Tag Archives: Lyme Awareness

Looking Back and Seeing Blessings

When I was first diagnosed with Lyme disease, EBV, co-infections, mycoplasma pneumonia, etc. etc. I wondered how I would survive and how I would get my life back. I’ve shared my story and I’ve shared my journey through Lyme and yet I am still in awe that I have been blessed with healing and have come so far. The Lord has given me strength when I thought I had none, he gave me hope when it was far reaching, he gave me His Word when I needed it the most.

I was asked a year ago, if antibiotics work, why don’t people hear about it and why aren’t those who are healed talking? Well, I responded with the fact that those who have been given a second chance at life are living it. They don’t want to relive the horror of Lyme. The exceptions are people like me who carry on trying to bring awareness and share with others so that they too can be educated on symptoms. Lyme is considered the great imitator for a reason. So many of todays throw in groups of diagnosis, when there is not an answer to “why”, can be and very likely may be Lyme disease or one of the co-infections. The testing is flawed on so many levels and doctors do not have the resources they need to diagnose.

I am one of the “lucky ones” you could say. I say I am blessed beyond measure. So are many others. They are sharing their stories in incredible ways. One such couple, I’ve been following since my journey began. This was one of the first videos I found on Lyme disease. I was heartbroken, and my adrenals went haywire with the emotional rollercoaster of this video, however, it gave me hope. Hope when I needed it the most, when the pain was excruciatingly bad, and when in most people’s eyes there shouldn’t be.

This video is still flourishing around and although its content is difficult to watch, I have to share with you before you watch it, that Justin and Christa now have 3 beautiful children and they are living normal lives. Christas journey is not unlike that of so many others that have followed in her journey since 2004. I am hoping that if you are watching this, you will remember that hope is something to hold onto, a mental place set in the mind when you need it the most. Pray about it and cling to it.

Be educated dear follower, Lyme and co-infections are the most widely spread vector borne illness in the country and in many parts of the world. Over 400,000 upward of 1 million are affected each year. Most of which are undiagnosed and or misdiagnosed. Putting that into perspective, Breast cancer has 264,000 new patient diagnosis each year. Hence you see the problem.

Here is Christa and Justins story:

http://www.justinandchrista.ca

Touching Base the Disulfiram Journey

Week 5

You have all been waiting I’m sure to hear how it is going. I have to be honest….its going great. I am half way done with my second week on 1/4 dose every day. I’ve started taking it at night because I notice, as have so many others before me, that it does make me drowsy. So at night, I can sleep it off.

Improvements:

  1. For the first time in at least 36 years, I am waking up feeling as thought I’ve slept through the night, waking without feeling tired and ready to get on with the day. I feel like a little energizer bunny that has so many things to catch up on and I’m actually getting them done.
  2. My constant Tinnitus, although still there, is much less in frequency. I’ve noticed that there have been days or moments in days that I do not have it at all. Wow! Maybe my hearing loss will slow down.
  3. My brain fog and word loss is also improving. I do not search as long for the words I want to say and I am feeling as thought the fogginess in my head is lifting. Kind of like the San Francisco fog, thick and mucky, slowly parting and allowing the sun to shine.

I know I still have a long way to go yet I am beginning to think that this is definitely the course of action for many who are on this journey. (Which, if the numbers keep rising, this may be the way to go for everyone. Especially since we are at a 1 out of 2 ratio.)

On a brighter note, we are planning a gala for the Wisconsin Lyme Network. We are raising money for the new Tick-Borne Illness Center of Excellence in Woodruff, WI.

This Center/clinic is the first of it’s kind in the country. They are researching, by collecting ticks and blood samples, while also diagnosing and treating. There are other clinics around the country picking up on this idea, yet we are the first state to have one. Thanks to OMI (Open Medicine Institute) and The Howard Young Foundation. While they currently need more staffing, they are treating patients and have over 150 on a waiting list. They even received their first international patient this week, coming from Canada.

The Wisconsin Lyme Network is raising money to help fund the gala, through sponsorships and general donations. These can be made through our website Wisconsin Lyme Network, in the secure donations section of the website. Once a donation is made, you will receive an immediate thank you for your tax write off. Please make sure that your donation specifically states in the memo portion that this is for the gala. We need sponsorships for the dinner itself, band, hotel and travel for the guest speakers, mailers etc. Any little bit helps and is graciously accepted. This is our first gala in WI and we are looking forward to this becoming an annual event.

