How to walk alongside someone with LYME (or chronic illness)

My friend Jess and I had a chat on this subject, and here is her blog for you to read what she wrote:
bloggingtheroadjesstravelled.com
She covers a majority of my thoughts, so I’ll keep this post very brief...I’ll write a few things on here though.

A few big things to remember are:

1. BELIEVE US. Especially when your illness is invisible, and in my case also under-recognized and misunderstood, it’s important that our loved ones don’t doubt us.  None of us chose to be sick, and we’re not making stuff up.

2. DON’T ASSUME.  Please don’t assume. Every human on the planet suffers in a unique way. So even if you have the same illness, or have similar symptoms, you may respond differently. Your safest bet, if you’re wondering about something, is to ask questions.

3. CHECK IN.  So many people are really good at texting and/or calling in a crisis, but not long term.  Yes it’s good to check up in a crisis, but often for someone battling a chronic illness, it’s  the daily battles which are the hardest. And when people don’t check in we can easily feel forgotten.

I’m going to leave it at that. But to read more, please do read Jess’s blog.

I’ve also included one more link from the mighty, which has a few more suggestions:
https://themighty.com/2017/03/lyme-disease-how-to-be-a-good-friend/

TREATMENT (part 2)

2 days ago I gave a bit of a history of my treatments. And today I will talk about: What exactly those treatments were,
what they were supposed to do, and
how my body felt during them. I’m not going to include all the details, so don’t hesitate to ask me questions.

1. The first thing after diagnosis that I started with was supplements. I took many vitamins, minerals, probiotics, proteins, and more. The idea with this was to try strengthen my body for the coming treatments. But the supplements did aggravate symptoms like nausea.
2. Next we wanted to do bio resonance treatment. The goal with that would be that one part of the machine reads the wave length of the bacteria, then the other part creates the exact opposite of the bacteria, thus neutralizing the bacteria, and eventually killing it.  However, I did not end up actually starting this treatment, because my case was too complex for that doctor... I think especially because of my psychiatric symptoms.
3. A couple months later, I began antibiotics. This was horrendous. I tried a range of different ones (orally and through IV), but I kept getting sicker. I got to the point where a nurse would come daily to do the infusion. This made all of my symptoms worse. I had a lot of what they call herxheimer reactions. This happens any time you attack Lyme bacteria.  At the same time it nearly killed my gut.

We stopped antibiotic treatments for a 4 month period of time (during my 2 month hospital stay, and for a while after).

4. In the end of this past January I started treatment in Edmonton. This consisted of Hyperbaric oxygen treatment, ozone therapy, more supplements, dietary advice, induced fevers, enemas, detox baths, and more. I spent over 100 hours total in the oxygen chamber (100% pure oxygen). The idea behind this is that Lyme bacteria is anaerobic and therefore it can’t handle any oxygen saturated environment. When I was sitting in the chamber it kind of felt like I was constantly taking off in a airplane. I had to constantly be equalizing the pressure in my ears, by chewing, yawning, blowing my nose, etc. And I always came out feeling exhausted. Because my body would have to work so hard to process that much oxygen. A majority of the other treatments I did were to help my body prep for, and cope with the herxheimers. And to detox the waste and dead bacteria in me.
5. Since I’ve been home I continue on many of the detoxing treatment, as well as diet and supplements.

If you want greater detail on any of it then you can send me a message. But I currently don’t have the mental capacity to explain it all.

Here are just a few pictures of me in treatment:

The firest 4 are of my antibiotics through IV and PICC

A couple of my supplements

The next 2 are of the hyperbaric chamber

Next is the infrared sauna

Next is the infrared lamp with a caster oil pack to detox my liver

Next is the PEMF...an electromagnetic frequency to message and open up my lymphatic system

Next is a picture of the enema prep

The final 2 are from my daily fever inductions (to trick my body into fighting)

Treatment (part 1)

Today I’ll give an overview of the treatments I’ve done. Tomorrow I’ll go more in depth, talk about what I’m still doing, and give recommendations.

Also, I will not mention any of my Doctors by name due to the controversy surrounding the treatment of Lyme. However if you want to know more you can contact me directly.

To be honest, when I first found out I had Lyme I really had no idea what I was up against, so I didn’t really panic. In fact, my first response was relief....because I FINALLY had an answer to many of my questions at the time. 

At the beginning of my diagnosis we took things slow. I started lots of supplements and natural things to try and boost my immune system for what lay ahead. 

My specialist at the time, who diagnosed me, was unprepared to put his practice at risk, so he couldn’t do any treatments beyond that. So he gave me a couple options. 

1. I could meet with a Doctor in upstate New York (5 hours from me), who would do a very intense regiment of antibiotics. 

