made my skin worse and made me more depressed. The progesterone coil, which my dr said would be fine "as it's localised and won't go round your whole body" is what triggered off my latest round of severe breakouts (plus daily migraines) about two years ago, so I think I need to rule out hormonal contraceptives altogether.

My herbalist included black cohosh (an estrogen like herb) in one of my mixes recently and I got headaches every day til I stopped taking it, so am clearly still very sensitive to hormones.

I already have Pantothenic acid in my daily vitamin, but not L-carnitine. Will look into that, thanks.

My skin has improved in the last couple of weeks, and I just braved a nearly-no-make-up weekend (well, just concealer on my red marks and scars, but no foundation or powder) for the first time I can remember in about 2 decades. However, I think the only reason it has improved is because I have been using the benzoyl peroxide & clindamycin for the last fortnight. Currently got a huge lump in the middle of my forehead (mercifully covered by my fringe!) but the rest of my face is just red marks and scars, not fresh breakouts on my chin, where the main problem usually is.

I don't want to be using bp all my life and it did stop working after my last 2 year period of using it, plus it's just a sticking plaster effect as it doesn't address the cause, and doesn't stop all the breakouts, but it's the only thing giving me any results right now, so will stick with it for a while. Got another dr appointment this friday with their skin expert, so will see if he comes up with anything new.

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Emily, how much Pantothenic acid are you getting? Is it just what's in the B Complex you're taking? I would be aiming for around 500-1000mg per day along with the l-carnetine to give it a proper go. I've been avoiding taking a B-Complex along with it because some of the B vitamins can flare acne (supposedly) and I have a pretty good diet anyway.

That is a real bugger re: the effect of contraceptives on your body.... bummer.

Good luck!

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I really really wanted to naturally cure my acne for a number of years...but it comes down to money. I have spent thousands trying to find my "intolerances" and taking supplements and trying to eat better, hoping I would eventually stumble on the magic diet and lifestyle that would cure my acne. I can't afford it anymore.

I have been on 100mg spiro for 4 months and for the first time in YEARS my skin is clearing...fingers crossed. For a measly $10 a month.

I eat very little dairy, low sugar, no alcohol, no caffeine...though none of those things ever cured my acne, they do help me feel better and have more energy.

Edited by Green Gables
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Hi Pinky_shushu - until a couple of weeks ago I was taking B complex 100, which had 100mg pantothenic acid in it. Have now switched to a multivitamin that has 25mg, but still taking the B complex on alternate days. My naturopath says my B levels are still low, but I was worried about taking both together as there are side effects with high doses of B6 especially, I thought. 500-1000mg is much higher than I expected! Will look out for a pantothenic & L-Carnitine blend next time I go to the health food shop to stock up.

Hi Green Gables - yes, I know what you mean about the money side of it, my herbalist/naturopath appointments come to almost £100 a month, and that's without the supplements. I just can't afford it any more. My diet changes have helped my overall health so I will keep up with those, just a shame they couldn't balance out whatever is wrong with my body. Good luck, I hope you have found your cure, and you know your diet changes are having a positive effect on your general health, so that's a bonus!

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i feel for u Emily!! this is so perplexing!! it takes at least a month of trying something new to see if it makes a difference, ugh! it sounds like all the oil production is glandular or something. i really hope u & ur doctors finally find out the cause!! i agree, our skin is an organ & it is when our organ acts all out of whack & flares up that we know something is going on with our body chemistry/physiology. good luck to you!! comfort.gif

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I feel for you. I'm also 37 and have had acne since I was 10. I was pretty clear for a long, long time (after 2 courses of max dose Accutane in my early/mid 20s and being on Ortho-Tri-Cyclen). Got off the pill in November, started getting oilier and oilier, and now am breaking out all over again (been on Aczone for exactly 8 weeks and it didn't seem to be doing much good or bad, and then literally just 2 days ago my skin broke out in like 12 major swollen whiteheads out of the blue).

Anyway, a friend I've known since junior high who's never had a zit in her life got Mirena and started breaking out all over her forehead and she'd get them on her cheeks (which is odd because I always thought hormonal acne was confined mostly to the nose/mouth/jawline area - but I guess it can happen anywhere, which is the worst thing about acne).

Anyway, if it's any help, she got rid of Mirena and her skin cleared right back up - but it took quite a while before she stopped breaking out regularly, almost a year, actually.

