I’ve written a lot now about my health journey this year, where a rare auto-immune disease almost killed me, crippled me, put my family through hell, and how I’ve spent over a year trying to get my life back together. This has been a frightening but motivating journey for me.
Many questions have hounded me over these long, trying months: What happened? How did it happen? Why did it happen to me? How do I prevent it from happening again? How can I help my friends and family avoid similarly debilitating illnesses?
I refuse to believe some diagnoses that I was just unlucky. There must be more than that. So I’ve been engrossing self at my medical records, medical textbooks, journals, studies, research, and expert opinion. So I’ve put together this post about what I think happened to me, and guidance to help you and your loved ones from suffering as I did.
I certainly Do NOT claim to be an expert on this topic, nor any sort of authority, so please do not take my interpretation as gospel.
What happened to me? Months after I was discharged from hospital, my neurologist went through all my test and scans thoroughly and found the name for what fell me: Transverse Myelitis (TM). It’s a very rare auto-immune neurological illness where my own immune system mistakenly attacked the myelin sheath around the spinal cord and brain stem causing a loss of nerve signal control. It’s very similar to the slightly less-rare Guillain-Barré syndrome (GBS). Another report called it meningococcal encephalitis. One of my doctors said it didn’t really matter what you call it; I had a rare auto-immune neurological illness and the treatments were pretty much the same.
But let’s go back a little bit: What is an auto-immune illness? It’s not HIV or AIDS; that’s where the immune system is suppressed or destroyed. It’s almost the opposite. The wonderfully advanced, complicated, sophisticated, automatic system that protects us from pathogens, harmful bacteria, and infections, somehow starts attacking the healthy tissues of the human body. It attacks the very body that it is meant to protect.
One of the books I’ve read recently is “The Autoimmune Epidemic” by Donna Jackson Nakazawa. Her book, like several others I’ve read, collect evidence about the growing auto-immune disease problem, the potential causes, and reason why western medicine has been slow to catch up. She suggests that for most of the 20th century, modern medicine did not believe that the immune system could harm its host. In the early 1900’s, immunologist and Nobel laureate Paul Ehrlich published the theory of “horror autotoxicus” when put into medical dogma that it was impossible for the immune system to harm the body. It is becoming increasingly clear that this is not true.
I had/have transverse myelitis (TM), which is very rare, but there are many, many other auto-immune illnesses, and if they do have a similar cause, represent a significant portion of ALL illnesses plaguing humanity. Here is an incomplete list of some autoimmune illnesses:
- Neurological: Guillain-Barré Syndrome (GBS), encephalitis, myosititis, myasthenia gravis, and multiple sclerosis (MS).
- Thyroid: Hashimoto’s disease, thyroiditis, and Graves’s disease
- Digestive: Crohn’s disease, ulcerative colitis, celiac, inflammatory bowel disease, and type-1 diabetes
- Muscles: Rheumatoid arthritis, polymyalgia rheumatica
- Resperatory: Fibromyalgia, wegener’s granulomatosis
- Skin: psoriasis, scleroderma
- Blood: Leukemia, lupus
There’s even talk that COVID-19 is triggering auto-immune illnesses. In fact, Grammy-winning artist Christopher Cross recently acquired GBS because of COVID-19!
Not all are auto-immune illnesses are immediately fatal, but certainly debilitating, and unfortunately not yet well understood. Data collection from the John Hopkins Hospital assert autoimmune disease affects 23.5 million Americans. That makes it more common than cancer and just a little less common that heart disease.
QUIS CUSTODIET IPSOS CUSTODES?
Before I start talking how the immune system goes awry, I’ll briefly describe how it should work, in a very simplified way. I’m going to put some term in “quotes” because I am going to grossly oversimplify, and broadly categorize some of these very complicated functions.
The immune system is probably the most complicated system in the human body. It automatically “detects” and “reacts” to harmful pathogens, harmful bacteria, and/or other infections. It consists of over a hundred different kinds of cells, dozens of enzymes and other chemicals, and also relies on millions of beneficial bacteria that live in our digestive system and bloodstream.
One of the immune systems responses to an infection is called inflammation. This is actually a collection of responses where the local blood vessels and capillaries dilate, temperature increases, and all sorts of chemicals and “infection-fighting” cells make their way to the infection site. And “signals” are sent for “reinforcements” so the body makes more cells and chemical to keep fighting the infection. Eventually, a “message” is sent by “regulatory” elements that the fight is over. Then the body “remembers” what worked so that it can use the same techniques again. So, inflammation usually helpful albeit uncomfortable, unless the “target” isn’t actually sick.
Imagine a fire truck hosing water on a house that is on fire: The process is destructive and damaging, but preferable to letting the fire spread. But, imagine the horror if a perfectly fine house was being deluged by a fire hose! That situation is analogous to an unwelcome auto-immune response.
So, what causes the immune system to cause an auto-immune response? It’s a LONG story and not well understood yet. The body reacts to an infection or mock infection like vaccine. Then somehow the immune system gets “confused.” The confused immune system then starts attacking something else.
So, here’s another grossly oversimplified analogy: Imagine the immune system is like a security team. Someone on the team spots suspicious characters wearing a green vests and calls the rest of the team to help stop them. However, imagine the security team just finished a double shift, their coffee has run out, or for some other reason they aren’t at 100%. The security team might miss these intruders in the green vests. Or, worse, in their confusion, start apprehending anyone and everyone wearing green! This is where the immune system is mistakenly targeting the wrong, “innocent” cells.
