Join me on Lyme Light Radio this Wednesday (5.06.15) for a focused discussion on the medical, legal and ethical aspects of evidence-based healthcare in the context of Lyme disease with Lorraine Johnson, CEO of Lymedisease.org.
We will talk about the differences between ILADS treatment guidelines and IDSA treatment guidelines, as well as the results of the recent IDSA survey that had over 6,100 responders!
Lorraine Johnson, JD, MBA, is the Chief Executive Officer of LymeDisease.org. She is an attorney advocate on issues related to the medico-legal and ethical aspects of Lyme disease and has published over 40 peer-reviewed articles on this topic. She co-authored the Lyme disease guidelines of the International Lyme and Associated Diseases Society, published in 2014. She serves as a patient representative of the Patient Engagement Advisory Panel for the Patient Centered Outcomes Research Institute (PCORI) and sits on both the Executive and Steering committees of PCORnet, a national patient-centered big-data project. She chairs PCORnet’s Patient Council. In addition, she is co-chair of the steering committee of Consumers United for Evidence-Based Healthcare, a nationwide coalition of consumer groups associated with the international Cochrane Collaboration and serves as a consumer peer reviewer for Cochrane evidence-based protocols and reviews. She has spoken before state legislatures, US and international governmental agencies, and at healthcare policy conferences throughout the world.
Join me on Lyme Light Radio this Wednesday (4/22/15) for a cutting edge discussion on healing with Cannabis. My guest, Constance Finley, an expert in blending Cannabis oils for health and healing, will educate us about the different uses.
Constance Finley is the founder and CEO of Constance Pure Botanical Extracts - a medicinal cannabis collective that manufactures and distributes what is broadly recognized as the highest quality cannabis extracts made today. Trained as a clinical psychologist, she taught Jungian Psychology and worked as a child and family therapist. She switched course to secure extensive graduate training in tax, accounting and finance. She managed money for wealthy individuals and then founded a company pioneering the use of tax credits to house the working poor from corporate equity investments.
At 44, a severe and life long autoimmune condition brought Constance’s career to a halt. After ten years of being housebound and incorrectly diagnosed, she found incremental relief through vaporizing cannabis. That led her to found the collective that is Constance Pure Botanical Extracts in 2008. Her original vision of an old-fashioned herbal apothecary is realized in CPBE’s multiple strains of both THC and CBD cannabis extracts. The company is a pioneer in improving and professionalizing the extraction of standardized cannabis oil from multiple and consistently available strains. CPBE’s formally trained staff coach and support patients who are primarily referred by oncologists, rheumatologists, neurologists and other health practitioners. A leader in the medicinal cannabis therapeutics industry, Finley and her collective increases access and education to those in need of the highest quality cannabis therapeutics.
Please join me Wednesday April 22 at 1 PM PDT/4 PM EDT
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.
People with Chronic Lyme Disease feel terrible. Imagine feeling exhausted most of the time, having no energy. You hurt everywhere, especially in your joints. The pain can be severe. You may be nauseous every waking minute and eating takes effort. Brain fog is persistent, and you cannot concentrate. Headaches are a daily occurrence, with light and sound sensitivity that drives you away from people and into your home. Depression is pervasive, and sometimes ideas of suicide enter your thoughts. Neurological symptoms, such as tingling and numbness, and electrical, painful shocks travel up your arms and legs, coming and going. It is hard to get out of bed in the morning and function in daily life activities.
Besides feeling terrible and having to struggle to get from place to place, you go to one doctor after another who tells you there is nothing wrong because all the test results are negative. Then you are offered an antidepressant because it must be all in your head. Unfortunately these are bacterial and parasitic infections affecting different parts of the body, antidepressants are usually infective.
Later you are sent to a specialist, a rheumatologist or an infectious disease specialist, and they again do testing which is negative; therefore, again it is believed you don't have any disease. Instead of looking at the clinical picture being presented to them, these physicians say there is nothing wrong. It is implied that it is all in your head. Over and over again, this scenario plays out until you feel like you are going crazy.
Family members look at you like you're going insane, and your loved ones begin to turn away from you. However, you remain caught in this horrible cycle of feeling terrible, not able to function on a daily basis, and in pain most of the time. It is devastating in every which way *Physically, Emotionally, Spiritually, Mentally, and Financially. The emotional cost to a patient and their families is horrendous. How does an ill person participate in life? People with CLD are dependent on family and friends to take care of them, to prepare food for them, to do errands, to pick up their medicines, to call the doctor and arrange for appointments, to help with their children, if they have any. *Basically any activity healthy people take for granted.
Since insurance will not pay for a problem that does not exist, the costs are extremely high. Not only must you pay for a health insurance policy and the attendant co-pays that go with it, you go to doctors who say nothing is wrong. Then you seek out, if you are lucky to find one, a Lyme-Literate provider who does not take your insurance. Most Lyme specialists have cash practices because they could not stay in business otherwise. It takes one to two hours in an initial visit to tease out the problems and begin to address them. At your primary doctor's office, you pay your co-pay, the doctor bills your insurance the remainder, and this doctor only spends five to ten minutes with you. How can anyone know what is going on in such a short period of time? It is not possible. Your story, your symptoms, how you live on a daily basis are important in diagnosing your illness and deciding on the first step in treatment.
It is time for something new. There are many differences between the way Western health care and Eastern health care deal with Lyme Disease and other co-infections. While most of the providers who practice in our current system fail to acknowledge CLD, it is often an acupuncturist or naturopathic physician that suggests the possibility of CLD to a person and gets them to begin looking for other providers who understand what they might be going through.
In an integrative practice, the best of both worlds are utilized in a blended way by using herbals, neutraceuticals, and antibiotics. Using nutrients and herbals, instead of drugs, can control many chronic conditions, as they have fewer side effects and are accepted by the body more readily. There are herbal tinctures specific to the treatment of Lyme and the co-infections that work well in combination with antibiotics. A well as other supplements utilized to help the body clear toxins from the bugs and support the lymph and liver system.
As a knowledgable health care provider and Lyme Literate, I find it incomprehensible that the current medical system shuns and marginalizes people with CLD. The suffering this disease can cause exemplifies this wrong and shows the need for a place those with CLD can find Solace, Support, and Respect, as well as treatment that moves them toward a healing state.
Understanding Complex Chronic Illness. Help with Tick-Borne Disease, Biotoxin Illness, Hormone Imbalance using Integrative Therapies.
Listen to Archived Lyme Light Radio Shows Below