hello.... what i have found that works for discoid lupus...

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Lupie78
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Date Joined Nov 2010
Total Posts : 10
   Posted 11/19/2010 11:46 PM (GMT -6)   
Hello!

I just thought i would share what i have found that works for discoid lupus...

Briefly - i have diagnosed two years ago, went down a western medicine path which has done pretty much nothing except make things worse (elidel/steroid creams - made my hair fall out/plaquenil/prednisone etcetc)

So now i am on a different path, taking control of my own health (and a great big kick up the bum from my wonderful husband):

1. Weekly acupuncture - really helped - for the first time in two years the permanent (yet changing) bright red plaques - mainly cheeks/side of face/forehead/scalp/bit on my neck and chest - started to disappear. I thought i could stop and went back to my previous lifestyle which was a big mistake!! So, acupuncture starts again this week! Traditional Chinese Medicine view discoid lupus as too much heat in the body (possible through repressed anger which i am working on!)
2. Cornflour - just rub over the plaques and it seems to take the heat out of the redness
3. Washing my hair and face in Organic Apple Cider Vinegar (must include the "mother") - this pretty much made the plaques on my scalp disappear
4. Drinking a shot of Organic Apple Cider Vinegar before eating to aid digestion - if 70% of our immune system is located in the digestive track then this must be supported
5. Yoga - I found an amazing spiritual yoga teacher who is just incredible
6. Diet - lots of green and brightly coloured veggies (except the nightshade family) and fish, minimal meat as it is harder to digest, less sugar (bit prone to candida), no caffiene, no spicy foods (boo!), no dairy except pure natural yoghurt, a bit of fruit - like berries but not too much because of the natural sugars, absolutely no chemicals rubbish, minimal alcohol (this is a really tough one for me as i live in a fabulous wine region!!) but going on wine tours was a nightmare as my skin would go crazy....
7. Supplements - Mineral Salts - Kali Phos and Ferr Phos - as recommended by my acupuncturist who is also a homeopath. Do some research on these minerals - superb
8. Supplements - Vitamins - Vitamin E oil (a few drops a day), Vitamin B complex, Hair, skin and nail forumla - I am not sure if these work or not really but it doesn't feel wrong to take them
9. Really super high quality omega-3 fish oil - it is stupidly expensive but is guaranteed to not contain any mercury
10. Only use natural celtic salt
11. Reading Creative Visualisation by Shahki Gawain and repeating positive affirmations every day "I have beautiful skin", "Everyday I am feeling healthier and looking after myself" " I am a beautiful person" etc etc - at first it was weird but now it feels natural - saying it to the mirror with a crazy looking face was tough at first but i can do it now and believe myself
12. Breathing - learning breathing techniques to reduce stress has been amazing
13. Walks in the countryside and enjoying nature
14. Products - i have stopped using any chemical products - i wash with natural virgin coconut oil and my body skin feels amazing... i have yet to find a descent natural deoderant though that actually works!! i will persist on this one
15. Relaxation - every morning and night in bed i imagine a beautiful glowing ball of light above my head and imagine it working its way through my body healing it - this technique is in the Creative Visualisation book
16. Probably most importantly - drinking lots of water

When I was doing all of the above religiously my skin improved dramatically.... it is hard sometimes to stay on the wagon!! I have recently fallen off so i thought i would post this to give me renewed motivation to carry on with my plan. Tonight I will give up smoking - I know this will have great great health benefits - it has been a bit of a stupid crutch in times of great lupus stress but i know how idiotic it is to continue - so wish me luck!!

Things i am going to try next:
1. Bicom - a german electro reasonance technique which can help with determining what is causing flares
2. Taking a probiotic
3. Not smoking
4. Doing more exercise
5. Change my job to something that is more morally and ethically aligned with me!

I hope some of these things will work for you, discoid lupus is a strange thing, i have accepted that i have it but i am determined to figure out a way to get rid of the plaques.

