treatment: week six

This will be a quick update on week six.

DAY ONE
ozone and bionic day....400 RI followed by one hour in hyperbaric chamber.  Bionic with babesia and borellia nosode, 100%, 11.77 hz, 330 seconds, 10 points.  (I did not record any info about physical symptoms this day)

DAY TWO
High dose vitamin C day.  Today after the IV I felt so incredibly tired and exhausted- also felt very emotionally heavy.  I had a few good days and it was hard to feel the cloud descending again.  Thankfully, it didn't descend as heavily and after laying down for a few hours, I was able to function a bit and go to bed tired that night.  My most notable symptom was that my left knee hurt.  When I walked, it felt like an injury and I felt that if I put weight on it, it would bend backwards or buckle beneath me.

DAY THREE
I woke up with joint pain, but I realize that I am remembering things!  Little things like dates I need to remember and things on my to-do list are no longer fleeting whisps of thought that cannot be contained.  I used to have to write something down (like an event on my calendar) immediately because for the life of me I did not have recall of facts or information.  I could not will myself to remember or berate myself enough, or repeat it enough times to remember.  This caused anxiety within me, and I always felt that horrible sinking feeling that I was forgetting something.  I would second guess myself that I turned off the stove, or I would be sure that someone was counting on me to be somewhere and I was a no-show.  It was a constant anxiety within me, knowing I was not really capable, and for someone who thrives on structure and an element of control over oneself (lol) it is yet another burden to bear daily in the lyme spectrum.  (It's one of those bullet points below a bullet point of symptoms that is hard for a lymie to describe.)  It is such wonderful normality to realize that I have my brain back on these days of light and clarity!  The point of all this is...I am making less of my own chaos!  (Just one example: Like at the grocery store I now recall what I need to buy...it helps when you don't need a list because when you have no memory, who can remember to bring the list?  #MakingMyOwnChaos)

DAY FOUR
ozone and bionic day
400 cc RI followed by one hour in hyperbaric chamber.  Bionic 880 at 100%, 11.77hz, 330 seconds, 10 points with the babesia and borellia nosode.

I got a headache at 2:00 but overall feel better than I have in weeks.  The headache could be attributed to the cryptolepis and artemisia I am taking to help combat babesia.

DAY FIVE
IV vitamin C today.  Although the severity of my symptoms is lessened, I felt legs, knee and feet pain today.  My headache was in the front of my head in my forehead region, but again, seemed less intense.  Almost like turning the volume on the stereo down a bit...it's still there but there is more room to function around it.

DAY SIX
My kids were with daddy all day so I had some time to spend all by myself.  The exciting thing about starting to feel my body healing is that I have energy for more than just getting through a day.  So today, it was a battle between resting and hoping for a surplus of healing, or getting a few projects done that were on my mind.  The projects won!  I had energy to buy some racking and assemble it in our attic and got one little section cleaned.  For an organization junkie like me, I felt like I had basically celebrated Christmas early.  Not only because I was able to complete something strenuous and more than the basic survival of another day, but because for me, it meant the real me was coming back.  When you get sick, you begin to lose the fight and it's almost like my vision clouded over.  I kept up on the daily's like laundry and dishes, and kept a clean house, but my standards for myself had narrowed to just the basics.  Just the bare minimum to function and look a little presentable.

In addition to organization sucess, today was a victory not only because I had the strength and the brain space to organize an attic but.....wait for it....I followed the directions to put the shelving together!!!!!!!! (insert balloons while pomp and circumstance play for me)  Having to follow assembly directions was akin to solving nuclear math for me (can I get an amen from someone) and I used to quit before even starting.  My brain would not make sense of it (refer back to day three memory issues and picture Dory from Finding Nemo following five step directions.) I listened to pandora's "music for studying" and conquered the Chinese pictograph to assemble my shiny new racking.  I fought, and I won!

Afterwards, I had time to rest and enjoy the glow of a clean, quiet house with a lit Christmas tree and felt all the beauty of hope in my heart....hope of the reason why we celebrate the Christmas season.  I am reminded that while I seek to find my own level of perfection in this season of beauty, that Jesus Christ was born in a stable beside animal breath and the smell of earthy hay.  Yet all of the heavenly light embraced the perfection of Christ in human form.  A critical eye would see all that Jesus didn't have- but the eternal perspective would see why wise men and shepherds came to an animal barn to adore the King of Kings.  I want to be a shepherd, and look past the imperfection to see the eternal.  I want to be a wise man and bring Christ what I can, even thought my small gifts are humble and few.

