For my followers that did not get the video on the post that was emailed, please click on my title and it will take you directly to the post on the blog and the video is there. Sorry for the hassle. 🙂
For many of us with Lyme disease, it’s so difficult for others to understand. One minute we are doing everything that seems “normal” and the next we are in crash mode. Our bodies just don’t operate with any consistency. As I watched Under Our Skin again last week, I was reminded of how so many of us outwardly look “normal” to others, yet inside we are writhing in pain, exhaustion, and discomfort. What is seen on the outside is quite different than what is going on inside. While the outside looks content and at peace, on the inside there is a battle. A battle of immunity vs. borreliosis. A battle that isn’t won by either, as long as there is treatment, yet a battle that drags on without end in sight, so it would seem. One side trying to overtake the other.
I remember watching the attached when I was early diagnosed and I wept. I wept thinking there was not an end in sight for me either and that I would be just as bad as Krista. Fortunately, at the end of the story, I found hope and was encouraged to look toward healing with a positive attitude. It reminded me that what I was experiencing was nothing in comparison. I looked at her age and thanked God that I had achieved 20+ years longer than she before crashing. Her story is quite extreme, with some additional co-infections that riddled her body for several years prior to them finding out the cause. It’s difficult to watch, yet it’s so real. Her story is similar to Julie’s, in my last post, in that their co-infections and symptoms mimic one another. If, you have the heart to watch, please do so with tissue and with the reminder that there is healing.
Lyme is nothing to mess around with, yet it is not something to be terrified of. With the rates rising of Lyme disease, everyone should be aware of what kind of symptoms can be observed from just a tiny little tick. The bacteria that can make a body deteriorate quickly may be small, yet they are definitely a large scale concern. I encourage everyone to please understand Lyme, it’s affects on the body, learn how to recognize the symptoms early. Before thousands of dollars are spent on trying to come up with a diagnosis.
Please remember also, when someone is diagnosed with Lyme, we don’t want to be defined by it, yet we want people to understand that every day is a balancing act. Every day is a new day. We cling to hope, even though we get frustrated, and we pray knowing that only God will get us through. With my own experience with Lyme, I have said that I hope I can help someone else someday. I hope that my own journey will be an example to someone else in a positive sense and that none of what I have experienced will be wasted. Just as Krista has endured and shared, she also has educated which is what I am trying to do as well with this blog. Thanks for taking the time to read and to watch.
It has been a pleasure to know Julie and her husband Steve. I met Julie through our blogging and have since then been able to meet her in person on two occasions, and have had the pleasure of reading scripture and praying with her nearly every Thursday night through Skype for the last year and a half. I adore her upbeat attitude when life seems to try to keep her down and her love for our gracious Lord and Savior Jesus Christ. I have witnessed first hand some of the episodes that take Julie’s body to an extremely vulnerable place and have also seen her rebound back to a smile a few moments later. She credits her strength to the only one who gives it in such times, making her all the more someone to look up to. Hugs and smiles to you Julie…. 🙂 (Wish my picture would download…)
Here is her story and I hope that you will also check out her blog for more on her struggle with Lyme.
The Hope Beyond story began after kayaking in the Cedarville Reservoir in Leo, Indiana on October 11, 2011. What a great time I had with my husband, Steve, and the Fort Wayne Kayaking Group including enjoyment of Louise’s fabulous cookies afterwards! The only problem with our paddle that night was a few sanitary mistakes I made that led to a devastating bout of hepatitis, trip to the emergency room and over a month of wretched illness. The Lord healed me enough to enjoy a family trip over Thanksgiving weekend then symptoms returned thereafter and never really abated.
By January of 2012, my doctor was looking for other causes of the ongoing illness. He identified Chronic Lyme Disease largely by exclusion and clinical presentation; I may have had it for years! Treatment for Chronic Lyme Disease began with oral antibiotics and immediately I was exceedingly miserable. By March I was no longer able to work in my profession as an occupational therapist. We invested in Rife technology coupled with low dose antibiotics, compounded medications, and specific pharm-grade supplements. Daily seizure attack episodes began shortly thereafter and escalated to an unbelieveable level. (See more on my You Tube Channel.) A year later in January of 2013 Steve and I learned that mold in our home was contributing to these neurological complications. We fast-tracked the mold remediation of our home in three months so I could continue to live there! It turns out that the blue-green algae in the Cedarville Reservoir and mold exposures are both “biotoxins.” Then as 2014 began the big focus was on resolving a systemic Candida infection with even more restrictive dietary changes. Sish.
