May 1, 2015

DEAR EXTRAORDINARY & BRAVE SPROUT


our dog harrison is a rather unique dog with an unusual skill set - he dabbles in DIY projects, sews, tweets, loves plaid, surfs the internet, never tires of eating cheese and recently has been moonlighting as a Lyme PAW-ster boy and advocate (aka #lymepooch).

(read more about harrison here or visit his facebook page here). 

harrison also has a really big heart for kids with lyme. he was on the computer more than usual this week - turns out he had some stuff he needed to get off his chest. i let his paws do the typing which ultimately culminated in him writing a very special blog post for kids with lyme. 

so, yes, you are about to read a blog post written by a dog. will wonders ever cease? apparently not as he also has excellent punctuation and command of the caps lock key. unlike me.

so without further ado, i hand over this post to our wonder pooch, harrison...




Harrison here...so it's been a pretty ruff here since Sparky started his new treatment and it's made him really sick. His heart hurts too. I can hear the aching in it. And I'm feeling sad about that.  


And you know what? I can feel the heaviness and hurt in my people's hearts too.


It's got me thinking -  I bet there are a whole lotta other kids with lyme in need of a big ol' lymepooch smooch because I can actually hear the aching in each and every one of your brave and bruised warrior hearts. (Dogs have exceptional hearing) So this goes out from my heart to yours...


Dear Extraordinary & Brave Kids with Lyme,


I know what you are dealing with bites. Big time. In fact, it downright stinks!




I can feel the way your tender little heart is heavy and weighted down by this battle. And that life just feels scary and hard and really, really tiring.



You've probably grown really weary of taking all your meds - especially when they make you feel sicker. I know it's super duper hard to keep taking them when they don't seem to be helping. Chances are you are probably thinking,

"What's the point of taking all this stuff when it's not making me feel better or grow stronger?"


Have you ever wondered about how things grow? I sure have. I live in the city and I don't have a back yard where I live so I don't have much experience gardening. But I like learning about stuff, so one day I planted a little seed.




I had to bury that little seed way down deep in the dark earth - far away from light and life. Then I had to take care of it. I had to water it, feed it and make sure it got some sun. And that was kind of weird to do because all I could see was a little pile of dirt. 




Do you know why it was super important that I keep taking really good care of that dirt pile? Because my tiny little seed was actually sprouting way down there in the dark! Even though I couldn't see any signs of life, that little sprout was growing every single day. 





It takes a really long time for a little seed to sprout and then grow strong and tall enough to push through the darkness into the light. 

It was really frustrating and tiring to do all this stuff to take care of my seed when all I saw was a pile of dirt and no signs of life. It was really hard to even believe that my little seed was sprouting and growing underneath all that dirt. I had to be so patient and just trust that all the things I was doing to take care of that little unseen seed was really helping it to sprout and grow.






It's kinda the same with lyme treatment. You gotta trust that what your parents and doctors are telling you to do is helping you heal and grow. You have to keep believing that all those pills and IVs and water and healthy food is actually helping your body heal - long before you feel stronger or healthier. 

Here's the thing - I can't tell you exactly when you'll finally feel better...but with absolute certainty, I can tell you this: 

You are extraordinary,
you are brave,
and
extraordinary and brave people overcome bad stuff every single day!

You are one of them! And just like that little sprouting seed - you are growing stronger and healthier every day - even if you can't see or feel it right now.



I know it's really hard to even believe that you are extraordinary and brave when you feel so bad and have been sick for a really long time.

Chances are that sometimes, late at night, as the world sleeps, you lay awake in a crumpled heap of pain staring into the dark of the night and you feel very alone, very small and very scared.

Chances are you think about a lot of tough stuff and maybe you've got some secret fears and worries;

Like how bewildering it is to live in a body that works for an hour or two and then quits for days on end.

How some of your symptoms are so scary you can't find the words to describe them.

How some of your symptoms are so confusing that you hide them from your friends and family.

How sometimes you don't even tell your parents how bad you hurt cuz you don't want to worry them.