Best wishes to all : )

tykebaby
New Member


Date Joined Nov 2010
Total Posts : 5
   Posted 11/20/2010 8:06 PM (GMT -6)   

HELLO

i HAVE DISCORD ALSO AND i HATE IT MY HAIR IS COMING OUT i HAVE BALD SPOTS. tHANK YOU FOR THE INFORMATION i WILL TRY USING SOME OF THEM i ALSO SMOKE AND TRYING VERY HARD TO STOP MY HUSBAND SMOKE AND HE WANT GIVE IT UP SO IT HARD FOR ME. i WILL NOT STOP TRYING BECAUSE I LOVE ME. i WAS LOOKIND AT DR. OZ HE HAD SOME GOOD ADVICE AND HERB THAT I AM GOING TO THE HEALTH STORE AND GET THEM ONE WAS DEVIL CLAW FOR INFLAMMATION  AND ARCTIC ROOT FOR STRESS AGAIN THANK YOU

MARGIE


Lupie78
New Member


Date Joined Nov 2010
Total Posts : 10
   Posted 11/20/2010 8:30 PM (GMT -6)   
Hey Margie,

Hair falling out is awful... Try the organic apple cider vinegar for your hair... I found that the steroid cream my doctor gave me made my hair fall out in a bald patch at the front which looked bad - it has grown back now! My hair got a lot thinner as a lot of it fell out at first but the apple cider vinegar not only kills off any bacteria or any secondary infections but makes my hair baby soft and makes it look fuller and shiny!

I had my last cigarette last night... I feel really good about it. My husband also smokes too so I know where you are coming from but he is away this week so i figured it was perfect timing. I could not live with myself anymore without doing everything and anything possible to make myself well. I'll have a look at those herbs... I haven't really gone down the herb route yet!

All the best health to you, Amelia

dafne
New Member


Date Joined May 2013
Total Posts : 2
   Posted 5/6/2013 10:36 PM (GMT -6)   
Hello,

I would like to try the apple cider topically. Do you dilute it or apply directly to scalp/affected areas? How often? Thanks for your help!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/6/2013 11:03 PM (GMT -6)   
I think it's done like a shampoo. Apply directly then wash out.
Warning: it will sting like the dickens! Keep it out of your eyes too.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

dafne
New Member


Date Joined May 2013
Total Posts : 2
   Posted 5/6/2013 11:09 PM (GMT -6)   
Thank you- do you dilute it first?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/7/2013 4:06 PM (GMT -6)   
I like to use witch hazel instead. I pour it on first and rub it in then wash it out with shampoo.
It stings but smells better.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Jcjoy
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/13/2013 8:27 AM (GMT -6)   
Thanks so much for this info ! I'm going to start acv and also acupuncture (I've done it in the past but it was too costly)
If you don't mind me asking how much do you pay for your weekly acupuncture?
Also has anyone with discoid have any mouth sores? (I've had one for a few months doesn't hurt or bother me, but worried about it)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/13/2013 12:06 PM (GMT -6)   
Rinse your mouth with warm salt water. If you have any pain rub mouth sore pain relief on it. Also use alcohol free mouthwash like biotine.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

arglebargle
New Member


Date Joined Mar 2014
Total Posts : 2
   Posted 3/9/2014 10:11 PM (GMT -6)   
Hey guys,

Sorry to reply to an old post. I'm new here and was reading through the boards :)
Does this apple cider vinegar have good results? Just asking because I've tried so many things, and I have the feeling I would feel really silly putting vinegar on my head (especially if it doesn't work). But I'm hoping for good results...
Does it have to be organic?

Thanks!
Felicia

Aurora of the sun
New Member


Date Joined Jun 2014
Total Posts : 4
   Posted 6/21/2014 1:59 PM (GMT -6)   
Hello Lupie 78

I would like to know if any of your suggestions is working for you.

Lupie78
New Member


Date Joined Nov 2010
Total Posts : 10
   Posted 6/30/2014 5:33 PM (GMT -6)   
Hello! I was just doing some internet research and randomly found my old post!

Apple Cider Vinegar is incredible, I use it pretty much on a daily basis, on a cotton pad and wiped over my face.... I sometimes leave a cotton pad soaked with acv on a lesion if it is getting angry. When I feel the need I wash my hair in it too but since I first used it I haven't had the lesions on my scalp.

It has to contain the "mother" and be organic in my opinion as we should be trying to avoid chemicals as much as possible. The highly refined versions from the supermarket will not work. I use it neat but you can dilute it to suit.

Also, since my post in 2010 i tried Bicom which was really interesting...... I don't take any big brand supplements or use coconut oil anymore however....

