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One year since Diagnosed with Lupus

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Posted 10/18/2008 1:07 PM (GMT 0)
Hi All,

It is going on one year since i was diagnosed with SLE Lupus.I have made major lifestyle changes since my diagnosis and want to share my results.

In October of 07 i had lots of migratory joint pain,stiffness and some fatigue.No Organ involvment.I was also diagnosed with uncontrolled Hypertension(B/P was 160/102).After a myriad of tests i was diagnosed with SLE Lupus.My white count was 2.7 and i was also slightly anemic.My C3 was 50,C4 was 10,sed rate was 60,CH 50 was under 10,ANA was 1:320 and the dsDNA was over 50.My urine and SMA-7 have been normal.

I started on Plaquenil 200mg twice a day and began to read a lot about Lupus and how lifestyle and diet can improve lupus symptoms and decrease inflammation in the body.I purchased a couple of Dr.Andrew Weil's books and followed his dietary and supplementaion regimans for people with Autoimmunity,hypertension and inflammatory conditions.I cut out dairy,meats, and veggies in the nightshade family,white flour and refined sugars.I started a diet high in Omega 3's such as having salmon a few times a week,Whole grains only LOTS of fresh fruits and veggies.I also take a bunch of supplements that also help decrease inflammation,support your immune system and also booste your energy.for one year now i'm taking Omega 3 fish oil 1,200mg once a day,Turmeric capsules 300mg 3 times a day,Ginger capsules 200mg 3 times a day,B-complex(100)once a day,Vitamin C 1,000mg once a day,Vitamin E 400iu once a day,Vitamin D 1000IU once a day,Calcium 500mg and Magnesium 250mg combination three times a day,Acidophillus 3 times a day.I take a brisk walk for 40 minutes a day 3 times a week.I also try my best to avoid stressful situations and realized that pushing myself beyond my capabilities is not healthy for me.

I went to my Rheumatologist yesterday after having my labs done over a week ago and she was impressed with my results.My Lupus is no longer active.My C3 is normal now at 92,C4 is 21,my WBC is 5.5,my RBC and HCT are normal,Sed rate is now normal at 30,the ANA has improved too and is now 1:160,dsDNA has improved too and is now 29.6 and my blood pressure(taking Toprol XL 50mg) is now 109/74.I feel SO MUCH better than i did last year.I have so much more energy and NO PAIN or stiffness for over three months now.I have not needed to take any pain relievers in over three months.I'm keeping my fingers crossed and hope my Lupus stays in control.I feel the lifestyle changes made a huge impact for me.I hope this helps someone too.I didnt realize how crappy i felt last year until i started feeling better.Does that make sense?? I hope my email will help someone make lifestyle changes cause it can help us all.It takes time to see the results and for a while i was getting frustrated cause i wasnt feeling better but i can say now i'm glad i stuck it out and didnt revert back to my old ways.....

Thanks for reading this long email.

Fran Z

Brooklyn,NY.

Posted 10/18/2008 2:18 PM (GMT 0)
Hi Fran:

I'm so pleased to hear that you're doing so great. You're very lucky that you were able to stick to your program and change your diet so drastically.

I wish I could do what you've done, but I've got so much going on with me I can't manage w/o my medications. I do have organ involvement and if I didn't have my meds I'd be in big trouble. The toughest part for me is I've got gastroparesis and I'm limited to 25 grams of fiber per day. My stomach doesn't work correctly and a high fiber diet is a big no no nono

Also, unfortunately between my lupus and my blood cancer I spend so much time sleeping and I'm unable to cook for myself. I totally rely on my husband to prepare meals for me. Which he works all day long and I usually get a meal at night. Otherwise I go w/o during the day or it's something not to healthy that I do eat. I'm thinking of starting Jenny Craig just so that I'm able to microwave something during the day and it be half way healthy to eat.

Anyway, great job, well done Fran. I'm truly pleased that you're feeling so much better. Now if those of us who can't change our diets drastically could find a solution that would even be better.