To all my Lyme friends, and those who struggle with chronic illness...may you celebrate mightily this Christmas season with your family, in whatever circumstances your life finds you in.  May you sort through the roughage and fluff and grab hold of the eternal...and treasure it in your heart, like Mary did as she gazed upon the Son of God, the heartbeat of the world.  May our hearts be humble enough to hear the angels proclaim, and tender enough to fight off doubt and cynicism about the truth of the message.  May we, like the Shepherds, journey past our present circumstances and frailties, and press on until we are at the feet of Jesus.  If all you have the strength to do in this season is sit at the feet of Jesus, that is enough.  May He be your strength and your hope.

I wish you a Merry Christmas from my family to yours!

Hannah's story

I have had it on my heart for a while to speak to parents...specifically to talk about what Lyme disease looks like in a child.  I am beginning a series of posts that will share parents stories- real stories of real kids in the United States that are sick with Lyme.  I will share my own story of how we found out my boys were positive for Lyme when I have the words for it. Eventually.

My heart is conflicted as I post this.  It is heavy because it is yet another heart-breaking Lyme disease story, but also I am so deeply humbled and honored that a fellow mom has allowed me to share a window into her child's life with Lyme on this blog.  (A., I think you are brave.  Thank you so much for your willingness to be vulnerable in sharing this with us.)  

I would like to introduce to you a family residing in Ohio, whose fifteen year old daughter is fighting Lyme.  My words will be few in this post because I want to give them the floor to share what their Lyme journey has been like.  So here is their story, in their own words.  

"Hi, I'm Hannah! My mom and I are here to share my story and spread awareness about Lyme Disease. 

I'm not sure exactly when I got Lyme Disease. I don't remember getting a tick bite or a bullseye rash. On Easter 2014, I got a headache that ended up lasting 5 months. My symptoms before this were mild (dizziness, fatigue, anxiety, depression, nausea and stomach issues) but still troubling. 

The Easter headache led us to neurology. Despite all the blood tests and MRI's coming back normal, I was put on many medications, given IV infusions, and a nerve block. None of them helped my symptoms. I was referred to an eye doctor and received glasses. When summer came, my headaches disappeared. We assumed either the glasses were helping or the headaches were caused by stress. 

I started running Cross Country. The more I ran, the worse I felt. I started to experience more symptoms such as: joint pain, fatigue, muscle weakness, dizziness, vertigo, headaches, nausea and TMJ. My freshman year had begun, we were still searching for answers. At the end of September I got a concussion in gym class. This complicated everything. I was sent to a physical therapist for ocular motor therapy. I had to quit Cross Country and all after school activities due to my symptoms. The TMJ symptoms I mentioned earlier, brought me to a chiropractor. She was unable to help so she referred me to an occupational therapist that does cranio-sacral therapy. 

I was also developing heart related symptoms. Chest pain and shortness of breath landed me in the ER. My chest x-ray and EKG were normal. To be safe, they referred me to a cardiologist. Right after this incident, I saw PT for the first time. After describing my symptoms, he seemed to know exactly what is wrong with me. He said I have something called POTS. POTS stands for Postural Orthostatic Tachycardia Syndrome. Basically this means that when I stand up my heart rate increases at an unhealthy rate. POTS is a problem with the autonomic nervous system. We thought we had it all figured out! boy were we wrong... At our first visit with cardiology, we mentioned POTS. A tilt table test (my least favorite thing throughout this whole experience) confirmed the diagnosis. Over the next few months, we experimented with many different meds but all of them seemed to make me sicker. UNTIL, my magic med, Clonidine. I was still symptomatic but it helped me more than anything else we had tried. During this time, I was missing a lot of school and found it difficult to keep up. My teachers were very understanding and helped me through the rest of the school year. I finished the year with A's in all my classes! 

Before I had a diagnosis and even now, I am doubted by many doctors. They repeatedly send me to psychology for therapy. It never has never helped because I have a physical illness!! Since I wasn't getting very far with traditional medicine, we decided to see a neuropathic doctor. He put me on a lot of supplements (30 pills per day), changed my diet and did more testing. We had been looking for the cause of my POTS since I was diagnosed. We realized that I have most of the symptoms of Lyme Disease. The neuropathic doctor agreed with us. We ordered a Western Blot Lyme Disease Test from IgeneX Labs. Waiting for the results was the longest 3 weeks of my life! While we were waiting for results, I saw my rheumatologist. She said that she could tell by looking at me, that I don't have Lyme disease and that I would never be pain free. She infuriated me and made us second guess ourselves. Two days later, we got the results and they were positive. We were all relieved and scared. 

