By Angela Johnson

Tonight I’m reminding myself that you are good.

Mainly so that I can find joy in the morning. Because I’m mourning.

Peace. Knowing that you have understood the cries of my heart.

Because in my frailty I feel like I’m being torn apart.

It’s hard to fight to live, when you’re not really living.

I’m living blind- unable to see. Help my unbelief.

You’re using my pain, and yet it’s a wound so deep.

It’s often times disregarded, which makes me feel discarded.

But you hold my pain in your hands and tell me to fight.

I realize that you are working through the pain. Growing me stronger- in so many ways.

My goal is to Persevere until the end, knowing you can use this plight for my good in the end.

But can you also use it to help others?

I know you won’t let me suffer in vain.

Purpose. You give me purpose in my pain. And so I cling to it. I won’t let it go.

Tame this heart.

Help me remember in your eyes, regardless of myself, I am loved.

That I am given so much worth in you- that I will probably never see in myself.

The fact of the matter is that you see me. You know me. You hear me. You see me broken in so many ways- you still love me.

So when I want to give in —

You always sustain me somehow. You will always be my “enough”. You have my trust.

So with whatever storm comes tomorrow, I want to rest. Rest In your arms. Because I know healing will come eventually.

Maybe not in “my way” but always yours. It will- whether this life or the next. You control the doors. And still you continue to pour life through me.

I’m alive another day. I’m here so that I can still say that you are God, you are good and I thank you for today. Today is more than I deserve- and still you lather grace.

Please take away my entitlement so that I can always be at a point to offer praise.

The Plague

boca and supplies 018

The Plague
By Ang Johnson

Can I even be honest
About whats plaguing me…
Without an eye roll or some cacophonic speech?
Because no one seems to listen when I bring up my disease.
Each day is full of so many unknowns
I try so hard to take control of my symptoms.
I smile and nod, so don’t ever talk “depressiom”
or else when I do, they’ll all second guess it.
But it’s the fact that I can’t get help that makes me depressed, no cure
Yet I’m still hopeful that someday this pain will come to an end.
My bones ache, and sometimes I seize.
I get anxious as I think about the inflammation inside me.
But evenso, I can’t get anywhere because as a lyme patient
they won’t see me.
So tens of thousands of dollars I’ve spent just to fight
To try and get back the last five years of my life.
Back to where I had dreams and goals, no fear.
When I had good cognition and could trust my legs with the weight
they needed to bear,
When I had the coordination to dance.
Now the only dance I do is in circles- hitting a wall,
Looking for answers in the system and finding none at all.
I thought long term antibiotics could be prescribed for acne?
But for an actual bacterial infection… it’s not okay.
Instead it’s okay to let it grow until we die from this disease?
Or until we get misdiagnosed with other syndromes that you can’t
effectively treat.

I saw a specialist once, and he said to my face,
“Even if you do have lyme, there is nothing I can do for you”.
So with a quick response I said, “I guess I will just get sicker and die?”
Silence fell in the room.

So please continue.
Don’t talk about depression, instead lets just oppress it
because if we talk about how this illness tests our faith.
We’ll get labelled “psychosomatic”.
Don’t talk about the suicides, due to the system failing to help.
That’s not to mention what lyme disease in the brain
makes you want to do to yourself.
The rage, the hormones, the forgetful brain.
The twitches, the tremors, psychosis, anxiety,
fatigue, even being wheelchair bound for many who are lame.

Speaking of which I guess I should stop talking.
I’ll continue my fight, you’ll continue your mocking.
Dancing round in circles, something has to change.
The blood that has been shed from this disease- deserves
to have a name.

Mommyhood and lyme.

So it’s official. I had my little bundle of joy over 7 weeks ago now. And although my life has changed for the better I am still terrified of the “what-if’s”. I love being a new mother, but it’s scary, especially not knowing what my chronic illness will do while I try to take care of another life.