Take care,
Barbara
Posted 10/19/2008 1:58 AM (GMT 0)
Hi Fran,
Wow!!! I'm inspired by your determination to try your darndest to make the most positive impact you could on your health, and am encouraged by your results. I am still trying to figure out the lupus/AI thing - (along w/ my rheumie). I am wondering about your age (I'm 54). I'm without serious organ involvement, but my liver gives me some trouble from time to time - mostly during flare periods. I don't drink alcohol, use caffiene, or smoke and I try to use as little medication as possible because of it. I do believe that diet, exercise and ... well, just taking really good care of ourselves is hugely important - even if it isn't always enough.

I really appreciate hearing about the specific changes in diet you made and the vitamins/supplements you added - it's helpful. I'm trying to do the same with diet - although I need protein, so we buy organic grass fed beef and chicken from local suppliers. It's expensive so we eat less of it, but I feel the mass market stuff is very unhealthy. I'm curious how you get your protein without eating dairy or meat? I'm not crazy about tofu. And sugar/chocolate are the hardest things to do without. I do well for awhile and then a little nibble gets the cycle started all over again.



Anyway, thanks for sharing your story - it really does encourage me to keep at it. I dodged Plaquenil the first time it was offered to me because my body doesn't respond well to numerous meds. Do you feel it was part of the improvement? Are you still on it?



Take care -

Lucy
Posted 10/19/2008 12:26 PM (GMT 0)

Hi Lucy,

I'm 38 years old now.I'm also a Registered Nurse.The diet and lifestyle changes have helped me a lot.As crazy as this sounds i feel Lupus came into my life for a reason.I wanted to make changes for such a long time due to my family history of hypertension,heart disease,cancer and diabetes.The diagnosis of Lupus pushed me to make changes in my life NOW and not wait until i become more symptomatic or sicker.....I still take the Plaquenil 200mg twice a day but i dont think the meds alone helped me get to where i am now.I dont like taking medications at all and was VERY resistant to taking the Plaquenil when it was prescribed to me.So far,i have not had any negative side effects to the Plaquenil.Knock wood...

I do get protein from Fish(salmon and/or flounder) and i also have organic eggs from time to time.If you can tolerate beans then beans are a good source of protein and when combined with either rice or pasta the protein is more ''complete''.Though according to Dr.Weil people with Autoimmune diseases should have a LOW protein diet.Go to his website www.drweil.com and check out his food pyramid.You can eat chocolate but let it be DARK chocolate with at least 70% cocoa.When i crave sweets;i dont deprive myself but i wont overindulge either.Once in a while we need to treat ourselves. turn

Lucy look into some antinflammatory diets and supplements.They do help BUT take time to see results and LOTS of self discipline to adhere to the dietary restrictions.I take a bunch of supplements throughout the course of the day and my co-workers look at my bag of pills and just say ''how do you take all of that everyday??'' or even say ''how do you remember to take all of that''.I just make it part of my daily routine and feeling good makes me stick to it..As a matter of fact,it's time for my morning supplements now. smilewinkgrin

Fran

Posted 10/19/2008 2:07 PM (GMT 0)
Fran, thanks for sharing your good news of how much things have improved for you. I'm impressed with how you have been able to make and maintian the dietary changes. That's been a hard thing for me to do. For some reason, a lot of the healthier foods I used to eat now make me feel sick to my stomach, like a lot of the veggies and even some fruits. I used to eat a ton of fruits and veggies. I keep trying and it is inspiring to read about someone who has actually done it and had some really positive results.
Posted 10/20/2008 12:15 AM (GMT 0)
Hey Fran,

I checked out Dr. Weil's site and food pyramid - and plan to get "re-started". I've been getting acupuncture treatments and was told my system was too acidic and I needed to stop sugar, dairy, raw foods and cold beverages, including water (ice water being my beverage of choice) and to try and focus on eating low acid producing foods or alkaline producing. After a couple of weeks of doing so - my blood pressure dropped pretty dramatically (I was borderline hypertensive) and I lost some weight. I did go into a flare while on vacation and got discouraged and re-introduced sugar into my life - so I know that the discipline thing is important, mainly because once you "get there" it's easier to stay there, than go back and forth.