I have discovered hemp seed oil.... I moisturise my face in it with a little bit of lavender oil... And I eat it as a dressing on salads. Hemp seed oil permeates the skin so easily and has the perfect balance of omega 3 and omega 6 so I don't take fish oil anymore. I have also started oil pulling with hemp seed every morning , my mouth feels so clean and I have had less ulcers.

I have also been taking curcumin for about five months now and I am seeing some positive results.

Over the past five years I have experimented with so many different things, I have found the things that work for me and I will be putting together a blog within the next year to share everything I have learnt with my fellow lupies : ) The most important aspect of lupus is your attitude towards it.

Be well, Amelia

Aurora of the sun
New Member


Date Joined Jun 2014
Total Posts : 4
   Posted 7/7/2014 7:21 AM (GMT -6)   
Hello Lupie 78

I have been taking plaquenil for 2 months and have noticed that my hair is falling out, told the doctor and he said deal with it and do a comb over sad, I also smoke and have been trying to quit. The Plaquenil makes me so depressed and sad and just plain not myself and I don't like it. I also would like to know what you do outdoors, I was an avid golfer and now am so paranoid about having more lesions that I don't even want to go anymore, because of the sun avoidance thing. They are starting to get into my scalp right around the forehead line and I wear hats all the time and seems to make my head hurt. I have plaques on my cheeks and so far a few on my scalp, all the derm did was give me cream and say stay out of the sun, the rheumy said take your plaquenil 200mg and sun avoidance 10-7 really in our area, I would like to find a doctor that has discoid lupus instead of them just saying what they do. I will try the ACV. I try not to let it overtake me but it does and my life has become about discoid lupus, it's not me or my life anymore, do you have any scars from the discoid that is what I am really worried about. The shirts, hats and sunblock do not bother me, but the medicine seems worse than the illness. Also I have not trace of SLE in fact I am healthy. Do you find that the smoking interfered with the plaquenil, if it does why is my hair falling out. I needed someone to talk to that actually has the discoid lupus I do not want to be disfigured ooh the internet is a scary thing.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/8/2014 1:34 AM (GMT -6)   
To help your hair you need to try biotin. It will help with the hair issues. My hair grew back curly after it thinned from a bad flare.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Dawn Weeks
New Member


Date Joined Jul 2014
Total Posts : 1
   Posted 7/8/2014 11:31 PM (GMT -6)   
If you bath in coconut oil, doesn't it clog your drain? I put it all over my body after a shower. I mix it with shea and coco butter with bees wax to make it like a cream. I just don't want to harm the plumbing

Lupie78
New Member


Date Joined Nov 2010
Total Posts : 10
   Posted 7/9/2014 6:45 PM (GMT -6)   
Hello,

Aurora - I would suggest that you learn some really deep breathing exercises, it helps so much with the stress of it all, I can hear myself in your words as the whole experience is so consuming and it can feel like you've become lupus and lost your old self.... It has taken me a long time to get to grips with it all but attitude and thoughts are so important, they are the key to having the life you want. It is not easy but you must do whatever it takes to manage negative thoughts and get to know your body. Everyone is different. I live in a place that hits 45c and has heat waves, everyone should avoid that sun!

I have been taking plaquenil for over a year now and I don't feel that weird feeling of there being something in my body anymore, I think that it does suppress the symptoms to an extent where I feel the side effects are less than the benefits. After having intense consultations with a panel of doctors they convinced me that it is one of the safest out there. The research shows that those on it do better. Smoking inhibits it's complete effectiveness so it is a good idea to give up, even though it's hard. I completely understand this!

Rosemary is good for hair, google that one.... The internet is full of doom and gloom which is why I want to start my blog to add more positivity to such a complex life changing condition.

I have one scar on my cheek for a biopsy but usually discoid doesn't scar.... I actually got another diagnosis of subacute cutaneous lupus but it's pretty much the same thing when it comes to treatments.

Have you tried acupuncture? Anything that can clear your mind, help you relax and get to grips with the mental side will help you more than anything. Yoga is great.

Try and find a hat made of natural fibres.... I love my paper hats, they look cool and are much more breathable in the heat. I wore a headband for about three years and got so used to it that it was hard to on give up, really good friends had never seen my forehead!