So I guess I should back up a bit hey? To my 9 months of pregnancy?
The first trimester was packed with copious amounts of vomiting and never ending morning sickness. I survived on diclectin and gravol- which might have been more of a placebo as I still ended up throwing those meds up a lot of the time. I had quite a few UTI’s in which I had some antibiotic treatment for it. No biggie. The second trimester my morning sickness cooled down, my fatigue started to disappear and I was able to do things I previously couldn’t do, things that most of you who aren’t ill, might take for granted: like go for daily walks and do “light” cardio.
I was elated! I had some issues with my kidney leaking fluid and being inflamed, which caused me some pretty gross pain, but that only lasted a few days, which was apparently pregnancy related.
Then the third trimester hit, and the fatigue and morning sickness came back, except this time I wasn’t throwing up as much. But my blood pressure started to get a bit high, and I was having yucky dizzy spells. I started wondering if my lyme was creeping back into the picture. To calm myself down, I kept saying… “this is also normal in some pregnancies”.

See here’s the thing:
Most mothers worry about their child getting ill. I remember when I had ultrasounds I used to be so scared, because, I would say to myself, ” what if my child has a missing limb- or no heartbeat?”. I would brace myself for whatever possible outcome could happen, prior to entering the ultrasound room. Because knowing that I have a disease that “can” pass onto my child terrified me. Terrified me of the what if’s in a different way.
I think this is a normal part of mommyhood- we want our children to be okay. We so much want to be able to give them the best.
Now throw a chronic illness into the mix- like lyme disease- and the worries go up.

Will he catch it from me?
Will he get it- but it remain dormant only to rear it’s head years later?
If he gets sick, do I have the money to treat him?
Will my doctor leave us if he ends up getting lyme?
What if I relapse?
Will I be able to be a good mother and attend to my child’s needs with limited energy?

I was induced at 40 weeks and 5 days due to high blood pressure.

And now that he’s finally here my worries are:
Did he get it from me?
How can I tell?
Can I afford testing? Treatment?
What about me- am I relapsing? Or am I just sleep-deprived and  iron deficient again?

I think the hardest part about being a new mother with a chronic illness is that people don’t understand what you really go through on a day to day basis. Every twinge of pain I feel worries me because I think to myself- “Is this a sign I could be going backwards?. I smile when I’m at family events and functions- but no one knows what is really going on inside my body. No one knows the pain I am grinning and bearing. Or the immense fatigue I feel.
I have limited amounts of energy with my illness- and now, that energy is being used to raise a child, all on little to no amount of sleep. It’s crazy! How do people do it?

Lord, please protect him.

God is still good, even when things hurt.