2. I could meet with a naturopathic doctor in Mississauga (5 hours from me). And he would to Bio-resonance treatment.

We were nervous about the intensity of the antibiotics, and so we decided to give the other option a try.

A couple weeks later I went down to meet the naturopathic doctor. He had given up his medical licence in ordering continue treating Lyme. The first appointment consisted entirely of him getting to know me and my history, and him explaining his treatment. 

The second appointment we had another meeting, and his staff ran all kinds of tests. These tests determined a lot of food sensitivities, Lyme bacteria, what co-infections I had, the amount of parasites, mold sensitivity, environmental sensitivities, chemical sensitivities, and more.

The third appointment consisted of another meeting as well as a couple more tests. At this appointment he determined that I was too complex to treat, largely due to my psychiatric symptoms, and so I went home.  

A week later I met an environmental doctor in Ottawa. She ran more tests, including blood work...which she sent to the best labs in the world (California and Germany), so that she could begin my antibiotics. She ran some more food and environmental tests too.

Shortly after I began antibiotics, orally and intravenously. I also began a supplement and vitamin IV 3x per week. The IVs were supposed to help me actually absorb the good stuff (since I was not absorbing orally). My first vitamin IV was extremely painful...for a couple reasons:

1. My muscles were SO deficient in magnesium, that they were literally grabbing at the magnesium.

2. I am allergic to nickel (which is in the regular needles).

We didn’t confirm the nickel allergy until the second IV. At which point we switched to special catheter needless....which are much thicker, and harder to put in. Ouch.

They made my acupuncture and dry needling (which I was still doing for my concussion) seem like a piece of cake.n

For the next number of months we played around with lots of different antibiotics and also vitamin and supplement mixes on top. My veins were becoming so terrible. Some were actually hiding, and some collapse or became badly scarred. 

This is when we began the lengthy battle to get a PICC line placed.

Technically, if you are getting IVs for any more than 10 days you should have a PICC. But due the controversy of my case (Lyme) this was very hard to actually accomplish. Doctors in Ottawa flat out refused to do it for me. Months later a Doctor in Perth Ontario finally agreed to do it. 

This made my, now daily, IVs much more bearable. But by the time I got it I was very near to death’s door. None of the treatments were helping, and I was only getting sicker and sicker. My body was so inflamed that it was no longer even trying to fight the bacteria anymore. I was also loosing weight at a crazy speed due to both Lyme and my eating disorder, so I ended up in the hospital. 

I fought daily for the first week just to keep my PICC in, because I had fought so so hard to get it in the first place. But once the hospital’s extremely faulty test results came in they wouldn’t let me continue my antibiotics. And so I agreed to get it taken out (much to their absolute delight). Since they were refusing antibiotics anyway it actually posed a risk for infection (which would go directly to my heart). So they removed it. At the time that PICC was my only sign of hope, because to me it signified a battle I had won (getting it in), and it meant treatment. But the hospital didn’t care, and they were not sensitive to my feelings. The nurse taking it out was way too eager. I was devastated.

For the next few months i was in the hospital and didn’t do any Lyme treatment. 

In the end of November 2017 they discharged me. And I went deeper and deeper into despair. It truly felt like I had exhausted all of my options. 

In mid January I was planning to meet another natural type Doctor in Toronto, but at the last minute was advised against that, so I didn’t end up going.

At the end of January I flew with my Dad to Edmonton where I jumped right into an extremely intense treatment regiment.

The unique part of this treatment was the Hyperbaric oxygen chamber. I also took a ton of supplements, and did many other treatments to try and combat some of the intense flares caused by the intense battle going on in my body.

Now I’m in Ottawa doing lots of detox, supplements, and psychiatric related treatments.

As I said at the beginning of this post, tomorrow I will talk about what exactly my treatments were, and what they did.

So I’ll leave it at that for now.

Spoonie

I often use the hashtags #spoonie or #spooniecommuity, and today I will explain what that means.

Once there was a girl who had lupus. She managed to get out to a restaurant with a friend one evening. Her friend was struggling to understand her lack of energy, so she wanted to explain it. The first object she saw was a spoon, so she used that in her analogy: “Imagine everyone starts each day with 12 spoons; a healthy person uses less spoons to complete any activity, while a sick person uses up spoons a lot faster. So for example a healthy person might use 1/4-1/2 a spoon for a shower, but a sick person may use up 3 spoons doing that exact thing. So a sick person uses up their spoons much faster...they are called spoonies = in need of spoons (energy).”

This applies to any chronic illness. I am a spoonie with Lyme, Mental illness, among other things.

The spoonie community is a very good community to be a part of.  And I use the hashtags so I can find other people and vice versa.

 Last night in my live I touched on it briefly, but it is very important for me to be in it because, although I have many friends, having friends with chronic illness brings understanding on a whole new level.

The reality is, unless you’ve got it (in my case Lyme), you don’t get it. And that is OK. We don’t expect everyone to understand.

