the other side

We were driving home.  It had been a hard day.  It was one of those days where the roads were wet like it just poured, but the sun was shining as patches of sprinkles hit our windshield.  There were alternate colors in the sky as dark clouds merged with white clouds and you generally got the sense that the weather was battling it out.  My neck was incredibly sore after our day of treatment, and hope seemed to be resting like a rock in my gut. 

We drove country roads through both sunshine and rain while off to our right a beautiful, bright rainbow was shining in all it's surreal glory.  It seemed to beckon and mock all at the same time...I was in a MOOD.  (Is it just me, or does anyone else have those days?)

I decided to relish it rather than resent something beautiful in the midst of the storm cloud figuratively above my head.  We pulled over to take a picture, and then drove on while everyone in the car silently enjoyed the beauty.  I thought about God's promises.  That's why he put it there...to remind us that God keeps his promises.  I thought about the storm that Noah sloshed through, day after day.  I thought about the olive branch...a symbol of hope- a symbol of life.  We drove on, almost under the rainbow and then it was behind me.

The road ended and we turned a corner.  I craned my sore neck around my son to look at where the rainbow used to be, and said, "Wow."  My son said, "What?"  To which I said, "It's just crazy that you can see it from one side but not the other."  Then there was quiet, just absolute quiet in my head.  The Lord has not chosen to speak loudly to me in this season, but the few times He has, it has been absolute assurance.  I heard the gentle whisper in my heart that said, "Yes, Elizabeth, that is exactly where you are at.  You are on the other side...and you can't see the rainbow.  You are not through the storm yet, but that doesn't mean the rainbow isn't there.  My promises remain past what man can see."

No one likes to walk on the "other" side of the rainbow...the place that you reside in before the rains stop and the sun comes out to warm up the weathered earth.  I myself am speaking from a place that hasn't quite seen the sun clear away all the clouds and dry up the remnants of the storm.  Yet, I know that my God is good.  I know that His promises remain.  He is faithful, even when we walk in the places of life we try to avoid, and would never have asked to be in...the places that we dread.  For some, it may be a loss you are experiencing, an illness, a painful wound that refuses to heal in your heart or a cloud of unnamed depression that you can't seem to escape no matter how hard you try.

David of the Psalms has been in your shoes.  Job has been in your shoes.  Joseph has walked in your shoes.  They went through some big storms...and you know what they did?  They kept walking.  They kept trusting.  Like the woman in the gospels who had been ill for years, and reached out to touch Jesus, they kept their hearts longing and thirsting after a hope that they knew stretched beyond what their mortal eyes could see.  They walked on, holding tight to faith.  They did not let their hearts grow cold.

For the hurts we go through in this life, God does not waste a one of them.  Some of us will reach the other side of the storm on this earth, see the rainbow, and know the valued treasure that we attained by walking the dark spots with our Savior.  Some might never see the rainbow until heaven, when they see the full scope of their life, and the purpose behind every trial the Lord allowed them to journey through. 

But lets walk on, dear saints.  Let's keep trusting and holding onto Jesus when the drops keep falling and we don't know why.  Let's defy the defeat that longs to take hold on our heart and instead, claim the promises of Jesus in faith- not because we can see how things will all come together, but in spite of it.  That's what makes faith so precious...it is based on His ability, His faithfulness and righteousness, not our own.  You have a strong tower, and a rock to hold you firm and secure.  He is a light in the dark and a defeater of all that is evil.  We don't need to pretend that we are not in a storm, and we don't always have the strength to run and leap with joy in middle of the storm, but we can quietly and humbly walk on.  So let's do it.  (Even if it looks a bit more like a hobble.  We can just be hobblers.  It still counts.)

"I am still confident of this: I will see the goodness of the LORD in the land of the living.  Wait for the LORD; be strong and take heart and wait for the LORD."