A few days ago, I went to see my GP in a panic.
I should give you some background information here regarding the panic: this is the first time I’ve had an amazing doctor who is actually “aware” of my lyme disease and is not dismissive of it. This doctor knows I have a naturopath treating me for lyme, so my GP is in the safe zone when it comes to lyme. But she does, ask on occasion how treatment is going. That has been huge for me as It’s been the first. (In the past 5 years!) I have an insane amount of anxiety any time I go to the doctors because I’m always scared that they are going to one day, not want to deal with me as a patient because of the politics surrounding lyme disease. For the first time, I felt like I actually had a doctor who wanted to help me get better. The rest of the doctors it seemed would have rather let me die, or lock me up in some sort of loony bin because I was simply trying to get help. Help which is often too risky for doctors, in Canada 100% of lyme disease doctors have been stopped from treating lyme patients with longer courses of antibiotics. To illustrate this and make it more practical: An infectious disease specialist told me point blank: “Even if you DO have lyme, there’s nothing I can do for you”, to which I replied…”So I just get sicker and die?” After I said that the room fell morbidly silent and this ID doctor stopped his eye contact with me. My mom was in the room and wanted to strangle the man, but we got up and left. I share that story to paint the picture that has been the last 5 years of my life but also something that is the reality for every lyme disease patient out there. I’ve dealt with specialists, that never wanted to see me again, once I mentioned lyme disease. I even have photocopied letters from these specialists that said I inquired too much about lyme and “will not be seeing me again”. Long story short, I have some form of PTSD from going through all this neglect in the medical system. And this is why I hate having to make a trip to the doctors. A system that was ironically intended to “Do no harm” yet does so much harm it could create more health concerns just from the stress of it all alone (If you don’t know what I’m talking about about when I say lyme politics, I suggest you watch this documentary Under Our Skin). So even though I have a good doctor, she’s been so amazing. I still have massive anxiety that she will drop me. Which is so upsetting, because I can’t control what is happening to me. My illness is not even dietary related, it’s vector borne…anyone can get it. You, the reader could get it.
So the reason I made this trip to the doc was for my lungs.
I have been having issues with my lungs for the past few years now. It’s always been pretty common for me to have troubles breathing especially at night due to the lyme. But then I began randomly spitting up blood which I thought was weird. I didn’t even have to cough, I would just feel like I had a bunch of phlegm I needed to spit out, but when I would go to spit it out, it was blood. This process, continued to happen and I had various doctors say I had a respiratory infection, or allergies. So I ignored the problem thinking it would go away. 6 months went by and it was still happening, and then by the time a year had passed I figured I should tell my new GP about it. So I got whisked away to more specialists, one who totally thought I was crazy. But, he sent me for a chest x-ray anyways.
I waited about a month until I got the results back. Didn’t expect anything to show up.
Apparently the xray showed lumps (the medical term is granulomas) in my lungs. My GP told me it can cause a lung disease, so of course I wanted to know if it was serious…or not serious.
I found out that it was the culprit of my spitting up blood though, so at least I got some answers.
Anyways, I researched it and granulomas can often come from bacterial, viral, or fungal problems. So I figured, oh, it’s probably just the lyme. I saw my doctor to get more puffers and try to get more information about what’s going on with me, as I’m still confused. And she stopped me before I got too far ahead of myself, and made comments like, we don’t know what this is yet. We don’t know if it’s benign if it’s not, what is causing it. If you will need treatment ect.
So, needless to say, that kind of freaked me out a bit. (But I don’t think the lumps are cancerous, I’m praying that’s not what it is.)
Then during the course of our interaction she made a suggestion that there was a doctor closer to me, if I wanted a new GP. My heart SANK, and immediately, I was thinking over and over “it’s the lyme”.
Now that I have lung issues, I have to see a lung specialist. Normally I would not even mention lyme if possible, but because granulomas can be caused by infection I feel like I “need” to tell him I have lyme. For the sake of helping eliminate whatever is in my lungs.  I’m scared though that if I do this that A. Then I might not get any help.
and B. I don’t want him to pressure my GP to drop me as a lyme quack. So my anxiety definitely flared on my commute home. I was crying the whole car ride home, non-stop and felt like vomitting. I couldn’t eat. I was too stressed. So I put Andy Mineo on in the car and started singing along (with intermittent ugly sobs in between)
“Whatever comes, whatever goes, the Lords teaching me He’s in control, and if I never have anything more, well at least I got him and he saved my soul so I’m alright”. I vocalized a jarring, “God you are good” in the car. And continued to cry when I got home on the phone with my mom and she prayed for me. I did a crap load of deep thinking and want to remind you and myself, that God is still good.

For those of you who follow me on facebook, this is what I wrote the day of:
Sometimes life is so overwhelming and situations seem completely hopeless. But in the middle of everything I might perceive to be bad remains the fact that God is good regardless of my emotions and present situations. What an oxymoron. Praising God in the midst of tears from a wearied heart is such an “unnatural -reaction” yet something weird happens when we do; There becomes a reason and a hope for our pain, that if God is good and in control he is going to turn everything around for my good (for his ways are better than my ways) and for His glory. I am completely tired, worn down, and feel defeated today and my heart feels empty…BUT I am not destroyed because I have hope that God is using my pain for something greater than I can comprehend. If this is how God plans to glorify himself, then why should I complain, the greatest testimonies are usually ones which involve suffering and struggle. If my life was perfect and everything was great of course I could say God is good but it would only be because of my natural reaction to my “situation” where I feel “blessed”. But if I say God is good, in the middle of sorrow, how much greater does that glorify God? Anyone can love God when life is comfortable. Anyone can worship something when there’s no persecution. What then, happens when the heat is cranked up and you are suddenly thrown into a fire? Would your faith stand?
Be careful not to just base your salvation on an “experience” or emotionalism. I challenge you to really dig and understand “why” you believe what you do.
Sorrow and grief are real things that create real pain. But the crazy thing is, sorrow and grief happen to the Christians and the buddhists and the pagans. What is the reason for your pain? Is there any purpose to it? In Yeshua, yes.
So today, after almost having a nervous breakdown…I want to remind myself and you out there who are going through something….that
A. God still cares and is working something out with your struggle for your growth and greater good and his glory and .
B. He chastens those he loves. If you have not met with suffering yet, you WILL. C. God has not left you and will never forsake you.
D. God also suffered and became human so that he could understand our grief and empathize with our pain and love us with such compassion to such a degree that when we see him again he will wipe away every tear from our eyes.

