If You Think You Know Lyme It's Time For a Serious Refresher Course
Over the past 6+ months my Neurologist has performed every test in her arsenal except a spinal. Every test she ran came back abnormal yet not able to pin down a diagnosis (see post Are Those My Brainwaves). She refered me to a Rheumatologist to start on the tread mill again. I started researching illnesses which included brain wave abnormalities to weed out my more common symptoms. There were the ones I expected, Lupus, Multiple Sclerosis or other autoimmune disorder. I didn’t think my answer would come from RA Doctor. More reasearch and what I found was alarming, not the illness alone, the politics and witch hunt taking place. The illness is Lyme or other tick borne illnesses. The CDC rates Texas as med-high concentration. The east coast is at epidemic levels with some articles stating we are facing epidemic levels across the country. I had a different idea for this post yet feel it’s critical to get this information out ASAP. When I learned of the divide in the medical community over Lyme, I shook my head. What is the controversy. The CDC establishes treatment standards for doctors. The standard Lyme test is based on 20-year-old information. What happens is you go to doctor for a Lyme test, it comes back negative. You then find out the test is 30% +/- correct. The CDC acknowledges the test has false positives yet the standard for testing hasn’t changed. With a lack of confidence in the test, I wanted to see a Lyme Literate Doctor. This blew my mind, a current day Salem Witch Hunt is happening. On one side of the controversy are doctors who specialize in Lyme and tick borne illness. If a tick bite is not caught right away it grows in your system. Lyme looks like a long skinny curly worm. It bores thru your body damaging your organs or brain depending where it lands. The symptoms can move around your body as the virus spreads. Lyme is hard to kill, it can encapsulate itself in an invisible cocoon and is near impossible to see under microscope. The Lyme doctors take the approach, attack the virus aggressively for long periods of time to prevent a relapse. People who are very ill from Lyme can require years of antibiotics. Not only to kill the virus more importantly to save your life. Heres the rub, the CDC states 2 weeks of antibiotics will cure Lyme and doctors can prescribe an extra 2 weeks if needed. Medicare pays based on the standard set by the CDC. Insurance companies only pay what Medicare pays. Doctors treating patients until they are well started getting called before the Medical Review Board having their license taken away for a year. Insurance companies are cancelling people’s policy and they are left with 150k+ in out-of-pocket expenses. People have to decide do we lose our house or get their loved one treatment. It is heartbreaking to watch the videos on YouTube. There are two main associations which doctors join, it has become one assoc. for long-term treatment and the other against. Most doctors go underground and do not list themselves as Lyme Literate. When I decided to see a Lyme Literate doctor it was a process. I called the association, they took info on where I lived and would call back. The next morning I received a call with a doctor’s name and phone number. I later found out the doctor I’m seeing was the first to lose his licenses for a year. I didn’t know if I should jump for joy or not. The information below includes a heartbreaking story of the death of founders son. I can’t stress enough how serious the illness can get. I’m battling over 50 symptoms on any given day. The size of tick you are looking for is a nymph about the size of sesame seed. When you’re doing tick checks on you and the kids, these are hard to see. Around 50% of people get a bull’s-eye rash. Please remember to check your scalp, they can hang out in your hair. A flashlight might help with this task. I’ll keep you up to date on how my appointment goes. I’m not worried about what, I need an answer to move on to the next hurdle. I will do a f/u post including more information about treatments. Warrior
Lyme Disease Foundation http://lyme.org
The LDF has worked tirelessly helping others since its formation in 1988. Together, we have trailblazed a wide path of awareness and assistance by educating millions through our media programs; hundreds of thousands in our direct contact programs (e.g. phone calls, letters, faxes, internet), and hundreds of thousands through our medically-accredited education programs. During this time we have obtained millions of dollars for government-administered research and education programs and have assisted others around the world in starting their own foundations, non-profits, support groups, and the like. Empowerment of the public was vital in order to help people protect their families from the devastations that wrecked havoc with my son, Jamie. When he died, a few weeks before his 6th birthday, he was unable to talk, feed himself, sit, crawl, hold his head up, and he fed through a tube in his stomach. It was with that concept of education and empowerment, that I wrote the book, Everything You Need to Know About Lyme Disease.
