Watch “All About Ataxia Telangiectasia Like Disorder and Our Journey: Part 1” on YouTube

Here is my video explaining what my son has and where we are now.

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Leaving On a Jet Plane

Leaving On a Jet Plane to DISNEYWORLD!!!  After a full year, Hunter’s Make a Wish is finally here!  What a process this has been!  After our trip, I will detail the process, from start to finish.  Tonight…I just sit and think.  I think about all the things that are undone.  There is still a small load of dirty clothes.  Also, Hunter got wet but did not get a scrub bath.  Oh, then there is the “is it liquid or not” conundrum.  I am sitting looking at my kids’ boxes (for their keepsakes) and all I notice is that 2 lids aren’t on perfectly.

Image result for make a wish

Packing

Big Daddy is working on his bag at 10:39 pm.  I’m thinking about the dishes in the sink, getting video/pictures, and do I wear jeans or leggings on the plane?  Oh, one of the kids puked…is it nerves or a bug?  Will he be sick on the plane, get everyone sick…what if it rains the whole time we are there?  Seriously, my mind is swirling.

Over the course of the week, I got myself and 5 kids packed.  Luckily, my big girls can pack for themselves LOL.  In a stroke of genius and Marie Kondo-ing luggage, we were able to get them all packed in a backpack.  Yay!  I have a HUGE tote bag and a weekender.  Big Daddy has a duffel bag.  Our “checked bag” is full of just extra things and liquids LOL.  We are also checking an empty bag for souvenirs, per the advice of many other Make a Wish families!

Image result for disney world

Thankful!

I am very thankful that my son-in-law is staying at our house.  You know, I am all about safety!  Also, my dear friend is coming to take care of my animals during the day.  I have all the bases covered!

For now, I channel God’s grace on this trip.  I am putting my OCD in a bottle and am going to physically *try* to let it all go.  It is hard to not focus on why we are there, sometimes.  I will not do that, this week!  We are not going to stress and we are going to have a great time!

Prayers are TRULY appreciated!

Lyme Does Not Travel Alone

Lyme Disease does not travel alone.  It’s important not to think chronic Lyme disease only stems from ticks.  It is most often congenital and is a gift handed down from your parents.

One of the reasons it can be difficult to diagnose or be considered is because the symptoms are so broad.  The signs are widespread because several co-infections go along with Lyme and everyone has a different combo of them.

Lyme never comes alone it always brings at least one co-infection.  Your symptoms may be fatigue and pain while another has migraines or depression.  That’s because you have different co-infections.

Callie had Lyme and four co-infections well guess who tested positive (although symptom-free) for Lyme and the same four co-infections?

My parents–yup!

Why are they symptom-free?

Here’s how it works: God made you with a fully functioning immune system, and if we left it alone it could handle all the gunk we inherited plus things we are exposed to now.

Any number of things can give it a whack and make it limp a bit where it is not able to fight at its full potential.  When that happens, some of these fundamental things can pop up.

Of course, we all know that the food we eat and all the junk we are doing to ourselves are a factor.  Then other things can give your immune system a whack that’s just enough to be a trigger.

For Callie, it was an exposure to an insecticide (probably while playing soccer).  Then she had her 6th-grade booster shots.  That whacked her body just enough that a month after having them, she began having her first of many symptoms.

Because Lyme Disease does not travel alone, she not only Lyme but four other co-infections that her body was battling.

Any Big Stressor

I’ve heard others have been in a car wreck, gone through a divorce, (any significant stress).  Some had gotten a flu shot, had anesthesia or a significant health crisis.  Afterwards, their symptoms began.

All of those things can affect the function of your immune system letting congenital Lyme take over.  Once Lyme Disease takes over and Lyme Disease does not travel alone, other symptoms begin to emerge.

So if your family tree looks similar to the one below, there’s probably a good reason for it.

Lyme does not travel alone

Lyme Disease Easy to Diagnose

Lyme Disease Easy to Diagnose

Lyme Disease is easy to diagnose and it is easy to treat.  You might assume that if it were a possible cause to your illness that your medical provider would have considered that before your diagnosis and there’s no need to discuss it now.

If Lyme Disease is easy to diagnose, then why isn’t it standard practice for anyone that shows signs of autoimmune illness, mental illness, autism or other related illnesses?

It’s pure and simple, and nothing shows it better than this picture of Callie administering her IV antibiotics that cost us (with insurance) $700 per week. 

Yes, we had insurance, but they paid for only the first 30 days of treatment. Thirty days is not nearly enough.

She did this 3-4 times each day and would become very very ill afterward.

Our medical system has been taken over by greed thus tying the hands of and misinforming our medical personnel.

I admired his conviction, but honestly, I cannot imagine risking my livelihood for someone I barely know.

Please do not assume your doctors considered the possibility of Lyme before diagnosing you with something else.

Btw we found a much cheaper alternative so don’t let that scare you.

What is a PICC Line?

Lyme Disease Easy to Diagnose

Where Does Your Body Hurt?