2014 ended with the bombshell news that underlying all of this illness was mercury toxicity!!! I investigated chelation then pursued the best mercury speciation testing and detoxification protocol I could find thanks to my chiropractor, family practice physician, and Quicksilver Scientific. Removal of 2 problematic, root-canaled teeth followed. While the journey of recovery continues to be difficult over four years down the road, I recognize the many cool little life lessons along the way that have served to grow my faith in the Lord no matter what happens to me! And now with my mercury burden down, my beloved Steve and I are hopeful that I AM GOING TO GET WELL!!!
The Lord, Jesus Christ has provided for our needs during this time and directed us through Steve’s leadership, love, and care. The tremendous trials have also brought Steve and I closer to each other and to the His throne of grace. When the isolation of this disease got unbearable, He brought me a local Lyme Support Group, Skype Bible Prayer Group, new friends, my own eBook (Hope Beyond Lyme: The First Year), and meaningful connections with others online including this blog! Somehow I became an Advanced Master Gardener along the way. A new hobby kept my hands busy when I couldn’t sleep and led me to open then sell my jewelry shop on http://www.Etsy.com called, Trinity Jewelry by Design. Although I attempted to write a second eBook (Caring for the Sandwich Generation at Home) and develop a unique home safety product for Two Step Solutions LLC, the severity of the complications rendered me bed-ridden this past summer, many days per week. These projects are on hold for now but not forgotten!
UPDATE: January of 2016 began the time to revisit the diagnosis of Chronic Lyme Disease with IV antibiotics, experimental treatment for a fungal infection (protomyxzoa rheumatica or FL1953), and genetic coaching by a naturopathic physician. Gratefully I am tolerating everything a bit better than when this journey began 4 years ago. Overcoming a complex illness takes time and persistence; I am grateful to report that the wretched episodes are finally starting to diminish! KNOW THAT I HAVE NOT GIVEN UP! I hope that you will see evidence of this in my posts here. The Lord continues to provide comfort and hope from my Heavenly Husband and gracious Father: awake with me in the middle of the night as well as in the light of the day, now and evermore. There is even a little bit of dirt under my fingernails from a wee bit o’ gardening too!
At some other life-changing points in my life, the Lord gave me these promises from His Word:
Jeremiah 29:11 (NIV)
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Romans 8 (NIV)
38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
Philippians 1:12 (NIV)
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.
Gentle Reader: join me on this amazing journey! I know that the suffering during this part of my life will not be wasted. My prayer is that it edifies the Lord and is constructive for others too. Click on the “FOLLOW ME” button along the right hand column or at the bottom of your screen. Thanks so much for taking the time to read this blog and for your support. May the Lord bless you and lead you to Himself . . . a journey always worth taking! :JJ
For those who follow me, I did post a few days ago my story on Lyme. Due to a system error it did not go out through email. You may click on this post and go directly to the site, click on previous post, in order to read my story and my health history I believe is attributed to Lyme.
I shared with you my story a few days ago and now I would like to share a story of a dear woman whom I met while on this journey. I have been following her blog posts and connecting with her through email and feel confident in calling her a friend. Please read her story and that of her family. (https://thepersonnexttoyou.wordpress.com)
Treatment Tuesday ~ My Lyme Story
Posted on June 23, 2015
Of all the things I write about here on my blog, I realized that I have never told my Lyme story. I have been asked many many times, and I suppose it would be good to put it out there. Maybe it will help someone else that is on the same path with trying to get answers from doctors about what is going on with their health.
I was born with a hole in my heart, and had an open heart surgery when I was five. As a kid, I seemed to be prone to medical problems, and had many surgeries by the time I was 10. I knew what a ventricular septal defect was before I knew how to play with Barbie dolls. Sounds dramatic, but it is true.
