Wisconsin Lyme Law
ASSEMBLY COMMITTEE ON HEALTH (PART 1)
Assembly Bill 768 – Rules Regarding the Diagnosis and Treatment of Lyme Disease
On February 3, 2016, the Assembly Committee on Health will hold an executive session and a public hearing at the Wisconsin State Capitol.
Thank you to all who spoke today at the hearing. Here are brief summaries of what each brave person talked about.
- Rep David Craig opens with his speech about why they are asking the medical board to establish rules and guidelines for the treatment of Chronic Lyme disease. He talks about legislation in other states that protect doctors from treating Lyme disease as they see fit. He says this bill is just the opening of a discussion we in Wisconsin need to have about this spreading serious disease.
- Yvonne Lauer tells her story of trying to get diagnosed with Lyme disease enduring painful and useless tests trying to find other answers. She tells how one doctor told her, ‘I don’t see Lyme in you, stop Googling so much.” She went on to many doctors getting many misdiagnosis until she finally found a Lyme literate doctor through her own research. Now she is in treatment for Chronic Lyme. She wants to start this bill to help other patients get better as she is starting to, and give that chance of healing.
- James Conway, MD, Pediatric Infectious Disease Specialist from UW Hospitals and Clinics speaks against the bill, not believing government should get involved. He shoots off facts about Lyme disease saying things like it takes at least 12 hours of tick attachment for Lyme to be transmitted and he doesn’t know any doctors who have been investigated, to which several on the medical board actually argued with him saying they believe he is wrong. (One of those members, Rep James Edming having had Lyme himself in the past saying he would not wish this disease on his worst enemy.)
- Susan Allen does a great job of talking about how her life was going so well, family, job and security and all was wiped away when she began feeling unwell and started the stream of doctors in Wisconsin, Illinois and Mayo clinic and could not find answers. She talks about how it would of been easier to have cancer because then she would of had doctors who believed in cancer, were not afraid to treat it, there would be a plan of action and treatments to choose from and insurance would cover it. She was then questioned about her treatment, and on who her doctor as that got sanctioned by the medical board.
- A father with a 14 year old daughter who has Lyme disease spoke next. They have been on a 5 year stretch of trying to find a doctor to correctly diagnosis her. She has knee pain, digestion problems and heart issues. She was dismissed with anxiety and growing pains. Now she sees Dr Jemsek. He has paid over. He talks about how Dr Jemsek has been harassed by the medical board many times. In the last year it has cost this dad over $15,000 in medical expenses. He talks about homeschooling otherwise his daughter would of missed over 2 years in school.
- Another man, the husband of one of the woman who spoke earlier gets up and says, “In all due respect to the physician that spoke earlier, I can tell you the IDSA guidelines that they use, has left millions of people disabled and dead in their wake.” He talks about the national policy of treatment developed by the International Lyme and Associated Disease Society (ILADS), and asks that we use those instead of the IDSA guidelines. He suggests to Rep Tittl (spelling may be wrong on last name,) that be tested for Lyme as he had earlier shown an interest due to his diagnosis of Rheumatoid arthritis.
- Mike Nichols speaks about “The View” newsletter that Wisconsin Lyme Network (WLN) put out and sent to physicians. He talks about how anything that is not purely IDSA related will just be ignored. He talks about how there is not test that shows that Borrelia has been eradicated from your system after 30 days of Doxycyclene. He talks about how his son ended up in a wheelchair ‘after’ that 30 days of Doxy. He talked about Attorney General Blumenthal’s investigation into the IDSA Lyme guideline writer panelists and how they were all found to have conflicts of interest. He talks about needing doctor protection for doctors to treat Lyme disease without fear or being in trouble for it. He talks about children getting ostracized by doctors. He talks about how Wisconsin is the last of 9 endemic state to pass legislation to protect doctors. He talks about how ticks carry at least 17 different infections and noone talks about that. He talks about all the strains of Bartonella and that it is not even known how to treat it. He talks about how patients have been in studies that have shown that people diagnosed with Chronic Fatigue and Fibro and other invisible illnesses have all tested positive for Lyme disease and Bartonella. He talks about how Lyme patients constantly relapse because of the Borrelia’s ability to morph into cyst form. He talks about how each co infection needs to be treated with different meds. He talks about tick spread infections being able to be spread in fifteen minutes. He talks about blood in the blood banks being tainted. He gave very touching testimony. He then got questioned by Rep Jesse Kremer, who seems compassionate to the Lyme dilemna. They discuss the medical system is set up to fail a patient as they are set up to make money, not cure patients. He shares that we need the ILADS guildelines offered as a standard of care for doctors to choose from.
- Kristen Wilhelm She talks about over 300,000 people being infected with Lyme disease each year and how Wisconsin is one of the leading states in infections. She talks about the need for co infections to be addressed. She says she supports changes in having the Clearing House rules included in Lyme treatment guidelines instead of having the medical board make new rules. She talks about having over $65,000 in out of pocket costs in treating Lyme disease. Her expenses are so high because insurance won’t cover her bills because her doctor treats, “outside of the box.” she talks about testing not being accurate and that doctors should be allowed to make clinical diagnosis based on symptoms like they are allowed to with other diseases.
- Bill Wucherer, health officer for the city of Franklin, Wi, for 23 years, asks the medical board to consider the numbers of cases diagnosed. Wi had over a thousand cases and many of them will go onto stay sick and not respond to the current treatment guidelines. He talks about the lack of care providers that properly treat Lyme for Lyme patients.