Through this community I have had the chance to meet many others who have a number of my diagnosis. And I can talk with them, ask questions, and relate to them. Seeing so many others live daily with chronic illness, and somehow get through pushes me to do the same.

I don’t want this to sound like I don’t value your friendship, because I love all of you. I just tell you because this is something that helps me.

Day 14

So today, as a pause from some of the heavier material I’ve been sharing lately, I decided to share a few things that people have done with and for me that have stuck with me.  My goal is to thank a few people each Monday (so don’t worry if you’re not mentioned today).

I’ll start with my family.

Well I actually don’t know where to start with them. They’ve been supporting me since day 1.  A couple things though:

   Dad- Spending over half of the 2 months with me in Edmonton, paying the medical bills (and my phone bill while I don’t have an income), driving me, advocating for me and more.

   Mom- Being willing to try SO MANY ways to cook for my diet, picking up my prescriptions, being my chauffeur, and many more things.

   Ronda- Phone chats, advocating for me, and loving me.

   Naomi- Chats on my bed, fellow Lyme Warrior (so we can relate on a few points), and rocking some of my clothes better than me.

   Anna-  talking late at night, listening, loving, and supporting me.

   Olivia-  daily hangouts, always being willing to help me, and brighten my days.

   Callum- snuggling with me every single day, after school tea in my room, reading to me, doing your homework on my bed every weekend, making art for me, and giving lots of hugs and kisses.

Branches friends- They are willing to have a majority of the get-togethers at my house. They often even sit in my room with me❤️ Every time they are over I feel so glad they are in my life.

Jess- Phone chats, visits, sleep overs when I’m really struggling (on short notice), many gifts (from Seth too). You are a treasure.

Samantha- always down to chat (phone or text), giving thoughtful gifts, cooking me food, saving my life, and loving me.

Mikaela- texting me every day at 11:11 (both times)...if we’re to busy to have a conversation we still send a quick heart, visiting, phone calls, and more

Hospital Visits

I’m going to include a **trigger warning** in this post as well, since I will talk about some of the medical abuse I experienced (in pretty graphic detail...since I don’t know how else to go about it).

Sorry I’m writing another really heavy post. I promise tomorrow I’ll try lighten things up on here.

On the one hand this blog post makes me feel physically sick to my stomach just writing. But on the other hand I need to get it out of my system...plus, much of this is probably relatable for my chronic illness friends.....especially those who have illnesses that doctors don’t understand or believe.

Over the years I can’t count how many times I’ve had to call an ambulance or visit the ER.  Both before and after the Lyme diagnosis they never got to the bottom of what was wrong with me. I won’t tell about each trip.....I’ll just share the overnight ones and a couple others.

Probably the worst hospital trip in my entire history was at the beginning of May 2017, after my 2nd suicide attempt. My parents and one of my sisters were with me. We chose to go to a hospital that we knew was small (because that meant basically no wait time). Upon arrival a nurse who was processing me said “the doctor on duty tonight is amazing! You’ll love him”.  At this point I was still in shock and feeling extremely scared . The doctor walks in and starts asking the standard questions. I was in tears and super shaky. Then this happened:

 DOCTOR: What’s going on (and what led to tonight)?

ME: I have a lot of physical problems that have been getting worse, so mentally I’m feeling really bad.

DOCTOR: What’s wrong with you?

ME: I have post concussion syndrome....

DOCTOR interrupts me: This community I live in is very into hockey. And I’ve seen many concussions. I don’t think you’re dealing with one.  What else is wrong?

ME (not up for arguing since I was still in a crisis mindset): I also have scoliosis....

DOCTOR: I’ve seen this lots of times too, but it doesn’t look like you have that.

ME: I also have Lyme.

DOCTOR: No you don’t. *pause* So What’s actually going on with you?

At this point I was nearly speechless. But still too shaky and weepy to argue.

ME: I don’t know

DOCTOR (changes topic): What did you do tonight (what method did you use).

 ***I won’t share what I answered***

DOCTOR: “Oh that wouldn’t have worked anyway”.  He then went on to say: “there’s not much I can do for you tonight. If you’ve had depression and other problems for as long as you say, then why did you come in? Just deal with things how you have in the past”. He went on to make me and my mom feel terrible and guilty.

At the time I had been too in shock (from my attempt) to be able to argue with him, and he should have known that I was extremely vulnerable that night. But he didn’t know me at all so I hated how he kept denying my DIAGNOSED problems. Also, even if my method wouldn’t have worked, just the fact that I had been in that mindset should have been reason enough for him to have concern. Also,  the last part (about him wondering why I came in)... The reason I went in was because I WASN’T able to deal with my problems the right way.

He sent me home with a sedative. The next morning I went to my family doctor who prescribed an anti depressant, without warning me of side affects (I was still to distracted to think of asking).

