2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds,3 because you know that the testing of your faith produces perseverance.4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.5 If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.6 But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind.
Perhaps it is a weakness in my character that requires refinement? To witness the love of Christ to others in our times of trial serves as both a powerful witness for Christ and perfector of our own faith. Heck, with the amount of suffering I have endured, I don’t want any of it to be wasted. Or repeated! So today I wonder if it is possible that I have missed one particular situation of opportunity: the Emergency Room. Finally my broken heart has calmed down enough to consider the possibility . . .
Ten times I have landed in the ER in the past 4 1/2 years. The first time was at the beginning of this illness with the viral hepatitis that started it all. The next nine trips were all for wretched, continual seizure attacks that would not stop. Most times the ER Docs could get them and the pain that accompanied them to stop with a combination of fluids and some kind of medication. Often the medication made me worse. Usually I would walk out of there about 5 hours later as a beaten puppy with an exhausted husband faithfully at my side. And sometimes I even got a break in the convulsive episodes for some of the subsequent 24 hours. This became less true with each subsequent visit.
Twice during my severe distress, barely able to punch out a few words when having difficulty breathing and my “brain on fire,” I have sworn at the person who I thought was not helping me. Not cool. Even a person with Tourette’s Syndrome or senile dementia has some responsibility to try to find reasonable means to communicate his or her needs. My frustration got the best of me and I forgot who I belong to in Christ. I forgot Who was in charge those nights in the ER. I forgot who allowed these refining fires into my life for my highest good. I lost the image He gave me of His tears as He hung from the cross for me. I ceased to remember the gifts, the crown of glory that awaits those who are in Christ Jesus. I certainly did not remember that even these ugly things were working together for my good (Romans 8:28) even when amongst the staff at the hospital. And my witness for the One Who saved me was tarnished for sure. In my own strength, I failed to get my needs met and failed to minister. We left this past Friday night with me weeping, still seizing, and unable to walk . . .
Sure, I am human: weak, limited in strength and in power. I pray and my husband prays continuously for all aspects of this illness. I submit to the will of Christ. I could also describe for you the victories, the growth, the good things that have happened amidst the traumatic. For example, Friday night after an IV treatment for chronic Lyme disease was supposed to be for salvaging what remained of my birthday. That did not happen when I spent the evening in the emergency room. I was sick all day on Saturday and Sunday. Even so there were sweet gifts at dusk on each of those days and in the morning on Monday when I got to work in my garden again; for that I am grateful. My spirit soars out there dontcha know . . .
Here is the scripture that is convicting me on a Tuesday. See if you can follow where my heart, where my spirit has led me:
2 Corinthians 6:4-10 (NIV)
4 Rather, as servants of God we commend ourselves in every way: in great endurance; in troubles, hardships and distresses;5 in beatings, imprisonments and riots; in hard work, sleepless nights and hunger;6 in purity, understanding, patience and kindness; in the Holy Spirit and in sincere love;7 in truthful speech and in the power of God; with weapons of righteousness in the right hand and in the left;8 through glory and dishonor, bad report and good report; genuine, yet regarded as impostors;9 known, yet regarded as unknown; dying, and yet we live on; beaten, and yet not killed;10 sorrowful, yet always rejoicing; poor, yet making many rich; having nothing, and yet possessing everything.
Such is the opportunity for ministry of the Gospel of Jesus Christ for those who suffer. It’s not all about us. My Lord, help me in your grace to use the witness of Your own life and the apostle Paul who wrote these words to strengthen my own ministry in times of need for your glory. I have failed and want to do as You would have me do no matter what happens to me. Please strengthen my beloved Steve as well. Thank you for his care, love, and companionship in the best of times, the worst of times. Bless him oh please. He has been so good to me.
Just when you think you’ve finally gotten on the road to something good the path can be blasted with a tempest beast of a hurricane, sending you smashing to the ground without a life preserver or anchor! But do not despair. The Lord Jesus Christ is still on the throne precious one.
Isaiah 55:8 New King James Version (NKJV)
8 “For My thoughts are not your thoughts, Nor are your ways My ways,” says the Lord.