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Acne has got to be the worst disease out there! It destroys confidence and flares up for no reason! I was clear for almost 4 months here and then suddenly yesterday went from absolutely clear skin to 3 big red bumps by evening. So depressing. And I'm scared shitless it'll get worse. I'm on a very complicated regime...different for am and pm...that is hard to follow in summer. Skipped a few days about a week ago and am paying the consequences. G-r-r-r-r-r-r-r-r.

Anyway I'm back now on my complete regime and praying that my skin calms down. I've been struggling with this since age 15 and I'm now 61 (yes...ancient). The only thing I can add to this conversation is that I've achieved clear skin only when I follow my derm's advice to the letter. No cheating. And I have always eaten very well. I tried going natural but it never worked. The only things that have worked are conventional meds. Diet helps but doesn't solve the problem.

Good luck!

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Hi ramblinrose and kcr, thanks for your comments. Yes Mirena definitely did it for me, after my skin being not clear but tolerable, the coil sent it into a nightmare. Had it taken out over a year ago, but still suffering the side effects on my face - though at least the daily migraines have stopped!

Hi cvd, sorry to hear you're having a bad time again! What do you think caused it - did you slip up on your diet or did you miss some meds? I hope you can get back on track and back to being clear again.

Had a dr appointment this morning - decided against cerazette (progesterone only pill) since its common side effects include acne, hair loss and depression. Had enough of those 3 already without taking something that's almost guaranteed to make them all worse.

Finally got a referral to a dermatologist, though the dr said they have nothing to offer except accutane. I did suggest an endcrinologist since my hair loss, facial hair, heavy/painful/irregular periods suggest that I have an underlying hormonal problem that accutane won't resolve, but he said no, since I already know I can't use medicines that manipulate hormones as evidenced by the bad reactions I have to the pill/mirena.

In the meantime he has prescribed me a nicotinamide cream, after asking whether I wanted to go back on any of the antibiotics that I have already tried. Didn't see the point in that, if they didn't work 6 months ago I don't think they will work now.

So now I just need to wait for my appointment to come through and hope for a miracle in the meantime!

Good luck everyone, and thanks for your comments.

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As the heading suggests, I am at a total loss of what to do next and would welcome any suggestions. I've read around so many pages on the web that I just feel confused as to where to go next, but I can't stand being where I am now.

I'm 37 and had acne for 24 years. I have scars all across my chin (literally not even half a cm is free from scars) and spread across my back, with a few others dotted about my face.

I made the mistake of getting mirena coil 2 years ago, as my dr assured me that the hormones wouldn't spread all through my body like the usual pill (they have prescribed various contraceptive pills for me in the past specifically for my skin, but each time it has got worse and I get blinding migraines and depression).

With mirena my skin got much worse on my face, back and chest (I had to wear scarves during the summer to try and cover up how bad my chest was), and I got prescribed BP for it. This improved it a bit - down to continuously 1 or 2 cysts on my face at any time, but in the summer my forehead started breaking out with lots of smaller ones.

I wanted a permanent solution, so got the coil removed and had a course of microdermabrasion last summer - it got worse.

Dr then prescribed 4 months of differin and tetralysal /lymecycline - my back and chest improved a little but my face was still bad, possibly a bit worse.

I've spent the last month on aknemyacin plus topical solution (tretinoin) and no difference yet.

Dr doesn't want to refer me to a dermatologist and I am reluctant to try accutane given the side effects (I have joint pains often enough as it is, and don't want them to try and put me on the pill again)

I have 5 huge painful cysts on my face at the moment, plus some smaller ones. I really don't want to even leave the house right now, but I work in a school so can't avoid it. I see people looking at the huge lumps on my face and just feel so depressed. It's also affecting my relationship as I feel so ugly..

I have cut wheat, dairy and sugar out of my diet for 2 months now and seen no difference.

I drink smoothies every day to try and increase my vitamin intake.

I switched my foundation to Clinique mineral powder as it had good reviews, but it has made no difference. My partner hates me wearing makeup and is convinced that's the problem, but that doesn't explain why I get acne on my chest, back and all through my scalp.

My skin is very greasy - within 2 hours of washing in the morning, it has come through my make-up (one child asked last year why my face was wet!)

I tried using the oil cleansing method with castor and jojoba. My facial skin didn't get worse initially, but after a few weeks I got lots of spots all under my jawline and down my neck, which still haven't gone even though I have stopped and gone back to using bland facewashes.

