LDN, Plant Based Diets, and Lupus

I've gotten a lot of really nice questions asking how I'm doing since I haven't posted in quite a while. I am doing pretty well! Work has been extra stressful, and some personal things popped up that were just as (read MORE) stressful, but my health has held up pretty well. I started having some break through symptoms - primarily fatigue, nausea, pain, and a bit foggier mentally. I went back to a raw vegan diet, started staggering the LDN to every other day, and have upped the B12 with good results.

Low Dose Naltrexone (LDN) has worked wonders for my autoimmune disease. Over the last year, I have been noticing more breakthrough symptoms. Things are still very manageable, but it was starting to interfere with work. I read an email posted by Dr. Zagon about the potential benefits of staggering doses. The benefit of LDN comes from binding to opiate receptors for short periods of time. While bound to the receptors, the body picks up the message that there is a deficiency of endorphins. The body begins producing more opiate receptors and boosts endorphin production. This causes the endorphins to turn around and help moderate the immune system. This is called a rebound effect, and low dosage size and short duration in the body is critical to achieve the effect. If the body can't clear the medication in a short period of time, the benefit declines. Lately I've been taking the medication every other day (I wouldn't recommend this for folks just starting out that don't have a cause to try this), and it's been helping. I've been having more sleep disturbances, but have more energy still.

We had a couple fuzzy visitors - Annie was fairly gracious about it

One of the problems I was have in December and January was vertigo and nausea. I thought it was just a symptom of my lupus, but my chiropractor suggested that I get muscle tested for B12. Muscle testing is something I don't whole-heartedly believe in, but I started taking the B12 and after a week felt much better. I have started taking Biotics B12-2000 lozenges in addition to a patch of B12 behind my ear once a week. I've still managed to avoid shots for now.

Everyone needs a sock monkey hat! Champ demanding another walk.

While being stressed out, the benefits of making it to the gym every day have become more apparent. My boss even tells me to go - my productivity and mood improve afterwards. My energy levels tend to drop around 2 or 3, but instead of going with the wave of people to the coffee shop to get a latte and cookie, I head down to the gym for my lunch hour and come back to my desk ready to work a couple more hours. It's worth eating at my desk. Instead of getting off the bus and greeting my husband exhausted, we can spend some time walking the dogs and chatting.

Champ, enjoying the snow!

Champ has also been doing really well! It's been quite a while since his Mast Cell diagnosis (at least a year and a half), and he has been a frisky boy. He's been playing with Annie and demanding several walks a day. We haven't seen any signs of recurrence. I've got him on curcumin, a mushroom blend, and COQ10 in addition to a joint supplement.

I have been reading The China Study lately, and it is amazing. I plan to post more on that later. If you're interested in learning more about LDN I recommend the following links:

http://www.ldnscience.org/low-dose-naltrexone-ldn/how-does-ldn-work

http://www.ldnscience.org/low-dose-naltrexone-ldn/questions-and-answers

Exercise or Stress?

Doctors would repeatedly tell me that I should work out, and I would laugh. It didn't make sense to even try. I was always exhausted and body parts hurt. Back in June, I went in for a bunch of tests and didn't get a whole lot of answers. I read some articles about different kinds of stress and how to cope with them. Food is one source of stress - foods that are highly processed, high sugar, and hard to digest make our bodies work overtime on processing them. There's work stress, relationship stress, and then there's stress from putting strain on the body. A weird thing happens when we work out. The body gets stressed, but putting the body under a small amount of stress repeatedly makes the other normal stressors in our life seem smaller. Walking up and down stairs between meetings no longer causes cortisol levels to rise. Getting stressed out about a work project becomes more manageable. As stress levels decrease, health is bound to improve. Right?

