Vitamins, and Minerals, and Supplements, Oh My!
When you become diagnosed with a chronic illness, everyone and their uncle thinks that they are a doctor, nutritionist, and naturopath.
“You’ve got to take Vitamins A, B6, B12, C, D, and E.”
“You must be deficient in Zinc, Selenium, and Coenzyme Q10.”
“Try Biotin, Collagen, and NAD+.”
“Take Echinacea!”
“No, don’t take Echinacea, it could make your MS worse!”
“You need to eat a Paleo diet and cut out all gluten, dairy, eggs, and sugar.”
“Wait, only a raw food vegan diet will cure your MS.”
“No, vegetarianism may have caused your MS.”
Confused? So am I.
Here’s what I’ve concluded from my own review of the available research: there is solid evidence that Vitamin D deficiency is linked to MS. Other than that, no one knows what the heck they are talking about. There are plenty of anecdotal accounts of a variety of different diet and supplement regimens improving an individual’s MS symptoms. However, the science is lacking. It’s also clear why the science is lacking. No one stands to make any money from evidence that the Paleo diet or raw food veganism is best for MS patients. No one stands to make any money from a readily available vitamin improving the prognosis for MS patients. On the other hand, there is lots of money to be made by the drug companies in researching new Disease Modifying Therapies (DMTs). Case in point, the cost of my DMT? Approximately $26,000 CAD per year according to the MS Society of Canada website. This isn’t even the most expensive option. Lemtrada? Approximately $60,000 CAD in the first year according to the MS Society of Canada website.
Recently a member of my family passed on his chiropractor’s advice. Apparently if I take 10,000 IU of Vitamin D per day, it will “cure” me. This sort of advice really annoys me (for clarity, my annoyance is directed at the chiropractor involved and not at the family member involved). First, there is no known cure for MS. If the neurologists at the leading MS Clinic in Canada don’t know the cure, then I think that it’s fair to say that your chiropractor doesn’t know jack. Second, it really irritates me when people under the “health halo” abuse their position. I half-jokingly responded that he should let his chiropractor know that he ought to stop practicing neurology, because if he keeps it up, I’ll report his illegal practice of medicine to the College of Physicians and Surgeons of Ontario and the College of Chiropractors of Ontario. In my opinion, there are a lot of chiropractors who have a tendency of getting out over their skis. This one certainly did. The fact that your patients call you “doctor”, doesn’t make you a medical doctor. You are as qualified to practice neurology as I am, which is to say you have zero qualifications to practice neurology. I think that it is important that those in healthcare-related positions recognize their own limitations. I also think that it is important that those in these positions recognize that their patients may take their advice as having greater weight because they are under the “health halo”. When someone with a “health halo” presents a “cure” to their patients, they run the risk that someone may detrimentally rely on their advice (i.e., if 10,000 IU of Vitamin D “cures” MS, then I guess I can stop taking a DMT). Finally, you can overdose on Vitamin D. According to my neurologist, as well as the neurologists that I follow on YouTube, the generally accepted “safe” upper limit of Vitamin D supplementation is 4,000 IU per day. This is exactly what both my neuro-ophthalmologist and my neurologist advised me to take. They are also monitoring the Vitamin D levels in my blood. Vitamin D is a fat-soluble vitamin. It isn’t a water-soluble vitamin. If you take too much of it, your body won’t just pee it out. Overdosing Vitamin D not only won’t “cure” my MS, it could damage my kidneys or cause bone density loss, among other less serious but still problematic side effects. I’m not the only one receiving bogus advice from a chiropractor. In one of my MS Facebook communities, another member posted his frustration about a chiropractor claiming that neck positioning affects brain fluid balance, which is the basis for MS. According to this chiropractor, I guess we can all go off our DMTs and just get regular adjustments. Now, I don’t say any of this to offend the profession of chiropractors. There are lots of consummate professionals in this field too. Case in point, another family member’s chiropractor recommended some books for me to read. That’s an appropriate thing to do and in keeping with the requirements of professional ethics. There are miles of difference between “here’s an interesting book to read” and “I can cure your MS with supplements”. Now, I am aware of what my family member’s chiropractor was getting at with this advice. There is a protocol for MS treatment called the Coimbra Protocol. Dr. Coimbra claims to have successfully supressed disease activity using high dose Vitamin D. However, notably this treatment does not involve a standard dose of Vitamin D for all patients, and it involves careful monitoring by a physician trained in the Coimbra Protocol. I have heard anecdotal accounts of MS patients dying while attempting to implement the Coimbra Protocol on their own.