The close of our evening in the wee hours of the morning was exceedingly traumatic, puzzling, and desperate. This sure is a mystery given that I have had some better blocks of a few hours at-a-time now that I am 3 months into IV treatments with antibiotics for chronic Lyme disease. Even an iodine protocol and infrared sauna treatments appear to be promising adjuncts to my treatment plan. Ahhhh, so much progress has been made these past 4 1/2 years yet still there are plenty of wacky lab findings: we’re talking dangerously low amounts of key nutrients, hormones, and healthy gut bacteria. Yet I have less pain some days, improved clarity of thought, and an ability to do some housework or gardening about once per week. The days largely spent bedbound have diminished from 4 to 1! And my score on a chronic Lyme symptom scale has gone down from 73 to 46. These are good!
James 1:2-4New King James Version (NKJV)
2 My brethren, count it all joy when you fall into various trials, 3 knowing that the testing of your faith produces patience. 4 But let patience have its perfect work, that you may be perfect and complete, lacking nothing.
Some call setbacks that occur over a course of treatment “herxheimer” reactions. I call them a “healing crisis.” That is, until the particular breed of hell is so traumatic that extra healing is needed from the crisis itself on top of the serious illness. I’m talking about seizure attacks marked with screaming at the top of my lungs. Let’s add writhing movements lifting me off the bed as if embodied by a demon and intense, hysterical episodes of wailing with gushes of tears. What the heck is going on here? Flashes of terrifying scenes fill my “mind’s eye” alternating with the blackest darkness you can imagine. I press into the abyss with cries out to my beloved “Jesus” when I can, when I my mind allows me to do so. He is my only hope. Prayer mixes with shock. Breathing, prevention of injury, and concern for my hubby nearby fill any cracks in my thought processes when they return. Steve and I both leave the scene broken when the hell finally stops (tonight after over an hour had punched its way by us).
This all means that chronic/neuro Lyme disease is in my central nervous system and brain. This probably means that the treatments are now changing my neurochemistry and affecting the structures of my mind. This definitely confirms my worst fear that the path out of this hell to healing will be worse than the journey that got me here. So wretchedly sad. I guess I’ll just pray that the Lord strengthens me and Steve to get through it, pleading for mercy as we did tonight. Somewhere out there will be a message to inspire others yet again tonight that is not the case. This is a murderous mystery, killing every sense of sanity and magnifying many senses of suffering. I am o.k. in this moment, thankfully. It’s amazing what I can do sometimes on 2 hours of sleep just before the sunrise.
Psalm 119:147-149New King James Version (NKJV)
147 I rise before the dawning of the morning, And cry for help; I hope in Your word. 148 My eyes are awake through the night watches, That I may meditate on Your word. 149 Hear my voice according to Your lovingkindness; O Lord, revive me according to Your justice.
Hang with me, Gentle Reader. We are not giving up. We still have faith and still have hope. You don’t give up either with the challenges in your life too, k? We are holding out with the hope of blissful eternity for those in Jesus Christ and working our way back to the current day from there. The suffering, the trauma, the horror just makes for a better ending when telling a magnificent story. And when in my mind’s eye I also see the tear on the cheek of my Lord as He hung dying on a cross for me and you, I know that somehow, supernaturally, I will be delivered to a better place someday. How about if we meet there? So much goodness awaits us. I’ve really got to tell you about the Summerwine bush that is budding from where I transplanted it to my compost pile, ready for its new home this Spring . . . Someday it will burst forth into bloom (like me) once again! JJ
Here’s a little ditty on Lyme disease that I wrote and was published in the Spring 2016 issue of Canoe News (for the United States Canoe Association). As it goes to print I just wondered if it may help someone out there? Take care Gentle Reader, JJ
Lurking in the tall grass
by Julie Horney
Somewhere out there by the side of the river, next to your boat–mobile or behind the garden shed may be a menace that could change your life forever. You may see it before it gets to you and you may not. It may be no bigger than the period at the end of this sentence! Perhaps you have been bitten many times before and think you are immune to its wrath. Maybe. Maybe not. One day that could all change so take heed: this message applies to EVERYONE!