Psalm 27:13-14

My oldest son, Eli, took this picture for me out the car window.  No filter, just God. 

treatment: week two

Here it goes...week two update!  I have to start by saying that it is difficult to be this open and honest about my symptoms without feeling like I just posted a whole page of complaining.  If you are reading this and are fighting Lyme, you will understand and maybe find some validation in the symptoms you are having.  If you are reading this as a healthy person, please read it as a window into the days of a once-healthy person...a journey that has to be treated with humility and honesty.  I was "that person" not too long ago, who pushed past weakness and fatigue, and I would rather "do it myself" than ask anyone for help - because I didn't need help and because I wanted it done MY WAY.  Until one day I just couldn't... and it shocked me.  These words are not just a reflection of my symptoms, it is peeling back my layers of pride to let friends and strangers alike into my world of Lyme.  It is written not to request sympathy or to highlight moments of pain, but to bring awareness to those not suffering with it, and to bring hope to those who do!  This week you are about to read about was a bit of a downer, but there is a good week coming!!! (I am actually a week ahead in treatment of every one of these updates.  And by the grace of God, I hope there will be many more to follow.)  So bear with me through these posts that don't seem to bring much hope...there is a bigger picture being weaved, and I can't wait to see the whole story....in time. 

The daily dose this week!

Day One:
Feeling physically tired.  Trying to rest and drink more water than I have been. 

Day Two:
It's ozone/bionic day....
320 cc RI
1 scoop alkala powder immediately following
1 hour in hyperbaric oxygen chamber as quickly as I can, following RI
Bionic: 10 points with borellia nosode
I also tried five minutes of ozone ear insufflation. 

Physically:  Headache that is constant, physically heavy and exhausted.  Noises were overwhelming to me today, I felt major brain fog and mentally overwhelmed- feeling a little crazy and needed quiet.

Day Three:
Today is IV Day.  It was the first day of using lymphostat in the IV and I am at 10 grams of vitamin C, plus the other minerals/vitamins listed on my IV protocol page. 

Physically:  Really tired- sleepy tired, not just body tired.  I grocery shopped and came home to a clean house (Thank you to those of you who blessed me with this!  You know who you are.) so I was able to just rest for a while.  Later that day I felt eye fatigue/pressure, irregular heart-beats and constant low-grade knee pain.  I cannot lay in bed and hold up a book or my phone without my arms going numb and my whole body feels heavy.  Mentally I feel like I am trying to think past a major brain fog (reminds me of after my C-sections being on medication that made me feel delirious).  I have low back ache and neck pain. 

Day Four:
No treatment today.  Around 2 pm I felt dizzy, floating and intense knee pain and body aches- felt absolutely awful.  I was "loopy" and ready for sleep by 6 pm.

Day Five:
Ozone/Bionic day...
320 cc RI
1 scoop alkala powder in water
1 hour in Hyperbaric Chamber immediately following R.I.
1/2 dropperful of Artemisia Annua (from Herb Pharm) to start combatting Babesia co-infection in 1/4 cup of water around 4 p.m.

Physically: Head-ache in forehead region to the top of the skull (feels like pressure), eye pressure and "off."  Tired, stiff neck that worsened throughout the day.  Limbs feel heavy, I have a tired and achy "buzz" all over my body, knee pain, muscle pain, fighting off feeling angry in general.  Was still able to get up and function though (make dinner etc.)

Overnight: had a herxheimer reaction (maybe to the Artemisia that I used for the first time).  I felt an increased aching in my body all over and a few twitches in my side, then noticed pain in my lower spine - the pain had been deep and migrating all day.  Then my body went into waves of spasms originating from my core like the previous few times this has happened.  I have noticed that this happens at times when I am in the most pain.  I am unsure if this is an automatic response that my body is doing because of pain, or if it is a lyme-specific neurological response due to the neurotoxin die-off process. 

My pain in general is not so bad on a minute to minute basis, but becomes overwhelming in the amount of unrelenting pain hour by hour, and when it increases even just a bit all over, it tips me over the edge of reasonably coping.  Thankfully, sleep comes and I am truly restful most every single night.  I am so thankful to not be dealing with insomnia like some lyme sufferers I know (so sorry for those of you who do!).

Day Six:
IV day....
I am still at 10 grams of vitamin C along with the other ingredients in my IV bag.  The morning went well and I started to feel the familiar head-ache in the front of my head through the top of my skull, almost like pressure and tightness, not so much a throbbing sensation.  I feel sweaty today, and totally fatigued both mentally and emotionally.  I also had brief spells of ringing in my ears.

