Ms protocol

Holistic Health

Who We Are

Definitely not doctors! James has MS and is the primary person experimenting with these approaches. Laura has mysterious non-MS chronic health issues ME/CFS that has also been improved by many of these approaches, and is a compulsive holistic health researcher who has put together many of these ideas. We hope these lists will expand your sense of possibility, but urge you not to think of them as medical advice.

What MS Is and How This May Relate to Other Conditions

Multiple sclerosis is an autoimmune disorder, meaning that the immune system is overactive and starts to attack the body itself. There are many auto-immune disorders, including common forms of thyroid disease, arthritis, diabetes, skin disease, IBD and possibly even Alzheimer’s. In MS, the immune system attacks the nervous system specifically, causing demyelination (which is the removal of myelin, a protective coating of the nerves) and eventually nerve damage. MS generally begins with periods of relapse and remission, then often becomes progressive. There are far less medical treatments available once MS reaches the progressive stage, possibly because most medications target demyelination, but none are yet approved to promote remyelination. Interestingly many of these holistic therapies show some evidence of potential benefit at any stage! There is also some evidence of mitochondrial dysfunction in MS, which is not yet well understood. Here is a good overview of the current medical understanding and research on that: Is multiple sclerosis a mitochondrial disease?

Our own therapeutic approaches are mainly related to reducing inflammation (immune system activation, which is healthy in acute situations like an injury or infection, but harmful when chronic) and also to neuroprotective and neural-growth strategies. Because so many other chronic health issues (from osteoporosis to heart disease to cancer) have a significant inflammatory component, and because everyone wants brain health and deals with some demyelination due to aging, these are approaches that may also benefit people suffering from other conditions or even just hoping to remain optimally healthy.

For James, there is something of an “inflammation cycle”. Something stresses his system, the MS flares, that causes worse stress, and without intervention, this can lead to several weeks of bad reactions. With intervention, as early as it can happen, this process can be interrupted and even lead to improvements to the system by noting what caused the initial inflammation, and taking steps to not encounter it in the future.

Dietary Approaches

There is evidence that low-level food sensitivities, which can’t reliably be detected with testing, contribute significantly to inflammation in most people. Here’s the advice we follow for diet:

  1. Eliminate, as much as possible, the foods that commonly trigger these sensitivities, even if you have no reason to believe you have trouble with them. The worst of these offenders are gluten and cow dairy (we do eat a little sheep and goat dairy, which is easier to digest, but YMMV), and also include most other grains and legumes (especially soy). Less harmful grains and legumes (depending on your personal sensitivities) may include white rice, chickpeas, green peas, lentils and fermented products like (gluten free) soy sauce.

  2. Reduce sugar and poly-unsaturated oils (found in most vegetable oils and chicken fat). These foods usually aren’t allergens in the same way that the foods mentioned above are, so a little of them probably won’t trigger a cascade of immune responses that can last six months, but they are inflammatory so generally the less the better. Replace fats with avocado oil, olive oil, coconut oil, butter (if tolerated, it’s usually the least allergenic dairy product) and beef fat. Stevia and monk fruit drops, as well as dates, can be used as sweeteners. Raw honey is a superfood in its own right, but like all added sugars should probably be limited. James uses a little raw honey in his morning coffee and replaced chocolate with a mix of cacao nibs, raisins, almonds & pistachios (aka C.R.A.P.). We generally try to keep our added sugar consumption under 15 grams a day.

  3. Proactively eat tons of nutrients. The Wahl protocol recommends nine cups of diverse, colorful cooked and raw fruits and vegetables every day. We have found this easiest to do by having a smoothie for breakfast, a big salad for lunch and cooked food with vegetables for dinner. Also, fish at least three times a week is ideal, followed by beef and not leaning too heavily on chicken. Organ meats are strongly recommended if you can handle that kind of thing. James makes a weekly mix of preferred veggies (fennel, chard, mushrooms, peppers & carrots) with rice & some protein (usually ground beef) for easy meals. This helps cut down on low nutrient snacking.

  4. Eat fermented foods regularly to improve the bacterial balance in your gut, which is generally associated with reduced inflammation, increased nutrient absorption and better tolerance of occasional problem foods. For example, (nondairy?) yogurt, raw vinegar, kombucha (though watch out for the sugar) and fermented vegetables like kimchi. Sandor Katz’s “Wild Fermentation” is a great text on DIY fermentation. Fiber, gelatin and resistant starch (formed in cooked then cooled potatoes and rice) are also especially healthy for the gut biome.

  5. This is mostly subjective, but James has a strong experience of aromatic foods being beneficial to his overall inflammation. Strong herbs and spices like fresh basil, lemongrass, ginger and curry pastes regularly included in our diet seem to help. Garlic and hot pepper work well for James, too, but can be overdone.