This is written mainly for me because I need it, but if this helps you too I’m happy. When David wrote in the psalms, “Why are you cast down, O my soul, and why are you in turmoil within me? Hope in God; for I shall again praise him, my salvation”
He was speaking to his soul, his very being to remind himself about the goodness of God, and his future inheritance because his current situation was causing him so much anguish. In his anguish, Christ was his joy. Christ was his light at the end of the tunnel for him. And it should be that way, but we so easily forget how precious Yeshua is and how amazing it really is that he did so much for us, for our joy, and because he longs to be with us.I have Yeshua, my salvation, that’s a GOOD thing, even on my bad days. So today, I’m reminding myself that God is good, in the middle of my pain. His finished work stands firm, and nothing can shake that, not even suffering or anguish. He suffered, so why should I not suffer? Should I only expect his blessing? Only the sunshine and never the rain?
Expect the rain. But remind yourself about the good things God has done for you. Also remember, whatever we lose on earth, we will regain in heaven. Health, family, friends, infinite joy ect.

I hope this is helpful in some way.

Soli Deo Gloria.
Much love.

Response to David Patrick. Q&A Tick Talk: What you need to know about Lyme disease

Sooo many erroneous assumptions with this post! So what’s the problem?
I want to tackle a few of the statements made by David Patrick from The University of British Columbia (UBC)
Dear David Patrick.
It would be easier to assume that rising lyme disease rates are due to some sort of a miraculous phenomena, but let me assure you that these rates have nothing to do with magic.
If one goes to the BC CDC website, It shows which provinces in Canada people are most at risk for, in regards to catching lyme disease and other tick-borne diseases. The CDC website states that British Columbia is “ENDEMIC” for lyme disease. Endemic means, (of a disease or condition) regularly found among particular people or in a certain area (thank you google). So if the province of British Columbia is endemic for lyme disease why wouldn’t it be, as you so cleverly wrote, “all over the place?” From Vancouver Island, to the parks of Chilliwack or Kamloops…ticks with lyme disease can be found. Birds, and even household pets like cats and dogs can bring ticks into our beloved homes. Think about it, our pets get vaccinated for lyme disease and get aid against fleas and ticks so easily…because veterinarians know that all our animals have to do is simply be outside among tall grasses, trees. leaves, or logs ….as they can be a great hiding place for ticks to transfer onto our pets. So contrary to Mr. Patricks view that lyme isn’t all over the place. I argue that lyme IS all over British Columbia and is only increasing with wild animals: deer, bears, rabbits and birds carrying ticks to the northern and southern parts of British Columbia AND, I might add, the rest of Canada. There is no immigration policy for ticks and their carriers (like birds)….they do not stop at the border with their passports in tow.

Secondly, Mr. Patrick stated that “Some of these folk have been diagnosed with Lyme disease through so called Lyme-specialty labs in the United States”. Let me explain something, there are over 300 strains of borrelia burgdorferi worldwide, which means if you only get tested for one strain of borrelia, you could still have borrelia…it’s just a strain that isn’t accounted for. In Canada in 1998 a vaccine called “LYMERix was administered, and shortly withdrawn from the public. (Because people got sick) Anyways, the “strain for borrelia” that was used in the vaccine was removed from the Canadian ELISA (still is to this day). The real reason people go to the United States for testing is because they ARE more accurate and can gain a better understanding of what strain of borrelia they may have. In the U.S and Germany, they test for more strains than our healthcare system does in Canada. (Sidenote: I came back negative on the Canadian Eliza test and POSITIVE on the Canadian Ehrlichia test, which is another tick transmitted infection most doctors miss). Also, the ELISA test is antibody test this means that if a person has had lyme disease for a long time, their body can stop producing antibodies to this bacteria leading to a “false negative” test. If one does some research on the nature of the lyme disease spirochaete, the bacteria creates a biofilm that HIDES itself from the bodys immune system and antibiotics which means it can be extremely hard to detect and treat. Dr. Allan Macdonald has done extensive studies on this as biofilms in their nature, are “chronic” and “hard to treat”. The borrelia spirochaete also has the ability to constantly change it’s outer protein layer making it hard for the body to pose as a threat.This also leads to my next point.