Day Seven:
I was so physically sore and in pain last night before going to sleep that I tried not to move.  I had another minor case of twitching but was able to go to sleep fairly quickly and it only lasted five minutes.  Today I am doing okay, just have a sore neck that radiates down the spine, almost like I slept wrong on my neck.  I am able to be up and function but am still resting a lot today.

IV days with a loved one's company is always a welcome blessing!  This is my sister-in-law, Stephanie, that has been a constant source of encouragement and gift of friendship...she is walking with me along some crazy roads!  #IWillPayForYourCounselingSteph  #SheEvenLaughsAtMyJokes  #SheJustGotHerSonThroughLymeAndNowSheHasMe 

I want to note some updates on our protocol (and I am continually updating "the mostly german protocol" page here).

I will not be taking the lymph/spleen supplement on ozone days because it has vitamin C in it, which is supposed to be avoided on ozone days (it will render the ozone ineffective). 

I am ordering in cilantro (Herb Pharm) to further assist in detoxing, especially heavy metal detoxing. 

I will wait on trying to treat babesia (and other co-infections) until I am further into my lyme treatment (Maybe another few weeks) so will not be taking Artemisia Annua for a while.

I have also added more supplements.  I bought "ProFerrin" from my doctor for my low iron levels, and some "Complete Omega-D3" from Nordic Naturals, along with Alpha Lipoic Acid (my doctor recommends 200 mg/three times per day). 

I am continually recording in my treatment journal all of the kind words of encouragement from friends/strangers/loved ones and it truly helps to keep a light shining in the dark.  I am so blessed and strengthened by all the support big and small.  Even though I would never ever by choice be where I am at right now, I know that my Creator is molding and sculpting me through it (namely He is ripping off  big patches of pride that I wore like a medal around my neck with the words that said, "I can do it myself!").  And he is teaching me how to graciously receive...something I still don't like, (haha) but am so deeply thankful for.

Here's to all you who fight!

I have loved this song for a few years now and was surprised one day to hear how it originated.  The "for King & Country" band wrote this song for their sister who was diagnosed with Lyme at 22 years old.  She went through some dark times, and this was their message to her.  Hear the full story here.  I am so encouraged by this song that reminds us, "IT'S NOT OVER YET...TO EVERYONE WHO'S HIT THIER LIMIT - IT'S NOT OVER YET.....IT'S NOT OVER YET!  KEEP ON FIGHTING, OUT OF THE DARK INTO THE LIGHT...HOPE IS RISING, NEVER GIVE IN NEVER GIVE UP, IT'S NOT OVER...YET." 

celebrating the small victories

I will update our week two soon, but I just had to give a quick shout-out to those of you with Lyme who are watching this German protocol process.

Today I am on week three, day four of treatment...and I woke up without pain.  I was skeptical at first, waiting for the typical tired (like I've been hit by a train and then run over) to plague me, and the head-ache that has been fairly constant in my forehead the last three weeks to make itself known.  It didn't. 

It's very hard to explain, but I feel like the mental cloud that has made it's home in my brain lifted just a little bit today...enough for me to be aware that it's there, and to see light on the other side.  I don't mean just an emotional cloud of darkness lifted, but there was actually a cognitive ability that I have not had previous- I did not have to labor as hard to think through my grocery shopping list, where I had to go next, and what pills I needed to take today.  Besides the mental status, I feel hope in my heart because of the glimpse of health I see in my body.  Today I didn't have my heart pounding and feel dizzy after bringing my groceries to the car.  I did not feel desperate to get home.  I forgot what it felt like to be healthy, and I didn't realize how far I had fallen.  This makes me sad, but also extremely THANKFUL. 

So even if tomorrow, on Thanksgiving, I crash and am achy and exhausted, that is okay.  I know I will have good days and bad days on this journey...I am not ignorant enough to think I am fully healed today, or assume that the darkness will not come back tomorrow.  Even now, I feel some of the "tired" descending, after a day being busy, and my left knee is doing that familiar ache that I have gotten used to and typically ignore.  BUT, I know something is happening...a bit of my "normal" is coming back.  I am more sure than ever that we will continue to press on and see where we stand at week 12...and I will be thanking my Jesus all the way. 

