TOUCHED BY LYME: Pfeiffer electrifies at MyLymeData2018…and online
Investigative journalist Mary Beth Pfeiffer speaks in quiet, steady, well-modulated tones. But her message packs a powerful punch. It is at once riveting, deeply moving, and profoundly disturbing.
Pfieffer, the author of “Lyme: The First Epidemic of Climate Change,” spoke at Saturday’s MyLymeData2018 conference in San Ramon, CA. In addition to the audience in the room, thousands more have watched the speech online.
“A Scandal”
“The management of Lyme disease by American medicine and government is, to use a word that investigative reporters do not use lightly, a scandal,” Pfeiffer asserted. “American medicine pretends to understand this epidemic. It pretends to have a handle on it. It does not.”
She talked about many different aspects of the Lyme disease picture: infected ticks, who are showing up around the globe in places they’ve never survived before; differences among research scientists; the myths embraced by the medical establishment that make it difficult for Lyme patients to get appropriately diagnosed and treated.
Most compellingly, she shared heartbreaking examples of individuals and families impacted by these wrong-headed policies.
Pfeiffer started reporting about Lyme disease when working for the Poughkeepsie Journal (a newspaper in New York’s Hudson Valley, one of the most Lyme-endemic areas in the country.) In her research, she read more than 300 scientific studies, and interviewed scientists, doctors, patients and advocates literally from around the world.
Her message is a vitally important one. I urge you to carve out 40 minutes to watch the recording of it here, and to share it with friends and family members. (Note: the first person you see is me, introducing her.)
(If for some reason the above link doesn’t work for you, you can also access the video from our homepage.)
To purchase the book at a 20% discount, click here and enter the code 4LYME.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org .
Mary Beth Pfeiffer has brilliantly summarized what so many of us already know after suffering from this horrific illness. I pray that it won’t be long before we have adequate testing and treatment for this life changing disease.
Thank you so much for this informative talk! Mary Beth is so right. I am outraged… The money should be there for the study of this epidemic! I have been diagnosed with Lyme THREE times. I don’t think I was treated soon enough, or with enough Doxy last summer, now I am suffering with painful joints, especially fingers and toes. I was also diagnosed with h Pylori. I was so sick. Then I had more, stronger antibiotics. I have ALWAYS been healthy and active. By the way. I have NEVER had a rash, or bullseye. The only time I found a tick on me was last summer, and it was the size of this . period! We built a house in the middle of a farm field, surrounded by oak and pine forests with deer galore. Field mice and pack rats run wild…mega carriers of ticks. Our dogs are protected…but I’m not.?
WOW …SUCCINCT , TO THE POINT , HONEST NARRATIVE OF THE TRAGIC HISTORY OF THE LACK OF EFFECTIVE LYME DISEASE DIAGNOSIS AND TREATMENT IN THE US AND THE STIGMA AND POLITICS THAT CREATE SUCH CONTROVERSY THAT PREVENTS SICK PEOPLE FROM GETTING THE HELP THEY NEED .
This is so on point! Thank you for telling it like it is! I loved that she said “The management of Lyme Disease by American Medicine and Government is a scandal. Scandal is defined by an action or event regarded as morally or legally wrong.” I am so outraged at what is going on with these conventional doctors (they know nothing about the symptoms of Lyme disease let alone think chronic Lyme exists!!) and insurance companies’ greed that I decided to meet with my Senators and State Representatives and, hopefully, the Governor in Pennsylvania and tell “My Story.”