If lyme disease is caught early, and treated early. (Which is not usually the case, unfortunately) The prognosis is generally good. BUT the problem arises when individuals have been sick with the disease for a long time. When this happens you have biofilms in your body, bacteria that are spreading and bacteria that is also CHANGING. Mr. Patrick stated that Lyme disease was “not hard to treat” which is unfortunately not the case. Borrelia can go into many different forms: cell wall deficient, L -shape and cystic. This means that you need to treat this disease as 3 different bacterial organisms, with different antibiotics aimed at each kind of form. Different classes of antibiotics are aimed at different types of bacterias. Which means that 2 weeks of doxycycline won’t cure someone who’s been ill with lyme for several months because it won’t kill all the forms of lyme. Then there’s the issues of resistance and previously mentioned biofilms and changing cell wall structure.

I hope you take time to look into this, because lyme disease IS a growing problem and when the truth finally comes out, just like what happened with Syphillis patients during the Tuskeegee project, people were appalled that no one stood up for them and that the U.S government let people die denying them antibiotics. The exact same thing is happening with Lyme disease, all we’re asking for is treatment options, but we’re called crazy.
Remember that people with lyme disease take their lives because no one is fighting for therm in the scientific and medical community. We need you because Lyme is growing. Because one day it might be your daughter who needs help and can’t get it. Lyme is growing because it’s not just a threat through tick borne transmission but also is a threat through pregnancy and sexual transmission, just like it’s brother spirochaete “Syphillis”.

Here is the original post:

The Importance of Theology during suffering. What I have learned.

Before I got sick, I was a self proclaimed theology nerd. Dork to the core, I was eagerly eating up sermons by different theologians, listened to apologetic debates, and loved early Christian literature. My favourite books at the time were “The Pilgrims Progress by John Bunyan and The Foxes Book of Martyrs. I also loved studying the topic on the sovereignty of God. I often battled with questions such as, “If God is sovereign, why do we pray, or evangelize?”
Little did I know that my biggest question would become about the question of suffering, in all of it’s complexities. Why, if God is sovereign, does he permit suffering when He has the ability to heal? Or why does he let a situation persist if he could stop it in the blink of an eye? Persecution? Loss? Grief? Where is God in it all?
Here are some things I am learning from my own personal journey of sorrow in dealing with chronic illness.
suffering piper

We should not fear suffering.
Scriptural or biblical truths are things that stand firm when our emotions want to crumble under sorrow and anguish. For example, If we want to say that something is true, that truth can’t change, if it is really true. So if “God is good” is a ‘true’ statement, then my hardships don’t negate from the fact that God is good. In fact God is good because he uses bad situations to work things out for our good in the end. They make us better, stronger and better equipped to minister to broken hearts. Continue reading

Heart Ache. Lyme-Carditis

Hey everyone, Top O’ the mornin’ to ya!
It’s 1:05 AM and I can’t sleep. My fan, with it’s broken stand, is blowing cool air in my face, and I am resting my back on a pillow with my heating pad on it  I’m still buzzed from all the coffee I’ve been drinking all day today. So naturally, I figured I’d talk about a few things that have been going on with me the past few days, but also help reflect on something that is actually pretty serious when it comes to lyme disease. I know that many people think lyme disease is not serious or life threatening. “Oh, at least you don’t have cancer or are not dying”.
If one is treated effectively right away, for the most part it’s not life threatening. But for those who have had chronic lyme disease that has gone untreated for a long period of time, treatment is very hard and as the lyme spirochete multiplies in the blood, organs and tissues the body gets overwhelmed. (Which is often why we have inflammation in parts of our bodies where the lyme spirochetes are multiplying or hiding ect., bronchitis, laryngitis, colitis, sinusitis)
I hope you’re wearing your serious pants. Are you? Oh. You said you don’t wear pants? Fair enough.