I found the most helpful thing was to not focus on lupus so much but on my overall health and well being.

Hope that helps, have hope that you can get to grips and get your life back better than it was before with a new renewed confidence that comes from deep within xx

Lupie78
New Member


Date Joined Nov 2010
Total Posts : 10
   Posted 7/9/2014 6:47 PM (GMT -6)   
Hi Dawn

I don't know if coconut oil would clog your drains! If the bath is warm then the oil will be soluble so I think you'd be ok but I Am not a plumber!! I think it is better to apply direct to Your skin.... But give hemp seed oil a go, I think it permeates the skin better.

Cheers, a

Lupie78
New Member


Date Joined Nov 2010
Total Posts : 10
   Posted 7/9/2014 9:03 PM (GMT -6)   
Notes on smoking.... If you smoke tailor made cigarettes then swap to rolling tobacco as an immediate positive step... Then mix up the rolling tobacco with herbs like pink lily, blue lotus and Indian tobacco to slowly cut down your tobacco intake. Buy a nicotine e-cigarette too which helps heaps for cutting down.... Going cold turkey when you are already stressed is a bad move but slowly cutting down through using herbs and the e-cig is manageable.

2cat
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Date Joined Jul 2014
Total Posts : 1
   Posted 7/15/2014 7:51 PM (GMT -6)   
Hi,
I'm new here and I've been eating a raw diet for 80% of the time about 1 year now. I've lost a lot of weight 15 to 20 kilo's in about 9 months and got incredible energy through this change. I eat about a tablespoon of hemp seeds every day, chia and sunflower seed also I use organic apple cider in my salads but haven't tried it on my hair and skin I know it's good for your hair as I worked as a hair dresser. I'll try that.
I stopped dairy , meat and gluten but put organic milk in my coffee with sugar after I had a deficiency in b-vitamins so i'll try to cut back as I drink loads :-) the B- vitamins you only get from animal produce! I started taking a vitamin B supplement a few weeks ago also vitamin d is important if you don't get enough sunlight, it brightened up my mood too :-)
I didn't really get into using the cortisone cream as my attitude to using chemicals has drastically changed! I'm very lucky to live near a big fruit and veg market , it would be ideal to buy organic but it's just too expensive. I buy what I can organic.
Turmeric is a very healing spice I try to remember to take it as a supplement also.
Stopped smoking cigarettes 2 months ago and changed to an E-cig I prefer it now.
I think I've had this 6 years now and take another chemical medicine that I can't give up so I've not got better but I'm not worse either. I'm very glad I found out about the raw diet it has been a great lifestyle change.
Sorry about the rant but If any of this help's anyone I'll be happy.
Thanks for your post Lupie78 and good health! :-)

Tinkerbee
Regular Member


Date Joined Feb 2013
Total Posts : 59
   Posted 7/16/2014 8:58 AM (GMT -6)   
Lupie78 said...
I have one scar on my cheek for a biopsy but usually discoid doesn't scar.... I actually got another diagnosis of subacute cutaneous lupus but it's pretty much the same thing when it comes to treatments.

Discoid absolutely DOES scar, so your 2nd dx is probably accurate if you don't have scarring.

Lupie78
New Member


Date Joined Nov 2010
Total Posts : 10
   Posted 8/29/2014 3:26 AM (GMT -6)   
Hi 2cat

It sounds like you've learnt a lot about how to look after yourself, good for you for giving up smoking too... I am still struggling with it but it is getting close to quit time.

I think raw food is great as long as your digestive system is working well, some people find that it is harder on the digestive system to process raw food but introducing it slowly and healing your digestive system really helps with healing other diseases I believe.

I don't eat many wheat products and I have noticed that when I do I feel bloated and I have noticed increased energy as well as weight loss.

I stopped taking the turmeric everyday for a month and I got worse. It is quite incredible the difference. I know it has a powerful anti inflammatory effect aside from the lupus as as I had period cramps this month for the first time in many months. I have started taking it everyday again now of course as I believe in it through my experiment!

Thank you for sharing your positive experiences, it is so helpful to see what is and isn't working as we navigate our way with this dis-ease.

