TOUCHED BY LYME: KC's Kathy White, telling it like it is to the CDC
This Lyme advocate had to miss a planned meeting with CDC officials because she had a stroke. She delivered her presentation to them from her hospital bed, via telephone. Here’s what she said.
Hello. My name is Kathy White. I had a stroke 12 days ago and am talking to you from my hospital room in Kansas. I got a tick bite in 1998 in Kansas City, Kansas, while I was supervising recess in a grassy area of a schoolyard. I got Lyme disease and babesia and have been sick ever since. I had to quit my teaching job. For the past 14 years, I have been an officer of the Lyme Association of Greater Kansas City. Our organization was formed in 1993. We serve people throughout Missouri and Kansas and also other states. We publish a brochure and a monthly newsletter. We give information to patients, the public, and medical professionals, and education packets to schools. We cooperate with the efforts of the Lyme Disease Association. A major concern of ours is difficulty getting diagnosed and treated. Most doctors in our area are unable to diagnose and treat us or refuse to do so.
There are 3 aspects of Lyme disease prevention: (1) preventing tick bites, (2) preventing early Lyme disease with antbiotics immedately after a tick bite, and (3) preventing the disease from becoming chronic. (1) Many tick bites could be prevented by controlling the deer population, using safe pesticides, and using permethrin on clothing. (2 & 3) The CDC can easily prevent many cases of early Lyme and chronic Lyme by making doctors aware that Lyme is in every state, by encouraging prompt and adequate treatment on the CDC website, and by dropping their website link to the IDSA treatment guidelines and creating a link to the ILADS guidelines instead.
The CDC is funded by taxpayers in all 50 states. Therefore, its employees should care about Lyme disease victims in all 50 states, not just the Northeast. The CDC should work for everybody. Statements on the website mislead doctors in most states into thinking that Lyme disease is just in the Northeast and Upper Midwest and not in their state. This causes many doctors to fail to diagnose it and even to refuse to test for it. If a patient does persuade a doctor to give the test, and the test is positive, the doctor often says, “Your test was a false positive, because we don’t have Lyme disease here.” One patient in St. Louis was told, “Our hospital has had a number of false positive tests lately.” The statements on the CDC website that say Lyme disease is mostly in the NE and Upper Midwest should be revised to say that, although most reports are in the NE & Upper Midwest, Lyme is actually in all 50 states, but it is vastly underdiagnosed and underreported in most states. Support groups have helped thousands of patients whose cases did not get reported, even if they met reporting criteria. Many people in Missouri, Kansas, and other states are going from doctor to for many years before they finally get diagnosed. Even at this late date, most people improve with long-term antibiotic treatment. There are many stories of children who missed years of school, but after lengthy treatment managed to get a GED and attend college. Long-term treatment is getting children out of bed and out of their wheelchairs.
The CDC should quit endorsing the ELISA test. It misses far too many cases and causes people to become disabled from lack of a diagnosis.
The CDC website says that ticks should be removed with tweezers, and it discourages the use of tick removers. This is unwise. Researchers at Ohio State University found that tick removers that slide under a tick are superior to tweezers for removing the tiny nymphs and do a better job of getting all the mouth parts out and most of the cement. Wherever tweezers are mentioned, the website should say “fine-pointed tweezers.” It is very difficult to remove the tiny ticks with tweezers without squeezing the gut. Many people have developed Lyme disease after a tick was removed with tweezers, even if the tick was attached only a short time.
It does not take at least 24 hours for a tick to transmit Lyme disease. Although most ticks take about that long or longer, many people are becoming infected in less time than that. Dr. Willy Burgdorfer said at a Lyme disease conference at Bard College in 1999 that about 5-10% of ticks that are carrying Lyme disease have a systemic infection and have the disease in their saliva and can transmit it as soon as they bite. He said, “There is no safety window.” That means that all statements that say it takes “at least” so many days or hours for a tick to transmit Lyme disease are false.
The CDC website says Lyme is largely underreported, especially in endemic areas. It should not say, “especially in endemic areas,” but rather “especially in states where many doctors don’t know the disease exists and don’t diagnose it.” It is vastly underdiagnosed in most states.
In 1990, Missouri ranked eighth in the nation in reported cases of Lyme disease. Then the CDC decided to call the disease STARI, because of genetic differences in the bacterium, and because it was being transmitted by lone star ticks. All the signs and symptoms in Missouri are exactly the same as Lyme disease. There is not a single symptom of Lyme disease that people in Missouri are not getting after lone star tick bites, except the ACA skin condition found in Europe. A study by Dr. Ed Masters found that patients in Missouri are twice as likely to develop arthritis as Lyme patients in the rest of the country. This is not a mild illness. There are many strains of flu, but they are all called flu. If different bacteria cause Lyme symptoms, they should all be called Lyme so they can be treated.