The LDF was established at a time when only a handful of researchers and patients knew of the “new” illness known as Lyme arthritis. The illness was considered harmless, affecting only joints, could only be contracted in several towns in Connecticut, and one where one cured oneself without medication. The LDF shattered that paradigm and many more that were subsequently proclaimed. Remember when people thought one dose of oral antibiotics cured everyone at any time during the disease? That was proved to be inaccurate. Remember when the disease was considered to have “stages” and it took months to years for the disease to move from one “stage” to the next? That was proved to be inaccurate when our scientists proved dissemination could occur within minutes.
The LDF’s main focus was to bring the diverse groups together (researchers, practitioners, veterinarians, and patients) to help them have a better understanding of the realities of Lyme disease.
We set a course that made sure that basic science findings were matched with the medicine being offered to patients. We made sure that over 100 years of “Lyme” history was reproduced and available for all to read in order to debunk the concept the disease was “new.” Now, we know that a 5,300 year-old Neolithic frozen mummy found in the Alps was proven to have Lyme disease. We made sure that all of the other Lyme manifestations (brain, heart, eye, etc.) were placed on posters and in brochures for all to see and consider. When this disease was portrayed as only a “white persons” disease, we made sure that healthcare professionals also realized that people of many other colors and heritage also suffered from it and were at risk.
People now know that Lyme disease is a multi-system illness that could be life-threatening, the standard antibody blood tests do not predict who has or did not have an infection, and sometimes antibiotics did not clear the infection out of patients. Indeed, some mainstream practitioners were rigid in their beliefs and did not like the message, so they attacked the messenger. But, mainstream basic research proved that science supported the LDF’s message. Even in 2012, we read that a “new” study coming out of Tulane University [http://www.plosone.org/article/info:doi/10.1371/journal.pone.0029914] proves the persistency of Lyme disease infection despite aggressive antibiotic treatment. This harkens back to a prior study, of 15 years ago that showed the same thing.
The tick-borne disease world has changed since our first scientific meeting held a mere 3 months after our formation. Within the first two years, the LDF moved the public’s, employer’s, government’s, and media awareness of “Lyme disease” from an unknown unrecognized mystery illness to one that is universally recognized at over 90%. While science still has a long way to go to find permanent solutions, our mission has been accomplished. There are now many wonderful tick-borne disorder nonprofits throughout the United States, Canada, and around the world. Many wonderful people have joined the community as leaders and are now on the forefront trailblazing new scientific exploration and providing support for those in need. The government has and still is funding many diverse research programs, between that and private scientific funding, I believe the solutions will soon be here. There are enough strong advocates within and outside the medical community to ensure that innovative research is an ongoing reality.
My husband and I co-founded the LDF, when my son Jamie was diagnosed with congenital Lyme Disease. Since then, I have volunteered about 1,000 – 2,000 hours a year for over 24-years to keep the LDF’s doors open. I volunteered throughout the many times Jamie was in and out of the hospital. I continued volunteering despite Tom, Jamie, and my being right in the heart of San Francisco during the 1989 earthquake. When my son died in 1991, I continued volunteering at the LDF. When my daughter was born in 1993, I was still volunteering. Presidents, Congressional members, government personnel have come and gone, and still I was volunteering. Then, I went to law school and spent time between classes answering LDF mail and conducting media interviews from the campus. As time passed, my dad got sick and died and subsequently my mom became sick and died. Despite this, I was still volunteering and conducting LDF business. Throughout the years, the wonderful Board members and other volunteers were also volunteering, fitting their efforts in around their family’s own trials and triumphs.
