Whales, Loneliness and Letting Go (Of Lyme) and Lyme Protocol
Though I'm so excited to share about the exciting new things that are going on, this first.
I am so touched by your warm, sincere and heart felt response to my article on gratitude for healing from Lyme. I’m inspired by those of you who shared my story, to help your friends with Lyme, or perhaps another chronic issue. After prayerful consideration, this will be my last blog entry on Lyme and the accompanying suffering, as it’s really hard on me to go back to that place, again. But I was so concerned about one element of the replies that I had to add one last entry on this. So many of you were so hard on yourselves, regarding your own faith, as you wrote to me, I couldn’t let your suffering go on that note.
In the worst time of my illness with Lyme, I didn’t feel faithful or inspired, I felt sick and lonely. I didn’t remember any whales. I didn’t feel a deep faith. I didn’t feel strong, or courageous, or brave. I only felt horrible. I felt horribly ill, tired, exhausted and didn’t get off the sofa much. I felt that no one knew how terrible I felt and that I might slowly just die and disappear, without anyone noticing.
It is important to me to describe what the faith looked and felt like, during Lyme, to encourage you. Though I don’t want to go back to that time period again, I do want to describe it to you to encourage you and bring you in so you can grab on and pull up. I knew God was there, in my soul, but I did not feel it, tangibly. You who have been ill, know exactly what I mean. It isn’t a lack of faith, but exactly what sickness or illness does. When I prayed I knew to whom I was praying, Jesus Christ, the creator of my soul. I didn’t feel it, but I knew it. You know what I mean, a little bit, right?
Since so many of you shared intimate moments with me of feeling so alone, I want to share with you that I did too. In the midst of a life filled with family, a devoted husband, wonderful children and friends, I still felt very alone. During this time I had an acquaintance say that she was so envious of me, because I had such a perfect life, as she could see on facebook. I would bump into people who would extrapolate on my charity (which I had given up) and my business (which was almost non existent as I couldn’t take clients) and my busy life, to which I would simply sigh and smile. I didn’t have the energy, time nor inclination to explain to them, that really I just laid on the couch all day. I watched movies and tv, all day. It sounded awful, so I didn’t share it. So, I know. I have been there and I know that you feel very alone, very scared, very lonely.
Sometimes we need to reach out and grab someone’s hand. In some cases though our hands are already full. Yours could be burdened holding on to the past, to the illness, to the schedules of doctors apt.s and therapy and medical decisions. I believe God is reaching out to you now, through this blog entry. He wants to grab on to you. He loves you and has so much to show you. Do you feel like you can’t grab on? Keep reading.
We are in the middle of one of the ugliest elections, with some of the ugliest language in history. These stories are filled with things that are the very definition of hard to forgive. It may bring up uncomfortable, terrible memories for you. It brings up things you may have thought you were healed from. Conversations, and ugly facebook posts, bring up a bitterness and anger that you don’t recognize. It brings up the the word forgiveness and all the memories and ugliness of things we thought were in the past. Like a drive through a neighborhood that holds bad memories, or a song or a smell that brings you right back to that time, conversations, arguments and loneliness can bring up topics that make the pain seem like yesterday.
Be gentle on yourselves. We are on a journey, not a race. Sometimes those almost tangible memories can come back. Don’t get stuck there. I think the reason these elections make us feel so sick to our stomachs is because we are seeing the worst in people, their unforgiveness coming out in the form of bitter and ugliness.
My perspective comes from my belief in Jesus Christ. I ask for your consideration if you aren’t a Christ follower, in the way I chose to view forgiveness. I struggle with it just like you do, at times. Mostly, when a fellow follower of Christ doesn’t seem (please note I said seem) to be on the same page as the way it is written, for us as believers, to handle offense and unkindness. (Matt 18:15) Give me grace in the way I write it, as I don’t have the answers, just the direction which I look to.
I love the word forgive, but sometimes I think release is a better word. You can picture so easily opening your hand and releasing something you have a strong grip around. Forgiving often has us imagining a reconciliation that is idealistic, and never occurs. We all imagine a loving embrace where person A says, “I’m so sorry”, person B says. “It’s ok I forgive you and I’m so sorry too, I love you, please forgive me”. Love abounds everywhere. That is the beautiful and God blessed scenario. Many of you have experienced the ugly opposite. You reach out to a person who doesn’t feel they did anything wrong. I have too. They certainly didn’t apologize, don’t want forgiveness and in some circumstances they may think you are crazy, insensitive (or too sensitive) or have an inaccurate perception of the issues. Release them. You did what God asked you to do, you reached out. Now, release them. (You are probably thinking of someone right now)
I also understand it is more difficult, at least for me, when the offense is towards someone I love deeply. It’s fairly easy for me to forgive something that was done to me. I understand with Lyme, and with your children with Lyme, some things must seem unforgivable. I love my children with a depth I cannot describe. It hurts me physically to think of that which has hurt my children. We can feel it in our bones when someone has hurt someone we love. That is the very reason, we have to release it. (It can stay in your heart, bones and your body, literally and figuratively)
Release them back to God. God hears you, he sees you. He loves you. He sees your pain, your suffering and your loneliness. He is reaching his arms down to pull you up. Release what is in your hands so you can let go of that, and grab God’s hand. Let him pull you back up. Release them from your heart, your hands and your soul. God has beautiful things for you my friend. He has blessings and beauty he wants to lay into your sweet and beautiful hands. I look back and wonder if I had room for all the blessings in my hands and my heart and my mind? I don’t think I did, like I do today, honestly. My arms are wide open and receptive to the wonderful and beautiful friendships, blessings and beauty that God has for me.