Here's to some health and healing ahead!  (Thank you Levi, for always helping me keep my laughter.)

Lyme testing 101

If you or someone you love has been newly diagnosed with Lyme Disease, your eyes might glaze over when you hear new words and phrases such as, "IGeneX testing," a "lyme literate doctor," "co-infections," "borellia burgdorferi," "bulls-eye rash,"  and/or "positive bands on the western blot test." 

This post is meant to be informational and it should not take the place of any medical advice you have received from your doctor.  That being said, I have tried to assemble some of the typical questions I hear from people new to the lyme world and/or those who are just wanting more information.

Q: What do I do if I think I might have Lyme?

A: Lyme is called the "great imitator" because many people with Lyme Disease are mis-diagnosed with other ailments such as MS, rheumatoid arthritis, lupus, auto-immune disorders, cardiac issues, thyroid and adrenal fatigue and mental illness among others.  One option is to search online for a diagnostic check list of symptoms.

Q: What if I don't remember being bit by a tick and/or I was bit by a tick but I never got a rash?

A: Based on information taken from the ILADS website (International Lyme and Associated Diseases Society) less than 50% percent of those infected remember being bit by a tick.  Infected ticks can be very hard to see, commonly only the size of a poppy seed and they inject a numbing agent, so the host typically cannot feel the bite.  In terms of expecting a bulls-eye rash as a definitive sign of infection, you cannot rely on that either.  The same research society states that less than 50% of people diagnosed actually had a bulls-eye rash after their tick bite.  In some cases, it is very hard to detect even if it is there, like in the hairline, a very common place for ticks to attach. 

Q: Is it true that it can be transmitted in ways other than a tick bite?

A: Yes.  Lyme disease is caused by a spirochete organism infecting the human body.  There are three species: B. burgdorferi, B. garinni, and B. afzelli, but these are commonly grouped into one category: borellia burgdorferi.  It is a bacterium that takes up residence in the host body and can be transmitted not only through the bite of an infected tick, but from mother to child in-utero, through breast milk, sexual transmission or through blood transfusions.  Other forms of transmission include mosquito's and spiders.  Scientists have come out with fascinating studies that show spirochetes existing in these arthropods.

Q: Who is at risk?

A:  The answer is- anyone.  You can get Lyme Disease walking in a city park or from your lawn just as easily as you can at your favorite vacation spot or in the rural area you live in.  As a whole, children are more susceptible (because they are low to the ground and tend to be on the ground more often) but so are wild land firefighters, park rangers, outdoor sports enthusiasts, hunters, ground/lawn/tree care individuals, etc. Those at an increased risk include anyone who has had sexual contact with someone who has Lyme, anyone who has had a blood transfusion or has a mother/close family member with Lyme or suspected Lyme disease.


Q: I can't afford to get tested.  What do I do?

A: Go to This site for more information about financial assistance.  Based on your family income, you may qualify for assistance.


Q: I think I need to get tested.  What is the next step?

A: Go to the IGenex, Inc. website.  Click on the contact us tab.  Call and request a test kit.  (1-800-832-3200)  They will send it to you for free.  It comes with a pre-paid FedEx envelope, the vials needed for the blood sample and all the paperwork you need.

This is your kit.

Take your test form to the physician that will be signing off, agreeing to have you tested.  Depending on your physician, some will not even agree to this.  If you are not able to work with your primary care physician, IGenex, Inc. will accept a lab request from any physician, including a pediatrician, acupuncturist, chiropractor, optometrist, or naturopath.  A Lyme Literate doctor (called an LLMD) is also a good option and you can find one in your area by going to the ILADS website for a physician referral.

You will then take your kit and signed paperwork to the blood draw facility of your choice on a Monday, Tuesday or Wednesday (so that it gets to IGenex, Inc. during open hours).  The lab will read the instructions printed for them and when the specimen is done being processed, you will pack the FedEx bag with necessary paperwork, your blood sample and send it off in the pre-paid envelope at a FedEx location on the same day as your blood draw. 


