THE TEXAS MEDICAL BOARD IS HAZARDOUS TO YOUR HEALTH
TEXAS MOBILIZING TO PROTECT LLMD'S AFTER LATEST LOSS
Central Texas is about to lose its only Lyme-literate medical professional. At least one other Texas LLMD is understood to be currently under siege by the Texas Medical Board (TMB).
Other doctors have stopped treating Lyme patients due to threats, whether direct or implied, from the TMB, and others most surely have never treated Lyme patients due to fear of potential TMB action for doing so.
The Board clearly has an anti-Lyme agenda and is employing all means possible to shut down informed Lyme treatment in Texas.
The only known remaining LLMD's in the state are being swamped with new patient requests, and it is unknown if they will be able to accommodate everyone. Indeed, it is unlikely
Even if they are, there is no guarantee that the few remaining practitioners won't meet the same fate, soon leaving Texas without any qualified Lyme-literate medical professionals.
We Texans have been complacent because we believed that we were being protected by one of our key State Senators who suffers from Lyme. Six years ago, in a special Senate hearing, he promised that he would not allow the TMB to harass physicians for treating TBD's. That protection has become an empty promise.
It's time for Texas to do what New York and California have done so well before us, and it will take all of us to get this done. No matter how sick you are, you will be able to do something, if only contacting your State Representative and Senator or adding your name to a petition.
A rapid response is being formulated, as we must act quickly. To become part of the solution, send an email to [email protected] with a copy to [email protected].
IMPORTANT: Please use the following format:
SUBJECT: Begin your subject line with one of the following options, depending on your situation:
TEXAS PATIENT TEXAS CAREGIVER TEXAS MEDICAL PROFESSIONAL TEXAS ADVOCATE TEXAS OTHER INTERESTED PARTY
NON-TEXAS PATIENT (add state or country) NON-TEXAS CAREGIVER (add state or country) NON-TEXAS MEDICAL PROFESSIONAL (add state or country) NON-TEXAS ADVOCATE (add state or country) NON-TEXAS OTHER INTERESTED PARTY (add state or country)
MESSAGE TEXT: Copy the following template into the text box of your email software and provide the requested information. If you are not comfortable providing your address, please include at least your city and state as we will need this information to compile information on the number of imperiled Lyme patients in Texas, and their locations.
__________________________________________
[Personal information is optional except for city and state.]
NAME ADDRESS *CITY, STATE, ZIP PHONE EMAIL ADDRESS
WERE YOU INFECTED IN TEXAS? (Yes, No, or Unknown)
ARE YOU CURRENTLY BEING TREATED FOR LYME?
IF SO, WHICH DOCTOR ARE YOU SEEING AND WHAT IS HIS/HER LOCATION? Texans: If you do not wish to identify your doctor, please indicate if you are traveling out-of-state for your care. Please also indicate how far you are traveling (in-state or out) in order to get competent care for Lyme.
DO YOU HAVE PERSONAL OR PROFESSIONAL CONTACTS TO TEXAS STATE OFFICIALS? If so, which one(s)?
DO YOU HAVE PERSONAL OR PROFESSIONAL MEDIA (BROADCAST, PRINT, OR ONLINE) CONTACTS? If so, which one(s)?
DO YOU HAVE ANY OTHER PERSONAL OR PROFESSIONAL CONTACTS WHO MAY BE ABLE TO BENEFIT THIS EFFORT? If so, who?
DO YOU HAVE ANY SPECIAL SKILLS WHICH YOU WOULD BE ABLE TO CONTRIBUTE TO THE EFFORT? If so, which ones?
__________________________________________
Do not close this thread, do not pass go, do not take your next dose of antibiotics until you have sent us your email. Your continued access to competent Lyme treatment could not be more imperiled. We must act quickly and decisively.
The future of our healthcare depends on what you do in the next five minutes.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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Posting on behalf of the Texas Lyme Disease Association (TLDA) with permission from the author:
Dear Group:
I have received permission from the Texas Lyme Disease Association to try to raise money for the legal fees for our nurse practitioner in Austin who has lost her position for treating Lyme patients.
After one donation from a patient, her remaining legal fees are $2,750. Given that she lost her ability to practice in Austin for sticking her neck out for us, I hope you will agree that we should help her with these fees.
The TLDA is also trying to help in the effort to address the problem of LLMD persecution in Texas. We may be bringing an LLMD from another state to speak to the Texas Board of Medical Examiners, which is at the heart of the problem right now.