As a teen, I always had issues with my heart racing. I figured out (on my own) how to do Carotid Artery massage to minimize the episodes (slow my heart down), as well as drinking milk or eating a banana as soon as possible. Even if it was only a mental thing, it worked.
For the Lyme part of my journey, I will start here:
*I don’t remember ever being bitten by a tick, but we were avid hikers.
From 1996 to 1998 I had spells of extreme dizziness. Eventually I was diagnosed with “Benign Positional Vertigo.” This eventually resolved itself, and was replaced with extreme gastrointestinal pain all the time. After ultrasounds, medications, and even talking to a therapist (docs thought I had too much stress), it eventually subsided after… YEARS.
Looking back, I think that this was the beginning of my Lyme journey. I think the dizziness was Lyme, and the GI issues were Bartonella.
Fast forward to 2003. I had never felt right after the vertigo. My stress levels were always very high, my stomach would upset easily, and I was afraid of everything. I went through periods of not sleeping well. In early 2003 we went on a ski trip, and ended up with Bursitis. I was put on… you guessed it… Prednisone! Then the shit REALLY hit the fan and was never the same.
Not realizing that any of this had anything to do with Lyme Disease, I found out I was pregnant in May of 2003. For the first seven months of my pregnancy, I felt better than I had ever felt in my life. I was hungry (typically my appetite was and still is small). I was sleeping. I felt happy, hopeful, and aside from one day of nausea, things were great.
During my seventh month, it all fell apart. I started getting searing headaches/migraines. I couldn’t sleep. My heart started racing, and I ended up in the emergency room with tachycardia (320+ beats/minute). I was admitted, given a partial electrophysiology study (where they test the electrical pathways of the heart), and put on bedrest and beta-blockers for the rest of the pregnancy.
In early 2004, Poppy was born. My health issues were not over. Still having anxiety, tachycardia, not sleeping (even for having a new baby), and was afraid to drive in case I had one of these attacks in the car. In April of 2004, I had a second complete electrophysiology study, and found out I needed an ICD. That is a pacemaker with a defibrillator built in, you know – in case my heart decided to rocket out of my chest again, I would get a “shock” and bring it back to regular speed. I also had an ablation due to a block in some of the nerves in the heart.
I honestly don’t know that the heart issues are totally related to Lyme. Maybe the sudden increase in tachycardia was because the Lyme was affecting the problem that was already there, but I have since read many stories of people needing pacemakers and having ablations for the same kind of blockages that I had, and they have Lyme. My heart issues are in the electrical part of the heart, not the plumbing part. So, the jury is still out for me on this being Lyme related. But, worth mentioning because of possible correlation.
The next few years (2004-2007) were full of the highest anxiety I have ever had or ever knew possible. Being a new mother, having health issues, and now a device in my chest that could deliver a shock anytime was quite terrifying. I had a big depression during these years, and thankfully my parents are extremely supportive and helped me through it. We even had a period of time where we were living with my parents because I was afraid of being alone with the baby in case something happened. Those were some dark days.
During that time, I was also having a LOT of pain in my lower belly. My ovaries always felt swollen and painful. I was having bad headaches/migraines cyclically (which I later figured out was during full moon and new moon), and sleep – well, I DIDN’T sleep. I eventually had a hysterectomy. The doctor had suspected possible Adenomyosis (cousin to Endometriosis), but was not able to confirm it even after testing.
I think the insomnia is Babesia. Hormone issues? Well, that is a combo of all this Lyme and co-infections after reading through the symptom lists.
The kicker? The pain didn’t go away. Any of it.
In constant pain, wrapped in a prayer shawl waiting for a miracle…
In constant pain, wrapped in a prayer shawl, waiting for a miracle…
In October of 2008, I had to go to the emergency room, because I couldn’t breathe. My lungs felt like they couldn’t expand, and my breathing was shallow. I had a nebulizer treatment, was put on… PREDNISONE and antibiotics, and sent home. Did I mention that one of my lungs was partially collapsed? Good times.
