Saturday, 25 October 2014

Youtube Video (Part 2 of Update)




Part 2 to my last blog post. Explaining how i use my essential oils.

Tuesday, 21 October 2014

An Update On Treatments! Old & New!

Hi guys! Not really sure if anyone reads this anymore but for my own reference it's time for an update! So there have definitely been some changes over the past few months in regards to my treatments and how i've been feeling. I'm happy to say i've noticed some improvement in symptoms! The last 2 weeks of August while I was in Maine I had kind of noticed it, then it seemed i got worse for a week or so once back home, but by the end of September I seemed to be having more better days, and this month has also been sprinkled with better days here and there.

I can't tell you how encouraging this is, after being stuck at this standstill for so long, travelling to different states, trying everything under the sun and not feeling ANY different. I wish i could say that i'm feeling huge major improvements and i know for sure it's (fill in the blank) supplement that is doing it, but as you guys probably know if you're dealing with lyme, or any chronic illness, it's never black and white.

I CAN say that the one thing I HAVE done differently since mid August is I started using essential oils! If you're part of the lyme forums on facebook or even just do searched in google for lyme treatments, chances are you've come across essential oils at some point. I had several times and actually had some experience with essential oils in general because of my old etsy shop (i made naturally scented body butters, bath bombs, perfumes etc). But i never really used them medicinally, just for fun! In August after reading yet another story of a woman who recovered from late stage lyme using the oils, I decided to bite the bullet and purchase a kit from doterra. I will explain more how I use them and which ones i find helpful in my youtube video (will be posted tomorrow? maybe?). But i definitely am kind of addicted and can't wait to get more to try!

Another thing that's new! I went to a new practitioner who does something called B.I.E. It's a form of accupressure and was created to deal with allergies at first. But it's really just a way to bring the body back into homeostasis. My first appointment was at the beginning of October and it went well. My practitioner explained that my "polarity" is reversed. She said this is often the case with people who have chronic illnesses, and who have tried everything and nothing seems to be working (me!). When your polarity is reversed, your body looks as good things (mainly foods)  as a a threat, and it allows bad things (viruses, bacteria, etc) to stay.  She explained that we couldn't move forward with testing all the foods/substances and doing the corrections until this was fixed. So the last 3 supplements you see on the list below are from this practitioner and are supposed to help correct this, then i'll be starting the testing/ accupressure treatments.

As far as my herbal/homeopathic protocol goes, this is what I am currently on:

Some of my current daily supplements. Note the devil stress fomula looking all inconspicuous on the end.






















Tox-Ease GL (12 drop 2x daily)
Parazomin (12 drops 2x daily)
UNDA 243 (10 drops 2x daily)
Licorice Root Tincture (20 drops 2x daily - 250mg)
Chlorella (3 grams 2x daily)
Hydroxy B12 (1000mg once daily)
Folapro (half tab once daily)
Vitamin D (2000mg once daily)

Thymus/Echinacea (20 drops 2x daily)
Le Tonique (1 tbsp 2x daily)
*Stress  Fomula (1 tab 2x daily)

*This Stress formula and I are not friends. It's basically a b-complex, and for whatever reason my body hates b complex. This could very well be due to MTHFR issues (which i have) however EVERY practitioner I see tells me i test as needing some form of b-complex. SO for now i am taking half a tab for a few days then taking a week off. My symptoms just get worse and when it gets to the point where i can't eat because i'm so nauseous/weak I need to back off and do what is best for my body.

Alright I think that about sums it up for now! I will write again soon. Hopefully. Maybe. :)






Wednesday, 3 September 2014

Finally an update!

I haven't posted in forever! So decided it was time!

So I actually just got back from 2 weeks in Maine a couple days ago.  My family and I go almost every summer, and it's absolutely beautiful there. I was definitely worried this time though, as this was the first time I'd be going since my health went downhill a year and a half ago. Thankfully, I was able to do more than I thought i would. I definitely had days where i stayed home at our cottage all day, but I also had days where I was able to get out and go to the beach, out for dinner, or even shopping for an hour or two! The shopping especially surprised me, as I didn't think I'd be well enough for any at all. All this has kind of made me wonder if there really is a mold issue here at home that needs to be dealt with. The fact that I seemed to do better away from home is both encouraging and worrying. We have tested the house (using the ERMI mold test) and came up a bit above what is considered "safe" for that test. But, with all the research I've done, I haven't really been able to find anyone who got a score much lower than ours, and black mold (the really bad one) wasn't present in our testing so I just don't know.