I feel like I have tried everything I can think of and ended up with nothing. Feeling v depressed. Does anyone have any suggestions?

Drink wheat grass juice daily We get it here in amazing grass/jamba juice. Also try making homemade kefir if you can

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i vouch for the kefir in general! if u cant make it at home u should be able to find some at a farmers market or health food store. much love to you Emily!! dont give up on finding an endocrinologist even if ur dr doesnt think it's a good idea. if u have the time & energy & money it couldnt hurt to get another opinion. :)

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Thank you both. I have started taking L-carnitine and will look into where I can source kefir and wheatgrass. Time, energy and money are all at a bare minimum, but I'm planning to speak to the dermatologist about the endocrinology possibility when I get my appointment through.

Skin is very painful today but no surprise, my daughter has been ill for over a week, had an unpleasant run in with my ex yesterday and my cat is due to be put down tomorrow, so very stressful times!

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Thank you. Cat was given a reprieve and is downstairs on her cushion. She's still "going" but the vet said she wasn't suffering, so just trying to give her lots of care and make it as comfortable as possible for her. She's still happy most of the little time she is awake.

No breakouts today, though this last week has been a major oil producing one. Will take it one day at a time and see what tomorrow brings!

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Hi Emily --- I feel for you and the stress you are under right now. Hope it eases up soon! If for some reason you think the meds you're using right now aren't working you may want to try what I'm doing (see signature below). My derm is well known and expert at resistant adult acne. He has worked wonders with my extremely resistant cystic acne. My skin is beautiful. I hate to jinx it by saying anything but all redness is gone and pores are shrunk and all bumps and lesions are gone. Amazing...

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Hi cvd

So glad to hear that something is finally giving you good results!

I was just looking at your regime notes on a different posting and thinking I must ask my dermatologist about spiro (when I get there - I had a letter through to say I have been referred, so now I just have to phone up and make an appointment).

Both my doctors have said the ONLY thing a derm has that they don't is accutane, so I am curious to actually speak to one and find out why spiro hasn't been mentioned. I'm hoping they do have a variety of options and the doctor just didn't know any better or was trying to discourage me from going.

My face isn't looking too bad at the moment, only one huge lump and that is hidden under my fringe, but my scalp and back have been worse for some reason. It's a bit of a mystery!

Fingers crossed for you that you have a long term solution.

I am off now to make my first batch of kefir and plant wheatgrass seeds!

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Just a quick update:

Since the last posting my face has been clear til today (so roughly 2 weeks), which is a miracle!

This is despite my herb and supplement regime going to pieces due to caring for the cat (who was eventally put to sleep just over a week ago).

Although my face has been clear, my scalp and back have not, which leads me to conclude that it is the nicotinamide which has been keeping my face clear.

This week has seen my birthday (ie boxes of chocolates) and a serious allegation from my ex husband attempting to have my daughter removed from me ie heaps more stress, and desire to say "sod it" to the diet and eat bread, cake, chocolate and sugar.

Today have started to get little breakouts over my chin.

So there you are.

At least the last couple of weeks have proved that the herbs, diet and topicals were doing something, and that stress and cake aren't helpful! Got no idea what time of the month I'm at as life has all gone up in the air and fallen down around me in little jumbled pieces!

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Anyone still following this thread? Wasn't sure whether to update or not.

Finally got a dermotologist appointment - was in and out within 10 minutes and all he said was that roaccutane was the only thing that could work for me.

Then went through the potential side effects - hair loss, joint pains, depression, mood swings .... I have those already, I don't think I could face them getting even worse! Plus I'd have to get the copper coil, which I really don't want to as I already have heavy and painful periods and I know the coil has a reputation for making them worse.

Still using the nicotinamide but not sure it's doing much at all - have several big painful lumps, one of which is on the edge of my lip, making it look like I've been punched in the face (great - just what I need for the first week back at school!). Have had to take painkillers at night several times in the last couple of weeks because the pain of my cysts has been keeping me awake.

Not sure what to do now. Need to get back on track with my diet, start my supplements again and see what happens. Not sure what to do about the derm - go back and say I've changed my mind? or just not bother and close that avenue? Or do I risk the horrors or roacctuane so at least I can say I tried it after waiting so long to get referred?

Sorry, just needed to have a moan!

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