I made the decision to try running, which is kind of humorous considering I decided this while reading an article on the couch while recovering from digestive issues and fatigue. I started out really small - I would run 30 seconds and walk 5 minutes, repeating 5 times. I stayed close to the house while running just in case my stomach kicked up. Each week or week and a half, I would try to increase the time running and decrease the time walking. I kept reading Brendan Brazier's Thrive Diet book and other articles my husband had laying around the house. Starting at such a small scale helped me feel like I was able to achieve something. Soon after, I ordered a Zumba workout set and started alternating days trying to run and working out to a Zumba workout.

Annie & I, before work outs began

The first few times I tried Zumba, I was exhausted after 20 minutes. I felt like it was a great workout. I would do 20 minute abs one day, run my 5 reps of 30 seconds the next, and do the 20 minute express workout after that. At the same time, I stayed on a vegan diet but decided to incorporate more foods. Some meals had cooked items (still a whole food, not packaged or processed in the traditional sense), I was eating fruit, and incorporating a few grains.

Fast forward 1.5 months and I hit a setback. Around mid-August, my knees started hurting. Each step was painful. I have chondro malaysia patella, and running with weak muscles around the knee is not good. The knee is already prone to tracking incorrectly, and as you continue to run, it just perpetuates the problem. At work, we have a great deal on our gym. It's only $15 for the membership, and the check is made out to a charity. A personal trainer there also had a pretty good deal running, so I started working out with the trainer. After working out with him in September, the pain in my knees is gone and I can run quite a bit. I was wondering if I would have to start out at a minute running and four minutes walking, but found I was able to run longer with all of the cardio with Zumba and alternating bike and rowing at the gym.

I'm not sure exactly when things started to shift for me. I hated working out. After a month and a half, I called a friend to work out with me just so I wouldn't give up. My progress was so slow, I didn't feel like I was getting anywhere. I started working out at the gym at lunch and noticed that the day got a little easier to handle. I would have a bad meeting and leave frustrated, then go work out and come back to my desk smiling. Working out in the middle of the day forces me to take a lunch and breaks up the monotony after sitting at my desk and working on reports or sitting in long meetings. It started mattering a little less that my weight wasn't changing at all and I couldn't see an awesome six pack after 5 months of working out more than I ever had in my life (although honestly - that wasn't saying much).

In October I ran my first 5k. I finished in 38 minutes alternating running 5 minutes and walking 3 minutes. A week ago I beat my best time and am down to 35.5 minutes. My warm up before lifting weights today was running a mile. All at once! I've noticed my stomach is more predictable and I have a LOT more energy. I come home and want to unwind, but my boss has noticed I am much more productive and no longer crash at 2pm. I don't plan on being as fast as Lance, but if this keeps up, I may be a runner eventually after all.

Annie waiting for her 5k to start the day after I ran mine

In other news, Annie ran the Dawg Dash with Lance in October and they did quite well. Annie can now run the 3 miles at a sub-6 minute pace and would have finished at 17:30 if someone hadn't steered her the wrong way and added an extra .25 miles ;)

Lance & Annie - post Dawg Dash

Migraines, Kidnies, and Livers...Oh My!

Let's see... when we last left off, I was wondering if I had my first malar rash, but was still busy baking. I had started taking Diflucan. After 30 days, I was still symptomatic for systemic candida, so I moved back to a very strict diet and got a second prescription for Diflucan. I'm not sure if it was really a malar rash as it only really showed up for a few days when I took a shower, so I feel lucky.

Last week I started getting annoying headaches, and perfumes or colognes make them much worse. This weekend I went through a department store on the way to an adjoining restaurant and came down with the beginnings of a migraine about 3/4 of the way through the meal (I had eaten beforehand, so I know it wasn't something I ate). That turned into light sensitivity and nausea, and I staggered through a bookstore that was closing down. It was a great sale and I scored some cookbooks and The Girl Who Kicked the Hornets Nest. The migraine stuck around at varying degrees (from able to function with waves of nausea to curled in the fetal position) through Monday morning. Annie took advantage of my fatigue and we had a nice long nap on Sunday.