Chances are you worry about the future - you wonder when or if you will ever get better. If you were born with this disease maybe you've even thought you were destined for a lifetime of sickness.

Chances are you've lost friends and sometimes strangers stare when you roll by 
and maybe all of that makes you think that somehow you are unlovable, unworthy or weird. 

Chances are you've had some teachers that didn't believe you when you said you were trying your hardest but sometimes it's just really hard to remember stuff or read or write. Maybe they even said you were faking it or just being lazy.  

Chances are you've had some doctors tell you they don't believe you are sick. They may have even been downright cruel and laughed at you and said you were just using your wheelchair to get attention.

When people, especially big people that are supposed to help us, don't believe in us or say really hurtful things or even bully us, well, that is super confusing, frustrating and maddening. It can bruise your heart and tear you down. It can even make you doubt yourself or hate yourself.

I know that sometimes all of your thoughts and feelings get all twisted up inside you. Sometimes they make you explode and cry and scream and rage. I know how sad and confused and maybe even ashamed you feel when that happens.



I want you to know that it is perfectly normal to feel and think about these things. I also want you to know that not every thought we have is true! Thoughts can be real tricksters - sometimes they lie to us and when we believe those lies, we start to feel really bad about ourselves. In our house, we call that stinking thinking!

Stinking thinking can make you think that the bad things that happen are somehow your fault or you deserve them or that things will always be really bad.

I know that sometimes you think that maybe it's some how your fault that you are sick - maybe you told a lie once or were mean to someone or got sassy with your parents and that's why you are sick. Maybe you even think you did something so big and bad that you actually deserve to be sick and in pain.

Dearest beloved sprout - it is not your fault that you are sick or not better yet.



I know that sometimes it is really hard to remember stuff or write or read but that is not you - that is the bugs in your brain. You are not bad or dumb. Those bugs are! This suffering that you are enduring it has made you kind, thoughtful and wise beyond your years. 

And that wheelchair that you are in - you didn't choose it for attention...you use it to DO life... even when it is hard, you hurt all over and you know people are going to stare, you get in that chair and show up to do life the best way you can right now. Can you see how extraordinary and brave that makes you?

Dearest extraordinary and brave sprout - you are NOT lyme!  You are SO MUCH MORE than this thing that has taken up residence in your body. 



You are just like that extraordinary and brave little sprout - you are an unfolding miracle, a downright masterpiece, a lovable, worthy, tough NINJA sprout that is growing and healing in spite of all the dirt and darkness that surrounds you.

You know how I know that you are extraordinary and brave?

Because you woke up today and even though you felt horrible and it feels like everything stinks, you kept fighting.

WOAH - something here actually does stink for real! 
Oh, wait, my bad, I just farted!
Pardon me!


OOPSIE POOPSIE!

I think you just smiled, didn't you?


Farting does that to people - even big people (but sometimes they act all huffy and proper about it cuz they're a bit embarrassed by it. The thing that is funny about that is the older you get the more you fart because you have less control in that area of your body!)

I bet you're grinning now... maybe even giggling a bit.

You know what?
That makes you extraordinary & brave - because, in spite of how bad you feel, you are smiling.

Just PAW-se for a moment and think really hard about that.

You just smiled... 
Maybe you are so sick right now that you haven't been able to leave your bedroom for days, or play in weeks, or got to school in years -  yet you are sitting there smiling.

That makes you extraordinary. And brave. Really, really brave.

You are NOT lyme - You are an extraordinary sprouty-person living a really brave life.

I see that. 

There are going to be days when it gets really, really hard
and
hurts more than you think you can bear 
and
you are not going to feel extraordinary or brave.

When you have a day that just stinks so bad, I hope you'll remember this...

You are an extraordinary sprout living a really brave life and this gassy pooch is rooting for you. I love you and I believe in you.

