Monday, 27 January 2014

Treatment Update #1

So part of the reason I started this blog was so I'd be able to keep track of my treatment, changing protocols and symptoms, etc. etc. I was kind of doing this (to an extent) on my youtube videos but since i don't make them super consistently, it's hard to track progress that way. Hopefully i'll be able to update this blog at least once monthly with changes to my protocol and how i've been feeling etc.

Currently, I'm on a completely natural protocol. This was a personal choice, because i really do not feel that long term antibiotics would be beneficial in my particular case. I was sick for a very long time before I was diagnosed, and through my own research found that antibiotics worked better for people who started them within the first year or so of developing symptoms.

Another reason I've avoided them is the fact that a lot of my symptoms are GI related, and antibiotics are known to mess your your gut. I actually did spend a week on Biaxin and Amoxicillin last April, but all this did for me was send me to the ER with extreme symptoms and make me overall sicker. Some would argue this was just a herx, but even conventional LLMDs that are big on antibiotics tend to agree that herx reactions should NOT be so severe that you end up in the hospital. That is just too much stress on the body. And so, for me, it's 100% natural, at least for the time being.

My Current Protocol:

Chlorella (3 grams, 2x daily between meals)
Biopure CORE (1 cap daily, to be increased over time)
Metagenics Folapro (1/2 tab daily)
Hydroxy B12 (1000mcg daily)
Quercetin (500mg with breakfast)
Methionine 200 (1 cap, 2x daily)
Beyond Balance CLA-K (25 drops 2x daily)
Beyond Balance MC-BB-1 (20 drops 2x daily)
Beyond Balance Parazomin (20 drops 2x daily)
Dermaclear Herbal Tincture (1/2 tsp 2x daily)
HMF Intensive Probiotics (1 with dinner)
Digestive Enzymes (1 cap per meal)

Biopure NEXUS (3 times per week before bed)
Activated Charcoal (3 times per week before bed)
Natural Progesterone (days 14-28 of cycle)
Well Scent Watch Your Mouth (2 drops on toothbrush 2x daily)
Neti Pot with 1/2 tsp each sea salt, xylitol, baking soda (2x daily)
Biomat (at least 1 hour each day, sometimes more)
Dry Skin Brushing (daily)

Nutramedix Burbur (used as needed for herx reactions)
Pekana Big 3 Detox Kit (to start in next couple of weeks)

I will be seeing my LLND again in 2 weeks so my protocol will likely change a bit then! I will also be starting treatments with a machine called the AN-DI energetic corrector in February. This is a machine my Dr. brought back from Germany last month. There are apparently only 5 doctors in North America offering treatments with it, but they have seen tons of success in Europe using it to treat things like Lyme, autoimmune diseases and cancers. So I'm looking forwards to beginning treatments!

Thursday, 9 January 2014

10 Things To Know When Someone In Your Life Has Lyme

So someone you know is sick with Lyme disease. It could be a friend, a family member, a significant other or just an acquaintance. Whoever it is, you've got some questions.  Or maybe you don't, but you want a better idea of what is going on. I wrote this piece to hopefully provide some explanation as to what life is like with an invisible, chronic illness. Though every person's situation is unique, these points likely apply to many illnesses and not those i have personal experience with (Lyme and POTS).


1. Lyme disease is an invisible illness.

What does this mean? It means that when someone with Lyme is feeling absolutely horrible, they are likely looking no different on the outside than they do on one of their "really good days". This disease (usually) doesn't present itself with super obvious visible symptoms. Normally you won't see a Lyme patient with their legs wrapped up in casts or with huge bleeding gashes on their bodies. Our symptoms tend to be more internal. Things like extreme fatigue/weakness, joint and muscle pain, dizziness, nausea, anxiety and brain fog aren't necessarily easily detected just by looking at a person. It can be hard to understand how a person can be feeling so horrible when they look "fine". Often times, they even seem to be acting fine! Which brings us to point number 2.