Since then we have been slowly adding more herbal supplements to begin my Lyme disease treatment. I had to quit public school and I'm doing online school. 

I am doing well but I really want to go back to public school next year. 

I am taking multiple supplements to make my body stronger and help my immune system. I tried taking supplements for my Lyme disease but they made me sicker. I could hardly eat when I took them. I had lots of nausea, stomach pain, and weight loss. I also developed an ovarian cyst that burst. We stopped the Lyme supplements for a couple weeks and start back up after the holidays.

Here is her list of symptoms:

Headaches/ migraines 

Anxiety 

Depression 

Dry mouth

Dry eyes

Insomnia 

Difficulty Swallowing 

Swollen and sore Lymph nodes

Nausea

Nightmares and vivid dreams 

Loss of appetite 

Dizziness

Vertigo 

Blackouts

Numbness and tingling 

Burning and stabbing skin

Skin sensitivity 

Tmj 

Achy, sharp and throbbing joint and muscle pain

Hot and cold flashes

Palpitations 

Fevers

Night sweats 

Neck creaking 

Shaking spells

Bottom of foot pain

Chest and breathing pain

Tired and dizzy after meals

Blood pooling

Fatigue 

Cold hands and feet

Floaters

Stomach cramps and pain

Ringing in ears

Pelvic pain

Shortness of breath

Constipation/ diarrhea 

Frequent urination

Sensitive to light, sound, and chemicals

Irregular heart rate

Pain behind eyes

Irritability 

Mood swings

Seasonal allergies 

Flushing and pale face

Painful menstruation

Heat intolerance 

Brain fog

Muscle twitching and weakness

Sore throat

Increased thirst

😬😬😬😬😬"

Please pray for Hannah before you close this page.  She is still in her Lyme fight.    

We are rooting for you Hannah!  Keep putting one foot in front of the next.  Thank you so much for letting us in on your life with Lyme and raising awareness.  I pray that you feel hope in your heart, and that the Lord would give you strength to kick Lyme to the curb for good.  Remember that you are never alone, and what a blessing it is to have family that fights beside you.  God bless you, Hannah!!!  You will continue to be prayed for.  

treatment: week five

WEEK FIVE

This week was met with a mixed bag of symptoms.  I feel like I had an incredible week four, with all the glimpses I was seeing of more energy and clarity of thought.  Overall, I still feel like I am gradually climbing up, but I wasn't prepared to have bad days again.  I know this is part of the process and my body is fighting hard.  I also want to note that I began introducing protocol to fight babesia (maybe a little too early) so not only is my body fighting off Lyme and the toxin die-off, it is struggling to overcome this nasty co-infection that many Lyme sufferers' also have.  I have several co-infections, but I chose to start with babesia because most of my symptoms are very babesia related (in addition to Lyme).  For those who want to follow more closely to the German protocol, it seems that the doctor in Germany would recommend starting the co-infection battle closer to week ten.  I will see how I feel this week and re-assess next week.  Here goes the week five update!

DAY ONE
175 mg artemisia annua (tincture form).  I have energy this morning, and don't feel as much brain fog.  I do have achy muscles, only minor and knee pain when I stand.

400 cc RI followed by one hour in hyperbaric chamber
one scoop alkala (like baking soda to neurtalize body's ph)
Bionic 880 at 11.77, 330 seconds, 100% power with a Lyme nosode.


DAY TWO
I woke up with sore muscles (like I was lifting weights overnight, lol).  Today is IV vitamin C day.  These days we are up to 25 grams vitamin C, with no glutathione push.  I know there are amazing benefits to high dose C, but I am probably going to go back down to the 15 gram dose because I want to keep the benefits of the glutathione, only possible on lower-dose days.

Today I realized that I have less anxiety.  I was driving and thinking about what felt different, and all at once it came to me.  I didn't know that I had so much panic in my heart most of the time, always simmering on the back burner.  Usually while driving, every car on the road was too much input in my head, and I had to focus really hard on what I was doing.  Normally, our brains can sort out in our head the non-necessary information while we are driving, but it's like my brain was a broken camera lens that could not fade out the background nonsense.  It was always on input overload, which is why loud noises and any added chaos sent me over the edge.  I could not have verbalized this to you three weeks ago...I just knew I was overwhelmed in the head.  It is a precious realization to be driving and realize there is peace in your heart...that was today.  (Thank you, Lord.)