So, you see.
Faith is sometimes just reading this. God might be using this to reach his hand out to you. Can you reach back?
My faith wasn’t in the knowing that everything would get better and that I would be well, but in the hoping. It was in the knowing that forgiveness and release was part of the plan, but not in the feeling it was. It was in the hope I have because of my God, Jesus Christ. I’d love to say that I have a strong faith in Christ, but it is Christ who is strong.
Amen. I will continue to pray for each of you who have reached out to me!
My Lyme Healing Protocol
I have been asked to share my healing protocol. My purpose is to help those with Lyme Disease who are still suffering with continued symptoms. I’m not an expert, but once a sufferer of Lyme. Because there is rampant misinformation diagnosing and treating new cases of Lyme Disease, it is not common to be diagnosed early. There are 300,000 (CDC confirmed statistics from several years ago) to 1,000,000 new cases (unreported, due to blood tests being read incorrectly) every year.
If you were fortunate enough to be diagnosed with a bulls eye rash (which about 70% of sufferers DO NOT get) you ideally would be put on doxycycline for a few weeks and would have the most favorable chance of being cured. Just because you took doxy. for a few weeks doesn’t guarantee a total cure, but your chances are the best . You need the proper dosage for the proper amount of time. I’m not a doctor, so I’m not going to share dosage and time.
There is no “proven” standard of care (from the CDC or AMA) to cure Lyme Disease. The best results for a total cure/healing, from my research, is to be seen by a LLMD (Lyme Literate Medical Doctor) with a good reputation. If you have confidence in him or her, their staff and their facility stay with them for the full treatment. They will know what works and what doesn’t, but often this does take some time.
I knew I was very sick, but had no diagnosis. I saw about 30 doctors, over a two year period. It can be misdiagnosed, because it is known as the “great imitator”. Many other issues often accompany Lyme once you have had it for while. It is common to have Epstein Barr, Thyroid issues, SIBO, constipation, migraine, Candida, Adrenal Fatigue, vertigo, and chronic fatigue. Often depression, anxiety, joint pain, fibromyalgia, find their roots in Lyme Disease. It has even been said that MS, arthritis, dementia, alzheimer’s and other serious health issues have their roots in Lyme Disease. I’m not sure I believe that because the studies aren’t conclusive yet. But I’m very sure there is evidence that substantiates the need for more aggressive research, study and treatment protocols.
I don’t chose the words chronic Lyme, or late stage Lyme Disease, because for me these words have power. I chose to not say I had chronic Lyme, though that would have been the medical term used. It isn’t because I don’t believe Lyme can last a very long time, but because I was believing, thinking and praying that I would be cured. I had to use every tool available for my healing tool chest.
~Far Infrared Sauna (Purchased from Dr. Mercola’s website)
Every day for 40 minutes, at very high heat. It’s very important to wipe the sweat as you go, and shower afterwords to get rid of what you sweat out. My experience was I soaked a thick beach towel each session. As the months continued, I sweat so much less.
~Completely organic diet, no packaged foods (thus gluten free, however, I eat no grains), grain-free, sugar-free (I’d like to say always alcohol-but not always), dairy-free, soy-free. I essentially ate fruits, vegetables and meat, fish, and nuts. No GMO’s, no pesticides, totally organic everything.
-I completely eliminated as many chemicals from my home as humanly possible. All makeup, skin-care, cleaning supplies etc.. had to be organic, with no chemicals. I had already changed over to a 100% pure organic skin care line years prior so I was set there. I only used organic sunscreen, lotions, bug repellent etc.. since your skin is your largest organ. As well, I switched to organic cleaning products since I sleep on sheets that touch my skin all night long. Shampoo, conditioner, shaving cream etc. all organic. I could eat what I use on my skin.
-I switched from over the counter pharmaceuticals to essential oils whenever possible. I found easy substitutes that were far more effective for some different ailments anyhow. This includes headaches, stomach issues and tension in my neck. I took the oils both internally and used them externally on the skin. I used them in diffusers through my home as well.