If you’d like more detail about diet, the way we actually eat is most closely described by The Perfect Health Diet. It’s also fairly similar to what The Whole30 Program recommends, which can be a relatively easy place to start and a good way to learn about your personal sensitivities. The Wahl Protocol by Dr. Terry Wahls is another classic book describing a doctor’s method of treating her own MS using a similar diet (she is currently testing her protocol clinically, with encouraging initial results, and on a personal level has improved her symptoms dramatically over a period of many years). The Paleo Mom Dr. Sarah Ballantyne also has a lot of interesting contemporary research and recommendations for her autoimmune protocol, which is a related dietary approach that eliminates even more potentially problematic foods like nightshades - so if you find this kind of thing encouraging and want to consider taking it further, that’s a good place to learn more.

Bonus tips for GF newbies: a combination of cassava or tapioca flour and almond flour makes pretty good grain-free baked goods, and rice flour is great for crispy coatings. Potatoes, sweet potatoes and rice are cheap and convenient starches. Also, an Asian grocery store is a good place to get reasonable prices on rice pasta, tapioca, rice and potato flours and bulk curry pastes.

### Medical Marijuana

Marijuana is an incredible ally for dealing with MS, in a variety of forms. Here are a few things that James has picked up which work for him:

  • For preventative or daily use: use RSO (Rick Simpson oil) when possible. As an edible, RSO reduces impact on the lungs, contains more of the full plant profile (marijuana has hundreds of components and we’re only now in the process of learning how they interact medicinally). Also, the slower onset and offset helps avoid any dramatic peaking. A 1:1 THC to CBD mix is recommended, as they potentiate each other. THC does have unique anti-inflammatory benefits, so consider using at least a low dose before bed if you don’t enjoy the high.
  • For acute situations: James uses dabs when symptoms are dramatic or sudden. This is fast-acting. “Live resins” or strains containing higher terpene content (and plant-specific terpenes) seem to do the most good.
  • Other considerations: Strains with limonene, pinene, myrcene, caryophyllene & terpinolene seem to work better for MS than other strains. Consider sativas for the morning, hybrids in the afternoon and indicas at night, but use Indica even during the daytime if inflammation is high. That is really over-simplifying it, but it’s a good place to start. Find the strains (or families) you enjoy, and use them when it fits your life. Follow your nose, literally. If it smells the way you want it to smell, it’s more likely to help.
  • Cartridges are expensive and wasteful, but are useful for travel or emergencies. James generally has a pen with him when he leaves the house.
  • CBD (or Delta8) on its own is still excellent at reducing inflammation and people who are concerned with the high from marijuana should still give those a shot.

Supplements

There are a huge number of supplements that could potentially be helpful with MS and related conditions, and cost is often a limiting factor. This is a list of those we guessed to be among the most important, and it was signed off on by our doctor. If you want to consider just a few of these, the vitamins and minerals may be the cheapest and most foundational.

  • Vitamin B12 is often deficient in chronic illness. It is needed for mitochondrial function and energy production. Methylcobalamin is the most reliably absorbed form.
  • Vitamin D also tends to be deficient in chronic illness, and especially in low-light climates like Pittsburgh. MS is strongly correlated to locations and lifestyles that involve less sun—so getting into the actual sun more is probably the best approach, but so is a high-dose supplement as a backup. D3 is absorbed much better than D2.
  • Magnesium is another common deficiency and important to a huge number of biological functions, including stress reduction, sleep and the production of myelin. Ideally it should be balanced with calcium, so some sources recommend a combined cal/mag/D supplement.
  • Vitamin C is a powerful antioxidant, which is generally considered helpful for MS.
  • Fish oil contains generally healthy brain nutrients. If you eat a lot of oily fish, it might be ok to skip it.
  • Borage oil specifically if you have joint pain, it just helps.
  • Lion’s mane mushroom may help to promote remyelination.
  • Willow bracket mushroom may be neuroprotective, helping to reduce demyelination. It’s a bit hard to find, so we use this medicinal mushroom blend (as well as a lion’s mane only product): Twelve Rivers Mushroom Complex Extract Powder.
  • Co-Q10 is a powerful anti-inflammatory antioxidant that’s shown to help reduce fatigue and depression in MS. Our doctor recommended the ubiquinol form.
  • PQQ is a supplement that works with Co-Q10 to increase number of mitochondria and mitochondrial function.
  • Alpha-lipoic acid has been shown to reduce brain atrophy.
  • Phosphatidyl choline (sunflower lecithin) is neuroprotective.
  • Turmeric or curcumin is generally anti-inflammatory and may help reduce pain.