Physically I feel pain in my knees but not the intense, agonizing pain- it's constant, but more dulled.  I feel hope in my heart today.

I also want to note that I wrote in my journal that social settings have begun to interest me again. (Those who know me will understand the victory that this is...as my symptoms increased over the past two years, I went into a big cave, tucked my head in my shell and isolated myself so much...I just have not been able to handle being "out.")  The desire to hide myself and talk as little as possible has decreased a lot.  It's humiliating and confusing to know that you are mentally incapable of making sense in conversation (and know in your own head it doesn't make sense) and yet be completely sane and aware of it all.  It's a very unique situation, and people with Lyme try to hide it as best they can.  Some days I would get into my car and just cry after social settings because I was so tired physically and mentally from the strain, but to everyone else, it's as effortless and automatic as brushing their teeth in the morning.  That knowledge alone makes you feel isolated.  You know you are not an idiot, but you feel like one.  And you can't spend too long analyzing and agonizing over this, because you are pressed to get on with life, and operate.  It takes every last bit of strength and focus to be operational, so you press on and go into survive mode.  (To everyone who can understand exactly how this feels, I am so sorry.  Keep going...I believe with all my heart that there is hope for healing!)

DAY THREE
It snowed at our house today!  Such a wonderful treat to have a dusting of wonderful white.
I started a few new supplements recommended by my ND:

Bio-Botanical Research Inc. G.I. Detox.  This will be especially beneficial as a "binder" for all the toxin die-off.

Integrative Therapeutics Berberine Complex.  This will help with energy.)

DAY FOUR
Ozone day and Bionic day...400 cc RI followed by 1 hour in hyperbaric chamber.
One scoop alkala powerder to balance ph.
TODAY I START FIGHTING BABESIA WITH A GERMAN NOSODE!
Bionic 880, 11.77 hz, 330 seconds, 100% power with borellia and babesia nosode.

Physically I had a head-ache by 11:00 a.m.  I woke feeling groggy and bloated, probably due to my crazy hormonal issues.  I was also sweaty randomly. (super fun, lol)

DAY FIVE
We would normally do IV's today, but scheduling was changed for this week, and we will do IV C tomorrow.  Physically I have knee and hip pain.  My eyes feel achy (is that even a thing?) and my body is capable of functioning-I am not in bed all day- but I am very tired on a cellular level.

Mentally I have noticed that I don't feel that cloak of "doom and gloom" descending upon me as often...when it starts, I feel like I have more control of being able to climb out before I drop.  This is not just a spiritual thing, because although my faith in the Lord has been tested and tried (seriously), my walk with Him and dependence on Him has remained the same.  I really feel like this is a chemical change that is taking place. My kids see the difference too...this week I am starting to feel like the "old me" that was happy...truly deeply happy with a wonderful (and less than perfect) life.  I am ready to have that completely back.

Tonight was a very hard night.  By evening my pain was intensifying.  My knee pain turned into leg pain and muscle pain, then I started having twitching again.  It is awful.  This is what's known to "Lymies" as a herxheimer reaction.

I am curious to know what other peoples experience with herx twitching is like, but I will do my best to explain mine...

It begins during waves of joint and muscle pain that are very intense and I don't want to move at all.  I am okay when the twitching begins, but after a while I am not brave anymore and I am desperate to have it stop...desperate for control over my body again.  Every twitch tenses my legs and stomach.  I lose air in my lungs as the twitch happens like I am getting the wind knocked out of me.  It's almost like that jerk-reaction that the doctor tests on your knee, only my knees jerk up and my body hurts.  I can talk through it, but my lungs still have air being pushed out at every twitch so it sounds like I am being hit in the stomach.  (This is hard to talk about, sorry if it is too much for some of you!)  I am strong for a while, but then silent tears start falling because I hate this.  I can't stop this, and what the heck is it?!  My husband tried to relax my muscles by rubbing my lower back and although I was weak and wobbly, (and my calves were so cramped) he helped me get up and walk for a bit.  This helped and the twitching stopped, but the second my muscles weren't in motion and I was laying down, the twitching began again.  It would seem that the logical response would be to walk, but the pain and fatigue is overwhelming.