Q: Why should I go through IGenex, Inc.?  My doctor said that they could pull a western blot (elisa test) and it might be covered better under my insurance.

A: Courtesy of the ILADS website: "The elisa screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity."  IGenex, Inc. states that they are "a reference laboratory that uses state-of-the-art clinical and research testing for Lyme disease and associated tick-born illnesses."


Q: I see that IGeneX also tests for co-infections.  Should I get any of those done?

A: If you are already collaborating with a Lyme-Literate physician, they will have great information for you.  If you are flying solo and trying to find a doctor who will sign your IGeneX request form, I personally would only test for Lyme (lab request numbers 188 and 189).  If you end up having Lyme, your LLMD will discuss co-infections with you and determine a course of treatment/testing. 


Q: I have already been tested for Lyme and it came back negative/and or I have already been treated.  Is it worth it to get tested again?

A: LLMD's are aware of something called chronic lyme.  This happens either after someone has taken a round of antibiotics to treat lyme but symptoms return, or the period of time that passes after the initial infection, and lyme begins to run rampant in the host body.  In either of these cases, if you did not have an accurate test through a reputable laboratory, my non-medical opinion is that it is absolutely reasonable for you to get tested again. 

Q: What is the cost?

A: To run a basic lyme diagnostic test, my LLMD used options 188 and 189 on the IGenex order form.  This shows a Western Blot IgM and a Western Blot IgG.  Each test is $105, so the total to IGenex is $210.  My lab also charged a $25 draw fee.  I submitted a claim form through my insurance company once I received my receipt in the mail from IGeneX (expect it in about three weeks after you send off your sample) and my insurance ended up paying for half of my test fees. 


Q: When can I expect my results?

A: IGenex states that you will typically have your results within three weeks.  They will be faxed to your referring physicians office. By law they cannot give you results over the phone, but you can call when you send in your kit and request a copy sent to you by mail.  I always recommend this.


Q: What do I do once I receive my results?

A: This can be a very confusing process.  The first thing you need to do is bring it to a LYME LITERATE DOCTOR who can read not only the CDC and IGenX conclusion, but understands how to read all the band findings listed beneath.  (To find a LLMD, refer to the ILADS website under contact>physician referral).   Here is another great website that helped me make sense of my test results while I was waiting to get in to my LLMD.  These websites listed are not at all purposed to be a diagnostic tool- please refer to an LLMD in your area for health and diagnosis recommendations. 

Q: My LLMD has told me that it is positive.  I have Lyme Disease.  Now what?

A: First, I am sorry.  Many have walked this road and are walking it with you.  The good news is that many ailments you have struggled with may now have an answer.  There are many different options of treatment out there, and everyone seems to know a way to cure it.  It is varied, from oral antibiotic use, to IV antibiotic, Rife machines, magnetic devices, vitamin therapy, ozone, essential oils, herbs, homeopathy and the list goes on.  Guard yourself from getting overwhelmed with options.  Pray about it and once you have done your research, go with what you feel led to do.  Finances can be a huge factor in considering treatment, and I know the burden that issue alone carries with it.  For me, I decided on a specific protocol, based on treatment results (Specifics listed here).  We will continue full steam ahead, and do our best to keep a positive attitude and expect healing. 

Surround yourself with a good support group and focus on basic health while you are preparing for treatment.  Get on a good probiotic, maybe even some methylated vitamins and consider going off of gluten and possibly dairy too.  These two food groups are the biggest culprits in exacerbating inflammation, which you will want to avoid.   Definitely avoid alcohol and smoking/nicotine and be kind to your body.  You may need to make some big changes in your life to accommodate this.  Your body will need rest, and don't feel shameful for that. 

Journey on, and from one lymie to another, "keep on keeping on."  Don't give up!  :-) 

treatment: week one

Week One:

Hyperbaric chamber use prior to week one:

6 hours (6 sessions- 1 hr. each)

Nov 6, Sunday: got really sick after eating food over a weekend away that I usually doesn’t eat, (my fault).  Vomited through the night and was close to losing consciousness every time I stood.  Had intense jerking of the body (I could not control it) but coherent for all of it.  Was able to keep fluids down by morning and use of the bionic (without a nosode) aimed at my abdomen where the twitching seemed to be originating from eased symptoms.  9.77 hz, 630 seconds on abdomen, then five points: right/left wrist, right/left ear, forehead.