Anyways, now i'm back home, still on a bunch of supplements/vitamins. Still trying desperately to get back some sort of "normal". I'll have a follow up appointment with my LLND in a week and see if she has any new ideas. I feel like I'm definitely thinking more and more about finding another doctor as well though, since i'm not making much progress with my current one (and have been with her for about 9 months now).

If anyone has experience with dealing with mold, especially in relation to Lyme, please feel free to contact me! Or if you have a super wonderful miracle worker doctor that is good with hard cases :) haha


Friday, 6 June 2014

DIY Tick Repellent

I know I haven't done a treatment update in forever (mostly because not much has changed!), but for now I wanted to share this super simple and all natural recipe for tick repellent! It's that time of year, and the BEST way to avoid dealing with the hell that is chronic lyme disease is to NOT GET BIT in the first place! There are a few options- bug sprays with Deet and/or Permethrin, essential oils, vinegar mixes etc. This recipe combines a few natural ingredients and is super simple to whip up!




You can also use other essential oils in this recipe, many do a good job at keeping bugs away. Rose Geranium is another great option for ticks! Because my dog is terrified of the spray bottle (he won't let me near him with it!) I just apply a drop of Rose Geranium oil to his back every morning.

Friday, 11 April 2014

DIY Laundry Detergent Powder!

So this is a super simple recipe for DIY laundry detergent. I've been using it for a few months and it works just as well as commercial detergent, is a fraction of the cost, and doesn't have all the horrible chemicals found in all the most popular brands.


RECIPE:

2 Cups Washing Soda
2 Cups Borax
2 Bars of any regular soap (I used Dr. Bronner's castile bar soap, but any soap will do!)
30 drops of essential oil of your choice (optional)

Grate the soap into a large container and add in the washing soda and borax and essential oils if desired! Simple as that! Use 2 tbsp per load in HE machines, or about 1/4 cup in older washing machines!


When it comes to fabric softener and dryer sheets, alternatives are definitely also encouraged. Did you know that the ingredients aren't even listed on these products?! You'll see something like “biodegradable softeners” or a similarly vague term. Yepp, legally manufacturers are not required to list ingredients on these products, yet they contain some of the most toxic ingredients in any hosuehold cleaners!

From the article "7 Reasons to Ditch Dryer Sheets" found HERE:

"Seven most common chemicals found in dryer sheets and their effect on the central nervous system:

1. Alpha-Terpineol causes central nervous system disorders. Can also cause loss of muscular coordination, central nervous system depression, and headache.

2. Benzyl Alcohol causes central nervous system disorders, headaches, nausea, vomiting, dizziness, central nervous system depression, and, in severe cases, death.

3. Camphor on the US EPA’s Hazardous Waste list. Central nervous system stimulant, causes dizziness, confusion, nausea, twitching muscles, and convulsions.

4. Chloroform on the EPA’s Hazardous Waste list. Neurotoxic and carcinogenic.

5. Ethyl Acetate on the EPA’s Hazardous Waste list. Narcotic. May cause headaches and narcosis (stupor).

6. Linalool causes central nervous system disorders. Narcotic. In studies of animals, it caused ataxic gait (loss of muscular coordination), reduced spontaneous motor activity, and depression.

7. Pentane causes headaches, nausea, vomiting, dizziness, drowsiness, and loss of consciousness. Repeated inhalation of vapours causes central nervous system depression."

Chloroform in my dryer sheets?! Uhhhh NO THANK YOU!

Instead of fabric softener I use 1/4 cup of vinegar (your clothes will NOT retain the smell). I just pour it into the fabric softener section of my washer.

Instead of dryer sheets I use an old cloth with about 5 drops of essential oil (this will also make your clothes smell pretty!), or aluminum foil balls (literally just scrunched up aluminum foil!). I don't have any issues with static when I do this, even when washing things like fleece blankets.


Thursday, 6 March 2014

Trying to pull myself out of herx hell...

Sooo i just wanted to update really quick (mostly for myself so i can keep track of this nonsense). I started on a bunch of new remedies a few weeks ago (like I mentioned in my last post). All seemed to be going well for the first few days and then i got hit with the worst herx ever. Horrible weakness, abdominal pain which had been pretty mild for the most part the last few months, and nausea so bad i was barely eating for over a week. Being that nauseous is always really scary for me because i'm so small as it is, i really can't afford to lose ANY weight.