The perfume wasn't the only thing that set off my headache. I spent Saturday morning going through my closet and chest of drawers for Goodwill and cleared out a lot of space. And kicking up a lot of dust! I finally ordered our wedding and honeymoon pictures and got the big pictures in frames and started moving boxes around. Streaking through a department store and then sitting in the restaurant later that day, surrounded by food full of gluten, soy, and who knows what else were the final straws.

I'm really tired, have nausea, mid-back pain, and arthritis. I was thinking about how little blogging I've been doing, and that usually means that I don't have the energy to bake and write after coming home from work. This weekend's turn of events has forced me to seriously reconsider how I am going to proceed with The Discerning Kitchen. I was planning on working full time and baking during weekend evenings and going to farmers markets. I see now that is not realistic with my health. I'm going to keep trying, but I'm not sure what things will end up looking like.

Next steps are getting blood work to check liver and kidney function. My doctor has suggested a couple of medication options if the migraines continue. I'm hoping the diflucan has done its trick, but I have a suspicion that the intestinal ulcers have continued. I'll keep my fingers crossed.

In other news, CNN and other headlines drummed up news about the new Lupus medication that the FDA has approved. I would encourage people to read the research study carefully and weigh whether the risks are worth the reported benefits. This is how all medications should be approached. While I agree it's great that people are looking into the disease, the medication is not perfect. Understanding how the disease is triggered and progresses would be a great first step. Some of the theories are laughable. Recently my mom heard on the news that doctors wondered if lupus occurred more often in girls because we are kept so clean. I spent much of my childhood covered in dirt and playing in trees. I guess they have to start guessing somewhere.

Stress and Rashes

Intellectually knowing that stress is a health problem waiting to happen and finding ways to constructively reduce stress effectively are two completely different things. Since Annie came into our home, I've definitely gotten more exercise, so that's a positive move in terms of reducing stress. Except when she eats furniture.

"Me, eat furniture?? Only because you made me wear
that shirt!"

I had to move to taking Diflucan. Nystatin didn't work and then Amphotericin didn't help my stomach woes either. For the most part I stick to a very low carbohydrate diet of mostly vegetables and plant based fats (nuts, olives, etc.), but every now and again I go wild and have some fruit.

This morning I freaked out a little when I looked in the mirror. I took a warm shower, got dressed, dried my hair, and looked in the mirror and I had a bright red rash across the bridge of my nose, spreading across my cheeks. It got substantially less noticeable a couple hours after the shower. My face feels a little tight across my face and it kind of feels like I've got a bit of a sunburn. I can barely see it now - it just looks like I got a little bit of sun on my nose and cheeks. If I move my glasses and touch my face at all, that seems to aggravate things, so I'm trying to leave it alone and hoping it was just a figment of my imagination. I have a more noticeable rash across the tops of my shoulders/back that's a faint pink with textured, raised skin. I hate to admit it, but for the first time I may have a malar rash.

I've been a bit tired the past couple days. I think it's because it's right before my period and things tend to get more stirred up then. Before then I felt like I was doing a little better. Some arthritis when a low or high pressure comes through, but alright overall. Now I feel a little worried and overwhelmed. This weekend I'm hosting a tasting party for my baked goods so people can rate them. I'm super excited for it. I'm also worried that I'll work myself into more of a flare. I've asked my boss for a couple days off next week. Work has been slower than usual, so it was a good time to ask and I can catch up on sleep.

My nephew has been spending a lot of time over at our house. He has a lot of allergies, and I'm always so happy to see him carrying around goodies. He loves my cookies and goes around the house like a little hamster with his cheeks stuffed full. Some day I'd love to have a bakery, but for now I'm happy figuring out "graham" crackers, cookies, and biscuits he can snack on during his preschool snacks and lunch.


I love having him around and listening to him run around the house with Lance yelling "Choo chooo!!!" when the pretend to be trains. Last night it was a little too much and I ended up half asleep on the couch while Lance held his hands and had him bounce up and down off the big yoga ball in the room. It would be amazing to have that much energy all the time!