Lyme disease is the fastest growing infectious disease in the U.S. Lyme has been reported in all 50 states although it is most prevalent in the Northeast, Northwest, and Great Lakes areas. The Centers for Disease Control and Prevention reported that there were 300,000 new cases in 2012 and estimates based on clinical diagnosis suggest there are over 1 million new cases yearly.*
Lyme disease (LD) is called a “vector–borne” disease transmitted by the bite of black–legged deer tick imbedded with the Borrelia burgdorferi (Bb) spirochete. LD is often complicated by Co–infections: other bacteria, protozoa, and viruses carried by the same ticks. Lyme is difficult to diagnose because fewer than half of all patients recall a tick bite or develop the signature erythema migrans (bull’s–eye) rash; the routine Lyme ELISA screening test has up to 60% false negativity. Similarly, testing for co–infections is also plagued by a high rate of false negativity. For example, research by the International Lyme and Associated Disease Society (ILADS) finds that joint swelling typically occurs in only 20% to 30% of patients. Given the prevalent use of over the counter anti–inflammatory medications such as Ibuprofen, joint inflammation is often masked. Based on these statistics, a significant number people who contract Lyme disease are misdiagnosed during the early stages leading to a chronic form of the disease which can prove even more difficult to diagnose and treat.
Lyme disease is often referred to as the “great imitator” because it mimics other conditions, often causing patients to suffer a complicated maze of doctors in search of appropriate treatment. While it may not be fatal, the consequences of Lyme and Co–infections can profoundly affect the quality of your life. In the words of my own Lyme Literate Medical Doctor (LLMD):
If you don’t treat it then your life will be hell.
Alright so now that I have your attention, let’s dig into the details. Isn’t there a difference between an acute infection and a chronic infection? The answer is yes. And since only an estimated 50% of ticks carry infection, how do I know that I have been affected if I do not have any symptoms? Lyme disease is difficult to diagnose without a rash, Bell’s palsy, arthritis, or meningitis but you can still have Lyme and not have any of those signs or symptoms! Many people react differently to the infection and experience fatigue, headaches, irritability, anxiety, crying, sleep disturbance, poor memory and concentration, chest pain, palpitations, lightheadedness, joint pain, numbness and tingling. The key is in the careful medical evaluation of ANY suspicious insect bite since they are all capable of spreading disease. (The CDC has stated that mosquitos can carry Lyme disease.)
The diagram below shows the proper procedure for removal of an attached tick.
Removal of a tick from the CDC website****
Using fine pointed tweezers, grasp it from the side where it meets the skin, and gently pull it out in the opposite direction from which it embedded. My husband, Steve, and I each carry a pair of tweezers in our vehicles in addition to a First Aid kit for this purpose.
While the longer the tick is attached, the higher the risk of transmission, it is possible to get Lyme disease even if the tick is attached for less than 24 hours. The salivary juices of the tick, which contain anticoagulants, anesthetics, and immune suppressors, also contain microbes that can be injected at the time of attachment. (The anesthetic is why you don’t usually feel it biting you!) Transmission of bacteria by ticks attached less than 24 hours has been well documented in animals and a study published last year documented that this can occur in humans as well.*
Taking a “wait and see” approach to deciding whether to treat the disease has risks. If you do experience symptoms, you may even need to have more than one doctor evaluate them. Onset of Lyme disease symptoms can be easily overlooked or mistaken for other illnesses. Once symptoms are more evident the disease may have already entered the central nervous system and could be hard to cure. This is one case in which an ounce of prevention really is worth a pound of cure. Work with LLMD to identify the appropriate treatment option if you have symptoms and if those symptoms persist. There is more than one type of antibiotic available, often beginning with 20 days of Doxycycline or Amoxicillin. Longer treatment is also an option per guidelines at http://www.ILADS.org
Prevention
Strategies for the prevention of tick bites are do–able even for the avid paddler who finds himself standing in endemic areas on a regular basis! First and foremost avoid known infested areas and keep to trails, boat launches, and areas cleared of brush/grass/bushes. Next, invest in clothing treated with permethrin or treat clothing 24 to 48 hours ahead of time with permethrin (which is waterproof through several washings) including paddling shoes. Tucking light–colored leggings or pants inside socks or fitted ankle–high water shoes can be helpful; tucking shirts inside pants is also recommended. There should be no gaps in clothing such that skin is exposed.
