Adding a piece(s) to the puzzle

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So I’ve moved recently. For the past 3 years I’ve been living in Whitehorse, Yukon Territory, Canada. My family has recently moved though, back down ‘south’ to the province I was born and raised in, British Columbia (Vernon – the heart of the Okanagan to be be exact). With this move, I’ve had access to more specialists, and I did not let a moment go by before starting to dig deeper into my symptoms. Why you may ask?

One of the many amazing things about the AI protocol, is that if you are on it for a long enough period of time, you may find that your healing plateau’s. That you just stop getting ‘better’. And this leaves you puzzled…what have I done wrong? What has changed? Did I miss something? And rationally, it makes you dig a little deeper.

This happened to me. Around month 8 or 9 into the AI protocol, it was apparent that even though my health had changed radically (I was sleeping again, I was maintaining a good weight, my brain fog was gone (mostly), the Raynauds was greatly improved, sugar cravings were gone, the afternoon sugar slumps gone, and the list goes on…) there were still things that remained. The psoriasis was not only still there, it would still flare. The chronic morning cough I’ve had for years…still there. Food sensitivities, still there. So it became clear to me, that something was still holding me back. But what?

Then the testing began. I won’t go into the details of allll the appointments with allll of the doctors as there have been many. But to date, this is what we have found:

1) Lyme Disease. A controversial disease with a controversial diagnosis, controversial testing, and controversial co-infections. Especially if you live in Canada. And don’t even get me started with the controversial treatment. This one deserves it’s own post at a later date so for now, I will move on.

2) A lung infection. An xray revealed inflammation and a culture has detected a mycobacteria. The same genus of bacteria that causes TB and Leprosy but thank goodness I don’t have either of those (further testing ruled those out). But I do have one of the other 100+ options. So then it was another waiting game…the culture had to grow enough so a species could be identified, which can sometimes take up to 4 months or so. This diagnosis clearly fits in my symptoms list and I’m curious if this might have been my ‘trigger’ to set my AI diseases in progress, all those years ago? Or, even more intriguing, is this just one more piece of the puzzle? Fast forward to the culture results which turned out to be MAC, or mycobacterial avium complex. Usually not an issue for anyone with a strong immune system but clearly, that is not the case with me. The next step is to determine if we are going to treat with conventional medicines (aka antibiotics). The treatment is not fun nor easy apparently (a course 3-4 antibiotics for up to a year potentially. Clearly, this does not excite me especially after spending almost an entire year now at restoring my gut health. The thought of now destroying it makes me sad and worried. But…it’s too soon to say. I am waiting for a further test, a CT scan, to determine just how extensive this infection is. Then it will be determined: to treat or not to treat.

3) An abdominal murmur. An ultrasound hasn’t been able to give us any further information as to the source of this. So the testing and digging with this still continues and will also get covered in the same CT scan as mentioned above.

4) Anemia. Not a shocker I guess since it’s nutrient deficiency that got me where I am to begin with. So when I hear that I still have a ‘deficiency’ somewhere on a blood test, it doesn’t alarm me as I’m aware I havn’t healed yet. When I do, I suspect this may correct itself but in the meantime, it fits with my symptoms. So this is where those other lifestyle factors that go along with this protocol (ie: choosing the right type of exercise) come into play. And really… it further allows me to enjoy all the meat I’ve been eating!

There are more tests results pending and I’m sure more testing to come as well. But I’m a few steps closer in my hunt for a cause of my health decline, which finally, after all these years, feels very very good.

I also need to emphasize this – never stop being a health advocate for yourself. Even though I did persist over the last many years to ask questions and ask for specific testing which mostly got refused, I never gave up. I knew that there was a piece that we were all missing and thankfully, I have now found a health care team that has finally agreed with me. If it were not for this pushing and persistence though, I may have never received the diagnosis that I have thus far. And I truly believe that my health would have continued to have suffered for it. Trust yourself to be the one to know your body the best!