Someone really liked his brand new toy truck!

My Take on Adya Clarity

Recently I had someone submit a question. What were my results with Adya Clarity?

I should preface this by saying I have an abnormal immune system and don't usually respond to medications or supplements as expected. However, I did not expect to actually get worse. I took Adya Clarity for several months in conjunction with a very low glycemic/carbohydrate diet. I ate primarily vegetables with some nuts and seeds. After a few months I was so bored of my food and decided to try a piece of fruit. That was met with excruciating pain. Then I tried some cooked quinoa. Again, I felt a lot of pain.


I started to lose hair, was extremely fatigued, and my skin got really dry. I started getting desperate and listened to my doctor's suggestion that perhaps a little bit of meat once a week to every couple weeks may not be a bad idea. I struggled with my ethics and compromised them because I felt like I was dying. It's also easier to blame how you feel physically on something you can control - like food. Everything hurt. But meat was not the solution. In fact, it made matters worse. I tried some meat and ended up stuck in a baseball stadium stall evacuating both ends. It was epic.


I stayed on the low carbohydrate, vegan diet (I had no choice) and took stool tests to see if I had bacterial or parasite problems. Then my doctor put me on ketotifen. He felt that my mast cells were releasing histamines and attacking my small intestines in particular. Mast cells are most prevalent in the lungs, skin, and small intestines. I had developed asthma for the first time since my childhood. I had rashes on my back. My small intestines were killing me any time I tried to eat something out of my steadily restrictive diet.

The test results came back and showed that the candida I was trying to improve with Adya Clarity actually got far worse. I had intestinal bleeding and other results that indicated inflammation in the large and small intestines. The ketotifen calmed things down significantly and now I'm on Amphotericin, which is an anti-fungal that doesn't permeate the intestinal wall. I suspect that it's not going to do the trick. I was on Nystatin recently and it didn't clear things up. I'll probably end up moving on to Diflucan. I'm still on a vegan diet, and happily committed to a vegan lifestyle. Right now, I'm on day 2 of a green juice fast. My stomach is bugging me again as I fell off the wagon and had one cookie this weekend and then couldn't make it to the bus. I'm planning on at least 3 days of the green juice with plenty of probiotics and Amphotericin.


I figure even if I find a medication that works, I will probably have to stay on a low carb diet except for a few treats very occasionally and my doctor thinks I may have to go on a preventative (either herbal or medication). He feels my immune system is missing a factor that helps target candida. All those symptoms of hair loss, fatigue, dry skin? That wasn't really malnutrition. It was candida overgrowth.

I'm not someone who is out to disprove the claims about Adya Clarity. It may really work for some people. It didn't work for me.

Why I Avoid Carageenan

Image Source: wikipedia.org

Carageenan is a linear sulfated polysaccharide extracted from red seaweeds, or rather Irish Moss to be exact. It is used in laboratories on animals to cause inflammation in wounds, in joints via injection, and is forcibly ingested by primates to cause IBS and intestinal ulcerations in order to test other medications (just go to pubmed.org and search "carageenan"). It has also been linked to colon cancer in lab animals and may alter the intestinal bacteria profile, enhancing the growth of bad bacteria or squashing the growth of good bacteria.

How does this impact you? Despite being prevalently used as a disease inducing substance in medical studies, carageenan is used extensively in foods as a texture aid and is considered a vegan alternative to gelatin. It's also in toothpaste, hairspray, and many other personal care products. It's in ice creams, dairy alternatives, non-dairy cheeses, lunch meats, candies, and several other food products.

Carageenan is a processed and refined product, so many raw foodists who use Irish Moss in their foods are confident that the unprocessed, raw seaweed doesn't have the same impact on their health. To be honest, I'm not as confident as I used to be. During processing, potassium hydroxide is added to the seaweed (5-8%) and the cellulose is removed. It is then concentrated through evaporation. Perhaps the concentration is what is so detrimental, or perhaps the potassium hydroxide compromises the molecular structure sufficiently to cause this inflammatory response by the immune system. My vote goes to the potassium hydroxide personally as it is very caustic on its own.