An insecticide containing DEET is the standard repellent to use. The Centers for Disease Control maintains that repellents with the active ingredient of picaridin or oil of lemon eucalyptus are as effective as DEET for mosquitos but make NO CLAIMS for their effectiveness against ticks. Similarly, the EPA registers several essential oils and other natural remedies for safety but not effectiveness! Limited alternatives are available by searching their site.** Assist children in the safe application of all insect repellents and skin checks too. And do remember to protect your pets: dog and cat fur can act like a “tick magnet” carrying ticks inside your home. Consult with your veterinarian about tick–protection for your pets throughout the year.
When outdoors, periodically inspect your clothing and skin for ticks. Wearing light–colored clothing will make tick identification easier. Brush off those that aren’t attached and remove any that are with the method noted earlier. Some keep an adhesive–style lint roller handy to pick up loose ticks on clothing or pets. Once you are home, take a shower right away. This will wash away unattached ticks and offer a good chance to thoroughly inspect your skin. Feel for bumps that might be embedded ticks. Pay careful attention to hidden places including groin, armpits, back of knees, belly button, and scalp. This may seem strange but a quick skin check when sitting on the potty can be done anywhere, right?
Why bother? A Quick Story
Perhaps it was the tick Steve removed on me about 6 years ago or maybe it was the zillion mosquito bites I’ve had over the years that caused my four years of hell with Chronic Lyme Disease? We are not sure. At first we thought that when I got really sick it was the consequence of a biotoxin illness (exposures to blue green algae–infested water when kayaking then mold at home). For four years I sought medical advice from traditional, functional medicine, and alternative health practitioners; we spent tens of thousands of dollars out of pocket to no avail. We found secondary issues to resolve that often go along with what becomes a “chronic illness” such as mercury toxicity, Candida, parasites, dental issues, food sensitivities, hormonal issues, and more. Several doctors gave me a psychiatric diagnosis; others attributed it to “fibromyalgia.” Oy vey!
Convulsive episodes every day for 2 to 5 hours has created a living hell for both of us. Sometimes the seizure attacks are triggered by environmental toxins or fragrances and other times it’s the simple act of going to bed or waking up in the morning. The thrashing has created secondary orthopedic injuries that require their own treatment. Relief is generally temporary until the next round of torture coming within hours. I had become largely homebound with a litany of noxious symptoms and until recently, bedbound for most of the day, a minimum of four days per week. Extreme dietary measures including a ketogenic diet did nothing. Family visits still require extreme avoidance procedures.
Less and less was I able to cheer my beloved River Bear by the shores of the waterways here in Indiana . . . “gooooo Steeeeve.” I thought that my paddling days, ability to work, and ability to function normally at all were largely over. Welcome to late stage, neuro Lyme . . .
Tis funny how nothing is wasted for those who believe in the Lord’s sovereignty over one’s life. Initially I did have 5 weeks of antibiotics for a “clinical diagnosis” of LD even though virtually all of the fancy lab tests were negative. That first round of treatment in 2012 nearly killed me. I decided it wasn’t for me. But after treating all of those other conditions over the subsequent 5 years I would eventually become ready for intensive treatment of chronic Lyme disease with high doses of IV antibiotics.
At the time of this writing I am about 3 months into treatment. Placement of a power port by cutting into my chest wall was needed when the treatments got complicated. Neat huh? And at last there’s good news: the big turn–around has begun! Praise the Lord I am getting well!
Fellow paddlers, please take the prevention and treatment of Lyme disease seriously! Chances are good that someday this will touch the life of someone you know. Let not my experience be wasted! Share this information with your friends and family. Take precautions then let’s get on down the river, the beach, the intercostal waterway to enjoy the sport we love.