 

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The Autoimmune Protocol aka as AIPaleo

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This journey has led me to something called the Autoimmune (AI) Protocol or AIPaleo. And simply put, this just means I need to take care that I don’t eat anything that can cause an immune response all the while working on my diet and lifestyle choices so I can heal my leaky gut. Remember my immune system is already on overdrive, so it’s important for me to do everything I can to not trigger it any further. What I have learned though is it’s not only the diet part that’s important, but those other lifestyle factors (stress management, sleep, etc) that play a big, if not bigger, role in my overall health and healing. Those by the way have proven WAY waaay harder to implement than the diet! You may never guess it but making a daily constant effort to ensure your not only getting the correct type but also correct amount of exercise, ensuring you get adequate amounts of sleep, ensuring that you are managing your stress….all of these are what I am continuing to struggle with implementing. The diet, for me, is turning out to be the easy part!

Now let me clarify. There is nothing easy about this way of eating. I say above that it’s the ‘easy part’ only in relation to the other lifestyle factors that I find so challenging. Being on the autoimmune protocol is far from easy….at least in the beginning anyway. What I have learned from experience though is that over time, it becomes such a way of life that you can’t imagine going back to how you ate before. An awesome quote that was shared was: “it’s only hard until it becomes routine” (kudos to The Paleo Mom for that one.)

So what is the Autoimmune Protocol? It’s an elimination diet in it’s simplest terms. It’s eliminating all of the most commonly known food allergens, as well as foods that can cause gut dysbiosis (this is where your gut bacteria are in the wrong numbers or in the wrong location), that can contribute to a leaky gut, that can cause a hormone imbalance or that can cause that inflammation or immune response in your body. Not only is it an elimination diet though, but it urges just as strongly the inclusion of nutrient dense foods that you need to ADD into your daily diet as well.

One thing that is commonly overlooked is that if you are dealing with a leaky gut which has progressed into autoimmune disease(s), you are most likely dealing with a massive nutrient deficiency (a major player in the development of these diseases in the first place and something that I have been working hard at correcting.) So not only focusing on what to exclude, but also what to include, is key to correcting those deficiencies and truly finding healing.

Want to see where I learned about the details of the Autoimmune Protocol? Check out this post here from the Paleo Mom, whom I cannot recommend enough for her scientific based explanations about the protocol and lifestyle factors that go with it.

 

What went wrong

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Where did things start to go wrong? I’m not 100% sure what my trigger(s) may have been yet, but what I do know is that my gut plays a big role in my health and my dis-ease.

One of the reasons that things started to unravel for me was due to something called intestinal permeability or ‘leaky gut’. It is just as it’s name implies. The spaces in between the cells lining your gut become…well, leaky. They start to allow things such as proteins and pathogens, that were never meant to pass through in the first place, to enter your body and start wreaking havoc with your immune system. All you have to do it google ‘leaky gut’ and you will get loads of information about the physiology on how this manifests but two of my favourite resources are Chris Kresser and The Paleo Mom. They write in detail about this here and here.

So backing up a little bit, what you need to know is that in order to get an autoimmune disease in the first place, you must have the trifecta of the following:

1)   You need to have a genetic link to develop autoimmune disease. Know anyone in your family that may have: arthritis, allergies, cancer, diabetes, eczema, psoriasis, schizophrenia, Graves Disease, Addisons Disease, Celiac Disease, contact dermatitis, Crohn’s Disease, Gastritis, Hashimoto’s, MS, Ulcerative Colitis, etc?  The list is long and getting longer. A great post to check out would be this one here describing not only the more commonly known AI diseases, but some surprising ones as well. This genetic link plays a key role in developing any autoimmune disease to begin with, but not as much as one might think. It actually only factors for about 1/3 of your susceptibility.

2)   An environmental trigger. So this could be anything ranging from infections, toxins, hormones, or just plain old bad luck.

3)   Diet and lifestyle factors – and their contributions to you developing a leaky gut.

An important thing to note is that once you develop an autoimmune disease, you can never truly ‘cure’ it. Once your body has learned to attack itself, it does not forget this. But you can lessen your symptoms or even put your disease into remission.

So back to the gut. Your body and more specifically your immune system, due to it’s leaky gut and passing of proteins or toxins from your gut into your blood stream, starts to get confused. It’s ability to tell the difference between what is foreign and what is actually your own body (self), starts to fail and you literally start attacking your own cells, a process called molecular mimicry. As this progresses you start to develop specific symptoms as the damage caused to your cells, tissues and organs from the constant attacks, starts to build. And why do some develop one autoimmune disease over another? How come you don’t necessary end up with the same AI issues as say your Mom and/or your Dad had? Well this is the fun part – it’s all random. Luck of the draw. Fluke. Whatever you want to call it!