It stopped after about 15-20 minutes and sleep came.

DAY SIX
IV Day...vitamin C, methylated B vitamins, lymphostat, minerals and a glutatione push at the end.
Today I also started a homeopathic tincture made by my ND to help my hormone levels.  I have read that a lot of ladies with lyme struggle with this, especially rough swings throughout the month and everything that comes with it.  I will go through hormone testing soon to help level things out, but this will help my body naturally cope a bit until then.

Physically today I am tired with a sore neck, spotty head-ache and generalized muscle pain.  My head feels foggy today and my eyes hurt...I have also felt heart palpitations throughout the day and even some pain in my lungs when I breathe (I am thinking this might be a babesia symptom).

DAY SEVEN
I have some energy to clean my house!  Feeling bloated due to hormone issues, but overall I can't complain.  I am ready to keep hitting Lyme and babesia hard, and I will see where it lands me!  I am excited for week six, and hoping there is even more healing ahead.  I am ready to have my kids home for Christmas break and enjoy time playing with them, instead of feeling guilty for needing to rest all the time...although some Christmas movies in pajamas is totally happening, sick or not!  It's one of the best parts about Christmas break...family time. :-)

A precious loved one texted me this picture...no words needed!  To all you out there with Lyme...you will get through this.  

treatment: week four

WEEK FOUR
(I am posting this as I am in week five, so now I am caught up with the treatment updates!  The next post will be out in four or five days, detailing week five and you will be tracking with me as close to real time as possible.).
Day One
It's ozone and bionic day!  400 RI followed by one hour in hyperbaric chamber.  Bionic 880 at 11.77 hz, 330 seconds, 10 points, 100% power with lyme nosode (from Germany).

I felt better cognitively today and could track with peoples conversations without feeling confused at the pace of it.  I did good throughout the day, mostly resting after church and had really intense knee pain in the evening.

Day Two
No IV, there was a mix-up in the scheduling, so I grocery shopped!  Had some knee pain, but also had some energy.

Day Three
IV vitamin C (25 grams).  We did not do any vitamin B or glutathione because the vitamin C dose is so high.  The IV did still include lymphostat and a mineral mix.

Physically I have a slight head-ache (it usually happens when I get IV C) but not as bad as previous days.  I feel slightly better brain function.  Today was monumental because I did outside work!  Usually I tunnel vision past my front entrance, intent on getting to the couch or the bed, but today I felt a desire to weed a bit.  I was able to work for an hour and a half and then my body was so tired, my muscles were shaky walking up stairs and I became clumsy, like I had just done burn out with weights.  I got a little nauseated too, so I rested.  I had some deep knee pain that was sporadic, but overall I see improvment.

Day Four
Ozone - 400 cc RI followed by hyperbaric chamber for one hour.   Bionic at 11.77, 330 seconds, 10 points, 100% power.  As the day wore on, I developed neck pain and knee pain.  By 4:00 pm I was completely exhausted, had a bad crink in my neck and spine and felt sore and stiff.  Felt emotionally overwhelmed and a bit hopeless.

Day Five
I added into the daily protocol "Adrenal Support" by HerbPharm.  Today is IV day...we are back to the 15 gram vitamin C dose with the added methylated B's, minerals, lymphostat and glutathione push (detailed on "the mostly german protocol" page).  I had no headache in the A.M. and had energy until 2 PM, then felt neck pain and knee pain.  Tired and have felt word block all this week- cannot verbalize what I mean to say very well.  Physically, I am feeling a "lightness" that I didn't know was missing.

A great example of this is:  When I typically took a shower, I would dread washing my hair.  My arms felt so heavy, like lifting boulders.  By the time I was out, I was dreading blow-drying my hair and getting dressed.  I would typically lay on my bed for 5-10 minutes after my shower to let my arms rest before continuing.  Today I realized that I don't have to rest anymore after my shower.  In fact, I showered, dressed, blow-dried my hair, put on my make-up and then vacuumed.  Yes, I was tired, but it was POSSIBLE for me to physically do without feeling like I was going down.  I cannot tell you what this feels like in my heart...hope!  And shock that I didn't realize how tired I had gotten over the last several months before treatment began.

