My health has been slowly improving for four and a half years. Even so, I have been unable to exercise without payback, but that changed three months ago. I attribute this breakthrough to “minding my mitochondria” per Dr. Terry Wahls. Six months ago I watched her TED Talk. I had written a blog entitled MS Light? a few months earlier, suggesting that MS and ME are two branches of the same tree and I thought, if it worked for her, maybe it will work for me.
We jumped into the diet as a family in July. In a nutshell, 3 cups each of greens, sulfur containing foods and colored fruits & veggies each day, bone broth, grass fed grass finished meat, organ meat and seaweed. No grains or simple sugars. Olive oil, coconut oil, butter, animal fat. Every bite needs to be nutritionally dense. In addition, we cleaned up our act, went all organic, non-GMO, almost all locally sourced food, no cans containing BPA, no teflon or plastic in the kitchen. In addition, we emphasized a variety of mushrooms, ginger, turmeric, garlic, cilantro and fermented foods. We all noticed some improvement after a month, sick and healthy people alike.
Then I got distracted, sucked up in a negative energy vortex involving my family of origin, the kind of stuff that makes me nuts, and then sick. I didn’t particularly notice what I was eating for a while, but ate what my daughter, Julie, put in front of me. Historically, I can adhere to a regimen for about a month, before losing track, but Julie kept me on the diet.
One day, after about three months of eating this way, I was feeling particularly stressed, sick and discouraged. My husband said, “Let’s go for a ride on the tandem.” I quipped, “OK, maybe I’ll die.” I’ve ridden a few times before in the last few years, and the aftermath wasn’t pretty. But this time, it was only good- the ride itself, afterwards and the next day. I was shocked. After nine years, I didn’t really expect it to ever change. We went again the day after and have kept on going, trying to ride at least three times a week. We started with 4.5 miles in 25 minutes and have worked up to 17 miles in an hour and a quarter. Also, I can now hike a couple of miles again, even though walking was really tough before. When I stand, I don’t feel like somebody turned up the gravity anymore. My arms no longer feel heavy. No more wheel chairs through airports for this girl.
I am putting on muscle quickly. I have much less resistance to exercising than when I was younger and healthy. Maybe it’s because I couldn’t do it for so long or maybe it’s because exercise requires a willingness to suffer and my illness has taught me how to accept physical suffering. I am so motivated, we have continued to ride in freezing weather. We even tried off road for the first time a couple of days ago when it was 30 degrees out. 7 miles of dirt with mud and ice here and there, plus a fierce wind. Pretty hardcore for a 60 year old sick woman;).
We have been learning about food and improving our family’s diet since our kids were little, but even so, I must have been nutritionally deficient and/or being harmed from ongoing toxin exposure in my food to have experienced such a fundamental improvement in physical function. Here’s an interesting one. I have been taking Deplin 7.5 mg for years but in the last month, I’ve stopped tolerating more than a tiny dose, which is good, because the pharmaceutical preparation contains coating and additives that a quality OTC supplement doesn’t. So methylation status is much more complex than MTHFR genetics. It is possible to get enough folate from food, even for someone who needed to take it before in high dose pill form.
As I am using food as medicine, I am ever more suspicious of anything that looks like a pill or was made in a plant. I am taking Vitamin D3, methyl B-12 and OTC 5-MTHF in the form of Metafolin, B-complex, fish oil, UBQH, magnesium and chlorella. I am still taking antihypertensives and bioidentical HRT. I stopped Viread and Isentress a couple of months ago, once I knew my improvement was solid. A year ago, I had a hypertensive crisis when I stopped Viread monotherapy and restarted. This time my BP only went up a little for a short time and returned to better than prior baseline. I wanted to get off, because it is not going to be studied and there is no way to monitor what the drugs are doing. I was pretty sure they were helping in the first year, and we had clear laboratory evidence of improvement from the WPI, but after that, it was less clear. Both Ali and I did very well during the years we took them, but when we started, I thought we’d have viral load measures in a year and it didn’t happen.