If you would like to help in any way -- even with $5, if that's all you can do (obviously the most can you do, the more the TLDA can do) -- please send a check made to the Texas Lyme Disease Association to PO Box PO Box 684511, Austin 78768. [NB: Per Pat's instructions, a correction has been made to the PO Box number.]
Your check is tax deductible since the TLDA is a provisional 501(c)(3) corp. You can designate whether it is for this specific nurse practitioner's legal fees or to be split between her fees and the TLDA.
In sending a check, you will not only be taking action to help yourself and others who get this disease, but also helping to legitimate the TLDA with the IRS since one of its requirements is that money must be raised from a broad number of people. Under our current status, we are not allowed to operate just on the funding from one or two sources.
We are trying to obtain grants to set up a real office with a real employee who can be available to Lymies, since that is money it would be hard for us to raise from patients and their families, but we need a show of support from the people the TLDA is meant to serve or we cannot interest other non-profits in helping us.
The total amount does not matter as much as the number of people who contribute, so again, any amount will help. The March of Dimes started by collecting small change, after all, and look how big they've grown. Maybe we should start a March of Lymes.
If you have any questions, please feel free to email me. The TLDA is licensed with the State of Texas (Secretary of State's office).
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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*** This thread is closed to further conversation so that we may post updates which will be easy to find. Please see the ``floating'' topic for discussion on this issue:
A web site is currently under development for the "Stand Up for Lyme" campaign. At this point, we are working to select scientifically-documented content which will clearly and decisively demonstrate the prevalence and severity of TBD's in both Texas and the US. (While the campaign is currently focused on Texas due to our recent losses of Lyme-literate medical professionals, we hope that it will benefit similar efforts in other states.)
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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*** This thread is closed to further conversation so that we may post updates which will be easy to find. Please see the ``floating'' topic for discussion on this issue:
Next Wednesday, I will be meeting with a writer to discuss access to medical care for Lyme disease and other TBDs. I would like to be able to discuss, with accuracy, stories besides my own, and so am soliciting stories from other Lyme patients.
Please tell us your story, making sure to cover the questions listed below. Please email your replies to Suzanne at [email protected] with a copy to David at [email protected].
Feel free to respond either in direct response to each individual question, or in essay form.
We want very much to hear both from people who live in Texas and those who live outside of Texas. All of your stories are important to our work.
We will protect your privacy, and your names will not be used in published articles without your express consent.
Here is what would be helpful for us to know: (if you do not have exact answers, please approximate to the best of your ability)
- Where do you live currently? (City and state if you are comfortable sharing that information, or just your state as we need to know whether you are living in a state which has passed legislation protecting LLMD's and/or requiring insurance coverage for treatment)
- When, where, and how did you became ill?
- How difficult was it for you to find a doctor who would (a) diagnose you; and (b) treat you? (e.g., how many doctors did you see before getting a diagnosis, how much time and money did you spend on treatment for other illnesses with which you were misdiagnosed, how far did you have to travel to find a Lyme-literate medical professional, any other information which you feel is relevant to your journey to diagnosis and treatment; or are you still struggling to find it)
- How much sicker did you become while searching for a proper diagnosis and treatment?
- Does, to your knowledge, your doctor have charges pending by the state medical board related to treatment of chronic Lyme which could threaten his/her license?
- What other information do you feel is relevant to your access to competent Lyme care?
- If you live in a state which has passed legislation protecting LLMD's and/or requiring insurance companies to cover treatment, do you feel that you have benefited from this legislation and, if so, how?
- Would you be willing to speak directly with the writer to provide more detail about your story?
This writer wrote about the challenges of access to Lyme treatment several years ago, and is trying to determine what, if anything, has changed.
Your stories will also help David and I with our work to provide supportive information to demonstrate the need to protect Lyme-literate medical professionals in Texas which we hope will prove beneficial to patients and doctors in other states, as well.
If you have any questions, please do not hesitate to ask.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Thank you for participating in the Stand Up For Lyme campaign to raise awareness of the prevalence of chronic Lyme and other TBDs in Texas, and to educate our community and state officials about the need to make it safe for our health care professionals to treat us for this debilitating illness.
While we work on some things behind the scenes, we are also in the process of developing a web site which will serve as our primary means of communication with both the Lyme community and the community at large. We would also like to sell t-shirts and other items to help raise money to cover our expenses as well as raise awareness.
To that end, we would like to get your ideas for a logo. If you are an artist and can provide the (digital) artwork, that would be terrific. If you're like me and have ideas but absolutely no talent to actually create them, then describe your vision as clearly as possible and we'll see if we can persuade someone with artistic talent to bring it to life.
