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Life With Lupus

Recently diagnosed with dle-corrected


#1

Hi, my name is Aisha. I’ve recently been diagnosed with DLE in September 2016 when my hair dresser noticed several bald spots on my head. I had been complaining to my hairdresser for about a year that my head was really itchy and thought I was going through menopause and had her thinning out my hair to keep my head from sweating as much, and some shampoo recommendations were made to help my overly oily hair. I was given cyclosporine but I am continually getting new spots and losing more hair. When I am using the topical on my scalp, the itchiness stops. But as soon as I stop, about 2 days later I begin getting itchy again and getting new spots. The itch is almost unbearable. I was tested for SLE but was told I don’t have it. About a month ago I noticed what I thought was a cut on my tongue, but recently it feels like the inside of my mouth is raw. My dermatologist would like to start me on plaquenil, but I am hesitant. Wondering if there are supplements or natural things I can try. I am just beginning to be very good about sun protection, realizing now that I have to completely cover up and try not to be outdoors in peak hours. In the beginning I thought putting sunscreen on was enough and still wore shorts and short sleeved shirts. Any help, tips would be appreciated. I live in hawaii.


#2

Dearest Aisha,

Your derm is on the right track. Please see a rheumatologist also (very important). You need to be tested for other autoimmune conditions. Plaquenil can help–at least until you get to a rheumy. Eat a good healthy organic diet–for me it meant reducing inflammation caused by the lupus.

You got to hold on!


#3

Hello,
Yes, there are so many natural things you can take and in my opinion so much better for you than prescription drugs.
The best thing I’ve come across on this long journey is getting a naturopath.
I can’t tell you enough how important this is for your health and wellness.

First, a great probiotic. A lot of our problems that are auto immune start with the Gut. IBS, SIBO, leaky gut and so on.
Example: If you don’t clean the gutters on your house, their going to get clogged with leaves, water has to have somewhere to go so it starts finding its way through your roof, into the walls. This will cause mold.
Our bodies are the same, the Gut it very, very important part of wellness.

So…
Nature’s Sunshine or Thorne I would recommend a few to start . If you want me to let you know what they are, I’m happy to.
Young living essential oils for scalp/ hair loss mixed with coconut oil.
Apple cider vinegar at least twice a day mixed with 8 oz. Water and spoonful of organic honey.
I’m not a DR. But I’m a Lupus survivor and an avid researcher.
God Bless.
Suzy


#4

I’ve requsted a rheumy, but was told I don’t need one, because I only have DLE. I also asked if they would redo the lupus tests (blood, urine, etc) but was told they were only done for diagnosis and because I don’t have SLE they will not be redone…
I have been trying to change my diet by eating organic whole foods, less red meat, more fish and veggies, decreasing caffeine and sugar, and doing a lot of supplements (Apple cider vinegar, baking soda, coconut oil, flax seed oil, liquid ph balancer vitamin, probiotics, bioastin, Kyani xtreme(noni), and turmeric extract.
I started seeing a natural doctor who treated me for blockage, excess hormones and fungal infection - which included mud packing, bentonite clay and silver. Initially she gave me a homeopathic liquid for the fungus that had essence of Echinacea in it which caused me to flare up, so went with the silver instead. Also started drinking “structured” water which is supposed to help remove toxins.
I will be contacting another doctor in my healthcare system, as I’ve been a little frustrated with my current derm and primary care physician. And I recently got info on a naturopath who incorporates western medicine.
I’m trying to exercise and get more activity in. I have only been using the topical on my head occasionally, but still trying to avoid taking medications.
I still smoke and drink and know I need to quit or cut down on the smoking, but haven’t gotten there yet.
I also use essential oil diffusers in my home, work and car.
Just found a natural shampoo that encourages hair growth…but still losing hair like crazy…Also just got a UV sensor from Shade to track my actual UV exposure and see how that affects my symptoms.
Thank you for your words of encouragement…and suggestions, I like to hear what others are doing. I just went to a Lupus Seminar and they spoke about a lot of natural things and diet changes and am excited to hear more about them.


#5

I was originally diagnosed with DLE. You need a rheumatologist. There’s no such thing as “only” DLE.


#6

Hi aisha

It’s great to have you here and wonderful that you are taking positive steps towards improving your health. It all adds up, as you know, to maximize how you feel and minimize the effects of your DLE.

Please be careful, though, that your western doctors (PCP, derm, rheum) are all aware of the diet you follow and the alternative medicines and treatments you take. We can’t stress this strongly enough.

Now keep in touch with us here, and best of luck with your quest.

Seenie from ModSupport


#7

Suzy, we have a whole section on Complementary Therapies, and I would encourage you contribute there. There is so much to be learned and gained in that sphere.

We call it “complementary therapies” because they are intended to work with conventional treatment rather than instead of. We cannot advocate people abandoning their evidence-based conventional treatment: it’s the view of Ben’s Friends that to do so would be irresponsible.

Seenie from ModSupport