There are “regulatory” cells that should keep this from happening. Imagine the shift supervisor of the security team that notices that innocent people wearing green are being targeted. This supervisor would “straighten thing out”. Or, when the suspicious fellows in the green vests are gone, the supervisor could tell the team they don’t need to search for them anymore. If these “regulatory” cells where they aren’t working properly or aren’t there at all, the risk if an auto-immune illness increases significantly.
But what causes the immune system to get confused? That part is really complicated and not well understood. From this point forward, the information I’m going to present is much more speculative, theoretical and hypothetical.
Genetics plays a role. And the existing state of your immune system and its “history” is part of the story too. But since we don’t choose our genes or all of our infections over our lifetime, it’s hard to know how that contributes.
A carcinogen is the catch-all term for something that can contribute to the risk of cancer. In Donna Jackson Nakazawa’s book “The Autoimmune Epidemic” she coins the term “autogen” to categorize factors that can contribute to an auto-immune illness. There are a lot of potential autogens, but few, if any have been definitively confirmed.
- Leaky Gut
Dr. Myers’ book also goes on to explain ways to reverse autoimmune disease:
- Heal your gut
- Remove gluten, grain, and legumes from your diet
- Test for heavy metals and mycotoxins
- Find and treat infections
- Manage your stress
Each of the above could be a long and detailed post, and if there is interest I can publish more about them and my interpretations of them.
I highly recommend anyone interested to read Dr. Amy Myers’ “The Autoimmune Solution” as a guide to treating and preventing auto-immune illnesses. Where Nazakawa’s “The Autoimmune Epidemic” reads like punchy, depressing headline news, Myers’ “The Autoimmune Solution” is like an uplifting infomercial. I can almost hear the “but wait, there’s more!” It even has meal plans, supplement guides, and recipes!
FOR THE ANTI-VAXXER CROWD
So, could a flu shot or other vaccine trigger an auto-immune illness? Yes, the CDC confirms it. In fact, the detailed product monograph for a common brand of flu shot explicitly lists Guillain-Barre Syndrome and other “immune system disorders” as possible side effects.
But, a stomach bug can also cause an auto-immune illness. So could a bacteria on a fruit or vegetable that wasn’t washed thoroughly. And so could someone sneezing on you. Or mould in that old office or house. Or a pathogen in the water. In fact, there are so many potential triggers for an auto-immune illness that it seems like the risk from a vaccine is rather small. And considering that the flu causes significantly more deaths per year than autoimmune disease, avoiding flu shots for this reason isn’t very convincing.
One of my many doctors was an infectious diseases specialist. I told him how I had two stomach flu’s in the month before my auto-immune illness. In his follow-up, he said that he has colloquially noted a large correlation between stomach bugs preceding auto-immune neurological disorders. I did a little internet digging and I don’t think it’s just a coincidence.
I had a test done on my own digestive system, and found at least two undesirable bacteria in my GI tract: The most interesting bacteria of note were prevotella spp and fusobacterium spp. There is quite a lot of recent literature linking these two microbial communities to inflammatory and auto-immune illnesses. And more research continuing. I’m not even going to begin trying to explain these articles, but there are a lot of them, and they are peer reviewed and highly cited.
How did these bacterial get there? I don’t know. They might have been there in minute quantities all my life. Or from something I ate or drank at some point. They may have lay dormant for years. Then, when my immune system was suppressed from stress, or poor diet, or toxins, perhaps they had a chance to multiply and cause havoc. My immune system did its job and responded to this or some other infection. Regrettably, it seems my immune system got confused and also attacked something else: My brain stem.
This is the working theory I’ve come to. It’s pretty shaky and makes quite a few leaps of fuzzy logic. Maybe in 20, 30… 50 years, this will be as well-understood as cancer. But for now, this is my working theory. And at least I have some direction of how to try to prevent it from happening to me again.
WHY ARE AUTO-IMMUNE DISEASES SO UNKNOWN?
So, why aren’t auto-immune diseases headline news? They are widespread, and quickly getting worse! I think there are a couple of reasons:
The first is that there isn’t really a dedicated field or “-ology” for auto-immune diseases. Until recently, the auto-immune diseases were treated by their respective specialties, for example Neurologists for GBS, and rheumatologist for lupus. Infectious disease specialists are starting to have specialized fields to study autoimmunity, but they are years behind what oncologists have done for cancer.
Another reason I suspect autoimmune diseases aren’t well know is that there haven’t been many lawsuits. We live in a litigious society, and business owners, chemical producers, and manufacturers are busy and don’t usually think about the their actions unless there are consequences. Lawsuits have made companies VERY aware of the consequences of carcinogenic products. WHMIS and GMS labels for potentially cancer-causing substances are rather ubiquitous. But, because the mechanisms of auto-immune illness are not well understood, and may involve many compounding factors, it’s hard for a suit to seek damages on a particular chemical or process.
I hope this post has raised awareness of auto-immune illnesses, and made you think about what you can do protect yourself and those you love. Years from now, we may have a much better understanding of this. But, at this point, this is what I know, and wanted to pass it on to all of you.