2. Lyme patients quickly become amazing actors

Let me explain. When you're sick with a cold or a flu for a couple of days, maybe even a week, you likely spend that whole time in bed or on the couch, maybe complaining about how miserable you feel. Definitely not venturing out in public and likely not even leaving your bedroom. You probably tell your friends and family you'll see them when you're feeling better. You feel too horrible for company right now. Simple tasks like food preparation and household chores are put on hold. Basically, life is put on hold. Which is acceptable when it only happens for a week at a time, probably once or twice a year. Everyone gets sick, it's fine, it happens, it sucks, but life goes on.

When you have a chronic illness, you often wake up everyday feeling like you have a horrible flu and the worst hangover of your life all rolled into one dreadfully uncomfortable package. As easy as it would be to stay in bed and not talk to anyone or do anything, you know these symptoms aren't going to just disappear tomorrow or even next week. This means you try to push yourself as much as you can to do normal things. Some days you might not be able to push much more than making yourself dinner. Other days you might venture out to the store or to see a friend. Your friend might tell you how great you look. "You must be feeling better! You're out and about!" You're conversing and laughing and you look like you're feeling fine! Unfortunately a lot of the time, it's all an act. When you're chronically sick you learn pretty quickly that wallowing and complaining about symptoms and refusing company leads to a very lonely and isolated life. People quickly get tired of hearing you complain about how horrible you're feeling, and you quickly get tired of being stuck in bed with no company. So when you can, you get up, you go out, and you put on a show. You smile and you laugh and you act like you aren't feeling any pain or discomfort at all. It is difficult and heartbreaking to have to live your life "pretending". It's also extremely exhausting. And sometimes in the middle of this act symptoms get worse and you find it harder to appear normal. This often leads to point number 3.


3. Symptoms can come on slowly at times, but other times quickly and suddenly.

Sometimes, we are feeling okay and all of a sudden it seems like the floor has been ripped out from under us. We might need to sit or lie down immediately. We might even pass out. This can be confusing for people that aren't sick. Just a second ago we were okay. What happened? At times, symptoms really do come on very quickly. It's the nature of Lyme. It happens. Other times the person wasn't feeling well at all to begin with but was doing a pretty good job of acting fine (see point number 2). They might have been feeling pretty horrible, but not SO horrible that they couldn't fake feeling okay. Then, their symptoms got worse and it seems like they went from 0-10 in a few minutes. A lot of the time though, what is likely happening is they are going from a 7-8 out of 10 to a 10 out of 10 in pain/discomfort. They have just learned to hide the 7/10 well. 10/10 is much harder to hide, and quite frankly when you're in this much discomfort, acting fine takes a back seat to getting yourself and your body stabilized.


4. Lyme treatment requires a special diet.

When in treatment for Lyme disease there will likely be a laundry list of foods you need to avoid. If you've ever eaten with someone with Lyme, you've probably seen this first hand. Most of the time we need to adhere to a very strict, very healthy diet in order to limit inflammation and toxins in our bodies. We have enough of these to go around already from the Lyme and co-infections! Normally our diets consist of avoiding gluten, dairy, and sugar. Often times we have other sensitivities to add to the mix like soy, corn, eggs and nightshades. If it's annoying for you, take a moment to imagine how much more annoying it would be if you had to stick to this boring diet 24/7. Everyday. And be feeling like complete crap while doing it. Be thankful you're able to eat what you want and feel fine for the most part.

5. Lyme treatment causes something known as a "herxheimer reaction". 

Or a "herx" for short. Similar to how chemo makes a cancer patient feel worse, when someone with Lyme disease takes antibiotics, anti-microbials or anti parasitics that cause a large amount of die off, this releases a huge amount of toxins into the body. This basically results in all of our regular symptoms being amplified as it takes some work for our bodies to get rid of these newly circulating toxins. Often times our bodies are so overburdened that they are not efficient at detoxing these toxins well, so it's a difficult process, and definitely not an easy one to endure at all. Unfortunately, it is often necessary to push through this in order to make improvements.

