I thought it might be good to give an update as to the supplements and medications I take to keep my lupus under control. I started a plant based diet in July of 2009, and was strictly plant based without any waffling until about a month ago when I was flaring and desperate to figure out if food was causing any issues. When lupus flares, I tend to panic and reach for any reason possible. I doubt I will be doing that in the future as nibbling off a family member's plate led to extreme discomfort and didn't help me at all. I have to be honest: I was relieved. I'd like to continue embracing veganism.
Photo by Pigs Peace Sanctuary
My family has a pretty healthy diet by popular standards, but they are still very meat and potatoes. My gravitation towards a vegan diet was only comfortable when I was doing it for health reasons. As I started defining what my thoughts and beliefs were on the subject, I could sense they were becoming more and more uncomfortable. I was on a raw vegan diet for a time and then went to an extremely restricted diet over the past several months. I started trying the phase 1 diet in April and then followed that strictly (no fruit, mushrooms, cashews, grains) for several months. I noticed I started developing some odd symptoms - fatigue, my hair stopped growing, I dropped weight suddenly no matter what I was eating, etc. I assumed this was from malnutrition. I started eating more variety and it just made me sicker. I thought I had a candida issue, so I thought perhaps cooked veggies and a little *gasp* meat once a week may get me through this, but that just made things horribly worse. Then I started trying cooked grains and fruit. Anything new was giving me horrible upper g.i. pain, nausea, and diarrhea.
Ketotifen. Ketotifen is a mast cell stabilizer and also an anti-histamine. I started out with one dose in the evening and gradually worked up to 3 doses per day. After about a week, I noticed vast improvement in digestion, comfort, and I could eat many vegan cooked items. It has continued to help, but I still do best on a high raw diet. Too much cooked can lead to discomfort from gas, but it's a huge improvement. The doctor believes that the flare up was a lupus flare, and not necessarily mastocytosis. We also have not done sufficient testing to determine whether that was the cause.
When I thought my symptoms were being caused by malnutrition, I had a vitamin panel done. I was pleasantly surprised how little I was deficient in. I was deficient in B6, Asparagine (an amino acid) and my antioxidant function is not great. In each of these areas I was minimally deficient and the supplement repletion recommendations were so low, I couldn't find supplements in that dosage. I could have probably regained B6 and Asparagine by altering my diet, but I elected to start supplementing for B6 and supplement antioxidant function with vitamin E, N-Acetylcysteine (Glutathione), Selenium, vitamin D3, alpha-lipoic acid, and to continue with B12, vitamin C, digestive enzymes, probiotics, and MSM.
Finding vegan supplements can be a little difficult. Capsules are often made from animal byproducts, and I also usually stick to pharmacy grade that are independently tested. My B12 injections - I'm really not sure about how they are sourced. I recently ran out, so I plan on calling the pharmacy. If they are not vegan, I'll probably look into vegan sources because my levels are so high right now. Vitamin D was also very difficult for me to find because most vegan sources have a lot of food ingredients that I am allergic to (blueberries, cranberries, soy, etc.). I finally hit the jackpot at rawvegansource.com - they have a local store. I don't see it on their website, but if you call in, they can help. Vitamin C was another issue because it's usually sourced from corn. I found NOW brand Tru-C vegan capsules, which I pair with MSM for optimum function.
Vitamin E was another tricky one for me because it's often sourced from soy. I am very allergic to soy! Rawvegansource.com had a rice based formula that I put in my smoothies.
One last thought. Without low dose naltrexone, I would be in a world of hurt. It has helped me avoid prednisone, methotrexate, anti-malarials, and all of the side-effects and organ damage that can come with them. I think it is so important for people to educate themselves and not give up when facing a major health issue. Follow your doctor's advice, but don't be afraid to question them, educate yourself, and suggest alternative treatments for them to consider. I hated prednisone! The side effects were hard on me and my husband (I got REALLY irritable). Now I have better quality of life, even with the bumps I hit along the way.
Well, I've rambled on enough. Time to fix breakfast and spend time with friends and family.