This went on for over a year. Coughing, labored breathing, pulmonary function tests, allergy testing… everything inconclusive. Antibiotics and Prednisone was the answer to everything. I finally stopped taking all the garbage because it didn’t make these issues go away. Eventually it faded away on its own.
I believe this whole thing was me suffering from Mycoplasma Pneumoniae, a co-infection of Lyme Disease.
In the meantime, I was still having pain in my ovaries, migraines that grew worse as the years went on, and anxiety and insomnia. Added to the stress was that Ivan was also having a lot of symptoms, and Poppy was demonstrating traits of Autism. That is a whole different story, but needless to say, life was not fun, easy, or enjoyable during these years. I tried to be positive, but this all got the best of me for a long time.
It was also discovered that my thyroid crapped out. I get to be on meds for that for the rest of my life. Joy.
In 2012, I went to North Carolina by airplane to see a friend. I was sick and had a migraine for 24 hours after getting there. Looking back, anytime I travel by plane or car, I get sick for the first 24 hours. Planes are particularly bad for me.
In 2013, I had an episode of swollen glands in my armpit. I have since read that this is a Bartonella symptom.
As you can read, this has not been an easy road. This disease has taken so much from me in the last 18 years, and by the grace of God, in 2013 we were led to a naturopath that eventually figured out that our whole family has this and needs to be treated. I don’t know where we would be today if we had not seen her (to talk about Autism!)…
I tried talking to my regular doctor about Lyme after seeing the naturopath, but she was cruel about it, really. But that is a memory I would rather not share here because many of you know the experience of a disbelieving doctor first hand.
If you are a regular reader, you know that I started the first phase of treatment in December of 2013, by modifying my diet, getting more rest, balancing my hormones, learning how to detox my body, and preparing for the phase of treatment where we would go after these bugs/bacteria. I didn’t start the killing phase until just a few months ago, but all the prep work was worth it. This disease is not a “30 days and you’re cured” kind of thing – no matter what your family doctor that you trust and love tells you.
Many of you know what people go through to get a proper diagnosis, so to have a doctor mention this first was amazing. I honestly had no clue that all of us were suffering from this. I thought each of my medical problems were isolated and unrelated.
So here I am, 18 years later, and a whole lot wiser. We are all on the path to remission, thanks to perseverance, education, and a damn good Lyme doctor on our side.
We have been through many treatments at this point. I don’t think there is one treatment that will work for everyone. I think that getting Lyme into remission is a combination of many treatments, and when you feel that you have plateaued on one, it is time to move to another. One of the biggest and most important facets of treatment is to try to stay positive. I am not big on in-person “support” groups – people tend to be very sad and angry at these things, and that is not a good environment when fighting this. I have a couple Lyme buddies, and we share war stories, but we stay on the path of remission together.
That is my Lyme story. I cut out some of the graphic details, but you get the idea, right? Chances are you are walking the same path right now, or you are being blown off by doctors and specialists. I hope that you are led to a good Lyme doctor that you can partner up with and start treating this.
Please feel free to contact me if you need help or have questions (scroll down for the contact form). I don’t wish this disease on anyone, and if I can help you have a shorter road than we have had, then I am happy to help.
Please feel free to share this post with someone that you suspect may be going through medical problems that are being misdiagnosed or blown off by doctors. This disease is spreading, and over 300K people per year are diagnosed. Now add all the people that are misdiagnosed? That is a LOT of people. It is in all 50 states, contrary to what the CDC will have you believe. I have met people that contracted this in downtown San Diego. It is everywhere.
I will give thanks to the Lord with my whole heart; I will recount all of your wonderful deeds. I will be glad and exult in you; I will sing praises to your name, O Most High. (Psalm 9:1-2)
Giving thanks to the Lord, how sweet is my soul that I have the ability and the freedom to do so. Have you ever thought about how incredible it is to thank Him? To thank the one who has given so much more than we can imagine, without seeing, only knowing. To think about the incredible blessings that have been bestowed on this lowly being brings joy to my heart.
I have had problems writing on my blog the past week and therefore I am late in writing to you all. This is now May and it is Lyme Awareness Month. I have asked a few to share their stories and there are more that I would like to repost here for all to read. Think of it as an opportunity to be educated on this very real illness that plagues so many.