Affectionately yours,
Harrison Phineas Goertzen, #LymePooch




April 27, 2015

ONE STEP AT A TIME


i'm wearing my thrifted polka dot shoes today. aren't they spiffy?


they make me smile and they remind me to just take this journey one step at a time. as it turns out, they are also a super snazzy way to jazz up a hospital-issued wardrobe.

so here's the thing - i'm sitting in the hospital awaiting a CT Scan right now. for me. i've been struggling with some pretty debilitating symptoms since mid-january. primarily, intense pain and pressure in my spine, vertigo, nausea & increased vomiting (as in i'm vomiting more than the nightly vomiting episodes that have plagued me for 3 years now)

aside from the vomiting, the rest are all new symptoms for me.

we haven't talked much about my struggles the past 4 months for several reasons...


...for the first few weeks we just thought i had a really bad flu. which at first made sense - after all, my symptoms were "new to me" and came on suddenly. on a wednesday morning in mid-jan, i was woken out of sleep by intense nausea and back pain, within hours i was vomiting. however, as january ebbed into february, the pain & pressure in my spine increased and i became so off-balance that i had difficulty walking. as a result, i was unable to get out of bed for most of february. as my functionality began to diminish, the hope that this was nothing more than the flu faded away.

...and then it all just felt too surreal & too unbelievable to consider that sparky and i could possibly be in relapse within a week of each other. (my symptoms began the week before he fell ill again.) 

...because coping with sparky's relapse took all our emotional sharing quota - there is only so much you can publicly bleed about at one time.

...because there have been more questions than answers and everything has been about as clear as mud.


in march, i was seen by a local doctor who suspected that my spinal pain & pressure was infection related. (i also had elevated WBC) he prescribed antibiotics. within 72 hours of starting the antibiotics, my symptoms intensified so greatly that all i could do was lie on the bathroom floor and puke and cry. the hubster put in an emergency call to our LLMD, DR H. with sinking hopes, we suspected that the sharp increase in symptoms was most likely a herx...an indication that my symptoms were most likely lyme-related. 

however, DR H was concerned that my symptoms were also strongly indicative of another condition. (lyme often mimics other conditions) my doctor here agreed and they both felt this warranted further investigation and felt it was necessary for me to undergo several tests to rule out the condition my new symptoms are indicative of.

so that is where i'm at...in probable relapse alongside my son. today's scan will either confirm my relapse or reveal another condition. affirmative results in either direction will be difficult to face. this journey is so difficult to walk...but i'll just keep moving through it one spiffy step at a time. 







April 21, 2015

LDI IMMUNOTHERAPY FOR LYME


sparky is starting LDI Immunotherapy today (april 21). 



this will be the first dose of what will likely be many.

sparky has been fighting chronic lyme and co-infections for 5.5 years now. every system of his body has taken a real beating. he has had a chronically elevated lymphocyte count and elevated B cell count since getting sick in sept 2009. in the last few years he also developed immunoglobulin deficiences - specifically in sub-classes IgA, IgG and IgM. since he fell ill again in january 2015, his white blood cell (WBC) count has been elevated and steadily climbing as well. 

here's a very short and simplified explanation of what that all means;

LYMPHOCYTES
lymphocytes are a small white blood cell that play a large role in defending the body against disease as well as being responsible for immune responses. there are two types of lymphocytes - T-cells and B-cells. the B cells make antibodies that attack bacteria and toxins. the T cells attack the body cells that are overtaken by a virus or bacteria. lymphocytes are often present at sites of chronic inflammation.

IMMUNOGLOBULINS (Ig)
immunoglobulins (Ig)or antibodies are proteins made by the immune system to fight antigens (antigens are foreign substances such as bacteria, viruses or toxins). the body makes different immunoglobulins/antibodies to combat different antigens. IgA, IgM and IgG are Ig subclasses and are often measured together (done via blood test). the results give doctors important info about how the immune system is functioning - primarily in relation to infection and autoimmunity. sparky has had extremely LOW levels & deficiencies in ALL three of the following Ig sub-classes for several years now.

IgA - is present in mucous membranes and helps defend the body against respiratory illnesses and GI tract infections. 