Unfortunately, in February 2009, I fell on black ice and broke my kneecap and arm. Despite being in a cast, wheelchair, and leg brace, I continued to volunteer at the LDF, attend meetings, design brochures and programs, and attend professional programs (all with the help of my daughter). I was in physical therapy, to relearn to walk, until October 20, 2011, when I was finally walking. Unfortunately, on November 1, 2011, during a long-term power outage from a freak Halloween snowstorm, I fell and massively broke my femur. After multiple surgeries and an extended time in a wheelchair, walker, and nursing home, I find I am now, once again, in physical therapy to re-relearn how to walk. In reflection, since founding the LDF, I have lost my son, mother, father, 5 pets, and father-in-law. I have had the joy of recently celebrating my 38th wedding anniversary and have been lucky to have an incredibly wonderful daughter who just turned 18 and is just finishing her first year of college. Based on the unique lifetime I have had, I find it is time for me to move on to the next chapter in my life.
I am busy securing all of the LDF documents and plan to place them in a format so that the information will not be lost to posterity. As of last week, we no longer accept donations and consider the LDF closed. We wish everyone well and hope to see you’all in the future. We appreciate the vitality and strength of all who have worked so hard to help find solutions to all tick-borne diseases.
I am thanking the LDF friends for their incredible support. I am especially thankful for the LDF Board members who helped change the face of the world, specifically Willy Burgdorfer, PhD, MD (Hon.); James Miller, PhD; Paul Lavoie, MD; Joe Fisher, MBA, CPA; Len Schuchman, DO MPH, FAAFP (who is also our fabulous webmaster!); Julie Rawlings, MPH; John Anderson, PhD; Congressman Berkley Bedell; Thomas E. Forschner, MBA, CPA; Paul Duray, MD; Fran Newman; Frank Demarest & his wonderful family; and Ed Bosler, PhD. I want to make a special mention of Ms. Johanson, an incredible woman who has supported the LDF through all of our great times and lean times. She has been our single most ardent silent supporter throughout the years.
Also, I should thank a variety of leaders in the Lyme community, including, Randy Sykes; Monte & Gregg Skall; Mary Halinski; Linda Lobes; Linda Rinaldi; Sandy Cifone, Bea Szantyr, MD; Elsie Anderson; Ruth & Irwin Vanderhoof, PhD; Linda, Stephanie, & Shane Gordon; Renee Thaler; Dave Kazarian, R.Ph.; Diane Kindree, RN; Amy Jones; Gloria Wenk; and Linda Weiss. Celebrities have also been instrumental in helping, including Kevin Bacon, Billy Joel, Emilio Delgado, Christy Brinkley, and Gianni Russo.
There were many sponsors that donated to the LDF and asked nothing in return, these include: The Society of Actuaries; the Actuarial Foundation; Cutter; Hartz; Walmart; Country Cape Antiques; the No Frills Foundation; and various Rotary clubs. We thank our research partners, such as NIH’s Rocky Mountain Labs; Tulane; Texas A & M; Connecticut Agricultural Experiment Station; and many others.
While many members of Congress have tried to help in numerous ways, Senator Joe Lieberman, Sen. Chris Dodd, Sen. Rick Santorum, and Representative George Hochbruckner and Rep. Joe Courtney have been instrumental in transforming the world’s understanding of ticks and the dangerous pathogens they can transmit.
I also want to thank my daughter, Christy Vanderhoof-Forschner, for the last several years of help in getting me, my wheelchair, and luggage through the airports and to various programs. I am so very glad your life has been tick-disease free! And, a special thanks to Jamie in heaven, for his endless love to us while we tried to make his time on earth one of Joy and Hope.
I thank the patients for their persistence in seeking their proper diagnosis and to the doctors who believed in them, even to the point of risking their own licenses and reputations. I apologize that I have not included everyone’s names. But, I wanted to thank some people now. Once again, I thank you all for your efforts to work together to improve our world for the next generation.
I find I have many fond memories, as well as some sad times. We all have met very wonderful people, some who are here and some that are gone. We will all carry their stories with us. Maybe, someday, I will document the past 24-years of my life so that you can all know the real behind-the-scenes stories during my journey at the tip of the iceberg known as “Lyme disease.”