-Acupuncture. I found a very intuitive acupuncturist whom was crucial in my healing journey. Not only did she guess (then ordered a test for me, as it wasn’t her field of expertise) or should I say diagnose one of the gastrointestinal issues that was plaguing me, but she recommended the doctor in LA, who finally diagnosed Lyme for me. In essence, she saved my life. She didn’t know my SIBO was caused by Lyme but as we journey together she now has that on her radar for other patients. I also found the acupuncture relaxing and it helped with the chronic inflammation that the Lyme bacteria, borrelia burgdorforia , causes.
Twice weekly, I had a raindrop massage. This can be quite costly, but I felt that it truly kept the terrible sickness at arms length, even though I didn’t know what I had I did feel like I was slowly dying. It is done with about 12 oils (with many healing properties) by Young Living. One of the supplements that I believed worked very well was oil of Oregano. You can take this oil, if food grade, by mouth if you know the dosage. I could not find anyone during my time with Lyme that could tell me, with certainty the correct dosage, or I would have done the oils instead of the supplements. Oregano is one of the oils used in the raindrop massage, and I do believe it is one of the elements in my healing. My treatment was done by a licensed massage therapist who was also certified in Raindrop Massage. During this time my daughter had a long struggle with a concussion and she often got one at the same time I did. We are big proponents of raindrop massage.
After my Diagnosis:
~I took three months of supplements to heal my gut issues first, as my gastroenterologist didn’t want me to start antibiotics because he didn’t think my stomach could handle the antibiotics as I was so sick in the beginning. There was a plethora of supplements, but oregano was one of them and it resonated well with me. The toothpaste tube of glutathione was also something that he gave me on day one. Turns out later that glutathione was one thing that really worked well for me.
~Started with one doctor who put me on Samento and Banderol slowly, but it was too slow for me. After a month I said I wanted to get aggressive where he scheduled a pic line. I realized many things one of which I need to work on was my communication skills. Instead of sharing with him that was TOO aggressive, I switched doctors. My next doctor who I believe is a protocol (and diagnostic) genius put me on 3 months of 3 anti-biotics and anti-fungals, all of which I tolerated beautifully. After a week I began to feel better. (6 nystatin a day) I switched back to the other doctor later, as his office staff was stellar, kind and positive. I was in the home stretch of the three months feeling fabulous (comparatively) and I wanted to surround myself with uplifting and positive staff, clean environment and not have to drive far. It was a very difficult decision, but I liked both doctors so it was ok. I had concerns about cleanliness and staff at the other issues. (No I won’t share the issues nor the names, though I will recommend doctors!)
I had no idea what this would entail, and though I had gone to prayer rooms and tons of friends had prayed over and for me, I decided it would a “prescription” as much as my antibiotics. It probably looked about like a prayer appointment a week, but consistency. Sometimes it was a conference on oils and healing prayer, a healing of the brain conference, time at PIHOP, a few jewish services, healing room appointments, Hidden Manna (a prayer ministry), my weekly prayer time with M & M (my dear friends), bi-weekly with M & R, and SOZO prayer times, which are a two hour prayer with a facilitator who walks you through your time with God, simply asking you questions and helping with prayers of forgiveness or such.
Only true Lyme Disease suffers will understand this following part. It is hard to select a doctor, when there is so much misinformation on Lyme, so much controversy with the treatment (lack of) protocol, and more controversy for the doctors who chose to treat Lyme. Due to the fact that much of the effective treatment of the symptoms of Lyme not being covered by insurance (our blue cross PPO, supposedly a very good plan) LLMD’s do recommend many types of treatments that are expensive. This has resulted in some saying they are out for a profit, making money off the sick. This is unfair. At least, they are trying to help. Antibiotics is usually the first try, but after that all bet’s are off.
If the CDC would give them healing protocols that worked, they would not need to recommend unproven treatments. If the insurance would cover treatments where there is sufficient evidence that the therapy (like hyperbaric) worked, these doctors would not need the facilities to provide them. If the doctors have to buy the equipment, they have to pay for the equipment and the staff, insurance, overhead and real estate to provide them. Thus, they have to charge a small fortune for the treatment because the machines are expensive. A round of hyperbaric treatments is $3,000. I met a board certified hyperbaric doctor on a cruise to Antarctica and asked him questions about Lyme and hyperbaric. He works in Washington DC and said they are finding great results with Lyme Disease effectiveness, but not the protocol. He says he isn’t sure how frequently, how long in the chamber, duration of both treatment etc.. because they aren’t providing the funding for these studies. They do know that there is significant improvement, but not how much yet.
It’s the lack a LYME standard of care protocol. In my case, I tried everything and spent about $90,000 over the years that wasn’t covered by insurance. This includes the doctor visit to the doctor who correctly diagnosed me.