One week later I was home alone and I made my next attempt. In the middle of it I sent some strange text (I don’t remember it) to a friend. She thought it was odd so she immediately called me. I could hardly breathe, but told her what was happening. She told me to keep breathing. Then she hung up so she could call 911 and my mom. A few seconds later the 911 operator called me so she could stay on the line with me until help arrived. The police and paramedics arrived a minute later. And then my mom showed up. The police were amazingly calm and tried to comfort my mom. I went into the hospital, where I spent the next 8 days. Most of that stay is blocked from my memory.

But what I do remember is that they did not believe the Lyme diagnosis. On one night when I was having serious chest pain I overheard the nurses talking and saying “don’t worry about her, I think she’s just making stuff up”.

Similar things were said and assumed the rest of that week.  I faked being better so they would discharge me (and so I could go down to Toronto to have a meeting with a Lyme literate specialist there. However, I was too unwell to travel. Plus at that point the specialist decided I was to complicated for him to treat.

That specialist then called a colleague in Ottawa. Normally she would have had a 2+ year wait list. But (due to my severity) she saw me 1 week later.

I spent months doing treatments with her. Including IV (and oral) antibiotics, IV vitamins, and much more.

Over that Summer and fall I visited the ER many times, for various Lyme flare ups and symptoms. And I met with multiple specialists in Ottawa.

Finally in the very beginning of October my health was SO low. My eating disorder was at its worst, my mind was terrible, and my body was not fighting. I had just met with another specialist, with whom I had another one of my worst doctor experiences. He was the first doctor I actually yelled at.  He didn’t believe the Lyme at all, and made both me and my parents feel awful and stupid.

After that appointment I made my 5th suicide attempt. My dad drove me to the ER where they very quickly admitted me back in to the psych ward, This stay was 2 months long. I had many really rough days in here. Once when they found me on the floor in my room (after me passing out) they said “you know you shouldn’t be on the floor right?”  They also refused to give me medication for pain, because they thought it was all in my head....except for 2 times they found me curled up on the bathroom floor in sheer agony. And any time they caught me self harming they would yell at me instead of giving me alternative coping skills.

None of them believed me. I will spare most of the details from that stay though.

The only positives out of my 2 stays in the psych ward were the other patients. None of them were “crazy”. There’s just a lot of hurt and pain in this world. So having the other patients understand and love me is what kept me going in those admissions.

Suicide & Support

**trigger warning**
I am going to be talking specifically about suicide today. So if you are in a vulnerable spot or are in the depths of mental illness yourself, or just aren’t up for reading a post like this; I just want to let you know that I’ll get pretty real and raw today... and I understand if you can’t read this.














I’ve tried to avoid talking about this deep and dark side of my mental illness, but this is part of my chronic illness (for which I am trying to raise awareness).

This topic is actually one of my main motivators for raising Lyme awareness.
Among people with Lyme there are a higher number of deaths by suicide than the number of people who get help/timely treatment. This is so utterly tragic.
I think that a huge reason for these statistics is a lack of education/awareness. Because if there was enough education there would be enough funding and treatment options.

And now my experience:

I have attempted suicide on 5 different occasions. And contemplated, planned, and even wished for (or dreamed of) many times. I have a voice in my head. And not just my thoughts as voices... but a distinct voice (male). During each of my attempts he was SCREAMING at me that I had to die, I had to end my pain, I was a burden and people would be much better if I were gone. I had so little hope, and I truly believed that there was only one solution. I was not getting proper treatment from doctors. And some Lyme literate doctors didn’t know how to treat me BECAUSE of my mental illness.

Each time was like an out of body experience. I would turn into this nasty, manipulative, and scary person.

I will spare you any more details. And I’ll move to the second part of this post: support.

Let me start by saying that if it wasn’t for the support I have I’m sure I wouldn’t be here. A number of people literally saved my life, wether that was sitting by my bedside ensuring that the voice didn’t win, or sensing that (after reading the text I sent) something was off (I was also home alone) so you called me... and then an ambulance to come get me to the hospital
in time.

Whenever I start forgetting the support I have,  I just have to remember people like that, who are there every step.

You may be wondering why I felt like sharing all that. It’s simple. You guys are the reason I’m still here. And I want to raise awareness, with the hope that in the future (once many more are educated) other people will be able to have treatment and support for their darkest days.

What can you do about this?
Believe us. Listen. Educate yourself. Continue to love us, just as you would with anyone else.

Lyme, Chronic Fatigue, and Sleep

Lyme has a HUGE impact on sleep.

I’ve always been a light sleeper. But I started noticing consistent problems after my second concussion (May 2016).  I would fall asleep on the way to work, and then fall asleep on the way home. I never had energy.