6. Many Lyme patients are not well enough to go to school or work.

This doesn't make them lazy or unmotivated. When you are so sick that even simple tasks like showering and preparing meals is extremely difficult, school and work is out of the question. This is something I've dealt with personally, and even more so in the last year. I have had so many people tell me "You are so lucky! I wish I could stay home all day and sleep in and not go to work or school!" This literally makes me want to scream. I promise anyone who thinks it would be "fun" to be stuck at home chronically sick, without any obligations, is completely and totally wrong. Sure, maybe if you were feeling nothing more than a little under the weather, the first few weeks it would be nice to relax a bit. Then you'd probably go a little stir crazy. You'd be tired of boring daytime TV and hearing about everyone's eventful days out in the real world. You'd want social interaction. You'd want to leave your house! Now pile on top of that the fact that most of the time when someone with Lyme is stuck at home they aren't just feeling "slightly under the weather". They are feeling like death. Sometimes, the simple task of breathing feels impossible. This is honestly not an exaggeration. This kind of sick doesn't feel the same as a simple cold or flu. It feels like torture. Please do not minimize our suffering by calling us "lucky". Nothing could be further from the truth.

7. There is no "magic bullet" or quick fix for late stage Lyme disease.

You might be wondering why your loved one with chronic Lyme is STILL sick. I mean, it's been months, years even! Why isn't the treatment working? Shouldn't they be cured by now? The truth is there is no easy answer for those of us who have late stage Lyme. Things might have been much different for us had we been diagnosed and given proper treatment at the beginning of our illness, but the Lyme has now had months or years to run rampant throughout our bodies and it has no intention of leaving quietly or without a fight. I personally was sick for 8 years before I was diagnosed with late stage Lyme. I have been in treatment for about 9 months and have only seen minor improvements. But looking at the big picture, 9 months isn't such a long time when it took my body years to get to this state. Another thing that comes into play here is no one treatment will work for everyone. Each Lyme case is unique and will respond differently to different treatment options. Often times a Lyme patient will need to try several treatments, even several doctors or practitioners before they find one that allows them to make considerable gains. This process most definitely tests out patience. It might be testing yours, too. Again, it's important to remember that however frustrated you are getting with the lack of progress a friend or family member has had, your loved one is likely feeling 100 times more frustrated, and even disappointed in themselves for "not being better yet". Try to be patient and reassuring as staying hopeful and persevering when nothing seems to be working is difficult, but absolutely necessary.

8. Lyme disease treatment is extremely expensive, and likely not covered by insurance.

The problem with Lyme disease, is that standard treatment options are geared towards those that catch it within the first few weeks of symptoms. In most of these cases, a few weeks or few months of antibiotics are all that is needed to regain health. These short term treatments are usually covered by insurance. When Lyme disease becomes late stage however, treatment is much more complicated. A few weeks of antibiotics will not even come close to curing the patient. Furthermore there will likely also need to be adjunctive treatments added to the patient's protocol like vitamins, supplements and herbal remedies. When it comes to late stage Lyme we have to pull out all the stops to get better. Sometimes this means traveling to doctors on the other side of the continent, maybe even world. Or trying new cutting edge treatment options that are pricey and paid for out of pocket. This is a bit of a nightmare for us, as we already have the huge burden of failing health to carry, and don't need the added stress of coming up with enough money to get better. If you want to help your friend, offer to host a bake sale or fundraiser to help raise money for their treatments. It will probably mean more to them than you know.

9. Lyme disease can be extremely isolating.

When you're chronically sick, you often miss out on a whole lot. Little things like parties and get togethers. Big things like graduation and vacations. It's hard. It's heartbreaking. And it's difficult not to feel extremely alone at times. If you have someone with Lyme in your life you've likely witnessed them canceling plans because they were too sick to attend. This might have been annoying to you, but I can assure you they felt completely horrible about it and wish more than anything they didn't have to cancel on you. If you have a friend with Lyme offer to come over and visit them. Or pick up some groceries or Lyme-friendly take-out for them. Even come help them cook a few meals to make the next week easier. Help them advocate for better awareness so it's not such a struggle living with a disease so many know nothing about. Reach out to them. Try to put yourself in their position. Would you find it easier to have friends who tried to help or just ignored your situation completely? Maybe you're waiting to see them until they are feeling better. Unfortunately it could be a while. Make an effort to make it happen sooner rather than later. It will be appreciated. It will show your friend you are one of the few who doesn't abandon your loved ones when times get tough. That makes you a great friend and an amazing person. Hold that title proudly!

