Road to R-E-C-O-V-E-R-Y!!: So I was diagnosed with... - LUPUS UK

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Road to R-E-C-O-V-E-R-Y!!

Warrior_1982 profile image
13 Replies

So I was diagnosed with Lupus about 2 yrs ago. No symptoms, was feeling fine up until i got a weird rash on my left quad when I was out hiking one afternoon. I was told I had high inflammation. So instead of researching what was wrong with me, I subjected to trying this medication called Hydroxychlorine. 3 month trial of that actually made me sick, hair loss, numb fingers, toes, dizziness. Sick! And Inflammation actually increased. The rheumatologist suggested I take a higher dose so my system adjust quicker to the meds (Ha what a joke right) Declined! Brain became alert, my health became priority. Detoxed naturally off that medication, put myself on a anti-inflammation diet and go figure inflammation decreased dramatically! Duh it's the foods!! The doc didnt even seem to care my inflammation improved. He was a jerk and still suggested I try a different medication. (I changed doctors)

This whole diet, stress, confusion changed my digestive system. I looked into holistic homeopathy treatments since I'm so over going to the doctors just wanting to poison me with medication. A good friend reffered me to Chinese herbalist (Orange County, CA)

Took a Biomeridian test that pointed out the organs I needed to repair. Colon, pancreas, spleen, kidneys, liver and my heart. I trusted this man more then all the doctors I've ever seen in my life. 40 pills total a day, all herbs, natural. Then BOOM, Month later I have my strength & energy back. Happy, feeling better. Slowly getting back to my intense workouts then eventually back to martial arts. I still notice a lil sun sensitivity maybe a rash here and there depending on what I eat but totally learning the ins and outs of my body for healing. No processed,fried foods, definitely no bread. I'm lactose so no dairy and have been skipping out on the red meat.

My meals consist of juicing veggies more than fruits pitaya bowls for breakfast chicken, Salmon. Alot of salads. (Similar to the Mediterranean diet) Organic is good but could get a lil pricey!

Along with the herbal pills I was given, I also drink aloe vera shots, Olive oil every morning, coconut oil after my meals, Moringa seeds garlic pills, Vitamin D., Biotin from Mothers Market. (I know it's alot, but I'm not trying to die yet)

Staying active, Yoga, very early hikes, Prayer and a positive mind helps tremendously. God bless and hope you all heal.

P.s. Castor oil on the scalp at bed time (wrap it) for hair growth.

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Warrior_1982
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13 Replies
Chris21 profile image
Chris21

good for you, glad you found something that keeps you happy. Hope you don't become bankrupt with the amount of things you have to buy.

Warrior_1982 profile image
Warrior_1982 in reply to Chris21

Yea almost there hehe jk. YES pricey but fortunate to have had the money to pay $350! Crazy! Took a deep breath and paid with faith. 1 time deal. 1 month treatment. (40 pills a day) working overtime here and there and renting a room has helped me get through some financial difficulties. Let's not even talk about car repairs. I'm not married, no children, no school loans. Definitely not rich but somehow pulling through. Primarily trying to fix my insides. I'm not 100% I am cured. (Dr. App/labs that next month) but at least I feel good to know what I needed to fix.

I am more than sure this lupus must of been self induced. I use to take birth control xanax, anti-depressants, Bowel cleansers, diet pills, appetite suppressants, fat burners, pre-wrokout, rockstars, diet teas. (Weight insecurities) plus use to drink hard socially. So makes alot of sense to why these organs needed the fixing. Rough life, still standing. Oh and also amazon has good deals on the same brand of pills for like 10 bucks cheaper..... Anyway, thank you for replying :) God bless you..... sorry I talk alot :p

Cookiecutter76 profile image
Cookiecutter76

Interesting to hear. I too have become very ill due to the lupus medication and much better now I'm off it! I managed my lupus quite successfully for 25 years with pacing, diet and holistic medicine. Tried the meds once I got an official diagnosis - not because I'd become really ill but because I was having difficultly having a baby and thought it may help. My life then ground to a halt as I became severely incapacitated and the consultant said it was a Lupus flare. Thank goodness I new my body and that it was the meds. Changed consultant (new one agrees it was the meds) and am gradually getting my life back with holistic medicine, diet and pacing again. We do need the meds sometimes and they can be lifesavers but they're not always as necessary as some doctors make out and can cause problems in themselves. We're all different and need to find our own balance.

I'm glad you're doing so well now!

x

Warrior_1982 profile image
Warrior_1982 in reply to Cookiecutter76

That is so awesome! Good to hear your getting back. Yes we need meds somtimes but when we know for sure what we are taking it for. Everything is homeopathy now. Herb teas...etc. Best of luck to you. God bless you :)

Freddi1019 profile image
Freddi1019

I'm so happy for you. Each case is different. I retired from 32 years of teaching to recover. I gave a combination of things going on...so I'm starting a journal to find out what works for me. Good luck and congratulations.