Nov 7, Monday:  I was able to stand and walk, feeling better.  spent one hour in the Hyperbaric chamber to prep for the week.

Nov 8, Tuesday:  First day of treatment. 

IV fluids:

600 mg Glutathione (push at the end of IV)

1000 mg Vitamin C

1,000 mg magnesium

Trace minerals combination of zinc, copper, manganese, chromium

Nov 9, Wednesday:

Took an enzyme test to verify our bodies can process high dose vitamin C. 

OZONE:

60 cc rectal insufflation followed by 1 hour in the hyperbaric chamber

BIONIC: used with lyme nosode-  10 points, 11.77 hz, 330 seconds each point

Supplements: Detox protocol and also added in Alpha Lipoic Acid 200 mg/ 3 times day

Symptoms: I sweated through one shirt this night and woke with knee pain several times that night. 

Nov 10, Thursday

IV Treatment #2-  I am tired after treatment this morning.  Battling a low grade headache

Dr. has ordered in Lymphostat made by HEEL, a German brand that helps detox.  We will add that in on IV days, although German protocol uses it on ozone/bionic days via IV. 

Symptoms: irregular heartbeat, fast then skips.  Lethargy, mild head-ache, feel angry, eyes hurt, sweaty

Nov 11, Friday

I sweated through two shirts overnight and changed twice- a cold sweat.  Still sweating today and not feeling well due to intense cramping.  Used Aleve all day.

Nov 12, Sat

Liz- 1 hour Hyperbaric Chamber

Symptoms: Exhausted and achy 

the donkey trot

November 18, 2016

At the start of a training run, I have a goal.  I set the distance, and usually I decide I will run it at my normal pace…an 8:30 minute mile.  Not the fastest, but I can run like a sturdy donkey at this speed (smile)…I know my body can keep on keeping on if I keep this pace.  So I begin.  But something happens in the first mile or two as my muscles get cranking (I like to just start running and I always nix any warm up).  I think I need to quit.  I think maybe my lungs aren’t up for it and “why does it feel so much harder today?!” But I tell myself, “just a little longer.  Don’t stop yet.”  Because I know what is coming.  I will break through that wall, my body will pace itself and mile three goal could turn into mile five.  I will get in a steady rhythm of breathing and my legs will find their stride as they take me yard after yard down the road.  I love that feeling, like I could run for days and come back home, tired but soul refreshed as I listen to praise music and enjoy the beauty that God as gifted me with all around. 

So, I think I am in the first 400 yard stretch.  We are two weeks into IV’s and it takes my breath away that we have only come that far.  I am not sure I can do it.  My body is so tired, my veins are not healed before I am back in for another treatment.   I am gasping for air but I am only 400 yards into my three mile race!  I know we can do it- we have to do it.  We will do the only thing we can do…take another step.  We will take each miserable, terrible step filled with desire to turn back around and side-step the other runners.  I know they are out there…I know a few of them myself.  We are all in a race that we didn’t sign up for and each one is desperate to find a way out.  If only we could cross the finish line without all the painful miles we will have to show for it.  If only our coach could tell us definitively that all these miles will prove worth it because the finish line is really there- complete healing.  But each “coach” defines victory a different way, and most would call remission a “victory.”  But it is only a victory for how long? A month?  A year?  Two?  Until the race is back on and you didn’t even know you were running again.  And what about those of us who run our race and drag others along with us?  Willing them to have the strength to keep up- our children, our family, our loved ones too precious to leave behind. 

Yes, we will run this race.  It is worth every step forward, because it is one more step you are choosing not to take backward.  It is sometimes more important to do something to keep you in the FIGHT than it is to make sure that you are moving forward.  We must not give up hope, and not let apathy become a companion.  We cannot see the finish line when we are not even clocked in at mile one yet.  But that doesn’t mean the finish line isn’t there.  Keep on keeping on.  One step at a time.