10. We are just regular people too, this can happen to anyone. Get informed and be compassionate.

Something I did before I got sick was take my health for granted. Sure, you hear about people getting cancer, getting scary rare diseases, going through tragedy etc. etc. But that kind of stuff just always happens to other people. Never to you, right? The truth is Lyme disease (and any chronic illness for that matter) can happen to anyone. No one is immune. Sometimes it's easier to just put this kind of stuff to the back of your mind and not think about it. That way you don't have to deal with it. But what happens if one day you find yourself or someone close to you suffering from chronic illness? Would you not want people to at least try to take the time to get informed, understand to the best of their ability, and do what they can to make it easier on you? Practice patience, compassion and empathy not just when it comes to dealing with the person you know that has Lyme, but in all aspects of your life. These traits are so important and when you have them you become an invaluable friend and person in people's lives.


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Wednesday, 8 January 2014

A (Not So) Brief History?

So before I post anything else, I thought it would be a good idea to give everyone a bit of a background on me, my life, and my health. I know all of us have our own individual stories and experiences when it comes to Lyme and chronic illness in general. It's funny though, when i read other people's stories, no matter how different their journey has been from mine, I can usually always relate and find similarities between theirs in my own. We're all going through this crazy journey individually and yet somehow we're all connected, and I find comfort in that.

So, where to begin?

Basically until I was 13 years old I lived a completely normal, and happy life. I went to school, was in girl guides, did swimming lessons and attended dance classes, was forced to go through piano lessons but eventually got out of them by throwing tantrums, and most of all, I was healthy. Health was something that never even crossed my mind, because it was just something i had always had. To give an idea of how "healthy" i was, i was only on antibiotics once the first 15 years of my life (for a minor ear infection), and one year I even won a "perfect attendance" award for never missing a day of class that year.

Then summer of 2003 I went on a 2 week vacation to New Brunswick with my family. During that time i developed a weird lacey rash all over my arms and legs. It got really itchy, and i felt generally unwell for the 2 weeks it lasted. I went to a few different doctors and even the ER as i was pretty uncomfortable, but no one could figure out what it was. Eventually, it went away on it's own, but we never really figured out the cause.

Soon though, i started to notice something was off with my health. I had developed a few random symptoms, the main ones being nausea and some dizziness/weakness. In the fall of 2003, going into grade 8 i found myself feeling sicker more often than usual. I had morning gym classes a few days a week and found myself getting dizzy and weak during and after class. Then i started just feeling weak and nauseous often. I started missing a couple days of school here and there. Still it wasn't enough for us to think much of it.

Then one day in February of 2004 i woke up in the middle of the night with horrible nausea and felt like i was about to pass out. I thought maybe i had the stomach flu. The nausea lasted a week, and then 2 weeks and then 2 months. I also had other symptoms. Dizziness, weakness, fatigue, some stomach pain, headaches, blacking out. I went through dozens of tests- x rays, blood tests, urine samples, ultrasounds, barium swallows, ECGs EKGs, endoscopies. And nothing was coming up. The doctors couldn't figure out what was wrong. The doctors told my parents and I that I was suffering from social anxiety, and I was afraid to go back to school. I was so upset. There was nothing I wanted more than to go back to school! I had always enjoyed school. I missed my classes. I missed my friends. I missed my LIFE!

I went through more tests and more false diagnosis' over the next year or so, and finally at the end of 2005 I had a tilt table test and was diagnosed with POTS, Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia. Although I was happy to have a name for what i was going through, I eventually learned that Dysautonomia is normally a secondary condition, meaning there is something that brings it on in the first place. One of these possibilities is Lyme Disease. My POTS specialist tested me for Lyme, but he wasn't an expert, and just did the standard Elisa test. It came back negative. We never thought anything of it again. We continued trying to treat the symptoms of my POTS with different medications without much success.