Stay happy! Amelia

Lupie78
New Member


Date Joined Nov 2010
Total Posts : 10
   Posted 8/29/2014 3:27 AM (GMT -6)   
Thank you Tinkerbee with your correction, you are totally right. There is so much conflicting information on the internet and I am determined not to be one of those people so feedback is so important especially when I start my blog! Cheers, amelia

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 8/29/2014 5:58 AM (GMT -6)   
I'm one of those people who have a hard time with digesting raw foods. I've been doing smoothies for breakfast every morning for quite some time and it's easier on my stomach. I add my chia seeds, almond milk and flax oil to some fruit and voila! I like smoothies better than juicing because I still get the fiber.

I make a lot of soups too. The veggies aren't "raw" but it still helps my energy and whatever nutrients are left are so much easier to absorb. Also, those like me who have absorption and digestion problems will not reap the full benefits of pill form supplements. Liquid or drops are better.

I can't take tumeric, it upsets my stomach but I researched other anti inflammatory foods. I listed them here somewhere. I had to stop taking celebrex and for me it was the right choice. I was in the hospital last Friday with an excruciating ulcer. I always get them from nsaids.

I take plaquenil, cut out dairy, gluten, nightshades, all grains but rice, hydrogenated oils, all meat but fish and it does seem to be helping. I'm far less rashy and my energy is good. I also have seen a big difference in my brain fog. I also go to acupuncture 2x a month. It helps tremendously with my raynaud's, levido and pain.

These changes can be daunting at times, it's a lot of work and can be downright expensive! I've found it's really worth it though. I've started having more trouble with my kidneys and I'd much rather try diet than put them at further risk with prescriptions, if possible. Sometimes it is totally necessary though, this is why I will not quit the plaquenil.

I think it's possible to complement western medicine with diet, naturopathy and lifestyle changes and not have to choose one over the other. I'm very lucky in that I have a doctor who supports and agrees with this way of doing things :) and she helps me stay positive.

I'd love to follow your blog when you get it going Amelia. All the best :)

Lupie78
New Member


Date Joined Nov 2010
Total Posts : 10
   Posted 9/15/2014 2:49 AM (GMT -6)   
Hi Acquiesce

Thanks for your post. I agree, I think it is a great idea to mix and match your treatments on a holistic level, it is good to have a doctor to support you so you can check any contraindications... I would like to find a Functional Medicine doctor... I might have more luck when we go to the uk in November.

Absorption is everything... Getting to know your body and what works for you is so important. Soups are great.... Have you tried slow cooked food? It's tasty, cheap and easy!

You could add some hemp seed oil in to your smoothie too... I have run out this week and I have noticed a big difference. It seems to lubricate your body so it just feels better. I don't have joint pain but I could feel that it would work. Like oil in a car engine!

I will post the link to my blog when I get it going... I am excited to share all the research I have gathered over the years. I am in the midst of moving to the other side of the world so hopefully time permits before the end of the year.

What I would really like to do is talk about all aspects of lupus and include information about the psychological side of dealing with chronic illness. I have some interesting theories in development at the moment. Having the strength to manage dis-ease on a psychological level is fundamental to be able to negotiate unpredictable health changes on a daily basis and remain sane!

Happy Health to you : ) Amelia

cmgeorge
New Member


Date Joined Apr 2015
Total Posts : 6
   Posted 4/23/2015 11:08 PM (GMT -6)   
I am very newly diagnosised. Within the last week. Thought i was doing OK until reading some things. I drink, i smoke, and i absolutely love the sun. I'm a little freaked out now. I have a very stressful job. I really never expected this. I am very healthy. I am almost 40 so got a regular doctor for the first time ever last month. Blood work came back fine. Then i had these bumps so went to the dermatologist and he mentioned lupus. I thought no big deal. Then i got home and stated researching not knowing anything about it. I was pretty freaked out. Then i thought i was good just getting the discoid diagnosis but after reading about it and seeing pictures,I'm even more freaked out. This is a HUGE life change for me. I don't know if i can do it i have 3 children ranging from 22-12, they are very important to me but what is this. What do i have to look forward to or not look forward to?
I really thought i was fine no big deal but now I'm a little out a lot freaked out.
My 12 year old daughter told me "mom that is the worst possible disease you could possibly have, you love the sun"
sorry i guess I'm just ranting but holy hell...I'm freaked out.
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