Warrior_1982 profile image
Warrior_1982 in reply to Freddi1019

Thank you :)

Yes totally agree, each case is different. My co-worker also has lupus. I feel mine was a lil more aggressive due to an active lifestyle as in outdoor hiking. The sun is everywhere. She is on many meds. Go figure we have the same rheumatologist. Anyway, thank you and best wishes to you.

Natura profile image
Natura

Hi warrior! I could not afford to see a nutritionist. I went once years ago, I treat organs naturally on my own by reading. I take holy basil to control cortisol production (panic attacks have decreased), vit d3 i take at night I have just read is a better time to take. I take a digestive enzyme to help digest my food, save me energy. I also take b12 because I have read often on this site that it is helpful. I have found out through a sono that i have scarred kidneys, so I have to watch that I dont eat too much protein daily. I put sesame oil on my skin and scalp for skin inflammation. Natural anti inflammatory, anti bacterial. I had a nutritionist tell me years ago to drink aloe vera. It helps with digestion and also heals the gut i was told. I take a natto k enzyme for clotty blood which i have been tested positive for. I stay away from dairy, try not to eat pasta, bread. More veggies...juicing. I am doing ok, but have osteoarthritis in my hands and fingers-skin comes off one finger. Plus trigger finger. I Haven't found a solution for that yet.

I take lemon balm for depression and passionflora for anxiety. The herbs work well with no side effects. I believe it is still a malfunction in the brain, and that these herbs relieve symptoms. But they wont disappear. I still have joint pain anytime i do any kind of exercise. I do some exercising in my pool, and my arms feel broken the next day. The problems are not comlpetely eliminated.

Happy that all the herbal treatments you have done have healed you .

Warrior_1982 profile image
Warrior_1982 in reply to Natura

Hi thank you I will try the sesame oil on my scalp. I will try anything to have my full head of hair back. I consistently drink 3 tumeric pills twice a day and seems to help with my joints plus maybe the olive oil. No pasta, no red meat, no bread, burgers aaaah all the good stuff I really miss my chicken cheese nachos! But eh for now I will just juice, eat leaves hehee. This lupus thing is just so weird! But all we can do is keep pushing, experimenting and hope to heal naturally. I never saw a nutrionist. I wanted to but my primary care reffered me to a nutrion food pyrimid class. Waste of time. I had an allergy test done literally starved for like 3 months eating salads and juicing. Lost muscle. Totally looked malnutrition anorexic. But reading books,blogs, has helped. I've been back to eating chickens fish, turkey. Slowly but eating way more again building muscle. I love food!

Anyway best of luck to you and thank you so much for replying. Feels so good I am not alone with this. We are all warriors.... stay Blessed :)

Nixta profile image
Nixta

GREAT to hear your approach. Keeping moving and eating balance healthy diet is a big key. I swim to keep all the joints supple and build muscle without pain but same kind of response. I am on Hydroxy and it's helped a great deal..so far still have my hair. But will take on board some of your vitimin advice. THANKS - good to hear something constructive and positive.

Natura profile image
Natura

Oh, and magnesium powder 1 tbl every night. Helps with muscle cramps, nerve pain. Also, I take turmeric daily for inflammation. It is costly Chris21. But, i believe my health is worth being in debt. I want to be around for more adventures, see my girls grow up and have a family. That is my motive.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Warrior_1982 ,

I am glad to hear that you have found lifestyle adjustments that work for you. It is incredibly important to remember that everyone with lupus is different and that there are many people who are not able to manage their disease without medication and it could be very dangerous to stop.

We would urge anybody who is considering trying any herbal/alternative treatments to discuss them with their consultant first because they can potentially interact with treatments or cause adverse effects. We would also advise people to continue seeing their consultant regularly for monitoring of their lupus. In many cases, especially when not on treatment, damage can potentially be occurring without any noticeable symptoms.

btvoicu profile image
btvoicu

Hello, I am in Ca, San Gabriel valley. I work in Yorba Linda and looking for herbalist. 4.5 years of flares and skin breakouts I need to get a balance. I am off the prednisone, cut back to 200 mg of plaquenil, (hydroxy chloroquine ) no breads or gluten containing products,coconut oil,omega three,fish ,hemp oil, vit d ,b12,zinc, selenium. Still have some issues,joint irritation not sure what is causing it. My recent labs ALT is high and having bouts with interstitial cystitis. Appreciate any info. Tina

btvoicu profile image
btvoicu in reply to btvoicu

Also anemic big time docs are monitoring,they put me on a mix of dapsone and colcrys,had a bout with vertigo,first time ever did not know what was happenjng,just wanted to get off the merry go round and found out hydroxy chloroquine can cause vertigo as well as skin rashes.

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