Perhaps soon you’ll see me as the one in a Stellar SR Multisport. :JJ
*Source: International Lyme and Associated Disease Society at http://www.ILADS.org
Wife answers after a long pause: I might have sent them to Minnesota . . .
And then another looooooong pause follows with: silence!
Sometimes the logic of the moment doesn’t make sense to anyone else but oneself. Know what I mean? Hey, I was selling my jewelry business this past Fall and wanted to send along all of the tools that the new owner would need. I noted that there was a nicer pair of pliers in the tool cabinet so surely hubby-dear would agree that I should make my customer happy to have both pairs needed to successfully open and close jump rings? Besides, I did ask him about it didn’t I? He did not remember me asking him. I did not remember it exactly either. Well DeeAnn in Minnesota is happily making jewelry and that’s all that counts, right?
Well maybe not. Within a day I made sure that we picked up for my beloved, a nicer Stanley-branded pair with ergonomic, non-slip grips at Walmart. Win! Win?
We employed a similar rationale four years ago when I never really recovered from acute hepatitis. For more on that story, see the About Julie page here. It seemed the right thing to do to use an alternative technology to treat Lyme disease when a trial of antibiotics left me wretchedly ill. Sadly, the Beam Ray Rife machine hurt me, sending me into a tailspin. There would be no easy solution(s) to this complication. I developed seizure attack episodes within 3 weeks of running very short programs on the unit which exposed me to various frequencies of light and sound waves. A dozen or more local folks using their own machines noted benefits. I did not. I sold it about 1 1/2 years later with a net loss of $1500 and what has become 4 years of daily convulsive episodes. This weekend there have been 3 major and several minor wretched episodes within the last 24 hours. Lord have mercy!
Beam Ray Rife machine
As you can read in the link noted above, we have tried many different kinds of valid treatments coached by skilled practitioners. I have benefitted from taking down mold exposures and illness, mercury toxicity, Candida, parasites, and the extraction of 2 root-canaled teeth. Even so I feel like a beaten puppy! But now we know that they very likely are related to Chronic Lyme Disease requiring the use of powerful doses of IV antibiotics for many months. Seven weeks into the treatment I can tell you that there are some positive changes. Unfortunately I am having complications from the weekly IV infusions so later this week I will have a port surgically placed in my chest wall. This becomes a direct-access site without the need for sterile dressings that irritate my skin or superficial phlebitis that has plagued my forearms for about 3 weeks. (Thank the Lord that I discovered horse chestnut gel when the warm compresses did not help.) I am also hoping there won’t be any more violent episodes with the treatments. Even intramuscular injections have been exceedingly difficult. Whew!
So there ya go. A funny story, an update, and a little hope beyond the saga of late. Lord willing, I am going to get well! And when I do I might just get out my own tools here in Indiana, not Minnesota, for digging in the garden. By the way, Spring weather is forecasted for this week . Since I won’t be tethered to an IV line I can safely get a little dirt underneath my fingernails if I am up to it before the surgical procedure on Thursday. The garden pup is ready. You could say that I’ve traded the needle nosed pliers for an aluminum shovel! So let’s get to it . . .
I wonder how those carrots are doing that got left in the ground last fall? Having a little extra time in the soil should make them as sweet as candy by now dontcha know? :JJ
12 But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel.” Phil 1:12
Just as this picture and this scripture present two extremes of perspective for the activities of life, they are united in one theme: we shall rejoice with Christ as our guide! Yeah, I know that is a stretch . . . but we do know that the God of the universe has a sense of humor too, right? I mean he created aardvarks, zebras, and tse tse flies! What’s up with that? Oh I know that the Original Adam named them all but just how did he do that? They were all such weird creatures! So it follows then that humor can help us endure many kinds of extremes, even the ones you and I are facing today.