October 5, 2009
My man and I after the Portland marathon.  He is the unsung hero in much of my story, past and present.  He was so supportive of all the hours I spent training (he even rode my pink bike beside me on multiple long runs, LOL) and was so sweet on race day! Thanks, baby- I am so blessed by you.

journal entry from November 3

Nov 3, 2016

So, our treatment starts in less than a week.  It is Gods precious kindness to us…a miracle.  I should be excited and absolutely silence-struck with how all this has come together.  And I am, in a quiet and deep way, like the quiet of deep waters.  But in my heart, I am conflicted.  Because this is where it gets real- where I either sink or swim. 

I am terrified.  All these months I have held out hope for treatment, knowing it was the best chance of having our family back and having hope back.  Now we go through treatment and it either works...or it doesn’t.  My heart cannot take any more ache, my body cannot process any more trauma.  My brain refuses to work, yet I will be in charge of my many pills, treatment protocol, and trying to hold it all together. 

I cannot imagine feeling the way I do on my “bad days” for six weeks.  Or even most days of those six weeks.  I am terrified that I won’t be able to function, and I long to hold on to control- hold on to my pride of being able to do things my way, by myself.  On my bad days, I am incapable of doing much except surviving until I wake up a new day.  I feel like we are in a prison with chains others cannot see, but they hold us taut every single day and affect every single aspect of our lives.  Our diet, our energy, our ability, our finances, our fellowship, our daily schedule and it constantly struggles for dominance over our attitude.  These waves feel like they will swallow me whole.  Every day I fight an invisible battle that I cannot possibly put into words for anyone else to understand.  The shadows are too dark and too vague to outline- they overlap each other until they are not individual shadows, but one big ominous sky overhead.  I struggle to let God’s light shine…he holds my hand and walks me through the dark, but he does not part the clouds and overcome the shadows.  They remain.  He tells me to walk on.  I cry and tell him I can’t.  He can’t possibly expect me to.  And yet I live another day- His sun rises on a new morning with new mercies…and I am still here.  

So I walk, praising my creator as the storm presses on. 

it all started in 2012

I began to get sick in the summer of 2012.  We had just gone through a very stressful season in our family and by the fall of 2014 we had moved 4 times in 3 years.  At the end of this post, I will share a symptoms list- it  is long.  This is a cumulative list that piled up over the years.  I am posting everything that I had noticed but had chalked it up to low adrenal function and passing the age of thirty.  (haha.)  Although I experience a lot of these symptoms on a daily basis, I do not experience all of them every day or every week.  That’s a large part of the reason why it took me so long to test for Lyme, even though I was beginning to be aware of the symptoms.  Lyme is so vague and tricky.  If you research online, it is called “the great imitator” for a reason.  I could feel absolutely sick one day and then be out running hills the next.  I could never quite put a finger on what was wrong with me, but I told my husband quite often with tears running down my face that “they” are missing something, “something is not right.”  That went on for four years, while I went on to be in treatment for adrenal fatigue and a thyroid that kept sinking lower as my medication climbed higher.  The final straw that convinced me to get tested was when I started having symptoms of deep and unrelenting pain in my hand and my once capable arm could no longer open a twist can of jam.  I would never have answers had I not just watched my sister-in-law who happens to be one of my best friends, travel the Lyme road with her son, Ryan.  I was honored to be in Germany with them and see the treatment facility he was at.  So, when it was time for me to get tested here in the states, she graciously walked us through every step and is still walking in those dark shadows with us, helping us find our way out.  Lyme people need that…someone to champion them along and tell them that recovery is possible.  I hope and pray to be that person to others someday.  We are giving it all we’ve got and expecting blessed healing.

So, here is the symptom list.  (Maybe some will sound familiar to you.) I am not breaking it into categories, I am just writing it down straight from my note sheet that I had to bring with me to the doctor’s office as I tried to recall what I was supposed to say when she asked me “why I was here.”

(This is the blood panel that was ordered after that doctor appointment)

Extreme fatigue

Sweaty at random times

Anxiety

Drenching night sweats

Nausea, especially at night

Ear ringing

Hot flashes

Vision flashes

Achy- constant and worse at night,( like a case of the flu) migrating from hand to leg then other leg etc.

