Feeling a bit frustrated at the moment. On top of being in a long and chaotic flare with eruptions of different and some new symptoms throughout, I’m trying to go about life as “normally” as possible. Over the course of the last couple years I’ve become an avid researcher which, often times, can lead to serious frustration and sometimes feelings of hopelessness. I’m very well versed in Hashimoto’s Disease, Endometriosis, Fibromyalgia and Lupus SLE (which I’ve not been officially diagnosed with yet), but today I had looked into the CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis) part of my diagnosis. It’s very interesting material, although complicated in many ways, including a general consensus for diagnostic markers that the Docs can agree on. I always find it disturbing when the medical community is in this kind of divisive quandary because, ultimately, it’s us…the patients, who suffer. As if autoimmune patients don’t deal with enough already, between getting a doctor to take us seriously, to the lengthy process of getting sound and proper diagnosis, and the employers, co-workers, friends and family who lack compassion, due to their ignorance, and the shameful craziness we try to keep at bay by remaining positive…or at least faking it… On top of all that, we are dealing with chronic, debilitating pain, among a slew of other horrible symptoms, while fearing what new and devastating symptom might pop up today; like the horror music leading up to the terrible surprise of a scary clown faced jack in the box! It’s beyond exhausting.
The rabbit whole, that is “autoimmune disease”, leads us on a very complex and difficult journey, and there are many important decisions to be made along the way. During the most difficult times in the final couple years of my fire service career, seeing a therapist was crucial for me. I had to dive into myself and my psyche because I was so distraught by what was occurring to my body, my career and life, and I had zero control over any of it, which was very difficult for my type A, goal oriented, problem solving kind of personality. My therapist helped me acknowledge my feelings and decipher what was rational and what was not. There was a time I felt like giving up on pushing for some concrete answers and diagnosis, and he helped me to persevere. I don’t care how “strong” a support system you think you have, it’s wise to avail ourselves of as many resources as possible, and when there are emotions, feelings and fear involved, it’s good to have someone who is not emotionally invested, on such a personal level, as a sounding board and guide. There are also many wonderful forums through social media now that are made up of communities in broad terms, like Invisible Illness, or more specific, like Fibromyalgia. It’s so easy for us to feel alone, as these illnesses can be incredibly isolating. It’s important to realize that there are thousands upon thousands of people out there that are in a similar situation, many of whom are only in the beginning stages of their journey, and not even diagnosed yet. Reach out. Helping others has a profound way of soothing our own pain.
Pulling myself back in and onto the subject of research…I always kind of feel like I’m trying to unravel 15 or more sets of jumbled Christmas Lights, when I research. Terminology alone, has kept me busy. Thankfully, I’ve been in the body business my entire adult life. First in Fitness/Preventative, then Fire First Responder/Emergency, and that helps. I really do get tired of seeing; Cause Unknown and NO Known Cure, and no wonder it’s difficult to diagnose when so many of these diseases or syndromes have the same signs and symptoms. I will say that, for me, the “unknown cause” and “no known cure” statements are like holding up a big red cape to me. The fact that I’m 1/2 Irish, 1/2 Norwegian, and an Aries means I was born with horns. When someone tells me that something can’t be done or is impossible, I’ll be enjoying my victory dance, while their breath was wasted. As much as possible I try to live in the realm of possibility, rather than defeat.
So…what have I learned lately? That my gut instinct is pretty darn good. Obviously, I’m not an MD so what I go into next will largely be my personal experience and journey.
I’ve always felt that there is a viral connection with my immune issues. More specifically, Herpesviridae or the Herpes Virus. Even more specifically, to me, 3 of the 5 types of herpesviridae;
1. HS1-ORAL. Cold Sores on or around the mouth.
2. Varicella Zoster-
a. Childhood/Chickenpox b.Adult/Shingles
3. EBV Epstien Barr Virus aka/Mononucleosis
Once infected with any of these viruses, they remain in your body forever, and go into what’s called a latent phase. I’ll describe it like the virus is sleeping, and most of the time it’s never a big issue again, after the initial outbreak. However, for some of us unlucky souls, that’s the beginning of what will be many, many more related illnesses and outbreaks.