Take for another example the thieves that attempted to steal gasoline from an RV. This is a true story: instead of tapping off the gas line they ended up tapping off the septic line instead! When the fluid started flowing it was not fuel it was the polar opposite: stool! So sad. Such a righteous punishment I must admit! And as a grateful owner of a travel trailer all I can say is: Tee hee with a smirk. ;}
I cannot say that I can relate to the paradoxical themes of life with much right now with much lightness of spirit right now, however. I’ll just keep it simple: there’s some good and there’s some that is not.
On a good note I am grateful to report a widening of social contacts of late. I’ve reached out to some old friends and some newer gals have jumped back into my world from my local church. I appreciate the friends that I’ve met online (and you know who you angels of mercy are) and hope we can extend our fellowship. All of this is good. It’s amazing how all believers in Jesus Christ share a common unity even when the circumstances of our lives can be so different. We all have our daily wants and needs; our Lord cares for the desires of our hearts tenderly and for these we can pray in earnest for one another.
On a less good note, new I.V. antibiotic treatments for chronic Lyme disease are going quite roughly. Yup, revisiting Lyme since the persistent seizure attacks sure look like the episodes of others dealing with the neurological complications that can happen long after the acute infection has come and gone. It was 4 years ago that I first started treatment for Lyme when things got sidetracked for treatment of mold and mercury toxicity, dental issues, Candida, parasites, and a possible oxalate burden exacerbating fibromyalgia pain. Use of a Rife machine brought daily seizure attack episodes and treatment of Candida escalated them from 2 to 5 hours of convulsive episodes per day! I was bedridden the better part of about 4 days each week this past Spring, Summer, and Fall. So beginning in January I was started on high doses of IV Rocephin (antibiotic) and I remain sickly but out of bed more of the time. This treatment coupled with the wintry temperatures below freezing have brought incredible pain. However, the days that I am up until daybreak every night of the week has cut down; tinnitus, brain fog, and other executive functioning skills are sloooooowly shifting for the good. Sometimes even the pattern of convulsive episodes shift as well (thank you liposomal melatonin!). Just maybe these past 4 years have not been wasted after all! It appears that each new treatment has prepared me for such a time as this: we just might be able to treat this remaining beastly diagnosis and its co-infections to get well . . .
There is so much to consider. Will I continue on antibiotics long term? Will my health insurances help us out or cut us off next week? Will I be able to get a port to spare my aching skin and forearms from repeated pokes and dressings that trigger more wretched episodes? When would I transition back to more herbal-with-pharm-grade supplemental interventions? Will the reactivity to mold and fragrances ever come down or do I have to go live in a pristine environment somewhere for a few months later on to fully detox? How much more stress can my beloved husband, Steve, be expected to bear? And how will we pay for all of this?
As the frigid Winter temperatures of the Midwest bring more of a sense of retreat than charging forth into the unknown, we are choosing to press on anyways with my treatment for chronic Lyme disease. I just wear long underwear everyday to keep warm! We are starting where we are with a local, Lyme-Literate Medical Doctor who has treated dozens and dozens of cases successfully. I know that to be true. I have met many of them when we had a local Lyme disease support group. I noticed that each of us facing this dreadful disease had chosen a somewhat unique path to his or her recovery based upon the damage the infection caused to our bodies and our individual resources. (See this link for more info on chronic Lyme.) Perhaps my case was one of the more severe. Perhaps the Lord had more than “recovery” in mind when He allowed this serious illness into my life. There is so much to consider that simply was not on my radar over 4 years ago.
If you have found this blog by way of your own journey through chronic Lyme disease or some other serious illness, know that I am praying for you. There is hope! You are not alone, Gentle Reader. Please comment below and allow me, if you like, to connect you with a larger community of those finding meaning beyond his or her diagnosis. Our Lord, Jesus Christ, grieves for your suffering, your fear, your broken heartedness. He sees you and will see you through what you are facing as He has done so for me and Steve. He loves you more than anyone (including the furry pup above who has found his prize squirrel in the sunshine of a better day).
May we both smile some day in the arms of our Heavenly Father for having connected this day, for His glory. And, um, when we get our prized prey I’ll just say, “please pass the catsup.” Squirrel on the Bar-B-Que anyone? Ewwwwww! :JJ
Jesus is for the Wounded 
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