Research | Sherry's A Labour of Love

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.

Educating myself as well as my children has been something I have enjoyed since I began my journey of living a healthy lifestyle. Anything I did with my children when they were little was an adventure into the “why” zone. With the information now present on the internet it’s even more fun and sometimes can be a bit daunting. Whenever the kids ask me a question about something I’m completely unsure about, we research it and look for answers.

With my diagnosis of Lymes, and recent finding of several co-infections, I am finding my days filled with trying to answer the why question. Why does it hurt so badly? Why do I feel good for a few hours and then all of a sudden I feel like I’m on deaths door? Why can’t I stand longer than 20 minutes without feeling 3+ hours of pain in my feet and body when I finally sit down? Why does my right foot not want to bend, feels numb and just doesn’t work well 90% of the time? Why do I all of a sudden have severe shooting pains that come and go throughout different parts of my body that leave me disabled until it passes? Why do I think of things I want to say but the words don’t always come out or I forget 10 seconds after I thought it? Why is there no known cure for Lymes? Why do I also have multiple co-infections? Why me when so many others don’t care about what they do to their bodies, what they eat or drink or inhale? Why? Why? Why?

The list of my questions is long and unending. The more I learn the more I ask why. Most people could look at me (some have) and say, “Just take the antibiotics, find a project, rest and wait to feel better. Let the doctor’s tell you what to do and let them take charge of your health. After all, they are educated to know the answers. Why do you care to know about it? It would just freak me out, your better off not knowing.” Key statements that make me want to run to the Library of Congress, set up camp and stay until I’ve read every published study, report, article, and book written on Lymes and their wonderful debilitating co-infections. Don’t get me wrong, I am by no means anti-doctor nor anti-antibiotics. If I thought for one second that an antibiotic would heal me and actually get rid of the little buggers destroying my body I would take them. In fact, that may be part of my future protocol. For now however, I’ve done enough research, as has my doctor, to know that at this time my personal journey is difficult and weary and that my body needs more than heavy duty short term, expensive antibiotics.

When if comes to learning about the disease and it’s counterparts, I care because I am blessed to have a body that for 44 years worked well and supported me. It’s my God given, God designed body that I need to take care of. The more I know about this disease, the better off I will be to ask intelligent thought provoking questions that will help myself heal. Besides, whoever said that you needed to stop reading and learning just because you have a degree. I am an educated woman who feels that learning goes beyond the classroom door and actually begins with life skills. We teach our children memorization of dates, places, equations and names of important people, yet have we taught them to be proactive and free thinkers? Have we taught them to ask questions or to just listen to what we want them to know? Have we taught them or are we teaching them how to research everything and to be open to understanding the answers to why? If my children do not retain anything else in their school journey, they will remember that in order to help yourself in anything in life, you need to be completely informed. You need to research everything and don’t trust someone else to do it for you.

I have been asked over and over again about my illness, how I’m doing, why am I not on antibiotics yet, what is the diagnosis, how long before I feel better, etc. etc. Then, inevitably, if they are not like me and have the “doctors know all attitude”, they roll their eyes or get quiet and give me the bodily signs that they feel I’ve made every wrong decision in helping myself.

Little do they know, I have been going in to my doctors or health care professionals with questions or information that help us work together in my healing. I have the respect of my health care professionals and doctors because I care about my over all long term healing and am not just looking for the quick fix pill or idea that may help for the interim. Little do my critics know that while I sit day after day quietly waiting to feel “normal”, I spend countless hours researching every website I can find on Lymes. From Western traditional medicine to Integrative to Holistic. Oh, there are some very “quacky” ideas out there, and there are some very sad stories and videos that have scared me to tears. One even kept me up all night.

As I said before, I’m a college educated woman who does not easily fall prey to the latest and greatest. In fact, I am very aware of the effects of untreated Lymes and of the dangerous co-infections and my very low adrenals. For these reasons, I am being treated with protocols that are attacking the problems individually in hopes of long term healing. The disease may not be curable, however, the symptoms can be controlled. I love to research and will keep on researching until my journey comes to an end with this devastating disease. I look forward to sharing with you in the near future what I have learned and hope that you will find my sharing to be an inspiration for you to keep on learning.