Never could I have ever imagined that I would spend the better part of the 5th decade of my life battling a serious illness. Then on cue from the Masterful Maestro, Jesus Christ, a few tweaks in 1 type of medication and 2 supplements began to turn things around. What has transpired seems miraculous to me.
31 symptoms aren’t as bad right now as they were when I wrote them down on December 29, 2018. A few more are gone.
23 triggers of sometimes violent, convulsive episodes have diminished in severity as they were when I wrote them down on December 29, 2018. A few more are gone. A few days per week I have none.
And in a matter of a few hours from now, at 6:13 a.m. to be exact, I will be able to board a plane all by myself to head back to Rochester, Minnesota and the Mayo Clinic. An aggressive schedule awaits me for my follow-up treatment and medical visits. I’ll stay in a special condominium that will accommodate any ongoing chemical sensitivities; I’ll even learn to Uber and Lyft. Yay!
I am hopeful that things will turn out alright. I am slowly getting stronger and pain levels are coming down with various therapies that are finally working! Master Gardening activities are ticking up and I have a sewing project that I work on in the hours when I am feeling better. Call it my transition back into life.
What a good feeling. Thank you Lord for seeing me through to this day. Thank you also to my beloved, Steve, who has faithfully walked with me during thousands of dark days and nights. I am so blessed. Restoration is coming at last and I am as humbled as I am grateful.
Lord, please hold my heart and my hand as I make this trip. Let’s go! JJ
And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.
Leaving empty spaces in the blocks that measured time.
Oh how I valued my days, my worth by that thingy
When asked to justify this or that,
I could find the day/the hour when the lost hope began
From another closed door once opened with promise, no less.
(Oh why cannot I recall the goodies lain in there too?)
So many files on paper or electronic memory stored away
In my weighty storage that marks thy years, thy self
Perhaps defining who I was over the decades
Including these five years of hell that came to roost.
“But what if I forget?” was be my byline to save
The records of divorce, of deaths, of expertise, of treatments once lived . . .
I suppose I collected hoping to arise somehow better
And yet somehow as my receptacles filled my person emptied too.
Perhaps now is the time to infill on the inside
Not in a black metal coffin with folders numbered by letter
But by character and trust:
That the Holy Spirit within me holds it all in order anyways.
He knows what I will need, where the important things are in His care
When I draw on my Lord’s infinity —
Not the confines of my mind or spaces
Lest I limit my future by my past by carrying too many things.
Yes, let the purging begin.
Let the trusting run faster and freely.
Let the light of hope return even in the faintest of twilight.
Let me start over with a new ending: this time Divine. JJ
Gentle Reader: This day for us both “I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know him better. I pray that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in his holy people, and his incomparably great power for us who believe.” Ephesians 1:17-19
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.
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
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
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
While the numbers in my college statistics courses were fascinating and I applied them well in my Master’s thesis, I must admit that math was never really my forte. I’ll blame it on Mr. Courtright! Our Algebra II/Trigonometry course in high school was a constant source of frustration! John and a couple of the other male students would pour over the text book with him at the front of the room trying to understand the lessons he was supposed to be teaching that day. Yeah, you got that right: high school seniors trying to figure out advanced mathematics on the fly! I am so very glad that I never again had to sit through a traditional math class after that one!
Statistics are a different genre though. Statistics often tell a story that we can use to make sense out of the stuff of life. For example, landing one standard deviation from the mean (the average) in a bell-shaped curve can help us feel like things are going to be o.k. most of the time, in the right scenario of course! Enter here special numerals applied to my recent trip with Steve to Georgia and South Carolina that will tell this story better than I can even without a calculator! Oh how I wish some of these were more comforting than the majority of them though . . .
Over 7 days of camping in 2 locations, I was unable to leave the travel trailer 3 of the days due to illness.
My beloved Steve attended 2 of the 3 family wedding-related activities in Georgia and I attended zero.
We travelled over 2,000 miles in my truck with our 67-pound German shepherd, Elle, settled sweetly behind the jump seat of the King Cab. Such a great traveler she has become!
I prepared about 96% of all of my own meals making this trip more of a “business as usual” affair than vacation in the realm of food.
One hour of the five that I spent in our friends’ home on Monday was spent in continuous convulsive episodes on their couch. Thankfully the two young children had already gone off to bed when I crashed; graciously the three adults prayed over me for the Lord’s tender care as we all go forward from the significant stressors in our lives.
The kids and I planted 32 daffodil bulbs the morning we left South Carolina, overplanted with dozens of anise hyssop seeds. Hooray! By Springtime the view from the kitchen window of their log cabin will be alive with flowers interspersed amongst the numerous towering pines.
A threatening wind storm with gusts up to 40 MPH forced us to leave a day early for safety towing our Camplite on the highways to get back home. Just a few minutes after we arrived home at 4:00 a.m., the winds increased again closer to the estimate of 50 MPH by morning. We had blown in just in time, praise the Lord!
Nearly 4 days have passed since we got home and I have yet to clear out, clean out the rest of the trailer as needed after a week of travel. Steve completed the first 5 loads of laundry and about 3 more are left to go. I have been sick in bed for most of the past 3 days, sleeping in late to recover from the nasties which characterize this wretched illness.
Over a dozen doses of a new anti-microbial treatment (Biocidin LSF) have brought both relief and a flare up of symptoms at times: begun when travelling and continued back home when seeking a new direction, new relief, new hope for a future without illness. Two violent convulsive episodes followed on Friday after an appointment with a new specialist and a new lab test, respectively. Many more filled the 2 days that followed. Perhaps this week (and 2 weeks shy of the 4-year anniversary of the first waking seizure attack) there will be an answer to end this suffering? The odds are wearing thin lately for sure.
Yet through it all, I am reminded of the 3 days that my Lord and Savior, Jesus Christ died and paid the price for all the negative numbers, the heartaches from what is not right in our world. He knows the mathematics of it all greater than I can ever imagine and holds it all tenderly in the palms of His hands, ready to redeem it for good when He comes again in glory. I choose to believe the promise that His precious thoughts towards me and you too, Gentle Reader, outnumber the grains of sand on the earth (Psalm139), giving us hope for a better tomorrow. For as He thinks fondly of the ones He loves, He also promises to wipe away our every tear someday (Rev 21:4) when the time is right: when time is no longer numbered in eternity with our Heavenly Father, God.
And that my friend is a story worth writing about. A world without limits. A love beyond measure. I just hope that when all is said and done, when it is time for rejoicing in the heavenly realms, that you will be there with me there too? Let not these numbers be wasted! Won’t you accept the love of Christ into your heart this day, this night too? Oh how I hope so dear one.