Where does your body hurt?

So, where does your body hurt?  Your joints, your head, your fingertips, your back?  Why are there so many symptoms of Lyme disease?

The bacteria is corkscrew shaped and can bore into any tissue or organ in your body.

Some people have neurological issues because it is predominantly in their brain, some in their digestive tract or back or anywhere from the top of your head to the bottom of your toes making it difficult to diagnose just based on symptoms alone.

Testing is super easy with the Western blot test from Igenex Labs!

When your body is hurting, all over, it is time to enlist the big guns at Igenex Labs!

Things That BITE!

Things that Can Get You!

Things that bite can carry Lyme Disease.  They do not always carry Lyme, but they can. Lyme is not restricted to a deer tick! Although, I don’t remember being bitten so I couldn’t have Lyme, right?
Well, no…other insects can carry Lyme, can they?  Also, the most likely insect that carries Lyme is a tiny little deer tick.

WRONG!

Unless it was in an obvious spot, you wouldn’t have seen it and you may or may not have had a bulls-eye rash.  50% of people *never* see the bulls-eye.  You can be bitten and have no obvious symptoms for years.

Things that bite

Happy 18th Birthday Grayce

 

Happy 18th Birthday Grayce

Happy 18th Birthday Grayce.  Another large family celebration of a child’s birthday.  Today, she is “legally” an adult.  She has definitely made life interesting.  There has been a lot of sanctification that the Lord has done on me with this child.

Facts

She is my first adopted child and only adopted daughter.  After all, I believe she is the oldest child we adopted (she was 6).  Literally, I have cried more tears, yelled at God more, clung to the cross more with this one.  Sadly, Grayce figures things out the hard way.

Listening to wisdom comes second to what she wants.  Eventually, usually years later, she figures out the lesson.  However, once she learns something she typically does not forget that lesson.  This year is no different in our large family birthday celebration of her life.  I mean, she is a legal adult now.  Gasp.

Marching to the Beat of Her Own Drum

She has a lot of lofty aspirations for life.  I hope and pray that she achieves them all.  Also, I pray that the Lord is her constant Guide and Companion throughout her years.  She is a living, breathing testimony of God’s faithfulness and protection.

Grayce enjoys family time and large family celebrations.  In contrast, she has the tendency to cause a little havoc during those times.  Sadly, there are many times she has to be redirected or step away from things.  She gets “overly” excited, as she puts it.  However, when she is in that state of escalation, she chooses to do things that are not wonderful.

In the light of things, once she calms down, she is able to safely and kindly enjoy the events.  Birthdays are hard.  Living in a large family is hard, as well.  Therefore, celebrations are even harder.  By the same token, I hope and pray that she overcomes these tendencies.

Happy 18th Birthday Grayce

May she always be aware of that and use that in the rest of her life.  With this in mind, Happy 18th Birthday Grayce to our third child.

 

Crohn’s IBS Colitis Behcets

Crohn’s IBS Colitis Behcets  Most of the “Lymies” I know have been told they have IBS.

Crohn’s Disease Symptoms

IBS

Colitis Symptoms

Behcets Symptoms

It’s on my list of medical things that have popped up, however, we’ve given it a name.  Surprisingly, we did not check to find a root cause.

For example, with Lyme, any muscle in your body can spasm.

Also, tummy troubles and Lyme go hand in hand.

Please, be aware, ask questions, do not take NO for an answer, advocate.  You are an expert on your body, do not let anyone tell you any different.

Crohn's IBS Colitis Behcets

 

Related Posts:

How To Get Tested

Callie and Her Journey With Lyme

Now It Is Time to Freak Out

Lyme Disease Corkscrew-Shaped Bacteria that Burrows

Lyme Disease corkscrew-shaped bacteria burrows. I had to post this for my “older” friends (haha)
In all seriousness why is Lyme so hard to detect?
Because the bacteria is CORKSCREW SHAPED and it twists and buries itself absolutely anywhere in your body. 🙈
As if that isn’t enough alone it creates a biofilm that makes itself invisible to your immune system.
It digs in and hides and your body can’t find it to even attempt to fight it.

Here is a link that details Corkscrew-shaped Bacteria.

Lyme Disease corkscrew-shaped bacteria burrows

Related Posts

Lyme Does Not Travel Alone

Lyme: Easy to Diagnose: Easy to Treat

Every Lyme Story is the Same

Lyme & Schizophrenia

Lyme & Schizophrenia. Who knew Schizophrenia was a co-morbid symptom of Lyme Disease. Please, if you struggle with mental illness, please get tested.

I’ve yet to meet a “Lymie” that doesn’t have the bacteria in their brain to one degree or another.

How much suffering could be avoided if a part of testing for mental issues included testing for Lyme?

We are tossing meds at people to control their “issues” but often not getting to the core of what caused them to be this way.

I heart docs that look for a cause to solve the issue instead of medicating the symptoms.

Lyme & Schizophrenia

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