Several studies have found Lyme disease Bb bacteria in lone star ticks. Calling the disease STARI is causing thousands of cases to be undiagnosed in the central and southern states. Children have missed years of school, and adults have missed years of work, because the CDC has misled doctors into thinking that the disease in this area is a mild illness that can be ignored. Lyme disease and STARI are both in MO. The fact that STARI is in Missouri does not prevent Lyme disease from also being in the state, just as one strain of flu does not prevent other strains of flu from being in the same state at the same time.
The CDC’s link on their website to the IDSA treatment guidelines encourages doctors to underdiagnose and undertreat the disease. This needs to change. Overtreating the disease at the beginning can cure it. Undertreating it at the beginning causes people to need years of treatment later. It’s not just the lengthy treatment later that leads to the development of drug resistant bacteria; undertreating a bacterial disease at the beginning also contributes to drug resistance.
Almost everyone in our support group has chronic Lyme disease and babesia. Babesia is quite common in the central states. An unpublished study by Kansas State University found babesia duncani and Lyme disease Bb bacteria in lone star ticks and mice on two farms in Kansas. All six people that live on those two farms have been infected with both Lyme disease and babesia.
A statement on the CDC website about babesia says, “Babesia is mostly in the Northeast.” It should be revised to say, “Most reports of babesia microti are in the Northeast, but there are other strains of babesia in other parts of the country.” The vast majority of doctors in most states are unaware that babesia is in their state, and they are thus not diagnosing or reporting it.
The babesia reporting criteria says that if a patient has a positive IgM test for babesia, but the IgG is negative, the IgM must be a false positive. This statement should be removed from the critera. It’s an opinion. There’s no evidence for this. Many patients with Lyme disease and babesia may never develop IgG antibodies, because these diseases lower the immune system and can prevent the antibodies from developing.
The CDC website says prophylactic treatment of RMSF fails to prevent the disease. Actually, in the study on this subject, lab animals were given only a single dose of doxycycline. There is no proof that longer treatment wouldn’t work. People given 4 weeks of treatment for a tick bite to prevent Lyme disease are not getting RMSF or ehrlichiosis.
The purpose of the CDC is to help people, not to harm them. Please stop making us disabled. Please stop misleading doctors into thinking that there is no Lyme disease or babesia in their states. Please remove the link to the IDSA guidelines from your website. Please allow us to get diagnosed and treated adequately. Thank-you.
Click here for the website of Lyme Association of Greater Kansas City.
I so agree with you! I have been on Delaware for the last 10 yrs. To do something about Lyme n other tick born disease. I signed a petition from change.org, which was finally read by our “newly” elected Representative, the other 1 did not care what happen. I wrote back to him and gave him tons of information! He did get on the Del. Health department to start an awareness program. Everyone else here was so against Lyme disease n other tick born diseases. A small group went to our state Capital a few yrs. ago n they basically dismissed us as a bunch of nut cases!
Now they are eating their words about Lyme disease n the other diseases that go along with it. They have to promote awareness now.
The doctors here are still not on board with treating us! But I am working on this new Rep on that. We need the CDC to change like you said.
Kathy,
Bravo!! Thank you for this beautifully written letter, which hits home for so many of us who have become disabled by this horrible disease. It is imperative that the CDC change their guidelines for diagnosing and treating Lyme disease. It exists in all states and, in fact, is all over the world. Early and proper diagnosis will save our healthcare system and our economy millions of dollars and will not deprive people of happy, healthy and productive years of their lives. I hope the CDC will listen to your suggestions. Unfortunately, it may require the CDC members to either personally experience this debilitating and complex illness – or to watch a loved one suffer from it – before they understand.
Killing deer will not solve the Lyme problem. They are just one tick host of many. They just happen to be the most obviously prevalent tick host on the northeast coast where Lyme was discovered. The diseases appear to originate in small mammals, like white-footed mice and shrews. Biodiversity is the answer, not killing off one animal. See: “Lyme Disease: The Ecology of a Complex System” by Richard Ostfeld of the Cary Institute.
Kathy, thank you for this terrific presentation. How amazing that you did not let your stroke prevent you from carrying out your mission to inform the CDC of the facts! I hope you are recovering well.