Occasional deep stabbing pains in random body parts lasting for seconds, then leaving

Hand pain in joints, burning at times

Weakness with grip

Heart flutters

“Shaky” all over

Neck stiffness

Headache, tightness

Struggle with feeling hopeless

Feel overwhelmed

Have to fight off confusion, don’t know why

Loss of consistent thought ability

Inability to multi-task

Heavy arms and legs- feels like I am walking through mud, lifting 50 pound weights

Decreased exercise stamina, get dizzy and faint

Arms go numb while driving or trying to hold my arms up to read a book in bed
Memory loss- short and long term

Must use calendar and lists to remember anything

Need for sleep, even after a full night’s sleep

Feel like I am losing my mind

Sad and unexplainably overwhelmed by life

Sudden bouts of needing more oxygen while laying down, but breathing fine (called "air-hunger")Anxiety over more than one event in a day

“barely hanging on”
Consistent knee pain that throbs and aches deep (has felt like a sports injury from running hills, but consistently gets worse even with rest)

Low thyroid (keeps dipping)

Low cortisol (keeps dipping)

Increased bruising, possibly due to clumsiness

Eyes feel heavy, have to close them sometimes

Highly light sensitive
Thought I needed glasses, vision is blurred at times but vision screening is normal

Dairy intolerance (one week of deep stabbing pain in intestines if ingested)

Low blood sugar (blood tested at 51 mg/dl in 2014 and 78 mg/dl in 2016)

Occasional brief confusion while driving (forget where I am supposed to be headed next)

Can’t make fast decisions, have to work hard to “think”

Loud noises make me angry and anxious- like everything in me is on high alert

Problems with face recognition after meeting new people

Can’t hold conversation: processing information and talking especially at a fast pace confuses me…this makes me a bit socially awkward (LOL)

Have episodes of feeling that I might lose consciousness

Very low vitamin D levels

Very Low iron levels (iron infusions were recommended)

Various UTI infections (previously have never had any)

Kidney pain, consistent even after we confirmed that there is no infection

Body pain upon standing after sitting on floor or criss-cross style, I limp until my joints get moving again

Sometimes with loud noise/chaos coming at me I have to cover my ears and close my eyes- feel crazy

At times I am unable to verbalize simple things.  Words get caught as I can’t dredge up what to call “that thing in your hand…(a cup)” as I am trying to instruct my children

Greater difficulty at math…scratch that- impossibility. Haha.

Bouts of anger that I later feel was a complete over-reaction

My words don’t always match what I am trying to say, like it’s a bit disconnected

Also sometimes feel disconnected from reality- recalling memories feels like recalling a dream

Head-ache’s that feel like sinus pressure

Twitching, ranging from minor muscle spasms (I can see my muscles twitch in my leg) to convulsive movements that move my whole core/legs/arms mimicking a small seizure but I am coherent the entire time…this is a more recent symptom

Emotionally usually either “low” or “numb”

Swollen glands by thyroid, swallowing is strained (two year symptom, sometimes worse or better)

Sore throat often, often have to clear throat

Decreased hearing ability, fluid in ear drums

I had all these symptoms but thought it was just adrenal fatigue and a period of stress in my life.  I figured that every mom is tired, and I just had to press on and keep taking my supplements.  So many symptoms became so normal, it was not even on my radar anymore.  I was under a physicians care and cancer tests came back normal, so I thought I was checking every box I needed to worry about.  Lyme imitates many different conditions that doctors can diagnose, yet the underlying cause - or "root" of the issue does not get confronted.  I am so relieved to know the root of my symptoms and work toward true healing.  Once Lyme had really taken hold and took my immune system down (Spring of 2016),  I declined really fast.  For anyone who has symptoms similar to Lyme symptoms (do a search online), I always recommend a preliminary screening for Lyme.  Check out the link here.

 

At the treatment center in Germany with my nephew, Ryan, while he went through treatment for Lyme Disease
A shout out to my dear friend, Michelle, who traveled to Germany with me