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
She was wearing an oxygen cannula 24/7 and needed to take a break to rest after walking from one end of her house to the other. Having battled breast cancer years ago, she had come into the late stages of another bout of cancer that would take her life a year later. She was no longer able to leave her home except for medical appointments and did so with a supremely taxing effort. Too weak to perform all but the most basic of daily living chores, she still had an amazing ministry that reached across the country . . .
From left: Julie, Miriam, Charlotte, Mary, and LuAnn from a Grief Share Ministry in 2007
Charlotte prayed for persons that she had found in an online “care” ministry. These patients had opened up a personal webpage usually when in the hospital to facilitate communicating updates on their medical status to loved ones. Charlotte searched the database for individuals that spoke to her heart then enlisted prayer warriors she knew via email and social media to pray for them too. I was in awe of her outreach! Exhausted from chemotherapy, radiation, or just taking a breath was no deterrent for a woman with a heart bigger than anyone’s I had known. “I have the time,” is all she would say about it. And time was her greatest gift as she spent it in the service of others, lifting them before our heavenly Father’s throne of grace.
So when I have been bedridden over the past few years, I have taken on my own version of Charlotte’s prayer ministry. I pray for everyone I can think of until I can get out of bed again. I was often amazed that once I got started, the Lord would bring so many names and faces to mind: persons I had met online, an individual named through a prayer chain, or maybe someone I saw in public when able to leave our own home to go to medical appointments. “I had the time,” so humbly to pray would be the best use of it. It has been amazing to me when these instances occur . . .
Today a bunch of folks came to mind during 2 hours of continuous seizure attacks after injections of antibiotics at my doctor’s office did not go so well. I lain on a hard treatment table in the dark to shield my eyes from the bright lights, hoping that the hell would not go on as long as it had during treatments earlier in the week. My neck throbbed from the violent shaking, thrashing, odd posturing, wailing, repetitive pulling forward of my flexed torso, and general torture of it all. (Unfortunately the facet block injection in my neck 3 weeks ago had already worn off!) Sure, the nurses checked on me every so often; they had seen these episodes many, many times before and knew the score. There was an agreement however, that if the convulsions persisted they would call an ambulance to take me to the emergency room of the hospital adjacent to their office building. I doubted if that would do any good. Would she be making the call the next time she came in the room? The next time after that? The total duration had already exceeded 90 minutes which was well beyond our agreed upon period. “Is there anything I can do for you?” she would ask in plain English. Sigh. Not really.
Then she came back again and I squeaked out to yes, please ask the doctor if he could do a chiropractic adjustment on my neck. It might help stop the wretchedness as it had in another appointment in the past. Finally another nurse came back with the good news: the Doctor would see me! I began to cry . . . then praise the Lord . . . then pray some more. Soon my time thrashing about whilst laying flat on my back and mighty sore gluteus media from 6 injections this past week would be over. I had so much to do later this evening before a surgical procedure tomorrow. I had better get my time with the Lord in now not knowing how the rest of the day would fare.
Things got better after more gut-wrenching yelps, yells, screams, bursts of hot tears, yada, yada with the chiropractic adjustments and I was finally able to leave the building under my own power about 20 minutes later. Whoa! Shell-shocked I had made my way to the bathroom, put on my coat, and gathered my things to leave as if moving slow-motion in a black and white flick from the 1950’s. But the evening was just getting started so miraculously the pace revved up a bit from there.
Within the hour I would be tossing all precaution to the wind and digging in the garden with our pup chewing a bone nearby! Whaaat? Hey, I figured that I’d get the borders of 2 flower beds tidied up knowing that I would likely be on a lifting restriction after placement of a power port in my chest wall early the next morning. SO I DUG, DUG, DUG LIKE THERE WAS A TREASURE OF GOLD HIDDEN IN THERE SOMEWHERE!!! Even the darkness and the drizzling rain did not stop me from doing what I love, doing the most that I could possibly do in some sort of a cathartic shedding of my personal hell on the way to and earthly Garden of Eden. Well, sort of!
Maybe Charlotte would smile at how things turned out for me this evening. It’s been about 7 years since her passing. She had an impact on my life for sure. If she were still around I would give her a call and listen some more to her wisdom that helped transform my life at another tumultuous time. Well I guess that is happening again dear friend.
Thank you Jesus for Charlotte’s legacy. Perhaps someday together we will tend to the sumptuous riches in the gardens of our Savior’s wondrous dwellings that You have prepared for us to bask in Your glory one day and forever.
There is so much to look forward to Gentle Reader. I hope to see you there too. :JJ
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
An O.T. assisting a client in a tub transfer using bathroom safety equipment.
When I was working in my career as an Occupational Therapist, I coined the following phrase to describe my role to my patients and their families:
An Occupational Therapist takes a look at how a person occupies his or her time and the skills needed to get through the day.
This definition worked well, given the diversity of populations, conditions, and treatment interventions utilized in O.T. Having a simple, quick definition helped me better communicate my 30+ years of licensed and skilled interventions from a variety of treatment settings that might be called upon at any stage over a course of therapy. Together we then crafted a course of action to get the person back into his or her life as best as possible. Funny how the person that may have benefitted the most from all of this is the one writing to you this evening . . .
Recovery from a serious illness has been a case of the phrase “therapist heal thyself” coupled with the expertise of a few other licensed professionals. My part was to study, research, document, evaluate, revise, manage, and just hang in there by my fingernails to get through these past 4 years. However I will credit the Lord, Jesus Christ for providing the courage and hope that my husband, Steve, and I needed to actually start seeing some progress. And guess what, it is starting to happen! The Lord has allowed recovery to begin!
Six weeks ago I began an ongoing, intensive course of IV antibiotics for the treatment of chronic Lyme disease. In the interim I experimented with liposomal melatonin, 5-HTP (a precursor to serotonin), and now CBD oil (from industrial hemp). I believe it is that latter that have helped to move my sleep/wake cycle from that of a brown bat to a gal that is just slightly a night owl. I am starting to dream again and have a little more energy, clarity of thought. Also the years spent chasing down mercury toxicity, mold illness, dental issues, and secondary infections have prepared me to tolerate this level of intensive treatment. Are you ready for the biggest change of all?
The two to five hours per day of violent convulsive episodes is diminishing in intensity and duration! This has been consistent for about two weeks now. PRAISE THE LORD!!!!!!!!!!
We are thrilled for some positive change in my condition! We are now hopeful that the powerful doses of antibiotics will help kill the Lyme bacteria and co-infections likely causing the seizure attacks and other noxious symptoms. Whoa. So how do I fill my days? I am continuing my full time job of daily detoxing, preparing a specifically crafted diet, maintaining a detailed treatment log, medical appointments averaging daily, supportive relationships, study-and-research, medical treatments (some complications came with the IV treatments), connecting online to forums critical to these efforts, the “stuff of life,” and taking a walk at least once per week. Maybe this week it will be twice? Yeah God, the pup will love that one!
Like in the past, right now I am just doing my job. I am grateful that the Lord saw fit to lead me into the profession of occupational therapy as it provided me the skills needed to manage the mechanics of this illness. Along the way my beloved Steve has been the greatest friend, confidant, witness, and spiritual leader that I could have ever asked for to walk this road with me. He has labored tirelessly night and day for me, for us. Thank you Jesus for Steve. There are many unknowns and many more months of treatment yet to follow for sure. No problemmo. With my Lord and Savior at the helm, I will be fine. Lord willing, I am going to get well!
Just thought you might like some good news from the “Hope Beyond” blog, eh? Take care Gentle Reader. And thank you for your support. You rock! JJ
Jesus is for the Wounded 
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