I have had lyme disease since 1992. I was bitten by another tick in 2001 and finally was able to get treatment even though I only had 1 positive lyme band. I also tested positive for ehrlichiosis. I started going to multiple doctors who were “so called lyme experts” near boston MA, but finally found one who was not condescending in saying that I only had fibromyalgia. I have been on oral meds since 2001 and wonder if I should have gone on IV meds. Because it is summer I am back on biaxin. Doxycycline and tetracycline cause really bad herxheimer reactions so I know they are the ones that really work or me. I have extreme arthritis in my knees with very weak legs to walk up and downstairs. I recently had an argument with a nurse practitioner at my OLD PCP’s office when she kept putting a chart of ticks in my face. I am so way beyond that. I still have my lyme doctor but he is about 1 1/2 hours away from me and is semi-retired. I am so scared that he will retire and don’t know where I will go. If my PCP would treat me after that after talking to my lyme doctor I am sure I can tell her what antibiotics to give to me. She is new to me and very quiet about lyme disease so I don’t know if she knows anything about it. I am about an hour away from Boston MA. I am now 60 and have suffered for a long time.
Dear Kathy:
I am so honored to know you, and to learn from you!
You have been and continue to be an encouragement and an inspiration!
Thank you for serving over 20 years as an advocate and friend to all people with tick-borne diseases, and especially to those of us who live in Kansas. Without your hard work, and that of the Board and the membership of the Lyme Disease Association of Greater Kansas City, many of us would have not found the education and support we need.
God bless you and heal quickly. Keep teaching us how to fight for our lives and those who live around us.
Thank you for sharing updated peer reviewed medical education with the CDC! Hopefully, they will correctly represent current scientific knowledge about tick borne diseases on their website, as is prudent for maintaining the public trust.
Big Hug,
Peninah
Bravo! If none of us speak, how can they listen? NOW if we could only open their EYES!
So many Americans are sic from tickborne diseases. Yes, in every single state. Our country can not run on a disabled population. How can they not know that? How can they not CARE enough to get it right and hold those accountable for half truths or whole lies, or downright neglect while humans of every age are suffering needlessly?
Thank you for working so hard for change! Without it, our trust in our government health officials will never recover. And people will continue to be too sick to work, go to school, and live a normal life. People suffer so many complications as tiny bacterium are allowed to ravage every system in our broken bodies. As those lose their mobility and reason, as bodies flail with seizure and strokes, or die in the still of the night from heart block, doctors push pills for pain, and psych drugs for neurological Lyme symptoms. We are weak but our will is strong. In time they will have to listen and open their eyes. Or our country and world is doomed.
Thank you Kathy. You go girl!
I would like to see a day where all physicians have access to a “Lyme Kit” which tests for Lyme and all co-infections. The kit would be endorsed by the CDC and ordered through the labs who would update them as new tests become available. The difficult part of the equation is even if patients test positive, who will treat them? Diagnosing is the first step. We need Lyme clinics in every state that can effectively treat without the threat of the CDC coming after them.
Seems like a long road to travel but there is hope on the journey!
Prayers for you and all Lyme sufferers.
Ticks travel on freight trains throughout the country. I contracted RMSF in a state not noted for the disease but I lived 2 blocks from a heavily wooded railroad tracks. My cat brought the tick home and planted it on me. Horrible disease and I am glad to have survived.
I live in Kansas and after 22 mos of horrible pains and many, many different dr.s and specialist, I finally got diagnosed with Lyme, babesia and bartonella. The only dr who would listen to me and who is currently treating me, all natural for now, lives in California. She also has an office in Australia. People need to be aware of all of this and how horrible it actually is.
Thank you for sharing. I was teaching also and was bit by a tick. Unaware of the impact it was treated incorrectly and within a year I was no longer able to teach, barely able to walk, in constant pain, and many other problems. It has been 5 years since I was bit (September 2010) and my life has been forever changed. I was told by numerous doctors that there was “no such thing as lyme in Missouri” and that it was “all in my head”. Due to my inability to work and lack of financial support, we lost our home. I am thankful to be alive and am able to do a lot more now since I was able to find a LLMD that we could afford. I am not 100% and will probably never be but I do not let that get me down. I have changed my diet, work slow and steady at home, and help where I can at the home. Although the doctor has told me I can drive (after almost 4 years of not) I only do so when necessary or when I with someone because of my potential of passing out~ light headed/dizzy spells. I am not afraid but let everyone I know know what has happened to me and let them know what needs to be done if they are bitten by a tick or think they were. I would not wish this horrible disease on my worst enemy!
so is there a dr. in the st.louis area that will believe and treat lymes disease? My husband was bit 3 years ago by a tick and has been on a path of hell ever since. Please Please refer me to a doctor that will believe it is lymes disease. Thank you.