The acupuncture took awhile as well - about 4-5 visits before I noticed some appreciable and consistent help with pain - especially back pain. In fact, I was getting close to giving up on it until the latter part of September. But it is about making inroads, however small at first, and emphasizing them, mentally and physically. In the spring, I had a hard time walking to the corner, now I can walk 20-30 min. without much pain at all. I wish I could walk further and longer now....but I at least believe I will at some point.

I want to try the turmeric and the ginger (I love ginger tea). I don't like having to take meds or much of anything - having so many sensitivities - but I do get that if something is working for you, finding a way to fit it into your routine and schedule is a small price to pay!

Anyway, thanks again for all the good info and advice! I've printed out Dr. Weil's food pyramid info and posted it on the fridge to help trigger my thinking when shopping or eating. And if it turns out that I need to start on some Plaquenil - I'll thinkof you!

Wishing you continued wellness!

Lucy
Posted 10/20/2008 12:31 AM (GMT 0)
Hi Hippi -
As I told Fran - the acupuncturist instructed me to stop eating raw foods (with the exception of a few low acid fruits like apples, pears, etc.) It sounded counter-intuitive - but I do think it helped. He said the raw foods were too acidic and hard on my spleen/liver. So I just started steaming or sauteeing my vegetables, and as it turns out - I prefer them that way and it did seem to help with digestive/stomach/reflux issues. I kind of missed salads for awhile - but I've adjusted.

We all know we are supposed to eat lots of vegies - but apparently the raw form is not always the best way, at least for some of us. Making a batch of rice up to use during the week with some quickly cooked or leftover vegies is now a lunchtime standard for me.

This may not be any help to you at all - but I definitely have an easier time with the cooked vegies.

Lucy
Posted 10/20/2008 2:12 PM (GMT 0)
Lucy, that's interesting about the raw fruits and veggies. My body has tended to go that way anyway. I used to eat a ton of fruit and now it's pretty much just pears and apples and bananas that I can handle. I can deal with some cooked veggies but even those upset my stomach sometimes. I'll have to check out Dr. Weil's food pyramid. I also looked at the macrobiotic diet, which I think might be really similar (or the same thing). I think if I could make myself do it, I'd feel better. I think I'll take some time to do some research into some of these things and maybe give it a try. Not only will I probably feel better, it will also probably help me lose some more weight. I keep fluctuating between a 10-15 pound weight loss and I really need to lose about 70 - 80 pounds.
Posted 10/20/2008 6:01 PM (GMT 0)
Hippi- Since you're going to be doing some researching, I wanted to tell you I also have had some positive results with the EAT RIGHT FOR YOUR TYPE diet by D'Adamo. It's based on individual blood types pre-disposing your body to various positives and negatives that result from the foods you eat. It sounds kind of "out there" -but what he says makes good sense and actually lines up with many of Dr. Weil's recommendations and just my own experience with my body.

For all the blood types -all foods are listed as Highly Beneficial, Neutral and To Be Avoided. In the vegetable category, for example, for a Type O the avoidance list includes cabbage, corn, cauliflower, sprouts, red & white potatoes, mushrooms, etc. (But sweet potatoes are good for the "O".) He also speaks to health predispositions for certain blood types (like autoimmune problems). As a Type O - so many things lined up for me. When I really stuck to that diet I lost weight and felt better within two weeks. That wheat and most grains are on the "Avoid" list is what makes it so difficult to sustain.

Anyway - I'm running on here - I think the information in that book about health and diet as relating to your individaul blood type is very useful, and certainly coordinates with the acid/alkaline balance thinking, as well as Dr. Weil's plan. Wish I could loan you my copy - but I know the libraries carry it. Also you can find various lists online relating to the acid/alkaline forming aspects of foods. When you think about it - our diets and the quality/quantity of so many foods we consume, have changed drastically over the last couple decades.

Good luck with the weight loss thing - I struggle with that, too. It's mainly a sugar problem for me. I'm making some headway, though.....slowly...but I'll take the baby steps over standing still!

