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.
Well, I have to say, I am beginning to think that this is the way to go. When I saw the Lyme medical professional that is treating me this past weekend, I was able to report:
My tintitus is getting better. I have days and moments when it is non existent.
My brain fog has lifted.
I am waking up in the morning with energy and it seems I’ve slept all night (even if I know I have not). I cannot sit still knowing that there are things to do. And guess what? I’m not tired and I am motivated to get things done. I have not had this much energy in over 36 years.
My hormonal night sweats and intense hot flashes that I’ve had for almost 8 years has taken a hiatus. I haven’t had one in over a week.
My word recognition is coming back. Doesn’t take me as long to find what I want to say.
I am organized and prioritizing without getting overwhelmed. Wow!
I actually tried some Salmon a few times in the last week and a half and I did not have any side affects. What? Yes!
Side effects I’ve noticed in the last 6 weeks:
Slight tightening in my throat area, around my thyroid? Could it be helping my hashimotos? Hmmm….
I had one pain that last less than 10 minutes in my chest last week. I had no other symptoms and it wasn’t concerning, I just noticed it. Helping the Lyme in my heart? Another hmmm…..
My liver enzymes are slightly elevated, so I am eating more foods rich with liver detoxing ingredients to help. More bananas, beets, and avocados.
I had some issues with urination a few weeks ago, burning and urgency to go. I still have an urgency yet the burning is gone. We did a urine test actually today and I will wait to see if I have a UTI. If it comes out negative, then the doc said it will be likely that it’s the die off of the lyme in my bladder and kidneys since Lyme loves that area.
I am starting my 1/2 dose of a 250 mg pill today. I do take them at night as it helps with the tired feeling after I take them. This way I don’t notice it. I will take 1/2 M-W-F for 3 weeks and still take 1/4 of a tab the rest of the week. The journey is slow and yet it is progressing. I am very excited.
I’m still making my kidney detox tea in the morning. Eating lots of veggies and am staying away from anything alcohol, vinegar, and caffeine related.
Cannot wait to fill you in how the 1/2 goes. Prayerfully well. 🙂
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:
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.
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.
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.
I write this in hopes that it will help others on this journey we call Lyme.
I started this blogging when I was so ill, trying to find a connection to others like me and to journal my thoughts moving through the Lyme healing. It’s been 6 years and I am happy to report that I am doing pretty well yet I am not completely healed. I will never be cured, however, I am working toward a remission state of healing.
My journey over the last 6 years has taken me through not just a journey of pain and healing, but a journey of growth and understanding. When I was at my worst, I never complained to God, I never sat back and felt sorry for myself, and I never turned away from my faith. I knew that the pain, which was 100 fold worse than childbirth (and that was really bad for me…), would be used for something, I didn’t know what, but I knew it had to. I knew that my memory issues, when I couldn’t remember names of people or words, would eventually resolve. I knew that one way or another, one day, I would wake up and live again. You are likely asking yourself how I could be so reassured when I was in such a bad state. Faith. I prayed that should “God Choose” to heal my broken body, then I asked him to allow me to help others so they didn’t feel alone or afraid and lose hope. I prayed asking that all of my own suffering be used and not wasted on just a memory. I prayed that if I should not survive this torment that was going on in my body, that I show grace through the journey of it and that I keep my faith strong as an example to others. As I write this, it sounds as thought I was not afraid at all. Quite the opposite, I had fear. I feared that my life on this earth was coming to an end and that my children would no longer have their mom around. I feared leaving my husband and not growing old together. Fear was there, I just didn’t dwell on the fear and I did not let it overcome my faith in God and my walk with Jesus Christ.
As it turns out, God did choose to carry me through that time and get me to a place of healing, and I found the strength to help others. My healing is not yet complete, and let’s be real, never will be until my body is in fact in the grave and I am with my savior.
But Jesus on hearing this answered him, “Do not fear; only believe, and she will be well.”Luke 8:50
Walking through the eye of the storm, I can see that there is hope for so many. I see the Lord opening windows and doors for others who are suffering. It’s a slow opening, yet it is opening all the same.