Then things changed (not the exhaustion part). I stopped being able to sleep almost completely.

I started taking lots of natural sleep remedies, and did things like making sure I didn’t fall asleep during the day, in hopes that I would be tired enough to sleep at night. This didn’t really make much difference. My doctor advised that instead of making myself stay awake during the day, I had to sleep whenever I finally crashed...no matter what time it was.

As my brain got sicker (Lyme, concussion, and PTSD), the little sleep I did manage was filled with increasingly terrible dreams. This led to the point that I was actually terrified to sleep.

**trigger warning**
I’ll share a couple examples of my nightmares.
1. A recurring theme in my dreams was that something terrible would happen (ex. being under attack) and I would be responsible for making sure everyone was okay. But I was never successful. People would die if I didn’t save them on time.
2. Another theme would be having to watch people endure terrible torture and suffering, and be unable to save them.
3. I also had dreams where really bad or scary things happened to me, and I would be helpless and alone.
4. I had many many dreams where I had to re-live all the doctor abuse I’ve been through.
5. I would dream about right before the concussion, and re-live the concussion that changed my life, and ultimately led to my Lyme diagnosis.

I’ve had many others, but this gives you an idea.

A number of things contributed to my lack of sleep....including, but not limited to:

1. Lyme bacteria in my brain
2. Concussions
3. My brain doesn’t want to slow down
4. Anxiety
5. Pain

Roughly 9 months ago I began seeing my current psychiatrist. After he began getting to know me and my case he recommended some sleeping pills, as well as a pill that is supposed to help take away the nightmares. He’s recommended it for many of his patients who have PTSD.

I still take all of those pills today. And although they help a little with the nightmares, lack of sleep is an ongoing problem. Even when I have the strongest sleep pill (I’m only allowed that twice a week).

I get a few hours here and there. Most mornings I am very groggy (sometimes all day)....especially after taking the strong pill.

And every day I am exhausted. This is definitely one of the worst Lyme symptoms. Because it affects every aspect of my life. And it affects my coping abilities too. It’s hard also because I know how important sleep is for the healing process.

Mental illness & Lyme (part 1)

Today I will attempt to give you a brief overview of my mental illnesses. I don’t share with the intent of receiving your pity, I share simply because I seek to be more understood.

And I want to add that all of these illnesses are real in my case, but they are all hugely affected by the Lyme in my brain....which is why I am sharing about them this month.

**TRIGGER WARNING**
Since this is about mental illness I’ll include that warning.





Depression is something I’ve struggled with for years before my Lyme diagnosis. Although it is it’s own illness, I know that when I’m physically doing worse, because of my other issues, I struggle more with mental pain.  So many doctors have told me that this is my “only” problem, or that all my problems are “just” in my head.
First, hypothetically speaking, even if it was “just” in my head that doesn’t make it any less real. If the brain sends out pain messages to your body, YOUR PAIN IS REAL!!
Second, I have been diagnosed with Lyme through multiple tests...so they need to get their facts straight.

Abuse from doctors (and other medical staff), is a huge contributing factor in my PTSD (I’ll talk about being in the hospital tomorrow).  But I also struggle with PTSD due to being chronically ill.  I am at war with my body every single day. The nightmares I have almost every night are also related to this. Additionally, I also struggle with a severe phobia of bugs....because a bug made me this sick.

I know that it’s not “cool” to talk about porn. Because PORN IS NOT COOL! However my past struggle with that has led to a very skewed body image, which I think is a large contributing factor in my eating disorder. Thankfully I have recovered from the porn addiction. However, the damage is still affecting me.
A few other likely factors in my eating disorder would be: fear of food, due to a messed up digestive system. And a strong desire to have some sense of control over an area of my life.

I also struggle with pretty serious anxiety. Wether that be fear, phobias, panic attacks, etc.
I also struggle with pretty bad social anxiety. This includes things like: feeling physically ill before visitors (no matter how much I love them), fear of what others will think of me in public settings and more.

I also struggle with self harming. Negative body image, depression, and generally low self esteem (and self worth) are contributing factors.

I have also struggled with suicidal thoughts and attempts. Chronic illness is so SO hard, and there have been times where I don’t see or feel much hope.

Lastly, I deal with OCD. Not just wanting organization. But also a fixation on numbers. Everything has to be done a certain number of times or else it feels very incomplete.


I’m going to stop now, but I’ll go into a few of the topics more in depth throughout the week.

A day in the life...

I had plans for my blog post, but decided to write something different instead. Because today was the perfect example of “a day in the life of someone who is chronically ill”.

Last night I didn’t sleep. But this morning I mustered up the strength to put on nice clothes (and even mascara), and went to the National prayer breakfast with my dad. He made me ‘Sjanie friendly’ food in advance, and when we got there he pushed me in my walker for most of the parts that required walking ❤️  I truly am glad I could go. It was one of those mornings where I kept thinking: chronic illness isn’t winning.