I was living the American dream, after being in the legal field for over 28 years, I decided to start my own business in 2013. In January of 2016, I wasn’t able to walk up a flight of steps without being out of breathe. I also started having chest pains, stomach pains, indigestion, nausea, achy all over, sore soles, irritability, headaches, brain fog, and insomnia. To make a long story short, I saw over 22 doctors and had every test/procedure done only for the conventional doctor to say I had abnormal breathing (was put on oxygen concentrator), autonomic neuropathy, chronic gastritis, and nodules and cysts in every organ (later learned these are spirocetes hiding in biofilm). In July of 2017, I was referred by a customer of mine to her internist in Virginia. He took 18 vials of blood and five days later he diagnosed me with Lyme Disease co-infected with Bartonella and Babesia, SLE, systemic candida and unexplained fever. I was so relieved! Finally, I could get my life back!! Was I ever wrong!! What a nightmare! Thank God, I watched Under Our Skin, and the sequel, Emergence, and started going to a Lyme Support Group otherwise, I probably would be dead by now. I have become so educated about this deadly, debilitating disease. What concerns me is the individuals that don’t have money to see a functional doctor or Lyme-literate doctor? I, myself, am running out of money (I have already spent over $20,000) and I still am very very sick! What is going to happen? One should not have to worry about all these concerns when one is so sick!
I encourage each and every one of you to go to your Senators, State Representatives and Governor to show your outrage about this scandalous behavior and that we care about this injustice! Also, think about filing a medical malpractice case against these conventional doctors so they know we mean business and that they need to become educated about late stage Lyme Disease or chronic Lyme Disease!
We can all make a difference!!
I am curious as to what protocol you are using to help your infection of everything. I see alot of praise for awareness of our disease but nary a detail on what is working for people? Can you share what is working for you?
Meditation, soaking in the soothing minerals in the Florida Gulf, prayer, QiGong and Medical Marijuana.
Betty,
I am in Virginia and would love to know more about the support group you mentioned. This is such an isolating illness.
Thank you Mary Beth Pfeiffer, for so succinctly nailing this horrific reality and addressing it loudly, publicly and fearlessly. Yes I am just another statistic of what had been called Chronic Lyme Disease yet another labeled has emerged, Post Treatment Lyme Disease Syndrome. For those that read this comment your know to what I am speaking. And to those of us that fit this category; the story seems old and stale. Living in Lyme infested Cape Cod, a cross terrain runner, I jokingly called my final stage of my run in the woods the “ deer tick run”. Infected twice in 2009, treated promptly and effectively with 30 days of doxy and all was well. As a medical professional, I worked long, hard and challenging hours so my fatigue and lingering pain was, hey, you’re just getting older I told myself. In 2011 started having seizures, at work no less. Hospitalized, scrutinized, poked and prodded by the best of the best in Boston, fibromyalgia; chronic fatigue, my seizures were “ psychogenic”. Surrounded by my amazing fellow nurses we persisted to find the cause of The Reality. God bless the now retired famous Dr. Sam Donta who agreed to see me as he was literally closing up shop. He asked that I bring ALL of my labs with me, and of course as a nurse, I had copies. Thumbing through, he pulls out a third positive lab from 2010, how did this get missed??, he asked in frustration. It is now halfway through 2014.
Yes, I then did the long term IV antibiotics and orals and herbal protocols; it was too late. You are right Mary Beth, the spirochete is brilliant. So I also became a host for Bartonella and Babesia and Erlichiosis etc. And so it goes. I am debilitated and agreed to leave my life in MA and move to Florida as instructed, for… comfort measures. Except I’m far from comfortable. Once again thank you, we need people like you who research, share, inspire and ignite change. To those similar to me, never give up hope, it’s all we have.
Do you still take the herbal recommendations like Japanese Knotweed? Did you have one in particular that helped?
THANK YOU! THANK YOU! THANK YOU! Mary Beth, you are terrific!
Thank you for all of your time and hard work on this subject. I became terribly ill last September and was confident I was dying. I spent a week in the hospital undergoing multiple tests and not a single doctor considered Lyme. After being discharged with doctors saying it was “psychiatric” and possibly “anxiety conversion disorder”, I requested a Lyme test from my general practitioner. Well the test came back positive with antibodies, but the antibodies “were not high enough”. I am still ill and had to stop working as I now suffer from Mast cell activating syndrome and CFS as a result. The terribly sad thing is I recall being bitten the end of August but because it did not leave a bullseye rash, well then it must not have been Lyme. It’s terrible that the medical professionals are too arrogant and prideful to listen to their patients and when they are unable to determine a diagnosis, they blame the patient by saying it is all in their head…it’s an outrage!