IgM - found in blood and lymph fluid. first antibody made by immune system to fight new infection

IgG - most abundant antibody and protects body from bacterial and viral infections

WHITE BLOOD CELL COUNT (WBC)

WBC are important part of the immune system and help fight infections by attacking bacteria, viruses and germs that invade body. elevated counts generally mean your body is fighting an infection and/or indicate other problems such as inflammation, trauma, stress, allergies etc.

Ok, phew! are you still with me? i know that's a lot of medical stuff to digest - and actually it's just the tip of the iceberg but hopefully enough that you can grasp a bit of an understanding.

WHAT DOES ALL THIS MEAN IN RELATION TO SPARKY?

in short, this basically means that his immunoglobulin deficiencies, high lymphocyte & b cell count coupled with the elevated WBC are indicative of BOTH active infection and an inflammatory/autoimmune response to that infection. his doctors believe this makes him a good candidate for LDI immunotherapy.

what is LDI immunotherapy?
(oh no! here we go again - this is a simplified explanation)

LDI therapy was originally named Enzyme Potentiated Desensitization or EDP. EDP/LDI is a treatment that has been used in europe for over 40 years for all types of allergies, autoimmunity, and other immune hypersensitivity reactions. recently, doctors have begun to use it to treat lyme and co-infections.

it is done with injections of low dose antigens - an antigen is a toxin or foreign substance that causes your immune system to produce antibodies to fight that specific antigen. (in sparky's case dead lyme/borrelia is the antigen being used). the antigen(s) are combined with a special immune moderating enzyme (called beta-glucuronidase) to induce the production of antibodies and immune regulator cells. these cells train the immune system to not have an over-excited response to the antigen.

the key to LDI is this enzyme - beta-glucoronidase - which attracts certain specialized white blood cells called t cells that are involved in the immune response and makes them pay attention to the specific antigens that are mixed with the enzyme. the enzyme then causes a down-regulation of only the part of the immune system that was over reacting to the included antigens.

LDI injections are given at 7 week intervals and the patient receives a dose of antigen that ranges from 1C to 5C dilution.

however, in lyme patients, the reaction or symptom flare that the LDI can trigger can be quite severe and difficult to control. in LDI therapy for other conditions, the 'rescue' for pulling a patient out of a bad flare is the administration of the corticosteroid drug called prednisone. prednisone is an effective immunosuppressant and the use of any sort of immunosuppressant can be very dangerous for a lyme patient. therefore, in an effort to stave off any sort of huge reaction, lyme patients are generally started at the lower end of the dosing dilution scale.

sparky's body is already very reactive so he is being started on a MICRO dose. his first dose is 15C. this is miniscule! (the higher number actually means a smaller dose of the antigen- so confusing i know - medicine is so weird!)

traditionally, a patient only receives LDI injections every 7 weeks (the immune system has a memory and doesn't like to be reminded of an antigen more often than this) however, in sparky's case and because his doctors are actually "undershooting" with this micro dose (meaning it may be too tiny to actually initiate any sort of response), they will incrementally titrate up his LDI doses each week for next 3 weeks - starting at 15C, then 14C then 13C.

if he experiences a bad flare of his symptoms during this time, this titration dosing will be stopped. if he doesn't flare then he will receive all 3 doses over the next 3 weeks and then under go the second stage of dosing 7 weeks after that.

so that is where we are at. today, sparky will start this new cutting edge therapy. 

the objective of the LDI therapy is to treat the auto-immune aspect of sparky's illness - to modulate the immune and inflammatory responses his body has in response to the bacterial infections he has. while he under goes this therapy he will be closely monitored by DR D, his seattle lyme doctor. additionally, he will remain on aggressive antibiotic treatment under the care of DR H (his primary LLMD in SF) as his elevated WBC and markers for strep, lyme, babs, and bartonella continue to indicate active infections. DR H and DR D have partnered together many times before in order to provide sparky with excellent medical care. we are very grateful for both of them.

please keep our boy in your prayers. 

onward and upward towards healing.
there is always hope.