Then I got home. I had the house to myself, so I laid on a couch on the main level of the house so I wouldn’t be trapped upstairs (I can’t do stairs on my own). The exhaustion set in and my existing nausea got much worse. So I tried to rest. I finally fell asleep for an hour. But I had such vivid and violent dreams. I woke up with a start because the phone was ringing. My body was drenched in sweat. And I was very disoriented.  Once I became more aware of my surroundings I could breath a little easier.

When my family got home they helped me up to my bed, where I am now. I’m dealing with terrible pressure in my head, and a lot of pain.  

This is the reality of chronic illness though. We push ourselves to try and “live” a little, but we will pay for it after.  I won’t deny that the morning was worth it.... but I still struggle with not being able to function like a “normal” person.

Day 7: Tests

Today I will share some of the testing I did to get a Lyme diagnosis; and what I think about them.

Quick disclaimer: I’m talking about my diagnosis process, and recommendations.....but that doesn’t mean that my way is the only way.

1. My first test was the Horowitz Lyme-MSIDS questionnaire
2. General blood work
3. Bio-resonance
4. Specific blood work (from specific labs)

I want to mention that when it comes to getting tested for Lyme, blood work is unreliable. At best it’s less than 50% accurate. So if I were you I would start with the Horowitz questionnaire. If that is showing positive then I would try blood work next. I sent my blood work to labs in Germany and California which are the best labs in the world. They do more thorough testing than any Canadian labs.

In Canada so many tests are false negatives or very weak positives (usually these are counted as negative too). So it’s important to not rely solely on those results.

And I did the following test multiple times to check what exactly I’m dealing with, the severity, and the damage.
1. Urine/stool tests
2. Lumbar puncture (spine and brain related)
3. ECG (heart related)
4. EKG (heart related)
5. MRI. (brain and neck related)
6. CT scan (brain related)
7. Ultrasounds

I’m pretty sure I did some other tests too, only I can’t remember.

If you, or someone you love is concerned you may have Lyme but don’t know what steps to take, you are welcome to speak with me. I am NOT a doctor, but I can at least give you support.

Day 6

I promised to be honest on here, so here goes: I didn’t feel like writing today. 

I sometimes feel so absorbed in all things Lyme related, and wish it never became part of my life. I spend so much time wondering why this happened to me (I still haven’t found an answer)...I never asked to become so educated on this disease.

But then the motivation kicks back in. Although I didn’t ask for this, the fact is, I know lots about Lyme. 
I can so easily become upset about people’s ignorance, and how that directly affects me. And so much of it is purely because people don’t know. 

I can’t change or educate everyone. But I can share what I know in the hopes that there will be more awareness, and more understanding for future sufferers.

Tomorrow I’ll get back to normal posting.

Lyme Facts

Today, instead of words from me, I am sharing some Lyme facts.  These are not fun to read through (because Lyme isn’t fun), but they are realistic.

Symptoms: 

Co-infections:

And some facts:

Less common symptoms

When I was thinking about how I should write this post I decided that the best way would be to speak openly and straight forward.  

I decided to write on this subject because these don’t get talked about often, and yet sometimes these are the incredibly debilitating symptoms that keep us from leading ‘normal’ lives.

1. Full body itching.  Most likely brought on by mast cell activation syndrome....but sometimes it comes out of nowhere. It is often worse at night for me.

2. Mood swings.  This is a really hard one. I can go from calm to angry very quick. And find myself agitated pretty easily. I sometimes feel as though I have little control over this aspect of my life.

3. Hormones.  My periods are a mess. There’s nothing regular about them. And I’ve had it multiple times where I was convinced I would die from the pain.

4. Digestive system.  My digestive system is out of whack. There are a lot of things (including raw vegetables) that my body doesn’t quite know how to deal with. I also struggle with constipation...but the enema does prevent me from getting backed up (that’s not the only purpose of the enema though :p)

5. Under active bladder.   Pretty self explanatory. Basically I’m not getting very many signals to go....so if I didn’t force myself I could go over a day without having to pee.

6. Brain fog.  This can just be simple things like forgetting numbers, or saying the wrong words. But it can also lead to panic attacks and anxiety simply because I can’t carry conversations, and feel like all my knowledge and brains are gone.

7. Poor circulation.  This means my feet are always cold. I also get purple (with white spots) blotches on all my extremities. (This condition is called raynauds).

8. Nightmares.  I won’t go into detail on this one, but basically the very little sleep I do end up getting is often filled with nightmares that leave me feeling very drained.

I’ve also included a few links of symptom lists from other “Lymies”

https://themighty.com/2018/03/embarrassing-lyme-disease-symptoms/

https://themighty.com/2018/05/lyme-disease-symptoms-photos/

Signs, Symptoms, and a Story

Before you read on I just want to mention that I will be talking about signs and symptoms based off of my experience. But among Lyme warriors this can range drastically.