One of the misconceptions about lyme that irritates me is that “it’s not serious or fatal”. This is clearly not the case.
If lyme disease goes untreated it can cause other neurological and/or degenerative diseases but also, it can and does take lives, commonly through heart failure or strokes. One thing I have noticed with a lot of sufferers with lyme disease is horrible lyme carditis. I have a lot of friends with lyme and we often vent about symptoms, the most disturbing (among a sea of other horrid symptoms) is, our heart issues. The past few nights I have been feeling so unwell. I have been dizzy, fatigued, and have had numbness on both sides of my face and down to my right hand. I’ve had these sensations before so I wasn’t sure if I should worry about them or not. I checked my pulse, and my arrhythmia was back. *Quick beat, quick beat, slow beat, slow beat, slow beat,  silence, slow, quick, quick quick*. I got my mom to check my pulse just to make sure I wasn’t going crazy because I was already super lethargic and she said, “Your heartbeat is irregular”. I decided to sleep it off (figuring it was a herx) and put a warm compress on the sides of my face to help ease the annoying numb sensation. So the next day I still felt pretty sickly, e-mailed my doctor, and saw my nurse. I told him I was feeling pretty sick, and I also was an emotional mess, so  he listened to my pulse, and right away was concerned and asked when the last time was that I had my heart checked. I told him over a year ago, and that they found nothing when they did the Holtor and EKG even though I was still having issues back then on and off. My nurse helped prod me to go see another doctor and get some tests done just in case there was more behind the heart arrythmia (although it’s probably just lyme being a pooper, I’m sure). But for me, it was so nice to have someone take my symptoms seriously when it seems the rest of the medical community wont. I cried. The gratitude from my heart poured out in tears that I tried to hold back. So with that said, I have friends who also have lyme disease that also experience major heart issues, and sometimes it get’s so bad that they are unsure if they will wake up the next morning.

So if you’re having issues with your heart, irregular heartbeats, blood pressure, paired with with dizziness, fatigue, numbness please go see your doctor. If you may suspect lyme please go to my resources page, there is a list of symptoms associated with lyme disease published by Dr. Burrascano, MD. Lyme is known as the great mimicker because it mimics over 300 different diseases- but if you feel like there is a cause for your symptoms and you weren’t just born with a degenerative disease do some research. The awesome thing is some of your symptoms might be able to be reversed if you catch it in time.
The below link also has some helpful information in the PDF document.


Love you all. Hugs and love.

Why I am not doing the Ice Bucket Challenge

I know I know, everyone is getting sick of these “Ice Bucket” blog posts but I wanted to respond to why I am not participating in this fad even though I was nominated twice. As a Christian and someone who deals with a chronic illness I feel I have a different perspective on this than most people do. Many are willing to jump onto this “ice bucket challenge” with good intentions and I’m not here to criticize them. So, with that said, I am not telling you to stop donating, and I am not saying that the intent behind this challenge was bad. I would say that the goal of raising money for the ALS foundation has had big success, with donations reaching 70 Million so far. So, you may be asking, “What’s the problem then?”.

This blog post is dedicated to Jim Young and Heather Askeland, rest in peace and thank you for sharing your struggles with the world in hopes that the world would listen. 

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Gal 6:9
gal 6 9

1. A challenge. How is this a challenge? I’m not exactly sure what the creators of this challenge are trying to say. 
Is dumping a bucket of ice water on your head a challenge in the same way that ALS is a challenge? Anyone can dump a 
bucket of ice water on their heads and donate one dollar to charity, one time, and never do anything charity related again. Ironically, this is supposed to be a challenge? The bible tells us that we shouldn’t get tired of doing good, but also that we should do good when no one is watching so that a person is doing it genuinely from their heart, not for public approval or praise. So naturally I ask you, what do you do with your money when the world isn’t watching you? Do you still help people if you know they are struggling? 
If God has placed someone in your life who is really having a rough go with things and you have the financial means to help that person, do you? Whether it’s a single mother, a friend who has high medical costs, or someone who just lost their job… are you helping them? Probably not, but you will give your money to a non-profit organization that raises millions of dollars each year. And of course it helps that people are watching, right? 

“When you pray, you are not to be like the hypocrites; for they love to stand and pray in the synagogues and on the street corners so that they may be seen by men. Truly I say to you, they have their reward in full. “But you, when you pray, go into your inner room, close your door and pray to your Father who is in secret, and your Father who sees what is done in secret will reward you.

