2 posts tagged “treatments and symptoms”

Zoodles! Let’s dish on lupus/food + swap recipes

Posted 3 weeks ago by

If you’re living with lupus, have you found any particular foods that affect you and your condition — for better or worse?

Member Jeanette (JeanetteA6872), a member of the 2018 Team of Advisors who’s living with systemic lupus erythematosus (SLE), shares which ingredients she tries to include or avoid in her diet, plus three of her favorite recipes (psst—one involves zoodles!).

Food Q&A with Jeanette

Jeanette says she turned to dietary changes when she stopped taking Plaquenil due to severe side effects, including retina damage. “I had nothing to lose — I signed up for Tony Robbins’ Unleash the Power Within [a self-help program] that made me look at myself and my relationship with food differently,” she says. “I started logging my food intake for a few weeks on and off, I noticed how some of my favorite foods were causing me some issues ranging from stomach pains to full inflammation. That’s when I started paying close attention to what my body was telling me and I needed to do something about it.”

Here’s what else she shared with us in a recent Q&A. Everyone is different, so these foods and dietary changes may not affect you and your lupus the same way. Talk with your doctor or a registered dietitian about finding foods that work for you.

Have you noticed any specific ways that your diet or certain foods affect your symptoms?

I didn’t go on any specific diet at first, I started eliminating certain foods like sugar (which was causing major fatigue and pain), garlic (causing major inflammation in my knees), eggplants (fatigue and pain in my feet), bean sprouts (stomachaches) and alfalfa (full inflammation and full flare) — some of the known foods that lupus patients shouldn’t eat [learn more at lupus.org].

Then I noticed how meat was causing me fatigue and I noticed inflammation directly in my knees. I tried giving up red meat for two weeks, and I felt good and noticed a reduction of pain. Then I gave up chicken the following two weeks and felt even better. It was so amazing that I decided to give it up for good. After the first few months without meat, my doctor started noticing my blood work was improving drastically, so she began reducing my medications since I was no longer flaring or feeling pain. After a full year she reduced all of my medications to zero and even stopped my infusion.

I notice that if I eat too many potatoes like French fries, baked potatoes or mashed potatoes, as well as tomatoes, salsa, mushrooms and peppers, ice cream and cheese, I feel a little stiffness, so I know it’s too much. I really try to avoid processed and fried foods in general as I immediately notice stiffness.

I do still eat gluten and dairy products, just not every day. Everything in moderation works best, I’ve noticed. If something bothers me this week, I know not to repeat it.

Are there any foods that you try to eat often?

I don’t eat many of the same foods daily. I drink my shakes, but I like a variety of foods from pastas, salads, homemade cauliflower crust pizza, rice and beans, and I started eating fish again, so that’s more protein. There are meat substitutes like Gardein, Beyond Meat and black bean burgers that make great meals.

With the new eating style, I knew I needed to find some type of supplement for my vitamins and minerals because you get so many different vitamins from animal products and I wasn’t eating the same way as before. I tried Herbal Life, then Shakeology, then Modere, and none agreed with me because I have so many allergies. So I gave Isagenix one last try. It was perfect for me. Wow — my blood work started coming back so good, my doctor asked me what my secret was, since I [also] started working out and feeling even more amazing. I feel as if my life is back.

Do you have a few favorite recipes you’d like to share?

(Click on the links for a printable version of these recipes picked by Jeanette!)

Veggie scramble – This veggie-packed egg dish is scrambled in coconut oil and topped with avocado and tomato

Citrus fish tacos – Lettuce leaves serve as the “tacos” in this tilapia recipe, complete with mango salsa

Creamy zucchini pasta with shrimp – “Zoodles” (julienne-peeled zucchini “noodles”) and an avocado-basil “cream” sauce? Yum!

Which foods do you eat or avoid with your lupus in mind? Please add a comment below or join PatientsLikeMe to chime into this forum discussion!

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Exciting New Profile Chart Upgrades in ALS Community

Posted January 20th, 2010 by

Today, we’re announcing an exciting major upgrade to our PatientsLikeMe platform – new profile charts with significant functional improvements.

We started PatientsLikeMe with the idea that visualizing your condition and treatment history over time is a powerful way to understand the impact of your treatment choices and tell the story of your progress to other patients like you.  So, we designed the website with the profile charts as the centerpiece around which the rest of the site activity is organized.

new_profile_charts

The new profile charts, which we’re rolling out today in the ALS community, are designed to help you understand your own profile better and tell your story more effectively. Ultimately, these charts will help you answer the question: “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”

Here are some of the functionality improvements the members of our ALS community will notice:

  • Charting of treatment side effects. If you have reported side effects for a treatment (by filling out a treatment evaluation), you can now see them plotted on your profile underneath that treatment.treatment_side_effects
  • Charting of treatments taken for a symptom. If you have reported that you are taking a treatment for a particular symptom (by filling out the information in the treatment’s “purpose” section), you will see those treatments on your profile plotted underneath the symptom.treatments_for_a_symptom
  • Customizable timescale. It is now easy to see your history over various time spans from 1 month all the way up to the entire history, all at the click of a button.
    timescale_switcher
  • General visualization clean-up. We made some design improvements to make the charts easier to read, such as the visualization of the treatment dosage changes.

What our members will notice more than any of these improvements is that when you interact with the chart (by zooming, opening/closing charts or side-effects, etc.), the interaction is smooth and instantaneous.  This is because we completely overhauled the technical platform we are using to display the charts. We think that this new technology will make it quicker and easier for us to give you even more chart innovations in the future.

(For the technically inclined, the old charts were static images with Ajax mouseovers and timeswitchers, and the new charts use Flash technology.  Note: All members must have the necessary Flash component installed to display the charts and, in some cases, a Flash installation upgrade may be necessary).

As with all our pilot programs, we will be testing it out to make sure it’s working well for our members. Once everything is working smoothly, we will roll the charts out to our other communities.  But even more exciting, we want to continue to add charting innovations, such as the ability to re-order treatments by purpose (treat my condition, treat a symptom, etc.) or overlay the profiles of other patients just like you.

These new charts are the first of many new exciting upgrades to the PatientsLikeMe platform this year. We add these enhancements because we want to stay true to our core values: putting “Patients First” and making changes that “Create Wow!” We hope you agree.

Do you have feedback on the charts or how we’re doing in general? Please let us know!


PatientsLikeMe member jcole