As I continue on the journey of healing, I have decided to take another leap of faith and try a new drug that doctors are starting to see improvement with when it comes to Lyme. This particular drug has been around over 70 years and has been used for one specific use, while other uses have also been proving to be successful. There is a lot to understand about it, it is still in clinical trials, and only a doctor who knows what to do with a patient on this drug should be prescribing. That being said, I have spent the last week and a half preparing my body for administration of this new treatment. I am hoping that anyone else out there, trying this, or wanting to try this, will stay following me and come along on this journey with me, sending support and encouragement. (Not financial support, I mean support to uplift.)
To begin, I have researched the heck out of this. I even have pages printed of things that interact with this particular drug, from medications to everyday household products to female toiletries including makeup and creams. I have watched researchers talk about the drug, been on the facebook support groups hearing stories of those gone before me and have been preparing my body.
I want to share what I have done in preparing myself for this so that anyone else can perhaps use it as an example of the things to do or not do. To start, I spent one week going through all of my supplements, herbs, tinctures etc. and boxed up what I am not going to be able to take. Since I am not allowed to eat, drink or use anything with an alcohol carrier, this is anything but easy. Many of my tinctures include some sort of alcohol carrier. Including vanilla extract. Vinegars and anything fermented are off all menu options. No caffeine either. So where does one go from there? I mean, I am already vegan because I have inflammation and pain with any and all animal protein. Well, let me share with you what else I have done and am doing.
The first week, last week:
Cleared out all cupboards of supplements that are not allowed.
Spent last week drinking only one cup of coffee each day to alleviate any sort of caffeine withdrawal.
Stopped using all vinegars. I found instead flavored Olive Oils from Oro Oils. I have one that is infused with dill, one with sage and mushrooms, one with lime, and one with a buttery flavor.
Gave up all alcohol. Finished my summer wines and did our October wine tasting at Cooper’s hawk and now I am done until I am done with this protocol.
Got a baseline in my bloodwork so that my two doctors can watch my liver enzyme levels and my thyroid.
Research Research Research!!!
So that was last week. This week, I am:
Writing this blog post for others to follow and be encouraged through my journey and learning from what I have taken on. (Yay!)
Stopped drinking all coffee. Rather I am drinking a home-brewed tea out of herbs from Mountain Rose Herbs in CO. It’s a special kidney, liver cleansing combination. I brew it till it steeps and then strain it. I then boil it down until it is half. I have been drinking 1-2 TBL. in hot water with a lemon slice each morning. Saving the extra in a glass jar for the next day.
Ordering a medical bracelet or necklace so that if there is any emergency situation that needs attention, medical personnel are aware of what I am taking.
Putting together a schedule of all of my supplements and medications, their times of day that I am taking them and how much.
Finding recipes that are healthy whole food recipes that I can make with little fuss or minimal at that.
I am going through my calendar and making sure that I have down days to rest.
I have asked people to start praying for me and for my health. That this be the final step in getting my body into a remission state.
Sitting in the Sauna M,W, F. Detoxing with Activated Charcoal and clay. I will also be doing Epsom Salt and Baking soda Baths on the opposite days once I start the new drug.
We are going out this weekend to meet with some friends we have not seen in a very long time. Meeting in the city. I want to be able to enjoy my time without making any mistakes that will affect my starting this next week. So I am:
Packing little herbs containers with my favorite herbs to sprinkle on salads or on my veggies.
Making my own dressings and placing them in little containers so that I can carry them without any issues in my purse.
Packing my own snacks just in case. As well as some of my favorite sparkling water.
We have planned out and made reservations at a few places that we know I can eat at safely. So planning ahead is always key.
You can see that I am likely going way over above and beyond what I need to do, yet for me, safety for my body and preparedness is important. If something that you put in your body takes 2 weeks minimal to get back out of your body, what about the preliminary intake of foods that will interact with the drug. That is why I have taken two weeks prior to beginning. I will be using this blog as a journal of sorts to share. So if you know someone with Lyme disease and who is considering Disulfiram, please have them follow along. I hope to help many more.
Next update will likely be next week after first day of my taking it.