If you are interested in attending, please email us and we will send you an invitation. The date is February 28, 2020. Yes, it’s coming up quickly. We will hear from the treating doctor at the clinic, Dr. Andy Kogelnik as well as Dr. Neil Spector. While Dr. Spector may not be in attendance, we are planning on him speaking through video. If you are not aware of who he is, please take a look at and read Gone in a Heartbeat. His story is an incredible testimony to the misdiagnosis that goes on when it comes to Lyme.

May is Lyme Awareness Month

Most people do not remember being bitten by a tick or remember a rash. Take a look at
letter D. Perhaps that’s because they never saw the grain of sand?

I woke up this morning to another call from a friend whose one child is treating for Lyme disease, while two others had ticks pulled off of them this weekend. A fourth child they had treated a years ago and they are discussing the symptoms of a fifth child needing testing. I am so grateful that my friends can call me and ask me questions about doctors or where to send the evil critter that made the human body a host for destruction. Without experiencing the hell of Lyme disease first hand, I never could advise.

Are you a skeptic? I was once as well. In fact, I remember giving books on natural remedies for viruses and bacterias, diet and more, to individuals we were praying for in church who were afflicted with Lyme. Little did I know, God would offer me the opportunity to experience the pain and agony of Lyme. I remember praying that should God allow me to recover rather than die, I wanted to use the experience I endured to help others and bring awareness and education to those who do not know otherwise, as I once was. Would I change what I experienced for good health? Nope! I would not. Why? The way I look at it, I was given an opportunity to experience what so many experience so that I can give back. Give back to a community that is not being heard. Give hope to those who have lost all hope and to be an example of what others can attain.

Newsweek ran a story recently that Lyme is expected to affect over 2,000,000 people in the next year. Whether or not you agree, the science and the statistics are not unproven. Most of these folks are undiagnosed, or wrongly diagnosed and not getting the help they need for remission. Some may also be improperly treated, as we know that more and more doctors are not educated in proper treatments. For some reason, even hospital administrators are having their hands tied to the IDSA treatment protocols rather than the ILADS. The infectious disease doctors are not allowing Lyme patients to be given the help needed. They stop willing doctors from CME courses that would give them the tools for proper diagnosis and treatment. Why? Question of the day as we celebrate Lyme Awareness Month.

If you know someone who is battling Lyme, give them a hug, lend them an ear, make them a meal or just be a friend. Many have lost relationships due to a lack of understanding,

If you have not seen Under Our Skin, please watch it. It is on Amazon Prime at this time. Check your local theater listing as well as sometimes there are showings during the month of May as well.

Prevention is key. Make sure that you are protected from ticks by wearing light colored clothing, socks over pants and treat with Deet products or Permethrin. Make sure to do tick checks not just on yourself or your children, but also on your pets. (I should also note that this disease is not limited to deer ticks…any insect or arthropod MAY be infected and transfer. NOT ALL DO, but they MAY.)

To all the Lymies out there, I stand with you, fight with you and pray that we will one day have a voice that will be heard. Ticks bite and we fight! (Motto from Wisconsin Lyme Network)

A Story of Faith and Determination

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.

Lyme Awareness Education

With May just around the corner, it’s important that people understand Lyme disease and chronic illness.  The warmer weather is approaching, the birds are chirping and the ticks are already awake and ready to begin their vampire behaviors.  As I look outside I see my son working outside to do some spring cleaning, I pray that he will be diligent about checking himself for the little buggers when he comes in to clean up.  I also pray that he will not find a tick nor be bitten by one.

Jenna’s Lyme Blog had a wonderful post yesterday that included a YouTube video of Dr. Alan MacDonald and his expert insight into this disease that has wrought our country and world with ailments in the healthiest of individuals.   He is a pathologist who has studied Lyme Disease for over two decades and worked alongside others who have and continue to pioneer in the study and research necessary to one day  better understand Lyme.  His interview is the most explicit and in depth that I have yet seen and for someone who do not live with Lyme, it is very much a learning opportunity that should not be missed.

Please take this time to view all three of the YouTube videos on his interview from the perspective of an expert pathologist.  In honor of those whom you know, love and pray for, please help us educate others and spread the word about Lyme Disease.  After all, May is Lyme Awareness Month.

Alan MacDonald, PhD; The Biology of Lyme Disease: An Expert’s Perspective: http://youtu.be/r8tESJVvM88