The only supplement that my neurologist has recommended that I take is 4,000 IU of Vitamin D per day. I follow this advice. I am taking a number of other supplements too, but the scientific evidence in support of them is shaky at best. In addition to Vitamin D, I take 1,000mg Vitamin C, 500mcg Vitamin B12, 1200-3600mg of Fish Oil, 600mg Calcium, 50mg Magnesium, 7.5mg Zinc, 1mg Copper, 1.8mg Manganese, 2500mcg Biotin, 15 IU Vitamin E, 1000mg Lion’s Mane Mushroom Extract, 1000-2000mg Psyllium Husk, and a 30 billion active cell Probiotic. Quite the cocktail! Am I confident that any of these supplements will help my MS or my health in general? Not really. My neurologist says that apart from the Vitamin D, he’s not confident that any of the rest of it will do anything for me. However, he also says that my current cocktail isn’t likely to do me any harm apart from lightening my wallet some. He has advised me against taking Echinacea or Golden Seal (herbal remedies that I have, in the past, taken during cold and flu season to try to stay healthy), as both are intended to boost your immune system, and the problem with MS is an overactive and confused immune system. He advised that there’s no evidence that it will harm or help, but because logic dictates that it could amp up an already hyperactive immune system, it’s probably best avoided.
I talked to my neurologist about Lion’s Mane Mushroom supplement specifically. This one is a little out there for me and I wanted to make sure that I wasn’t taking something that could do harm. I had found a rat study that I felt provided some evidence for its use. Those who know me well know that I used to work in a rat lab at Western University in my undergraduate days. The gist of the study was that researchers inflicted a crush injury to the peroneal nerve of the rats and then compared a control group to groups treated with an extract of Lion’s Mane Mushroom fruiting bodies. They found statistically significant differences in the recovery between one of the treatment groups and the control group. Now, obviously, rats are not humans, crush injuries are not the same as MS attack injuries, and peripheral nerves are not the same as the nerves of the central nervous system. So, does this study imply that taking a Lion’s Mane Mushroom supplement will help to remyelinate past damage from MS? No. What the study does is provide some support for the claims that the supplement companies make about the remyelinating potential of Lion’s Mane Mushroom supplements. Lion’s Mane is an edible mushroom that has been consumed for thousands of years, so I felt like it was unlikely to do any harm. My neurologist confirmed that he had no concerns about me using Lion’s Mane Mushroom supplements, but he doesn’t expect it to do anything other than relieve my bank account of some funds.
Lion’s Mane Mushroom fruiting body in the wild.
I have been experiencing hair loss since I stopped nursing my son when he turned 18 months old. Kesimpta is known to cause hair loss in some patients. As a result, I decided to add the Biotin supplement to my regimen. I do think that my hair loss has slowed down considerably since I started taking it, so that supplement will likely be sticking around. Will it help my MS? No idea. However, it’s worth the cost to slow down my hair loss and I do think that it is helping with that.
I have been considering adding a Coenzyme Q10 supplement to my regimen. However, I haven’t satisfied myself on the appropriate dose just yet. For now, I am trying to eat more foods rich in Coenzyme Q10, like organ meat, fatty fish, and cruciferous vegetables like broccoli, cauliflower, and brussels sprouts. I think that organ meat is disgusting, so this has definitely been a challenge for me.
I’m still figuring out my diet and supplement regimen. I will never know whether any of them had any effect, or if they did which ones had the effect. It feels like I’m taking shots in the dark.
