We had planned to be in Texas to see my hubby’s family this week for Thanksgiving but it was not to be due to “the illness.”
I had hoped to get some cleaning, shopping, planning, and cooking done days ago but things did not turn out that way. The cleaning got done at 3 o’clock Monday morning!
The special oatmeal dish that my hubby makes for me when I am recovering from seizures was to be off my special diet right now . . . until I had another episode rendering me too weak to consider anything else.
One afternoon my beloved was carrying me to the bathroom due to a neurological collapse episode and the next day we were working together after dark on winterizing our landscaping.
Alternate plans for a family gathering in Arkansas would have saved us a significant amount of driving but my In-laws decided not to change their plans; my hubby’s parents even chose not to add another “leg” onto their California-to-Texas-and-back trip as we had hoped and discussed.
Lying in bed each day this past weekend was broken up by a few meals in the kitchen, barely recovered from intractable back pain that sent me to the emergency room this past Monday.
My LLMD decided to treat my back with his chiropractic finesse despite my visit lasting 15+ minutes beyond when his timer went off. He never does that. I benefitted tremendously.
The new antibiotics prescribed to treat a co-infection of (chronic) Lyme disease has had the effect of increasing my most noxious symptoms instead of alleviating them. My private pay costs increased $45 each week instead of decreasing as my treatment days diminished from 3 to 2.
The compounding pharmacy is now able to make my prescribed mineral IV treatment after declining the ability to craft the prior prescription, saving us hundreds of dollars and incredible inconveniences travelling to a clinic 2-hours from home. My home health nurse reports that the new plan meets the criteria of her agency so we can schedule the start of bi-monthly infusions within a couple of weeks.
Two home infusions were cancelled during the transition from one antibiotic to two but my home health nurse was off sick those days that I usually received treatment anyways.
I sent an expedited check to make a payment for the medical bills on my credit card by the due date but the credit union never received it. Someone named “John” supposedly signed for it but it was never found. They reimbursed me for both the check and the “stop payment” fee.
I could go on . . .
If there is anything that I have learned over these 5 years of illness is that things are never as they should be. Well actually I knew that long before 2011 from my work with PEOPLE in healthcare. Peeps are finicky, change their minds, let you down, show up late or not at all, get sick, get on board with the program eventually, give into emotions over reason, love you anyways, or just plain old don’t care sometimes. In the end it’s not about the individuals really. It’s about where I am placing my trust.
A wise pastor (Bill Hybels of Willow Creek Community Church in Barrington, IL) once preached that we are to, “Trust God, Love People.” Yes indeed. Our ultimate hope for things turning out the way they should be should be in the person of Jesus Christ. We are to love everyone else as unto the Lord. Only He will never forsake us, never fail us, and deliver right on time every time.
Alrighty then. This rant is now over. It is just before sunrise and my nurse will be here in a few hours to administer my care. I seem past the bewitching hour of the nightly seizure attacks so I will probably try to get a nap of sorts. Two bags of antibiotics tire me out so I would have needed a long nappy-poo/recovery period afterwards anyways. I will trust that the Lord’s will will be served once again. So before I stop making any sense at all, I will end here.
It’s time for a yearly brain dump, hopefully keeping my heart in the right place (2 Corinthians 4:20) as I do so!
The last Treatment Update was quite bleak and posted when bedridden most days of the week. I am grateful to report that it is no longer true! As I described briefly in the About Julie page accessed in the side bar of this website, in January of 2016 I did proceed with the treatment of neuro-Lyme disease with 3x/weekly IV infusions of Rocephin (aka ceftriaxone), initially administered daily for 2 weeks. Insurance stopped paying for the treatment after the first 28 days so I quickly transitioned to home infusions via a home health agency. My time has been consumed managing the medications, supplies, scheduling, set-up/laundry tasks, and more required in having these and other treatments right here in our living room. I also started full spectrum infrared sauna treatments 1-2 times per week. The ongoing expense is tremendous and frankly has depleted most of our available resources.