Lucy
Posted 10/21/2008 11:37 PM (GMT 0)
Hi Lucy,

I'm also trying to keep my body in a more alkaline state.I heard of a book called Alkalanize Or Die...i never read the book but a friend of mine who was diagnosed with Breast Cancer swears by it. She says EVERYONE should keep their body in a more alkaline state to avoid and even cure diseases. She is cancer free now and is following the diet regimans that keep her in an alkaline state.

I do notice a difference in how i feel if i ''cheat'' with my diet.If i eat too many snack foods;i feel crappy for a day or two.My asthma will act up.I will get a headache and just my overall mood changes.So i feel a direct connection with eating ''bad'' and feeling bad too.

Oh and my new diet helped me lose some weight.I now weigh 137lbs.I was 146lbs last year.

Fran
Posted 10/21/2008 11:59 PM (GMT 0)
Thanks for the link, Fran - but for some reason the browser couldn't locate the site. I agree with you - I cheated with some ice cream this past weekend, and my sinuses (along with some additional fatigue) reminded me why it was a bad idea

I am striving to get where you already are, weight-wise. In fact, I'd be happy with 150.

Lucy
Posted 10/22/2008 12:13 AM (GMT 0)

Sorry the link doesnt work.I think if you do a Google search you will find it....you know what is interesting?? The foods in the Nightshade family are considered alkaline but they also can cause inflammation...go figure!!

Fran

Posted 10/22/2008 12:22 AM (GMT 0)
I know...and I love green, red & yellow bell peppers - they're a major vegie staple for me - and I only just found out recently they are part of the nightshade family. Another surprising one was lemon juice actually promoting an alkaline response in the body - despite it's acidic base. I eat Ezekiel bread as a rule - but am beginning to question the sprouts....do you know anything about that?

Lucy
Posted 10/22/2008 2:26 AM (GMT 0)
Hippi, can I make a suggetion?

bananas, pears and apples are very high in sugar and will feed candida if you have it. And most people with chronc illness have it.
Candida is fed with sugars and carbs.

If you are going to eat apples, eat green apples. They have a lower sugar content

Many stomach issues are candida related.

I don't think you need to get as severe as a macrobiotic diet, but you can certain try and I am sure you will feel like a million bucks.
Posted 10/22/2008 2:29 AM (GMT 0)
p.s Fran and Lucy, I'm glad you're both here at HW
Posted 10/22/2008 10:13 AM (GMT 0)

Lucy,

Be careful with certain sprouts.I forget which one it is but there is a particular sprout that is particularly BAD for inflammatory conditons.If i find the name of it i will send it to you.There are sprouts that are good for us such as broccoli sprouts but again they may not be tolerated well in some people with Lupus.They are said to be HIGH in anticancer,anti-inflammatory properties and also support the immune system.I never tried them though.BTW...what is Ezekiel bread? Never heard of it.

BTW....i stopped taking my blood pressure medication two days ago and my B/P is still controlled right now.This morning it is 119/78.I will continue to monitor it day and night to see if it stays down.If i can at least discontinue one medication i will be THRILLED.Though i dont want to get too excited yet.

Fran

Posted 10/24/2008 4:02 AM (GMT 0)
Hey Fran,

Ezekiel Bread is a flourless low glycemic bread. It's made from sprouted grains such as wheat, barley, lentils, soybean and spelt. I started using it when I was trying to follow the Blood Type Diet (no wheat). It has more protein and fiber than regular wheat bread, and no sugar. It's kind of an acquired taste - but it works for me as toast in the morning w/ some almond butter or toasted with various sandwich fillings. It requires refrigeration. Dr Weil also approves of Ezekiel bread. Check the freezer section of the health food store or natural foods section of the grocery store if you're interested in trying it. I believe it is alfalfa sprouts that are not good for folks with Lupus. I think I read that on the Lupus foundation site - and it got me wondering about the other sprouts. I've been eating that bread for a couple years - not exclusively, but nearly so and daily.

Hope your BP has stabilized and you can stay off your med!

Lucy
Posted 10/24/2008 4:04 AM (GMT 0)
I'm glad for your posts, too Peacesoul!
Lucy
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