Ali likes the diet, but hasn’t experienced the clear cut benefit that I have. She has continued her slow uphill climb, excelling in college at U Mass Lowell online, going out and being much more physically active, MCS improved, but still experiencing post exertional malaise if she pushes it. As she says, she has gotten very good at managing her spoons. She is living with her boyfriend in Albuquerque, something I wouldn’t have thought possible a couple of years ago. She has made huge progress, but it has not been clearly related to the diet. She wants to continue nevertheless. She stopped Actos about 6 months ago, continuing on metformin and luteal phase Prometrium with good control of PCOS symptoms. She came off arv’s in the last month and has been having a bit of a hard time since, but not so bad as to force her to restart at this point. With no support from the medical or scientific communities, it is time for us to stop if possible.
All of this is triggering my survivor’s guilt or whatever it is. Maybe that’s why it’s been so hard to write lately. Or maybe it’s just that my anger has been diluted by endorphins and anger has been the driving force behind many of the blogs I have written. I feel guilty reporting that this is what is working for me, because I couldn’t do it without lots of support. My daughter keeps me on the diet and exercise is dependent upon my husband’s skill and encouragement. My advice is find a friend to support you and, if you can exercise, pick an activity you have done before. I have muscle memory for the tandem; we rode for many years before I got too sick to do it.
Besides patients with neuroimmune disorders there is growing anecdotal evidence that a paleo diet is beneficial for patients with autoimmune disorders, in particular rheumatoid arthritis. Many ME patients have evidence of autoimmunity. Phoenix Helix is a good blog with lots of useful information, in particular how to do a strict elimination diet, cutting out the most allergenic foods that might be contributing to the problem, dairy, eggs, nuts, nightshades, legumes, and then adding them back in one at a time. Ali is planning to do this when she has a clear space to see if a particular food is keeping her from realizing gains.
So, since I was already on a good diet, what’s my guess for what is making the difference? The big changes for me were force feeding leaves, bone broth, seaweed, no grains, sugar or vegetable oils besides olive and a little sesame, almond and avocado oil. All organic. Toxin avoidance. Organ meats are a bit of a stumbling block for me, but I am eating some liver.
I am a small woman and can only eat 6 or 7 cups of vegetables and fruit per day. It falls off quickly if I don’t focus on getting in my cups. Once I eat what I’m supposed to there is no room for anything else. I have not been scientific about it at all. 3 cups is a heaping dinner plate, raw, where you can’t see the bottom. I just work on getting down as much as I can. I have a daily smoothie with leaves, berries and probiotics which helps me get down more greens.
A couple of my patients crashed themselves at the beginning trying to do the diet. Others have said up front, I can’t do it. I could never have done it without Julie. I think I could do it now, but I’m six months in and my daughter is now an inspired paleo cook, so if I stay home, I’m covered:). But I keep thinking about how to make it possible for sick patients. In a perfect world, share a cook. Otherwise, baby steps! Massive dietary change is hard on the body. Eat more leaves. Eat from the rainbow. Make bone broth once you have sourced clean animal marrow or knuckle bones. Put in some lemon or apple cider vinegar to help extract the minerals. It is kind of gross if you cook it on the stove top for a long time, but Julie makes it in a pressure cooker, which as far as I can tell, preserves the nutrients well. It is quick and wonderful. Healing. She makes it with garlic, ginger, fresh turmeric root and seaweed, then uses it to cook everything. I enjoy it plain or with spinach or kale.
There is so much to learn about food. Eating for health is a lifestyle, not a diet. Take a look at Eating On The Wild Side. It will inform your decisions about what to buy in the supermarket, farmer’s market and seed catalog, as well as how to store and prepare your food to maximize it’s nutritional value. It isn’t really possible to eat an ancestral diet since the foods that paleo people ate are no longer readily available. I really looking forward to gardening and foraging in the spring. My daughters and I started a Facebook community page called Healing In A Toxic World. Please join us. We are sharing what we are learning including how to source your food and lots of recipes.
Van Morrison – Days Like This