To start, I thought I would begin with my own story.
In July of 2013, I was very busy gardening in my own yard, working at a farm an hours drive away, and also sharing and working a large garden with a friend living 30 minutes from our home in the opposite direction. Previous to my full blown symptoms, I was noticing that I was having some balancing issues. I would step into the garden and sway slightly almost losing my balance. The first time it happened I didn’t think much of it, then it happened a few more times, giving me pause to wonder. I then woke up one morning early to mid July and as I walked down the stairs, I felt as though my foot was dragging. I had to keep looking down to make sure my foot was on the step. This continued for two weeks before I began to really get concerned. At about this same time, I also began to feel very tired. Who wouldn’t…I mean, all I did was work outside, travel with the kids and the band and try to keep up with cooking and housework. Every week I ran around non stop. The exhaustion however, took on a whole new level of “tired” when I would nap on the couch only to have my eyes feel like they were glued shut and I had to physically pull them open. My body also was physically unable to move. I could hear everything, and wanted so badly to communicate with others yet my exhaustion was so bad that I couldnt’ even form complete sentences. I wondered if I had had a stroke.
When the chills set in and the pain in my body was so bad that my husband couldn’t even hold my hand without me feeling like I wanted to scream I knew it was time to call the doctor. I gave her all my symptoms and she recommended two tests, a test to look into Rheumatoid arthritis and another for Lyme disease. What? Lyme? We pray for a gent at church who we rarely see because his symptoms are so bad with Lyme. So we ran both tests, and the Lyme was positive. The symptoms I was experiencing were more late stage Lyme, and in conferred with my doctor I requested a more natural approach to healing. Things began to make sense with the research I had been doing. Symptoms that were unexplainable for so many years. Was there finally a diagnosis?
I had at an early age, pains that would go up and down my legs throwing me into a tizzy because the pain was just awful. It was thought maybe they were growing pains or a mineral deficiency. Nothing would help them. I used to try hot baths, hot tub soaks, bananas for potassium, Tylenol, Alleve, the list goes on. I am now wondering if that could have been the start. I mean, we played in the woods all the time. The girl across the street had a tick on her head. They were definitely around. From the research I was learning that Lyme can lie dormant for not only months yet also years.
The summer after 8th grade, we had taken a trip to the east coast. When we were in Maine, I had an episode that had me nearly collapsing and my dad carried me back to the camper so that I could rest. Yes, we were camping in the east. Hmmmm….
In high school I began having what was diagnosed as superventricular tachycardia’s. At first we thought I was hyperventilating. Having them through college and early into my marriage, I finally had a heart ablation to alleviate the symptoms. CAUSE? Unknown! Amazingly these symptoms began the school year after the summer trip out east. Another hmmmm….
Before homeschooling, the kids were in public school. I was there nearly everyday volunteering in some capacity. I used the bathroom one day and about 2-3 weeks later I noticed a rash ring on my leg. Now, it wasn’t too high up my thigh, yet it was a ring. I actually thought it could be ring worm and I treated it and didn’t think about it again. Something to note is that this was also during the time that I would run the trail which was in the woods at our lake cottage.
About a year later I began noticing my energy levels dropping, I was feeling some of those pains again that I had had in my earlier years and I was just generally not feeling well. I also started gaining weight which I could not lose. I laugh that I was a weight watchers drop out. I went for three months, followed their diet and exercise plan only to gain weight. WHAT? Yes, I gained weight. WW had worked for me in the past so what in the world was going on now? I found an internist that tested me for Rheumatoid, fibromyalgia, thyroid and more only to receive results that were inconclusive.
Fast forward to our current home three years here. I found an integrative doctor who tested me again for the above, only this time with proper testing, found that I was in fact hypothyroid, I had cortisol issues, my adrenals were on shut down, and not only was our son celiac, we all tested positive! Mine turned out to show I was severely. Three of us also tested positive for food intolerance’s.
