Telling the stories of people with Lyme disease
“The Lyme Altar: A People’s History of Symptoms, Sacrifice and Hope,” a new documentary, focuses on Lyme patients and the doctors who treat them.
In the beginning of this film, we see what appears to be a sacred shrine. Upon closer examination, we find it is decorated with dozens of containers holding medications and supplements. Meanwhile, in the opening credits, the title The Lyme Altar (with an “ar”) transforms into The Lyme Alter (with an “er”).
It’s an intriguing juxtaposition. Is Lyme disease a holy experience? Are people with Lyme being seen as sacrificial lambs? Do people worship the medications they hope will heal them? Alas, the filmmaker doesn’t explain, leaving us to chew on that ourselves, while moving on to the “alter” part of things. I think most of us will agree that Lyme “alters” life in profound ways.
Indeed, how their lives were altered by Lyme disease is one of the major themes expressed by more than a dozen patients interviewed in this film. They recount being ignored, belittled and disbelieved by medical practitioners, as they sought treatment for a dizzying array of symptoms.
Their stories are interspersed with comments from eight Lyme-literate practitioners from Gordon Medical Associates in Santa Rosa, CA, and Dr. Joseph Burrascano, one of the world’s leading experts in diagnosing and treating Lyme disease. (Gordon Medical co-produced the film, along with Massachusetts-based Touchable Stories Productions.)
Dr. Eric Gordon sets the tone by asserting that Lyme is a “bizarre interaction between a very complex micro-organism and a very complex human being.” The various doctors talk about helping patients sort out that bizarre interaction and work towards getting well.
Unlike the Under Our Skin documentaries, The Lyme Altar doesn’t overtly deal with the politics of Lyme. It remains the story of suffering patients and the doctors who do their best to help them.
Click below to watch a video trailer of the film.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
Getting the info out there is paramount to getting the answers needed for getting the right treatment, the correct educated professionals, and a gov that will stop pushing this under the rug. Why there is a cost to getting movies so they can be viewed is just creating a barrier that many don’t have the resources to commit in order to see this info. What we need are sponsors who provide the funds needed so this type of info can be provided free of charge to the public.
I helped to develop one of the first diagnostic ELISA tests for Lyme 28 years ago and it was 50% accurate. We would test many blood samples known to be positive for Lyme and we thought that it was a joke that only 50% would come up positive on the ELISA Ab screen that we created. Docs should not use it as a diagnostic tool if there are symptoms, but that is the current standard of practice. If the screen is positive, great, but if not and you have symptoms, keep testing with the more confirmatory Western Blot. As far as I am concerned, everyone in the US should go to their primary doc and ask for the confirmatory Western Blot test and bypass the very inaccurate screen. I was misdiagnosed for many years and each time I went to the doctor with life threatening depression, fibromyalgia, arthritis and recently, incredible anxiety and the inability to remember simple words to the point that I thought that I might lose my job, I was given the ELISA test and it came up negative three different times. In April of this year, I had electrical currents going through my body all night and couldn’t sleep because it was in my central nervous system and brain wreaking havoc. I was treated for each of those diseases separately over the last 8 years with little relief. When I finally found a doc that understood Lyme because I was at my wits end and thought that I was developing Alzheimer’s, he ordered a Blot and I was positive and have been treated for the last 7 months. Life altering! It will take 1-2 years to kill this spirochete that is as crafty as HIV. I assumed that the test that I helped to develop would be better and not worse for detecting Lyme 28 years later. This means that 50 -70 people who are actually positive for Lyme will be sent home with some stupid diagnosis and left to fester. Lyme does not go away on its own. Now I know that there are so many new strains, I understand that the tests developed years ago are less accurate because the proteins extracted from the spirochete used to develop the test are not conserved across the new strains. Also, Lyme hates oxygen, so it does not reside in the blood, which is what is drawn for testing. It goes into your organs and heart. Over Mother’s Day, I spent the night in the hospital because I felt like I was having a heart attack most likely due to Lyme in my heart. Do not accept a negative screen and ask immediately for the Blot. If you are incredibly sick, your Blot may not even show up positive. Lyme suppresses the immune system so you cannot make antibodies, which is what the ELISA and Blot measure. Once you are treated for a few months and your immune system heals, then you will be positive. Do not let your primary doctor simply tell you that you are positive or negative for the Blot– ask for the actual results. If you have a few bands come up positive, do not assume that because the CDC requires 5 of 10 bands for IGG or 2 of 3 IGM bands to be called positive, that you do not have Lyme. Find a Lyme Literate Medical Doctor (LLMD) and get treated. Do not assume that it is normal to have severe back pain, life threatening depression, arthritis, psoriasis, anxiety or debilitating fatigue because you are just getting older or are just doing too much multi-tasking. I am 50 and now that I am being treated, I now feel 30 and can exercise again. I am pretty sure that I gave it to my husband as he has bands on the Blot and will be seen by my LLMD. My 10 year old came up screaming positive on the Labcorp Western Blot that I demanded at my primary physician because insurance actually covers that testing. My daughter also has bands and I have been told by an orthopedic doctor that her aches and pains at age 13 are systemic and are not a result of growing pains or lacrosse. He suggested that she has juvenile arthritis or Lyme. Remember that Lyme was discovered in the 80’s because there were so many children in Lyme Connecticut being diagnosed with Juvenile arthritis. She will see my LLMD as well once I can afford it. Until the CDC changes their recommendations for the Lyme testing algorithm and insurance companies are educated that 21 days of a single antibiotic treatment are not even close to effective for this disease, we will continue to see the uptick of diseases that are caused by Lyme infection, but are misdiagnosed as MS, arthritis, depression, ADHD, anxiety, epilepsy, migraines, etc. From what I am learning, I may have passed it to my kids in the womb. I am also reading that pet saliva, sex and mosquitoes can transmit the disease. Because the CDC and general physicians are not versed in Lyme diagnosis and treatment, my insurance company will not pay for my LLMD visits or treatment. It is worth every penny, as I was losing my sanity, livelihood and my family. Now that I am being treated, I can remember words and I do not have anxiety and depression or joint pain. My kids don’t tease me about having early onset Alzheimer’s and I retained my job. Because of my medical background, I knew that there was something seriously wrong and kept searching for answers. I feel terrible for people who do not understand medical terms or are reluctant to research and challenge their primary physicians. Don’t let your uneducated, but well meaning family physician tell you that you have merely have post Lyme syndrome if you had your measly 21 days of antibiotic and are still testing positive. Also, real Lyme Literate Doctors will never ask you if you had a tick or a rash before considering Lyme. It is a real crime. Pay it forward please. Treat your kids, friends and family before they get to the place that I was before I became educated on the epidemic of our lifetime.