While many people have had chickenpox, it will never again be an issue, unless it rears its head as Shingles, during adulthood.
If you’re like me and get cold sores or fever blisters, you may not even remember the first time you had one. Often it’s passed by an infected family member giving us a hug or kiss. They are very contagious so it’s important to be mindful of that, if you do get them. In my experience, cold sores are a sure sign that my body is severely stressed and under attack. If I have multiple cold sores or if they are accompanied by canker sores (inside mouth) or sores in my nose, you can be sure that I’m feeling terrible. For me, any of these are always accompanied by swollen glands. Nowadays it’s not uncommon for cold sores to show up when I’m having a flare.
Interestingly enough, most people have EBV and don’t even know it. They may not have even come down with Mono, aka, The Kissing Disease. There is a blood test which can confirm whether you have it or not, but most people will never even have a need to know. If it reoccurs as Chronic EBV, it can be very serious, but I won’t go into that, as it’s irrelevant to what I’m talking about. EBV has been the center of attention for theories concerning autoimmune disease, which brings me to the next piece of the puzzle.
Molecular Mimicry. This is an extremely complex subject and I’ve poured over countless case studies, hypothesis and theories. Again, I’m going to use my own words and my own experience. I highly recommend looking up the term as connected to autoimmune issues. In my mind, I kind of view this as a, “which came first, the chicken or the egg” situation, because the answers may be in past generations. Molecular Mimicry is only a piece of this puzzle, albeit, an important one, I think.
So….here I have 3 herpes VIRUSES that remain in the body forever, after initial infection. Where do they live? Within our tissue, down to the molecular level. These buggers have learned how to blend so well that they resemble our healthy tissue. Now let’s say I did yard work and way overdid myself, skipped a meal, and didn’t sleep well that night. I have just laid a bunch of stress on my body in a bunch of different ways. The next day I go grocery shopping and am exposed to the common cold, which is also a virus. The next day I’m coughing and feeling fatigued, and now my immune system is sending in the troops to kill the cold virus I got.
It’s important to know that any sickness you get, like this cold, reactivates all of those latent or sleeping viruses, that will then activate the production of antibodies by your immune system, which then attacks the virus. The problem is that because those viruses have mimicked your healthy cells so well, in order to hide; now our soldiers start destroying some of the healthy cells and tissue. What’s even more amazing is that our immune systems are so smart and efficient that they have a memory, and as this war continues, what the soldiers once recognized as what it was defending, it now sees as the intruder. Hashimoto’s Disease is a perfect example. At one point my antibodies were so off the charts my Doc was surprised I wasn’t in a coma. My immune system will continue to destroy the healthy tissue till my thyroid is completely unfunctional. I’ve been on synthroid, a hormone replacement, since age 25; 20 years, and like so many others, will take it the rest of my life. EBV is, by some, believed to be the culprit, as some say it resembles thyroid molecules, so that’s where it likes to hide. This is only a theory.
I really recommend learning about the soldiers that make up our immune system and how it functions. I do believe in the power of intentions and gratitude, and for a long time I was angry with my body for betraying me. Especially since I always took care of it. I started using language like, my faulty immune system, or like I said, body betrayal. The fact of the matter is that neither one of those things are true. In fact my B cells, T cells and NK (natural killer) cells are doing their job just fine. It’s the intruders that need to go, which brings me to my final thoughts, for today. I happened to stumble across an interesting article about phase two of a clinical study involving the use of an antiviral drug to treat herpesviridae as a course of treatment for Fibromyalgia. I haven’t read the entire thing yet but I will tell you that before seeing this article I had already planned on asking my doctor to do an extended antiviral treatment for me, at my next visit. Not sure if she’ll go for it, but it’s worth a try to ask. When I saw this article I just heard, ding, ding, ding, and it confirmed that I’m on the right path of problem solving. My flares are very cyclical and occur with any kind of stress trigger, ranging from; lack of sleep, or missing a meal, to emotional sress or something as simple as allergies. Time to kick these not so latent intruders to the curb! I would love to give my immune system a break from working so hard, but they’re always on duty and I do appreciate that.
There is always hope. Never give up the good and worthy fight. We are stronger together. Keep on keepin on! Onward!