But has it helped? Yes: I am doing better than I noted on November 11, 2015. Except for a recent increase in symptoms (suggesting treatment resistance and a need for a change in medications), I am no longer having convulsive episodes 2 to 5 hours per day with one day exceeding 12 hours about every 2 weeks. I am no longer bedridden most days of the week. Most weeks I can get out for essential errands such as grocery shopping and gratefully I was able to paddle our outrigger canoe or more stable kayak 5 times this past year. I praise the Lord for this progress! My reactivity to noxious stimuli and mold has diminished about 30% allowing me to participate in a social function about one time per month without a marked increase in symptoms. I attribute a good part of this progress to my work with brilliant naturopathic physician and genetic coach, Dr. John Catanzaro, of Health Coach 7. There is more work to do however. Progress remains slow.
After much struggle, prayer, and perhaps a leading of the Holy Spirit, I consulted with my Lyme Literate Medical Doctor (LLMD) earlier this week regarding a change in my treatment plan. He has decided to change my medication to a combination of IV Rocephin/Zithromycin regime for Bartonella: a co-infection that often accompanies borrelia burgdorferi (which is the primary bacteria of Lyme disease). Bartonella is often associated with seizures, peripheral neuropathy and some lesser symptoms that are a part of my clinical picture. Oral antibiotics of minocycline and Plaquenil may follow; it is common to use multiple antibiotics currently for Lyme disease when chronic with neurological complications. There are ongoing supplements for treating biofilms (ie. the mucous membranes in which the organisms hide), detoxification, and nutritional goals as well. The new treatment plan begins tomorrow . . .
I am required to have the first dose of the new medication administered in a medical facility before it can be administered by my infusion nurse in home health care. So tomorrow I will re-visit the outpatient clinic of our local hospital where this phase of treatment began earlier. I have come a long way since then!
Starting an IV or accessing my power port used to trigger up to 20 minutes of violent convulsive episodes every single time! Sometimes I had to be accessed in more than one peripheral site due to the collapsing of my veins, hitting the valve of a blood vessel, or the pain/severity of the procedure. The started isolating me in a private room due to the concurrent involuntary screaming episodes! That is no longer the case. Also, the entire infusion appointment used to require me to be at the hospital up to SIX HOURS before I was stable enough to walk out the door. The nurses in the outpatient clinic left at 5:00 p.m. so they would transition my care to the staff who worked until 8:00 p.m. so I could sit alone in the quiet, deserted treatment rooms until the post-treatment episodes resolved. Again, this is no longer as severe. I do miss watching the remodeling shows on HGTV during the treatments, however. We don’t have cable TV at home!
The journey has been long and difficult: October 11th marked 5 years since I got sick with viral hepatitis after kayaking in the Cedarville Reservoir near our home and November 20th marks 5 years since the first seizure attack episode. I have cried many grievous tears for so many different experiences of loss and incredible suffering. There have been 3 minor surgeries with only 1-2 days of pain medication each time; the number of convulsive episodes is in the thousands. I have now had counseling to cope with the trauma of this extended illness and to prepare me for the day when I will recover, return to life. By the grace of God I have been able to complete the continuing education credits needed to keep my occupational therapy license active although I have not been able to work since February of 2012. My husband and I have faced unbelievable stress, the depths of heartache together. And even so, we are hopeful that someday I will recover fully.
Our Lord, Jesus Christ, has stated that those who believe in Him will have strife in this world but to not lose heart: He has overcome the world (John 16:33). He has been the strength that both Steve and I have needed to endure and overcome the worst hours of torment (Psalm 73:26). He sent His son so that we would not die in our sins of the consequences of living in a sinful, fallen world but have everlasting life (John 3:36).
This means that my life will go on beyond these struggles, this suffering that I have endured and one day be with Him without the tears of this whole ordeal (Revelation 21:4). That special kind of joy and peace shining in my heart even now will blossom into all joy and dancing as I trust in my Lord and Savior through it all (Deuteronomy 31:8). I have cried out to Him on my bed of sickness (Psalm 41:3) and He has led me by His Holy Spirit time and time again (Mark 13:11) as He did the disciples before there time of unimaginable persecution. My suffering, our suffering pales in comparison to that which persecuted Christians endure every day for their faith.
Thank you Lord for helping me and Steve to endure this illness. We are encouraged for my progress and sense that it has not been wasted: I raise this testimony up to you that Your glory may be revealed in our lives. (Romans 8:18) To You alone be the glory. Please bless the Gentle Reader reading this today. Thank you for loving us and bringing us together (1 Corinthians 5:4). In the name of Jesus Christ I pray. Amen.
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
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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