Day Six
Today was a busy and wonderful day.  I visited with some family and friends...I had a stiff neck again, but had energy to think and be out and about a bit.  I did have some issues with my vision today, had a hard time focusing and felt like things kept getting blurry.  (You know those black and white illusion pictures?  It was like one of those being tilted back and forth.  My eyes could not focus on a face, like my lens kept getting confused with the background and didn't know what to focus on.)  By 2 pm my energy was gone and the head-ache came on.

Day Seven
We decided to get out of the house and take a trip to Crater Lake National Park.  It is beautiful and my kids have been begging to go up to the snow.  It was glorious, and a four hour outing was just what we needed.  Usually I would have panicked at all the snow gear (and laundry) and food prep that was needed, but I plowed through prep, had a great day, and came home a bit sore and tired, but wonderful.  I had enough energy to put wet gear in the laundry and throw together some dinner.  I would call this a higher level of functioning for sure!  I ached a bit when I got into bed, but this is huge improvement.  (Usually on a busy day like this my head would cloud over, and my eyes would literally refuse to stay open and I would be asleep by 5:00.)   But not today...and it was bliss.

 

Did you know that Crater Lake is the deepest lake in the United States?
It is also the seventh deepest lake in the world.  It has no inlet or outlet,
so it is filled by precipitation only.

The sun was SO bright, this was the best picture we got!

The snow made it's own icy decorations on this tree.

treatment: week three

This post will be informational.  These treatment updates are meant to be most beneficial for those with Lyme who are curious about the protocol, and the results I am experiencing.  For any questions, please feel free to email, and refer back to the link here entitled "the mostly german protocol" that gives specifics and a broad outline of the treatment.

WEEK THREE

day one
Tired today, intense head-ache came on all of the sudden during church.  Felt really dizzy/floating feeling with pain in joints- felt weak but functional.  Rested most of the day.

day two
Ozone day:  400 cc RI followed by one hour in the hyperbaric chamber.  Used the bionic 880 at 10 points, 11.77 hz,, 330 seconds each on 100% power (always with lyme nosode from Germany taped onto stomach, called the "solarplexus").

Physically felt tired with head and neck ache but not debilitating.  Found some energy today, which was thrilling.

The view from inside the hyperbaric chamber.  It's not so bad once it's inflated.  This is the smallest of the models - larger ones are available, but this seems cozy to me, and it comes to pressure within five minutes.  Every minute counts when you have to wait ONE HOUR in here.  

Here I am in my F-15...or something like that.  The oxygen is pumped through a tube via an oxygen concentrator machine, and the pressure of the hyperbaric chamber helps each and every cell become saturated with life-giving 02!  (I highly recommend that you research the benefits of hyperbaric oxygen therapy!  It's amazing.)

day three
IV Vitamin C (15 gram), along with the regular minerals, sodium bicarbonate etc, and ended with a glutathione push.

Physically I have a headache that stays somewhat consistent in my forehead region (pre-frontal cortex) and today I can almost feel it in my ears- it's weird.  I catch glimpses of an unexplainable "light" mentally...like a break in some very dark clouds.  My sister-in-law said that she can tell I am mentally more clear and tracking way more than I did in June (we took a weekend trip together) and my husband said he saw glimpses of the old me that laughed more.  (wow!)

day four
(normally this would be ozone day but we gave ourselves the day off because there will be no IV tomorrow due to Thanksgiving.)  No headache or knee pain this morning!  This is phenomenal.  I waited for the head-ache to happen but it held off until late evening.  I have glimpses of a veil lifting off of my mind that I have only just recently been aware is there.  I have hope!!! (I wrote about today here)

day five
Today was thanksgiving.  I was able to wake up at 7:30 and do baking for a few hours with no head pain.  Knees started to hurt at noon, but I am still feeling better than I have in a long time.  By dinner time with my family I was feeling really loopy and dizzy, unable to concentrate enough to answer questions without having to think really hard.  By 4:00 I was very tired but it was a wonderful day to have energy that held out that long.

day six
I added these into the daily protocol:
Nordic Naturals Complete omega d-3's
cilantro (to help detox)
This morning I awoke with deep fatigue and hand pain.  I have a sore neck, completely constant.  My leg is twitching and my right knee hurts.

day seven
I had energy this morning when I woke up, and started to have knee and lower back pain later.  Had some energy to play a bit with my family, but still achy and frontal lobe head-ache.

Overall, I started to see some glimpses of energy and hope like I haven't had in months.  I still have pain, but it seems to be less constant.

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!  :-)