In developing your ideas, keep in mind that the driving force behind "Stand Up For Lyme" is that it is time for the Lyme community in Texas to stand up, speak out, be counted, and be heard, all with the ultimate objective that everyone in Texas who has or will get Lyme disease will have easy access to lifesaving medical care.
Thank you in advance for your support and creativity!
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
Please note the PO Box number change in the post above about contributions to the TLDA for the NP's legal expenses.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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Lyme patients say they're losing the one who will treat them Nurse practitioner said no Austin doctor willing to practice with her
By Mary Ann Roser AMERICAN-STATESMAN STAFF Thursday, March 30, 2006
Patients with chronic Lyme disease say that after Friday, the one medical professional in Austin who has understood their misery and helped them heal is leaving the state, another victim of a medical establish- ment that scorns those who treat people like them.
Nurse practitioner Ginger Savely said she is moving her practice to San Francisco because she could no longer find a doctor in Austin willing to supervise her practice.
She expects about 75 of her 400 Lyme patients to follow her, but the rest will be left with scarce treatment options because few practitioners in Texas -- Savely said she knows of two -- treat patients the way she does for the tick-borne bacterial disease.
She gives chronic Lyme patients oral antibiotics, and sometimes injections, for many months, and sometimes several years, until their symptoms -- which can include extreme fatigue, muscle pain and even heart trouble -- are gone.
That protocol, supported by the International Lyme and Associated Diseases Society and followed by some other practitioners nationally, is, however, controversial. The traditional treatment for Lyme disease, which affects about 20,000 Americans a year, is to give no more than 30 days worth of antibiotics.
"You can't believe how much it hurts and distresses me to turn people away," said Savely, 55, a University of Texas nursing school graduate who once had Lyme disease.
Savely said she doesn't blame her upcoming move on her supervising physician. She knows that many traditional doctors consider her a quack, she said.
But she and other practitioners like her say their patients need ongoing antibiotics to wipe out the infection raging inside them. They contend the therapy is safe and often is the only hope for the constellation of debilitating problems their patients face.
"In all the practice years of doing this, I haven't seen the (ill) effects" of long-term antibiotics, said Savely, who thinks she developed Lyme after camping in Maryland in 1987 and recovered after a year of antibiotics. Tuberculosis "gets treated with antibiotics for 18 months, and no one says a peep about that."
Lyme disease is tricky to diagnose because there is no test that is always right. It's also tough to treat because the multiple symptoms can come and go, and the longer a person has it, the harder it is to attack.
But critics of Savely and practitioners like her across the country say that if antibiotics are going to work, they will work within 30 days.
"There's no value in giving prolonged antibiotics," said Dr. Lisa Ellis, who works in an infectious disease practice group in Austin.
Antibiotics can cause stomach trouble and other physical problems in addition to promoting resistance to bacterial strains.
If symptoms persist, something else could be wrong, Ellis said, such as rheumatoid arthritis or fibromyalgia, asyndrome with some of the same muscular and fatigue symptoms as Lyme.
"I'm aware some people feel better after they've been listened to or after they got a long course of antibiotics," Ellis said. "That doesn't prove the antibiotic did anything. That's not science."
Savely's patients who went to mainstream doctors and received 30 days of antibiotics said they got sick again when the drugs stopped. Some were told they were depressed or needed a psychiatrist.
P.J. Bailey of Kingsland said she did without antibiotics for a month during an insurance change, and her joint pain, memory problems and a sensation of bugs crawling on her quickly returned. She is taking antibiotics again, but with her husband disabled by a stroke, she can't afford trips to California.
"It's really scary, and I'm really worried about what I'm going to do," said Bailey, a 52-year-old bank loan processor. "I don't know who's going to want to treat me. Who's going to want to treat all of us?"
Dr. John Frederick, who has supervised Savely and her patients since 2000, said he could no longer bear the political pressure, which echoes years of Lyme disease dramas played out before medical boards and legislatures in Texas and other states.
He said he highly respects Savely, who was named Texas Nurse Practitioner of the Year by her peers in 2004, but realized he could not continue with her after a call from his friend Dr. Donald Patrick, executive director of the Texas Medical Board.
"It was not a threatening call," Frederick said. "It was not a call to stop treating. He said we had to be real careful treating chronically ill patients in a way that was not standard in the community."
Patrick said the board has not disciplined doctors in recent years for treating Lyme disease.
Savely was disciplined last year by the state Board of Nurse of Examiners for not following certain protocols and record-keeping requirements in treating a Lyme patient.
Some of her patients are mobilizing in hopes of changing the treatment environment in Texas.