     “And when you are praying, do not use meaningless repetition as the Gentiles do, for they suppose that they will be heard for their many words.” Matt 6:5-6

My point is this, we shouldn’t need an audience to do good, and we shouldn’t think that this one time ‘act’ is a magical remedy for the real and horrific struggles that those with ALS and other neurodegeneritive diseases go through on a daily basis because money is going towards research. May I remind you that research is not a person. 
I have been posting my brains out on facebook the last few months because I keep hearing about seriously ill people committing suicide because they could not get help from the medical establishment. They all had severe borrelia infections (often paired with other co-infections) in their body. It is known that an untreated lyme infection (borrelia. burgdorferi or borrelia.myomoti) can lead to neurodegeneritive diseases over a period of time. Yet, lyme sufferers literally get no recognition from the medical community. To the point that disability gets denied, meds aren’t covered and people are too sick to try and work… they loose hope and no one helps. So, naturally, they take their own lives.  It’s crazy to me that two diseases such as Lyme and ALS that can have the same cause (Borrelia and other coinfections) get treated completely differently by the medical establishment. One gets completely silenced while the other gets millions of dollars in research oh, and that’s each year. Lyme disease is a worldwide epidemic (according to the CDC) with over 300 000 cases each year in the U.S alone, while the diagnostic range for ALS is around 700. Did you know that we Lyme disease sufferers have the highest rates of suicide? Did you know that doctors lose their licenses for treating lyme? Why? Because the establishment does not want people to get better. If there is no one sick, we won’t need billion dollar fundraiser campaigns or billion dollar pharmaceutical companies.
( I wont get into the biology of the link between lyme and ALS so if you are interested in this you can find publications under my “resources” page. So, I challenge the ALS foundation to actually look at the link between lyme related bacterium and neurodegeneritive disease.)
Jim Young who I mentioned earlier was diagnosed with ALS, he found out later that he had an underlying lyme infection that led to his neurodegenertive disease. Unfortunately, it was too late for him. He recently passed away. 

2. As an awareness campaign, I’ve noticed that with the ice bucket challenge, from what I’ve seen, no one actually takes the time to explain what ALS actually is. People “mention” how they were nominated for the ALS challenge, dump the water, and then proceed to nominate others. I feel that if one wants to raise awareness about something, we need to talk about it truthfully. If I were to ask you right now what ALS is, could you tell me about it? Even after watching all these videos of people dumping water on their heads for ALS? 
This is from the website:

Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

So basically long story short, this affects everything. The ability to breathe, eat, swallow, walk, talk….

3. Lastly I wish the ALS foundation would use their money to invest in the lives of suffering people, not just use the bulk of it for research. ALS is devastating, the lives of so many are crushed not only by sickness, loss of identity, grief, but also mounds of financial debt. The medications or tools (respirators, wheelchairs) that a person needs to survive are freaking expensive! Could the ALS foundation also look up ways to get free medication to people, or lower medical costs? Or like I mentioned earlier look at the LYME-ALS connection, because if people were treated early on, this could mean that people could get better and avoid ALS all together. But of course that creates a problem… that would mean there is effective treatment out there that is being suppressed. I used to live on a busy street growing up, we had a huggge yard and I was always outside. Ironically my house, and the two neighbours beside my house, both ended up suffering from different neurological illnesses. I had late stage neurological lyme disease, my neighbour beside our house got ALS, and beside them our other neighbour had severe MS. I just find it ironic that all 3 of us, that lived beside each other all ended up so sick with “neurological” illnesses. One of my friends shared a similar story with me, which actually is frightening if you think about it. 
Heather Askeland recently committed suicide because no doctors were willing to help her and she could not afford the medical treatment she needed because she was labelled as having a psychosomatic illness. This happened a few weeks after hearing about another lyme disease suicide in Quebec. 

For every dollar you donate to the ALS foundation, imagine that each dollar represents a person. 
Now imagine that each person is contemplating suicide. Research, although good, does not help fight that battle that is so near and dear to so many with chronic illness. Research helps the system make more money and produce more meds that make more people sick and only relieve symptoms. These meds never cure’ or eliminate the problems that are keeping people sick. I’m not saying that borrelia is the only link, but we know that viruses, bacteria like chlamydia pnuemoniae, mycoplasmas, anaplasmas, harsh chemicals, asbestos can cause serious illnesses, diseases and cancers. If we know the causes why aren’t we looking at ways to eliminate them from the body and brain? I think we should all ask about the types of continued research that the ALS foundation is planning to do before a person donates money to their cause, so far it’s all about genetics, but a lot of people with ALS, were healthy and then became sick. Genetic markers don’t equal a “cause”.  

How much money do you need for a research?

How much money do you need to help someone?
My hope is that the medical community will start to recognize lyme disease and HELP those who are suffering 
so that they feel like they don’t have to end their lives and also prevent so many cases of neurodegeneritive disease caused by an underlying borrelia infection.