Hence, the reason the doctor and I both agreed that all of my above issues were likely the symptoms of the underlying issue, Lyme disease. It’s not too difficult to believe when you begin to read about Lyme and the symptoms that have plagued others for years. I must have either been bitten again, triggering a full blown Lyme reaction or my immune system and adrenals just could not cope with my activity level that summer. I had showed my son a deer tick that I found while gardening…guess I should also have checked over my body when we were done. Ironically, that was the same summer that our son had 4 rounds of strep back to back. Coincidence? I think not! Especially since both of us got sick after that little tick show and tell moment.
In all I spent 10 months battling fatigue, brain fog, speech issues, memory loss, extreme daily pain, loss of balance, tinnitus, hearing sensitivity and multiple co-infections and viruses that attacked my body. I could not walk down the driveway and had to use a wheelchair for any distances longer than a few yards, I could not walk up the stairs at night without almost passing out, I was unable to bend over to pick something up without losing my breath and almost passing out, I was falling asleep at 5 at night only to wake up at 2 with insomnia and then would fall asleep at 6 or 7 in the morning without waking up until 10. When I would lay down for a nap, my eyes felt like someone had sewed them shut and yet I could hear everything going on around me. I remember telling my husband that I wondered if that’s what it’s like for someone whose comatose. To hear everything and wanting to speak out yet not being able to.
One virus I acquired attacked my heart and I was told complete bed rest was necessary. The virus I had actually has 6 strains, of which I had tested positive for 5 of the six. If I wanted to make dinner, I was to have others wash veggies, cut them and all I was allowed to do was put it into the oven or give directions. I was showering every few days when I had the energy to actually do so, I wasn’t able to speak clearly when I was tired as I sounded like I was inebriated, I would try at times to talk to my family or friends and the words would just not formulate in my brain. I would forget names of people that I’ve known most of my life and I couldn’t remember the names of items or things, like trees or squirrels.
To friends and family it was the most shocking thing to watch, and for me I was determined to survive. When I was able, I read and studied as much as I could about the bacteria that had changed my life. I was determined to educate myself and my family so that we could all understand and cope together. I was also determined to overcome and I prayed daily that the Lord would heal me and use what I had been through to help others. I studied God’s word knowing that His truth would set me free from the bondage that I was experiencing. That my experience and what I had learned would be of value in helping others to heal. The experience of keeping my head up and remembering God’s grace in my life and His healing power was something I held onto and hoped others would see. I prayed that nothing our family was going through would be wasted, only that we would be able to encourage others, from the side of the patient to that of the caretaker.
Without failure, Gods plan and blessing for our family was for remission and for enough healing that life has become a little more normal. It is not what it once was, yet it is definitely better than what it had been. I still have moments of brain fog when I’m tired, I still have exhaustion when I do more than I should, and I still have pain as well when the weather is changing. My immunity is terrible and I catch everything I’m exposed too. Living in a bubble is not an option. The tinnitus in my ears is becoming the new normal and the change in my eyesight has me slightly troubled, yet I will not fret.
This blog began when I needed something to do to keep my mind active. It has become an avenue for me to share what I know to be a help for others. I have met and prayed for so many affected by Lyme the past few years, and I praise God for the opportunity to understand it and learn. Education isn’t cheap, and trust me when I tell you that my medical bills and supplement bills monthly/bi-monthly speak to that. I do however value that education that I have been given and I see it as part of God’s plan to help others in their own healing. I do keep in mind that you can lead a horse to water, you cannot however make him drink it. Every person with a debilitating illness and unknown or questionable diagnosis has their own decisions to make in their healthcare. For me and for my family, we continually ask the big question….why? For every symptom, there is a cause. Nearly all causes are bacterial, viral or parasitic. Which one is the cause and what the adequate treatment plan should be is the challenge. Finding the right doctor that will hear what you have to say and that will educate himself/herself are the doctors that I find to be the ones pioneering in the healing of Lyme.
I hope to continue sharing information, educational materials and other stories of faith and healing in dealing with Lyme disease this month. If you are a Lyme warrior, please email me your story and let’s share with others how to cope. Keep in mind, you are not alone.
Remember, this disease is estimated to surpass breast cancer. You will or do know someone who is affected.