So while the diseases/symptoms may all be different, as you can see from the list above, the route cause of them all is the same.

 

The start of my journey

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I ended up here because I am fighting illness, and I am trying to not only understand the root of the illness but am also trying to prevent its progression (and with some luck see relief in my symptoms!) And I wanted to share my journey. But how did it all begin?

For me, it was about  7-8 years ago (so 2006 ish or so – very hard to determine as my initial symptoms were all so vague) when things just started to seemingly ‘fall apart’. It started with one symptom which turned to two and then five and before I knew it, I was going into my doctors office with a list a mile long trying to figure out why my body was spontaneously de-combusting.

Between the starting point in 2006 ish and the spring of 2013, the years were spent chasing symptoms and specialists (and alternative therapies  – some of which I would rather soon forget) who never really had any answers for me. They did however have many suggestions of medications that they would have liked me to try, which I pretty much resisted across the board.

Then on April 1st, 2013 – I embarked on the real journey. The journey of truly learning about my autoimmune diseases and how to find relief from them. I started on the Autoimmune Protocol and that is when, finally, I started to see and feel some change.

To date, I have been officially diagnosed with 2 autoimmune conditions: Psoriasis and Raynaud’s syndrome. I suspect that there might be something else going on as well, and that has been part of my goal – uncover what might be missing. But what could that be?

There might be a 3rd, as of yet undiagnosed AI disease, which would put me into a special category of having MAS (multiple autoimmune syndrome). Read more about this here. I say I ‘suspect’ as no 3rd issue has been diagnosed to date but once you get one autoimmune condition, the likelihood of developing another one (or more) is very high unless you can intervene and stop the progression. And with MAS, one autoimmune disease is almost always skin related.

Or there may be something else holding me back from healing further? Perhaps an infection (viral, bacterial, parasitic?) These would certainly fit with my work history (I’m a registered Animal Health Technologist and have worked in facilities from coast to coast – New York, Seattle and Vancouver) or my travel history (which up until I had kids was extensive!)

If you were to look at me, you wouldn’t say that I look ‘sick’. My friend and health guru over at Alt-ternative Autoimmune writes a great post about this here. If one were to look at me, what you would see is the psoriasis, and if you were lucky enough to be around when it hits, bone white fingers or toes from the Raynaud’s. You would certainly know me to always be cold and have a serious intolerance of lower temps and windy days. But you would never be able to see the havoc that was/is brewing inside my body.

That long list of symptoms I referred to earlier included about 30+  fun filled mysteries that could never be explained away. They wax and wane and appear to sometimes fade away but come back with a vengeance when I least expect it. Some examples include:

Brain Fog

Blood sugar dis-regulation

Dizziness/Vertigo

Deteriorating eyesight

Fatigue/Exhaustion

SADD

Revolving allergy symptoms (to jewellery, dental fillings, food, etc)

Extreme susceptibility to colds and sinus infections

Heart palpitations

Chronic cough

Digestive issues

Peeling of entire regions of skin (thumbs in particular)

Insomnia and/or inability to fall back to sleep

Difficulties with concentration, reading and speaking

Anxiety

And of course, the Psoriasis and Raynaud’s

And the list goes on and on…..

Up until I started on the AI protocol, I had resolved to the fact that since my overall health was deteriorating at such a rapid pace, I might not be able to remain a functioning mother to my two boys (ages 6 and 3 at the time). Most days at that point were very difficult to get through truly feeling good and the bad ones far out weighed the good.

That is until I started to put the all pieces ‘together’, instead of trying to take them all apart. I’ve always known and believed that our bodies are not made up of different systems that work entirely on their own accord. Instead, if one thing goes down, it more often than not will take a host of other things down with it. It wasn’t until I had this light bulb moment AND started digging a little bit deeper, did I truly understand that my body wasn’t just spontaneously imploding on itself but rather it was fighting against an illness, that started many years ago, and was progressing to the point of starting to take ‘things down’ with it. Now I have managed to gain control of not only my health but my families as well. I have become my/our biggest health advocate and have spent endless hours coming up with answers to many of my/our health related questions.

This is why I am here. To tell my story in an attempt to share some valuable information that may help someone else gain back some of the control they feel they have lost. One of the worst things one of my specialists ever said to me was: “There is nothing you can do about this. You need to resign to the fact that this will be your life”. I will never regret not heeding that advice.