### Lifestyle Approaches

  • Sleep is really important, even if it’s difficult. We are night owls by nature, but have done a number of things to encourage sleep, including reducing blue light at night on our computer devices, making a point to stop using devices at a certain point (reading, massage, other non-tech activities seem to be good for transitioning to sleep) and a full day can all help sleep come naturally. You might want to check with your doctor about melatonin, but it sometimes helps when sleep is especially difficult. Waking up naturally when possible seems to also help. James now wakes up every day around 7am when the birds are up, and we have adjusted our schedule significantly to try to get plenty of sleep anyway.
  • Exercise, especially strength-building exercise is also really important. However, it’s also easy to overdo it or get overheated and cause flares, so this can be a delicate balance. Laura recommends Autoimmune Strong for information on autoimmune-specific training, and also Iyengar yoga in general (which has highly trained teachers who can work with people who need special accommodation) and Yoga Selection online for yoga practice that’s both strengthening and very careful about alignment, technique and modification. James has been training with his mother who is a personal trainer, and they make a lot of use of TRX/body weight exercises, which can build strength without harming injured joints.
  • Posture. A lot of our environment seems designed to cause stress to our skeletal system, and as a result, stress on our muscular and neurological systems. Driving is particularly bad, but so are most places people sit. To whatever extent you can keep a “neutral spine” and good ergonomics, this helps reduce the “death by 1,000 cuts” that bad posture can cause. We try to set up an ideal environment to make good posture convenient, using raised desk surfaces, ergonomic pillows and so on. It may seem trivial, but it’s part of becoming aware of your body, patterns and what causes an inflammation cycle.
  • Drumming has been revolutionary for James. He has been a hand drummer for some time, but recently has been practicing drum kit again in hopes it might help his MS, by incorporating more limbs and requiring more attention. It has helped. Drumming can be an easy route into a meditative state, basically requires one to sit in neutral spine, and it is a good energy sink when harder exercise isn’t realistic. There are some studies that drumming (seems to help remyelination. It also seems to change the shape of the brain somewhat, so further study is likely needed (Drumming makes your brain more efficient). Laura speculates that other exercise that involves both intense mental concentration and serious coordination of both sides of the body such as Siva Nata Yogamight have a similar effect.
  • Reducing Stress, both by creating a lower-stress lifestyle and also strengthening your parasympathetic nervous system and vagus nerve function with meditation and other practices. More practice ideas here.. This is critical. There is nothing that inflames the body quite like stress, especially long-term stress. Dishonesty and avoiding difficult issues are especially bad from a health perspective. Not every stressful situation is possible to change, but this is why it’s important to address the stress you can, to give you the peace needed to face what you can’t change.
  • Fasting may help to increase remyelination. This includes both longer fasts and also intermittent fasting techniques (for example, a limited time window for eating every day) but doesn’t include juice “fasts” that don’t significantly reduce calories.
  • Certain wavelengths of red and infrared light used therapeutically may help to reduce inflammation and improve energy/mitochondrial function. We’ve experimented with this kind of light during massage, which feels good, but is a bit hard to separate from the massage itself (which is also helpful). More information and products here.

More experimental approaches

  • Medical treatment recommendations change once MS enters the progressive stage. There’s some evidence that the nicotinamide form of niacin (vitamin B6) may be at least as effective as any medication at that point.
  • Psychedelics including microdoses of psilocybin generally contribute to neural growth and function. Mycologist Paul Stamets recommends a psilocybin, lion’s mane and niacin stack for optimal brain and nerve function in general, which is curious in light of both lion’s mane and niacin being previously mentioned here. Psilocybin has been known to help people recover from concussions and other brain damage, and may help MS nerve damage in a similar way.
  • Clemastine Fumarate (available over the counter as allergy medicine Tavist) causes drowsiness, but may also help significantly with remyelination and even reduce symptoms. This off-label use has not yet been thoroughly tested.
  • Smoking is highly correlated with MS, possibly more so than almost any other potentially causative or exacerbating factor. Stop smoking if you can! However, nicotine itself is neuroprotective and can help clear mental fog temporarily. So, nicotine patches and/or vaping may be worth considering, especially if you have trouble quitting. Kind Juice E-Nectar has few chemical additives, unlike most brands. Vaping can still irritate and potentially damage the lungs and should be considered with caution.
  • Pork consumption is also somewhat correlated with MS. Is this meaningful, or is it just a cultural coincidence? No one knows for sure–but fortunately pork is not an essential nutrient. If you do eat it, you might want to keep it on the low side.
  • Saunas and similar heat treatments may contribute to remyelination. However, like exercise, there’s also a significant risk of overdoing it and triggering flares, especially if you’re generally sensitive to heat. Proceed with caution.
  • Cinnamon? For a while James was taking cinnamon pills because he craved them, which we tend to take seriously. We learned that cinnamon has a mild natural antibiotic function which can help to reduce harmful gut bacteria (in conjunction with other dietary adjustments). Now he just puts it in his coffee.

Final thoughts

Most of all, you have to meditate on your own state, notice what is throwing you off, and adjust accordingly. A lot of the changes that we needed to take on to heal our health issues felt difficult at first, but are now welcomed as trusted allies. We’ve done this protocol imperfectly–with cheats and time off–and we certainly hope that it won’t become an additional list of things to beat yourself up about not doing. We have embraced the changes more and more over time, though, because we feel better making better choices. And feeling better is the whole goal, right?


The nature of this note situation is that some of the notes will always be extremely unfinished.
Questions? Comments? Write to me at lauradawngyre@gmail.com (or @me).