High school as a struggle. I tried to go to school full time at first. I wanted so badly to be able to sit through classes but by lunch i was always exhausted and had to come home to lie down. I missed too much school so i was forced to drop out of "regular" high school. I ended up getting a home tutor and registered for online courses. I went into school at lunch time to see my friends. I was grateful I was well enough to at least spend lunch hour with them. But by the end of the hour the weakness and nausea would set in and i'd be forced to go home to rest.

By the time it was time to start college I had really began to develop a passion for health and nutrition. I signed up for an online program that allowed me to take courses from home to become a Registered Holistic Nutritionist. To this day this is still such a passion of mine.

In 2012 though I was seeing small signs that my health was deteriorating more. I was finding myself feeling anxious often, which was never a symptom of mine. I was also noticing i was having "flares" of symptoms more often where I would be stuck in bed with the nausea and weakness. I was scared.  That is when i really started looking into the possibility  Late Stage Lyme Disease. The more I read about it the more I felt like it could be the missing puzzle piece for me. I was finally tested through Igenex Lab in 2012 and although my Western Blot test came back negative overall, my CD 57 was extremely low (31). Ny ND explained to my that because I was sick for so long, my immune system was shot. It was barely producing the antibodies anymore because it had all but given up. This is why she did the CD 57 test as well. This test is used because chronic lyme infection is the only known cause of a low CD 57. A normal result is between 100 and 200. Anything under 60 is indicative of chronic lyme. Mine score was 31. Between this, my symptoms and my health history my doctor diagnosed me with Late Stage Lyme Disease.

The diagnosis was bitter sweet for me. One one hand I was so grateful to know what had been causing all of my health problems for the past 8 years. But on the other hand I was scared as hell. Scared that i had this dangerous, potentially life threatening bacteria coursing through my blood and body. Scared that I now needed to go through treatment that, like chemo for a cancer patient, would make me feel worse long before it made me feel better. And scared that i wouldn't be able to handle the emotional and physical roller coaster that was ahead of me.

I spent the better part of 2012 researching. Lots and lots of researching. I quickly found that those that had been sick for years like me, seemed to benefit the most from natural antibiotics and healing modalities. Antibiotics did work for some, too. But it seemed more successful in those that had been sick 1-2 years or less. I decided that I needed to at least start with the natural route. My body was just too weak and too depleted to be able to take on strong antibiotics anyway at this point. I knew I needed to build it back up if that was ever going to be a part of my treatment protocol.

Unfortunately, in January of 2013, my health took a turn for the worse. I'm not really sure what the cause of this was, as at the time I hadn't made any huge changes. Maybe i was stress, or maybe it was just all the years of illness without treatment catching up with me, but all my symptoms got worse, and I seemed to develop a new one: horrible abdominal pain.

I've spent the last year in treatment for lyme disease as well as several co-infections including Babesia, Bartonella, Mycoplasma, and chronic Epstein Barr. I'm lucky enough to have support from my parents who have made several trips to the US with me, to see different doctors and practitioners to try to help me get my life back piece by piece. I have made some improvements. But so far they have been small. The 2 main things I have noticed are desperately needed weight gain, as well as a decrease in the horrible stomach pain. I still suffer from horrible nausea and weakness daily, some days worse than others, but unfortunately I didn't had any "good" days in 2013.

This year, I am determined to get my health back. I can honestly say 2013 was the worst year of my life. No one should have to suffer so intensely. And I'm glad that most will never know that kind of pain. But there is also a lot to be learned from suffering. And that is what I have to focus on during this journey.

I made this blog to document my life with Lyme and all the little aspects of my healing journey, I have posted Youtube videos in relation to my health for years, but at times i don't necessarily feel well enough to sit and talk in front of the camera. I still plan to make videos, but thought i would start a blog too, for myself and for anyone else who may find it helpful! My one wish for 2014 is that all of us suffering find our own paths to complete health and healing <3

-Shannon