Anyway I'm only now seeming to pull myself out of it (after stopping all my remedies and restarting on tiny itty bitty doses (i/e 1/2 a drop and 1 drop instead of 20 drops). But it was bad. Like super horrible/awful/hellish.

I did start the AN-DI treatments however (it was really a miracle i made it to my appointments because even standing/walking around the house was extremely difficult). I've had 4 treatments so far, and will be doing them twice a week all through March. Then I'll be taking a break from them (that's just how they work i guess?) for a month or so and go from there. I haven't felt any changes from them but i'm told it's not the kind of thing you feel instantly. It takes the body time to kind of harness the energy it gives and build itself back up.

So yeah. That's my quick update. I'm hoping the horrible herxing is over with and that my body will be okay with upping the doses of the new stuff eventually. For now I'm sticking with the baby doses and waiting to be sure I'm back to my baseline. Hopefully I will also start seeing some changes in the coming weeks with the AN-DI as well. I'll be sure to update about that in the coming weeks too!

Monday, 17 February 2014

Treatment Update #2! (Beyond Balance Remedies, Biofilms, AN-DI Machine)

This past Monday I had my monthly appointment with my LLND.  As far as my treatment goes, she thinks everything is basically on course. I haven't seen any major improvements yet, but through muscle testing she said she is seeing a difference in my body, and actually said my body was now strong enough that we could start working on biofilms.

For those that don't know what biofilms are, they are basically a thin protective covering that the lyme bacteria creates as a form of defense. This covering protects little colonies of bacteria, so that it is harder for treatments (i.e. antibiotics, herbs, etc.) to get at the bacteria. Once whatever antibiotics you are using take care of most of the bacteria that are just floating around unprotected, you may notice some symptoms getting better, even going away. Some people may even go into what they consider "remission". But the problem with this is, once the bacteria no longer feel threatened (i.e once you stop taking antibiotics or antimicrobials) they can emerge from this biofilm and wreak havoc all over again! Bacteria can lie dormant in biofilms for months to years. So not doing something to treat them is kind of a scary thought, as I'd prefer not to be a ticking time bomb if i ever do achieve remission!

There are a few different options for biofilm treatment. One of the most popular options includes systemic enzymes. Some of the more common ones are Nattokinase, Serrapeptase and Boluoke (Lumbrokinase). These enzymes are actually able to punch little holes in the biofilms, destroying them, and removing the bacteria's defense. For my treatment of biofilm I will be using a strong formula created by Beyond Balance called MC-BFM-1. This formula combines enzymes with a plant sterol found in Guggul. Because it is a strong formula, and we don't want to completely flood my body with bacteria, I am starting with just a sprinkle of a capsule twice daily.

In a week from today I will also be starting a new treatment! It's a machine called the AN-DI Energy Corrector. My LLND has just started using this machine in her office, and it comes highly recommended and is used extensively by doctors in Germany. There are only a handful of doctors in North America that own and use these machines (Dr. Klinghardt is one of them!) and now my doctor does too! If you'd like to read more about the AN-DI and how it works, you can do so here. My LLND has only been using this machine for a little over a month so far, and has said she has already seen such amazing improvements in her patients. One of her lyme patients, who has been suffering for 20 years, was actually discharged from her practice as he is doing amazing after 8 treatments. I will be doing 2 treatments a week for 1 month. And then will break for at least a month and discuss if further treatments would be of benefit.

Other than that, my treatment will remain mostly the same, although a few things have been switched up, to keep the bugs on their toes! My updated protocol is as follows:

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 Mc-BFM-1 (start with sprinkle, increase to 1 cap 2x daily)
Beyond Balance MC-BB-2 (increase to 20 drops 2x daily)
Beyond Balance ENL-BT-1 (increase to 20 drops 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)
Dry Skin Brushing (daily)

Nutramedix Burbur (used as needed for herx reactions)
Pekana Big 3 Detox Kit (used as needed for herx reactions)



Thursday, 6 February 2014

Update YouTube Video!

Hey guys! From now on whenever i make a new YouTube video i'll be posting it here on the blog too! Here's my most recent one:  Treating Lyme Disease Naturally (New Blog, Herxing, Supplements, LLND, AN-DI). Enjoy!


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