Mary Beth Pfeiffer deserves a Pulitzer for her reporting on TBD for the Poughkeepsie Journal.
She put a spotlight on an important subject others shied away from.
Looking forward to her new book.
What we need is a MeToo movement that begins to shake the very foundation of our pathetic, incompetent and greedy mainstream medical establishment. That will probably take more than just Lyme patients but we would certainly make a good start. There are many many more out there that are suffering from this system of bandaid sellers.
I agree with starting a movement. I was vaccinated with a series of mandated crap and then somehow got every symptom of Morgellons. Something is very wrong and it has ruined most of my life.
We do need a #TBDsTOO Movement! There over 300,000 of us! Excellent idea! I am soooo in!!
Lyme-like disease/insect-borne disease is not even acknowledged by the Dept. of Health in Australia and GPs treat at their peril.
Thank you so much for enlightening us on this growing and terrible disease. I have suffered with Lyme Disease for eight months. I had the rash, high fever, memory loss, could not climb stairs, etc. I found the tick and removed it. The doctor did blood work but it came back negative. He did CT scans and many other tests. Nothing showed up Lymes so he didn’t know what to treat me for. I was referred from one doctor to another. One doctor put me on Doxycycline because I had all the symptoms of Lymes. That saved my life. Until then I could not get out of bed for three months. Prior to the tick bite I was very active, had just gotten married and moved into a beautiful new home. One doctor even told me I could not possibly have Lyme because we don’t have Lyme in SC!! I was furious. What can we do to get our government to recognize what a terrible and life threatening and debilitating disease Lyme is. I heard a doctor in Charlotte, NC lost his license to practice medicine because he was treating patients for Lyme when their tests showed negative but he treated them on their symptoms. I’m looking forward to reading your book and pray they will find a cure. No one knows how terrible Lyme is unless they have suffered from it.
It is MANDATORY that Lyme Desease becomes an acknowledged desease. In Canada it is NOT !!! 2.5 years ago I became very ill over a 1.5 month period, and have lived in constant pain and worsening symptoms since. Twice I was tested for Lyme ( upon my insistence ) but the testing done in Canada is completely non conclusive. I have EVERY SYMPTOM of Lyme desease, have gone from a vibrant, enthusiastic active adult to a virtually non functioning human being. I have gone to countless Dr appointments, have had a multitude of diagnosis that then changed, and am now being treated for Fybromalgia with drugs that have not only further altered my personality but have little effect on my ever worsening state. I do not understand why the Canadian health system does not take this serious and am scared for my life. I want to get well and live again !!!! It seems that Vetrenarians have better tests than our health system as they now post the number of positive Lyme test results every year!!!! ( and yes I have even asked to be tested through their lab but it is not allowed ). I cannot afford to get diagnosed or treated in the States. Thank you for increasing awareness. Perhaps our health system will start to listen !!!!!!!
Claudia Lehnhoff
Claudia,
My heart goes out to you…I strongly suggest reading the book “Healing Lyme” by Stephen Buhner. This is the protocol I follow and it has helped me tremendously. I have lost faith in modern medicine and it is important that you find ways to heal yourself. Best of luck to you.
Congratulations Mary Beth and many thanks, will order as soon as available in UK. Any plans for a launch over here? Situation quite bad now. Our equivalent of CDC, known as NICE (!) recently produced new Lyme guidelines which still cling identifiably to your famous IDSA guidelines. I am not medically qualified or a scientist but, for the hell of it, compared them to recent NICE guidelines on TB. That was revealing, to say the least. The scope of TB advice was much bigger, with the range of published sources and spoken evidence frequently making use of the sort of material that had been specifically excluded from the Lyme guideline scope.