Karen Bolin, 40, who has Lyme and is president of the Texas Lyme Disease Association, said no one in Texas knows the disease like Savely. Bolin recently wrote a letter to Gov. Rick Perry decrying the lack of medical care in Texas for Lyme patients.
Patients, including Suzanne Shaps, 47, of Austin, and David Kocurek, 57, of the Fort Worth suburb of Colleyville, in February formed Stand Up for Lyme when Savely announced she was leaving. Their goal is to educate the medical community, legislators and anyone who will listen about chronic Lyme disease.
"We hope to create an environment where doctors feel safe treating Lyme disease," Shaps said.
Legislation might be needed.
Ellis said she knows Savely has a lot of satisfied patients. But she said she has seen several patients Savely had diagnosed with Lyme who did not have it.
The reason they relapse when taken off antibiotics, Ellis said, is that the antibiotics overstimulate their immune response, causing the symptoms to reappear even though the infection is gone.
A 2003 study of 129 Lyme patients, co-authored by Dr. Mark Klempner at Boston University School of Medicine, concluded that a long course of antibiotics was no more useful in treating cognitive symptoms, such as memory and attention problems, than a placebo.
But Dr. Raphael Stricker, who supervises Savely's San Francisco practice, said the research was flawed because it considered "long-term" treatment to be three months, and the dose for two of those months was too low to be effective.
Even so, Stricker said, the paper "had a chilling effect on everyone."
New research by Dr. Brian Fallon of Columbia University could change that, said Stricker, president of the International Lyme and Associated Diseases Society. Fallon tested long-term antibiotic use in Lyme patients and found it indeed improved cognitive functioning in adults with chronic Lyme.
Alfred Stanley a 51-year-old Austin political consultant who summers in Nantucket, said he was bitten there in July and got a bull's-eye rash, a classic sign of Lyme disease.
He was diagnosed with Lyme there and prescribed three weeks of antibiotics. Afterward, Stanley developed twitching in his feet. He got back on antibiotics, and the twitching went away. After he got off again, the twitching returned and, eventually, moved to his arms.
Back in Austin, he went to Savely and has been on antibiotics for six months. He doesn't enjoy taking them, he said, but believes he won't get better without them.
"Patients should be allowed to choose," he said. "That's what patients are being denied."
Transmission: Bacterial infection carried by certain types of ticks.
Incidence: About 20,000 people contract Lyme disease in the United States each year. It's most common in the Northeast and Great Lake states; 77 cases were reported in Texas last year.
Symptoms: Sometimes, a rash resembling a bull's-eye. Usually, fever, chills, headache, muscle aches, joint pain and fatigue. Chronic Lyme can include gastrointestinal problems, stiffness, facial paralysis, heart trouble, and problems with concentration and memory.
Prevention: Avoid ticks by staying away from woody, brushy areas, especially in spring and summer, when ticks are most active. Avoid high grass and leaf litter, wear long pants and sleeves, use repellent with DEET. Examine body closely after being in woody areas. Ticks should be removed from body within 18 hours.
Source: Centers for Disease Control and Prevention
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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Further to our work to make it safe for health care practitioners to treat Lyme in Texas, we need to get a better idea of how many doctors are treating Lyme disease beyond the IDSA (Infectious Disease Society of America) 30 day protocol
If you are being treated for Lyme in Texas , please respond with the following information by copying and pasting this post into an email to [email protected], and inserting your answers:
YOUR NAME:
YOUR LOCATION: (Town or City and Zip Code)
PROVIDER'S NAME: (please indicate if this is a doctor, nurse practitioner, or physician's assistant)
PROVIDER'S LOCATION: (Town or City and Zip Code)
WERE YOU PREVIOUSLY SEEING ANOTHER DOCTOR WHO HAS SINCE STOPPED TREATING LYME PATIENTS OR LEFT THE STATE? IF SO, PLEASE PROVIDE THEIR
NAME:
LOCATION (Town or City and Zip Code): (if this professional has stopped seeing Lyme patients)
OLD AND NEW LOCATION (City, State and Zip Code): (if this professional has left the state)
(This question does not apply to doctors who have retired.)
Our ability to build a case to convince state officials that our situation is untenable and must change depends on information which you provide us. I hope by now that we have gained your trust and that you will be comfortable sharing this information with us.
If, however, you are still not comfortable providing us with your doctor's name, please provide the initials and location to help us to ensure that we do not double count or miss anyone.
All information is held in complete confidence, and will be used to determine how many doctors are treating Lyme in Texas, how many have stopped treating Lyme, and how far people are traveling to reach them.
With your help, we are confident that Texas will become an LLMD-friendly state. Once we have achieved that goal, we can move on to making Texas a Lyme-free state.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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