In Christ there are no “coincidences,” just Divine touchstones: those events orchestrated by the Lord for our good, for His glory. Sometimes we get to see His hand and sometimes we don’t. And other times things look too dark to come from our loving, sovereign, holy Father. These can all be quite mysterious this side of heaven, eh? Less so for me these days. My faith has grown to trust the Lord in all things (even the ones I don’t understand). Allow me to elaborate from my world of late.
I was walking into a medical appointment today and saw a glove lying on the sidewalk next to an adjacent garage. I used a tissue to pick it up since it looked soiled then I noted that it looked quite familiar. Yes, it was the glove I had “temporarily misplaced” last week! But how could it have remained here in this sort of prominent place unnoticed for seven whole days? Who knows? Chances are that I dropped it off my lap onto the blacktop when I exited my vehicle and it simply blew over to the sidewalk inch by inch until it’s black silhouette was easier to see against the lighter-colored cement. The staff person in the office helped me figure it out. I was dumbfounded!
Similarly, I have found little God-moments in the arduous process of transitioning from IV infusions at an outpatient clinic to my home. When you are forced into a private-pay healthcare service there is no one to assist you with navigating the 18 agencies, 6 pharmacy/supply companies, coordination of care, financial arrangements, medical orders, and “GO” button to make it all happen within a week of making the decision to do all of this. Today was treatment day number 2! Whew and thank you Lord! I have been taking more naps since it all came together probably due to the stress of it all more than anything else. There is still more to do but hey, no worries. I’m on it!
The research the Lord empowered me to do has become another blessing. First, the pharmacy I initially chose did not have the Safe Set Huber needle that would work better than what I had been sent to access my power port. My nurse was able to quickly contact another provider on my list to have the one pictured above and some other supplies sent to my home in time for treatment #3. No problemmo, the pharmacist essentially personally texted me from her home late Friday afternoon. Now that’s service!
In another example, it looked like renting 2 infusion pumps would add a lot of expense and complexity to the home care until a “mistake” happened during one of my last treatments at the outpatient clinic. The lab mixed the reconstituted antibiotic with the 500 cc of normal saline instead of dispensing them separately. This would change the dosing that we had landed on to prevent seizure attacks during the hour-long infusions. As it turns out, I tolerated the combined treatments just fine. So there would be no need for the rental of 2 pumps, no extra expense, and not even a need for expensive, pre-filled “ball” or elastomeric pumps. I ordered an IV pole ($20) and the meds pre-mixed into the bag of fluids instead. Cool beans. But all this still does not mean that I want to become a nurse ya know!
The Lord is in the details of our lives, Gentle Reader. He knows them, He sees them, He cares about them, He grieves them, He loves over them and us too. Just when we think that God is nowhere to be found, we need to look a little more closely at the small stuff. We need to move the space from “God is nowhere” to “God is now here.” He never leaves us or forsakes us (Hebrews 13:5, Deuteronomy 31:6) even in the midst of trials. The trials may be the very place when we may see Him the best. Take a look this week and be sure to tell me about it, k? JJ
Lord willing, later this week I will transition from IV infusions of antibiotics from an outpatient clinic to home health care. Our insurance company denied treatment beyond 28 days, leaving us with a massive bill if my secondary insurance will not cover ongoing treatment. Since it will take several weeks to find out the verdict, we cannot keep paying $900 per treatment, 3 times per week while we wait! Hiring nurses (from a home health care agency and one in private practice) on a private pay basis plus ordering supplies and medications online will reduce the price to around $300 per visit. Planning this transition has required considerable time, stress, attention to endless details, and work! The orders are in process with many steps to follow in the next 2 1/2 days. A LOT HAS HAPPENED IN THE PAST 5 DAYS to make this happen. Thank you, Lord, that my brain has come back online just in time. Whew!
I just found out that DNA testing from Fry Labs shows that I do have the FL 1953 protomyxzoa rheumatica (a fungal infection) that can be found in 50% of patients with chronic illness. This parasite survives in the body in the impervious gel-like biofilms that also make Lyme bacteria difficult to eradicate. My LLMD has recommended a combination antifungal (prescription) and biofilm-busting (nutraceutical) protocol that he says could render me very sick for a minimum of 4-5 weeks. Most patients have tremendous recovery thereafter; gratefully I am hoping that the binding agents I have discovered will be an effective adjunct to this treatment plan and reduce the die-off or “herx” reactions. Steve and I are prayerfully considering how to proceed as we were hoping to visit family for an important event out-of-State in a few weeks now that I am “not as bad.” Please pray too! I am soooooo ready to start living again!
Working with a brilliant naturopathic physician via Skype to review my epigenetic data, lab tests to date and medical/treatment history has finally led to some nutraceuticals that I can actually tolerate. Soon I hope to add specifically formulated IV and injectable nutritionals to the home infusions (instead of driving to a clinic we were considering far from home twice per month). And the excitability of my central nervous system is starting to come down at last: generally fewer and shorter convulsive episodes every day for the past 2 weeks. This has not happened in the past 4 1/2 years until now! PRAISE THE LORD! Experimentation with an Iodine Loading Protocol has further enhanced my results. I have to think that I am on the road to recovery at last . . .
Steve and I are encouraged, humbled, grateful, and watchful as the events of these past few weeks have unfolded. I have been able to get out for a walk once per week and work in the gardens around our home some. Some of the pain and headaches that I battle every day have improved; I don’t really complain when it’s related to digging in the dirt as the sun is going down . . . I feel blessed to have had the friendship and support of a couple of friends here for rides to-and-from the hospital for treatments lately too. And we are starting to plan some of the activities again that we used to take for granted in the past: think Steve’s kayak races, the Tin Can Ranch (travel trailer), and the pup in tow as well.
Enjoy this lovely song that reflects the hope that is becoming clearer for me. I hope that if you are struggling, you will lean on the Lord, Jesus Christ to see you through and keep your eyes on the goal what ever that may be for you. He knows and loves you, cares for the desires of your heart too, Gentle Reader. There are sprinkles of His goodness all around us no matter what the circumstances. Let not the first time we recognize this as only when the healing comes. Let today, this moment be a reminder that the waiting, the “pressing on” as Lisa sings, is an important part of the journey too. Praying for you this night. 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.
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
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!
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
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