Growing up my symptoms were back pain (scoliosis), frequent headaches, and ear and throat infections (due to an already weaker immune system).  For the most part these were not debilitating, and I could lead a fairly busy “normal” life.

Here’s a little look into my life: I was homeschooled for all my years of school. One of the better parts of this was the flexibility in my schedule. It left room for things like piano lessons, swimming, and ballet, just to name a few.
Looking back there were already signs and symptoms then. Such as hyper flexibility (from a connective tissue disorder), shaky hands, OCD, headaches, back pain, and some other things here and there.

At around the age of (roughly) 14 I became actively involved in the prolife movement working with organizations like We Need a Law, Ottawa Against Abortion, and The Canadian Centre for Bio-Ethical Reform (CCBR). I had a lot of incredible experiences with this work, one of the most memorable ones was traveling across the Country during the 2015 election spreading the prolife message.
Over the years I also took a crash course with CCBR and joined the staff of Ottawa Against Abortion, doing activism.
The biggest health struggles during this period were back pain, 2 concussions (I did this work until my 2016 concussion), headaches, depression (and self harm on a couple occasions) and the beginnings of an eating disorder.....I’ll do a post later about mental illnesses in my life.

I also had the opportunity to travel to Australia and Papua New Guinea. I spent months there visiting relatives, and to help look after my cousins (surrounding the birth of the newest child).  This was a very eye opening experience.  If you’d like you can take a look at my old travel blog to see some pictures from that trip: sjaniebeyondtheshire.blogspot.ca

In late fall of 2015 I began working at homesense as a sales associate, merchandiser, cashier, and more (they trained me in most areas of the store). I had some amazing coworkers there which made the 3 hour (1.5 each way) commute worth it.
While working here I started to experience more symptoms. Especially fatigue, headaches, back pain, depression (which would also lead to self harm).
And it was at work that I had my second concussion which triggered the sudden awakening of any hidden Lyme and co infections. 4 days before this concussion I was working 2 full time jobs and helping plan my sister’s wedding as her maid of honour. 3 days before the concussion I was standing up beside my sister on an incredibly special day in her life. Going from all this busyness directly into a health spiral was very hard.

Although the concussion (and it’s wide range of symptoms) finally brought Lyme to the surface, it also complicated the diagnosis process. For a long time we thought we were ‘only’ dealing with a concussion and post concussion syndrome.
These were some of my concussion/Lyme symptoms. I had head pain, head pressure, very tight and sore neck (sometimes they struggled to even do acupuncture because the needle simply couldn’t push through the muscles), light sensitivity, migraines, nausea, digestive problems, full body weakness, insomnia, back pain, muscle pain (all over), bone pain....especially in arms and legs, joint pain, and joint dislocation (especially ribs).  I also noticed a worsening of all my mental illness...depression, anxiety, PTSD, OCD, self harm, also thoughts and actions related to suicide.

I will leave it at that for now. But I will talk more about my mental illnesses next week. And tomorrow I’ll be talking about some of the less mentioned, or awkward, symptoms of Lyme disease.

The spread of Lyme and prevention

Today’s blog post is set up a little differently.  I’m going to do a myth vs fact post related to how you can get Lyme.  And then I will finish by sharing just a few ways to aid in the prevention of Lyme.

Myth: Only ticks can give you Lyme
Fact:  You can also get Lyme from other bugs as mosquitoes and spiders (and some others).  Studies have also proven that it can be sexually transmitted and passed on in-utero.

Myth: Ticks can only give you Lyme
Fact: Ticks can also spread many other diseases and/or co-infections. Some of the more common co-infections are: Babesia, Bartonella, Ehrlichia, Mycoplasma, Rocky Mountain Spotted Fever, Anaplasma, and Tularemia (there are more, but that gives you an idea).

Myth: If you’ve been bitten by a tick, you have Lyme disease
Fact: Not all ticks carry the Lyme-spreading bacterium Borrelia burgdorferi (sorry for the long medical terminology), and not all bug- carrying ticks transmit Lyme disease.

Myth: If you’ve been bitten by a Lyme carrier you will get Lyme disease
Fact: in some cases you may be bitten and not get sick at all, other times you are briefly (or very briefly) ill, while other times it may become chronic (some of it depends on how healthy you are, or how strong your immune system is).

This link debunks 10 more common myths
https://globallymealliance.org/10-top-myths-about-lyme-disease/

PREVENTION

Here are just a couple super simple ways to be cautious and aid in prevention.