- Kristin Collins, nurse and past President of Wisconsin Lyme Network (but not speaking on behalf of WLN) talks about her experience with Lyme disease and treating for six years straight and now being diagnosed also with Powassan Virus. Kristin talks about the need for practitioners to use the Clearing House Lyme Guidelines and she gave them a copy of them along with a CDC map of Lyme cases in the US. She talks about the lack of educated doctors , on tick borne diseases, even though Wisconsin is one of the top endemic states. She talks about Lyme disease being grossly underestimated and under reported. She talks about it being the great imitator of other diseases such as ADHD, MS, Parkinsons, Fibromyalgia, Lupus, Schizophrenia Disorder, Bipolar and many more. She talks about the myth that a tick needs to feed on you for a certain amount of time to get infected. She talks about Lyme bacteria can lay dormant in you until a stressor lowers your immune system and it comes out months or years later. She talks about transmission and about how all her kids are sick and she feels she passed it to them. She also talks about the myth that Lyme is not in Wisconsin. Many doctors say this to their patients. Which is obviously very wrong. Pets get treated and tested for Lyme, they get better treatment then we do. She talks about a possible bill that would force doctors to report to patients that a negative test may not be accurate as other states have.
- Alicia Cashman, Madison Lyme Support Group Leader, talks about the “war” that Lyme patients enter into once becoming sick and realizing it’s Lyme. She talks about the CDC mandating doctors to treat a certain way and go by faulty tests that “suck.” She talks about there being 300 strains of Lyme worldwide and how Lyme tests only picks up a few. And than about how there are strains of many of the co infections too. She says we need to be able to go to doctors knowledgeable in tick borne diseases. She talks about how doctors will vilify Lyme testing labs that specifying testing for Lyme disease and other tick borne illnesses when these labs are actually more consistent and accurate. She talks about how Lyme patients have to travel across the states to just get treatment for Lyme literate doctors. She talks about renaming Lyme something else, like Dr Horowitz did calling it MSIDS since Lyme is more then just Lyme, it’s also co infections. She talks about the origins of the Lyme guidelines. She talks about the importance on research on transmission. She expresses that there is evidence showing that it is sexually transmitted. She states the fact that suicide is the #1 cause of death in Lyme patients.
- Jeri Dobson, nurse and Lyme patient, speaks about a guideline just needing to be just that, a guideline. She talks about some of her misdiagnosis, and how the clinic she worked at would tell patients who came in with a rash to wait until they had symptoms, and worry about it then. She has been told by one doctor that her symptoms were just an allergic reaction to thte H1N1 shot she was mandated to get as nurse. She was told by another that she had MS because chronic Lyme does not exist. After eventually treating herself for Lyme, she had a positive Lyme test ‘after “treating. Now after treating she talks about her memory getting better, no longer getting lost going to work, or forgetting her dogs outside. She says to stay with the current IDSA guidelines is arrogant, ignorant and dangerous. She says medicine should evolve, the same guidelines should not be used now that were made years ago.
- Tanya starts out saying she is a former vet tech and also agrees that pets get better treated and tested then humans. She was diagnosed with Lyme many years ago and got the usual misdiagnoses. She talks about her friend who got bit by a tick, had a bulls eye rash and still his doctor told him there was no Lyme in that area. Luckily her friend’s dad was a dr and treated him and he got better. She also talks about how the guidelines should just be guidelines and how it’s not “black and white.”
- Jim Fox talks about how he had Lyme for 8 years. He said he pulled a deer tick off him and went to the ER and got a short script of Doxycyclene. Afterwards he developed dementia like symptoms. He believes he got Lyme disease on the DNR and applied for workmans comp and keeps getting denied. He was told they couldn’t test him for Lyme for four more weeks because that’s how long it takes the antibodies to show up. He now has written some publications and has talked to groups of children trying to educate them on the dangers of Lyme. He brings up that Lyme brings a lot of financial hardships.
- Diane Stienbback (Name may be misspelled) tells her Lyme story. She had a short course of antibiotics. She talks about how successful her life was and how active she was until she got Lyme at which point, “she couldn’t get out of bed.” She continued to tell how lyme affected her ability to work. She talks about after being on long term antibiotics some of her pain went away like her shoulder problems, but she is still sick and will be probably forever to some point. She talks about how the Elisa test was repeatedly saying she didn’t have Lyme but eventually she did have a positive Lyme test. She tells the hearing panel to watch, Under Our Skin. She talks about doctors who have gotten their license taken away for Lyme so says she won’t tell them her doctors name because she wants to protect him.
- Sophia Biel, 17 year old heartbreakingly discusses her family’s Lyme ordeal, and how she was born with Lyme disease as well as her two sisters. She speaks about how hostile doctors are as soon as you bring up Lyme disease. She talks about one abusive pediatrician that as she lied on the table with a headache and in pain, told her to stop faking and go to school. She talks about how she wanted to “over vaccinate” her while she was already very sick. She talks about how the “young and infected” don’t have a chance. There’s a whole generation born with it, and they can’t get help. She says, “I don’t know what it is about Lyme disease that the medical community thinks is just a joke.” She says, that she is here at the hearing saying all this because she doesn’t want all that she has been through to be in vain.