As a Lyme literate practitioner and as a mother of someone with Chronic Lyme Disease, I want to share some insights I have gained in the last two years. Amanda has had active disease since she was 15. She is now 40. We have been treating her for four years. Before I became Lyme literate I was like any other family member frustrated by the incredible variety of symptoms Amanda complained about. I kept telling her to get help for her emotional issues and to get on with her life. As a 'knowledgeable' health care provider I just couldn't put the array of problems together into a diagnosis that made sense. Amanda would sometimes rage, literally, with anger that was scary. She would get panic attacks and these increased in intensity and frequency as the bugs became further entrenched in her body. Antidepressants were ineffective. Amanda would complain of severe pain, total body pain, joint pain that would migrate, hip pain that made her feel like her bones were breaking, muscle pain, stomach pain, abdominal cramping, and headaches. Wow! It was overwhelming to hear about this and feel helpless to help. She has had horrific stomach issues and would throw up often and feel nauseous constantly. I attributed these symptoms to her inability to resolve her emotional feelings. Yet I believed she needed psych help to get over the pain, that these symptoms were related to the trauma of the rape she experienced at a young age. For many of her family members it was Amanda crying wolf over and over again. Her emotional lability pushed people away as did her rage. I was the person the rage was directed at mostly and eventually I just wanted to disengage from it all. I did not make the connection of Lyme until I became Lyme literate and then everything she had been saying for years made sense.
Initially, I felt guilt for not believing her and helping her to find help. Fortunately we have so much guidance now. But when we had to interact with the current health care system, I thought that because I was 'one of them' they would believe what she was experiencing, listen, and help. I was foolish to believe this. The disconnect between IDSA guidelines and ILADS guidelines rang loud and clear. I became the drug seeking, interfering mother and my gravely ill daughter became a psych case.
Amanda lived about a mile from us at the beginning of treatment. As I have written before we had a hellish year of 17 ER visits and 7 inpatient hospitalizations before I took her home and started treating her. My husband and I give her medicine every four hours around the clock and have for over 6 months now. She gets IV hydration, nutritional support and antibiotics. We prepare her food, do her laundry, help her with personal care, and are helping to raise her 12 year old daughter. In-between all this we work and make time for our relationship. Hundreds of thousands, probably millions, are doing this across the globe. Imagine the impact this is having on the global economy, as well as the emotional costs for those involved.
The financial costs of treating CLD physically run into thousands of dollars a year and can go on for several years. People lose their homes, their jobs, their relationships. Insurance companies refuse to pay for something that 'doesn't exist.' The burden of this is great and those that have no resources suffer for years. Many simply give up.
For those with the disease, healing on all levels is necessary. This encompasses not only the physical but the emotional and spiritual. The disease is a message to change the way they have been living their life. As Katina states so eloquently in her book, Out of the Woods, " The more debilitated and stricken people are, the more time has been created in their lives for reflection and realignment with their life dreams and purpose. It's not random that those who have the most to offer the world-those who are working hardest and have the most altruistic attitudes- can get hit the hardest by this illness as they push themselves so hard, with little self-recognition. We must learn how to love our very selves with true compassion, through the tender and tragic mercies of this insidious and erratic illness". This aspect of CLD is as critical to address as the physical. The infections will not resolve without doing this work.
I believe this applies to those of us that care for their loved one as well. It is a consuming experience that requires surrender to each moment to avoid burnout that can come with care-giving. The rhythm of each day is dictated by the needs of one person and it can be overwhelming. Some family members walk away when they decide they have done enough. Many choose to believe the mainstream hype that CLD doesn't exist. But for those of us that are able to remain steadfast, hold love in their heart, the reward of watching health restored is amazing. It is worth every moment of exhaustion and frustration. I get to assist someone I adore in her transformation; and, like a butterfly coming out of her cocoon, I am witnessing my child coming back to life. The process is slow, agonizingly slow, but each small step is a gift. One of my mantras is 'God gives nothing but good, either gifts or lessons, and really, they are the same.' Another is 'everything is perfectly manifesting.' This reminds me to embrace the moment and learn so that I can shift my consciousness ever higher, and return to a place of peace and acceptance. Those who are desperately ill with CLD need their loved ones to be present and whole. Like the birthing of a child, a woman is alone with her experience of labor, yet she needs support while going through it. So does someone who is chronically ill, frail, weak, exhausted, and in severe pain. My daughter, who is so ill, is the same being she was before she became sick, working to heal from an all consuming disease, and she needs all the assistance we can give. I will be here until her healing happens and she can move forward in her life once again.
I continue reading comments from numerous people with Lyme, expressing their rage and hopelessness about their illness and the marginalization by the current system that denies Lyme exists.
Being caught in the place of anger and fear is a stuck place. A large part of recovering from Lyme is understanding that this illness requires your complete attention in every aspect of your being. Energetically, to remain in rage and despair can stall recovery. It does not matter how many antibiotics, herbals or other medicines you take, in my professional experience, rage will slow your healing.
Lyme is an excellent microcosm, a perfect example, of the world today. We are all being asked to expand our awareness, to become more conscious of our surroundings and how we interact in each moment, to help ourselves and each other grow and heal, whether we have Lyme or not. With Lyme I feel this is a necessity.
Denial will keep you from healing and recovering. Begin by asking yourself what trauma(s) have you suffered in your life? What can you do to forgive and move past the trauma? Recently, I was speaking with one of the MD's I work with. We were talking about treating newly activated Lyme and he suggested adding a second or third antibiotic if there was trauma as part of the history of the patient.
What can you surrender that no longer serves you? What habits prevent a return to health? We all have our favorite foods. I’m not suggesting total abstinence of comfort food and drinks, although I do ask that you consider moderation more than indulgence. Are you addicted to sugar? Lyme feeds on sugar and yeast. Does gluten make you feel bloated or gassy after eating it? Dairy? Soy? All of these foods are inflammatory. Do you smoke cigarettes? What is holding you back that you have the power to change?
I have seen people quickly move to recovery once they completely integrate healing in all aspects of their mind, body and spirit. No one asks to get Lyme. It is a terrible illness that undermines your life and those of your loved ones. I live this every day with my daughter, so this is not only a professional take on healing but a personal one as well.
I recommend you gently and kindly look in the mirror and see what it is you need to resolve so that you can move forward into recovery. It is a powerful step toward your own healing for both Lyme and in life.
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