1. Wear bug repellent.
2. Especially while walking, wear clothing like pants and socks. (Also an interesting fact: Ticks don’t bite through nylons).
3. Keep up with healthy eating and exercise, the healthier your body is, the easier it can protect you against illnesses like Lyme.
4. When possible, avoid wooded areas or tall grass.
5. After being outside check yourself (or your kids) for ticks. Some of there favourite spots are in your hair/hairline, behind your ears, back of knees....etc.

Here’s one more article from GLA about prevention: https://globallymealliance.org/education-awareness/be-tick-aware/

My Story Part 1

It’s hard to know where to begin.  

I can’t tell you when Lyme entered my life, because I don’t remember being bitten.  The more we look back over my health history, the more we are led to believe it began at a very early age.  Lyme bacteria is very good at hiding and laying dormant for long periods of time.  At the age of 5 I began to have back problems which led to a diagnosis of scoliosis at age 6. Since then I’ve kept up (on and off) with physio and chiropractic care.  The degree of my back was not very serious, so it always surprised the doctors how much it affected me (probably Lyme already).  In early 2014 I had very serious pain which meant being bedridden for about a month. Those were very dark days for me.  We found a specialist an hour out of Ottawa. He did all kinds of work on my back, and he also regularly adjusted my skull (the pieces would get jammed, and need to be seperated). Sometimes I would have bruises on my forehead from things moving around up there.

Besides that I did struggle with lots of headaches and got ear and throat infections fairly often....But these didn’t seem like unusual problems, so life went on.

On May 27th, 2016, I suffered my second concussion when a heavy metal shelf came loose and banged my head at work. Initially I didn’t black out or vomit, but I did have a bad headache.  The next day I went to work thinking it was just a headache.  I became very sick while working, so on the way home I went to a walk in clinic. They right away diagnosed me with a concussion, and wrote me a note to take a few days off work.  And I honestly thought that would be enough (since I had recovered very quick from my concussion a couple years before). After the week was up I tried go back, but each time I tried I got so sick (including blacking out on multiple occasions).  Then I was diagnosed with post concussion syndrome. The next few months were a bit of a blur. I managed to counsel at a summer camp for 1 week that summer.  At the camp I was bitten by another bug which I thought was a spider (but it could have been another tick). I immediately started experiencing severe neck pain. When I got home I continued getting sicker and sicker. I kept trying to go back to work, but got to the point where I was daily calling my family to pick me up early.  I clearly remember the times where my manager (at homesense) would take a pillow off the sales floor and put it under his desk so I had a quiet and dark place away from my co-workers and customers....and I would wait there until my family would pick me up.  Finally, I stopped going to work. But I hadn’t officially quit yet.  I would call in weekly with updates.  But eventually as time went on I was seeing no improvement at all and got tired of giving my managers the same phone call every week telling them I couldn’t go in. So I quit that job.  At the same time I also stepped down from my position with a local pro life organization. 

Between May 2016-November 2017 I cant even count how many times I had to rush in to the hospital. I was experiencing so many horrifying symptoms.  Serious head pressure, heart attack-like symptoms, breathing problems, complications of my mental illness, and many other things.  No doctors could figure out what was wrong with me.  Finally we decided to go back to the specialist outside of Ottawa.  He had been following my health for years, and so when he saw that I wasn’t improving he began to suspect Lyme.  Around that time I also started a new treatment for my concussion, which included physio, chiropractor, acupuncture, dry needling, and more.  But months went by and I still wasn’t improving at all.  Then I was symptomatic ally diagnosed with Lyme disease. However, the doctor who diagnosed it wasn’t ready to risk his practice (for treating Lyme), so he sent me to meet a naturopathic doctor just outside Toronto. This second man was originally a medical doctor, but after being bullied and brought to court he decided to give up his license o he could continue treating Lyme.  I met with him several times, and he did further testing, but right before I actually started my treatment he backed out of my case.  I was too complex.  I think especially my mental illness concerned him.  He called up a colleague in Ottawa who saw me within a week (despite her long waiting list).  She did more blood work which confirmed Lyme and multiple co-infections,  So I started a variety of treatments with her. Including, IV vitamins (multiple days a week), IV and oral antibiotics, new diets, and more.  This continued for six months.  Part way through (after a lot of fighting) I finally got a PICC line placed to spare my veins from so many pokes.  

From the beginning of October, until the end of November I had my longest hospitalization in the psych ward (due to a severe mental breakdown).  During my hospital stay the staff wouldn’t give me antibiotics, and so the PICC line had to come out. (I’ll talk about my hospitaL stays in a further post).

Once I got home I went through a very dark time. I didn’t know what treatment was left or if doctors even cared.

In January 2018 a friend (Roze) told us about an alternative treatment in Edmonton. So that’s what I did next.

Now I’m home and keeping up with supplements, detox, medication, and appointments with my psychiatrist. 

I will leave it at that and share more in the upcoming weeks.

Sent from my iPhone