For a much more detailed and thoroughly cited article on Environmental Health Perspectives, click here.

Note: There are several structures of carageenan (as shown above), and I don't know that ALL types have been linked to these issues.

Rough Day at the Doctor's

random moment of happiness: Annie showing her distaste for
pausing for the camera while there was snow to run in

I haven't published on this blog in quite a while. I've been trying to distract myself and de-stress more by focusing on my food blog. It was Vegan Month of Food, so I tried to blog as much as possible (I fell a bit short of my recipe per day, but I had a pretty good run).

The new medication, Ketotifen, has been helping quite a bit, but I've noticed my energy levels are going down and I'm having more gastrointestinal symptoms. I'm not in pain, but I'm having to run to the bathroom often and can't always make the ride in to work. I've noticed low grade fevers from time to time, my arthritis kicks up a bit, and I'm mentally foggy. I went to the doctor to review some test results. They made sense, but were a surprise.

I've mentioned before than LDN doesn't tend to work when I have Candida Albicans overgrowth in my intestines. I'm not sure why this is and my doctor and I tossed around a few theories. Does candida bind to receptors in the intestinal wall, preventing the medication from functioning properly? Does the LDN create more immune response and Herx die-off? I now have proof that my last flare leading up to starting the new medication was no exception to the candida vs. LDN problem. It just wasn't something I considered at the time.

I took this most recent g.i. ecology test in mid-October, before I started eating the food I write so much about on my food blog. This was back when I was vomiting and had severe pain any time I ate anything other than vegetables. My diet consisted of nuts, seeds, sprouts, sea vegetables, and vegetables. That was it. I wasn't consuming fruits, sugars, grains, legumes, mushrooms, cashews, peanuts, cooked food, or other plant material that is considered to encourage candida growth. I was also taking two Adya Clarity "Super Shots" per day regularly for a month prior to the test and on single shots for more than a month prior to that. I started out with a level 1 candida overgrowth on a scale of 5 and ended up at a 4 after months of eating a very strict diet and religiously taking Adya Clarity. This is the highest candida reading I've had to date.

Other issues that came up in the test:

• Very elevated lysozyme reading (ongoing chronic colon inflammation indicator)
• Borderline elevated Alpha Anti-Chymotrypsin (small intestine irritation)
• Gliadin AB, SIgA Borderline positive reaction to gluten (which I haven't eaten in 6 years)
• Abnormally low Chymotrypsin (Pancreatic enzyme markers)
• Positive for intestinal bleeding

I am an individual with a compromised immune system because of my systemic lupus, so my results with Adya Clarity may not be typical. I'm just so disappointed that my condition actually worsened while I was on it. I was really hopeful after hearing the testimonials. I will not be continuing the product. I hope others who are trying it find relief. It just didn't work for me. I feel like a couple months trying the product and two tests showing my deterioration are conclusive enough for me to discontinue the product.

I was feeling very frustrated yesterday because I felt like I was doing everything "right" and actually got worse. My doctor feels that I may have an immune system flaw that prevents me from regulating candida levels in my gut. My liver hasn't been detoxing things very well and I've had some physical signs of liver stress, so we don't want to try Diflucan yet. I'm starting on a medication similar to Nystatin that is taken orally and does not permeate the intestinal walls. He said I may need to stay on a maintenance dose once or twice a week until we figure out how to knock out the candida. I'm a bit worried it's more a systemic issue and has gone beyond my intestines. In that case Diflucan may be worth the risk, but we're also going to try separating out the candida albicans in my allergy shots and taking that a few times a week to build up immunity and desensitize me a bit to it.

Well, I'm really tired and it's the last day of Vegan MoFo, so I better get back to the food....

Looks like it's back to eating lots and lots of greens