Lyme Disease Knowledge Survey Results

May 11th, 2009 by LymeWorks

                               Lyme Disease Knowledge Survey Results

Two hundred seventy-eight Wisconsin citizens representing seventeen counties: Barron, Bayfield, Buffalo, Burnett, Columbia, Douglas, Marathon, Oneida, Pierce, Polk, Price, Racine, St. Croix, Sheboygan, Vilas, Washburn, and Waukesha answered our Lyme disease survey.

 

The number of respondents treated for Lyme disease was 130 or 46%. One hundred nine,

39% had a family member who was treated for Lyme disease. One hundred twenty- three, 44% had a relative who was treated for Lyme disease.

 

Every respondent knew someone who’d had Lyme disease; 119/42% knew 1-5 people who’d been treated for Lyme disease; 70/25% knew 5-10 people who’d been treated;                        35/12% knew 10-20; 6/.02% knew 20-30; 2 knew 30-50; 1 knew 50-100; 1 knew 150.

                         

Forty (40) respondents reported Ehrlichiosis/Anaplasmosis, 3 reported West Nile Virus; 6 reported Babesiosis; 2 reported Bartonella/Bartonella-Like Organism (BLO), which is more common than Lyme in several East Coast states; and 4 reported La Crosse Encephalitis, which was named for the city of La Crosse, Wisconsin, after the pathogen was found there in 1963.

 

Fifty-one respondents wrote comments. Five lines were not enough space for what they had to say. Those infected multiple times with Lyme and Ehrlichiosis, often appeared to be more knowledgeable than their doctors. Respondent comments are in Lyme green:

 

Early treatment following prompt diagnosis was cited by many as the key to their recovery:

“I have had Lyme four times including Ehrlichiosis. I’m healthy and free of it because I had early treatment.”

[I had Lyme] Two times. I believe treating it early will prevent reoccurrence.”

“My doctor diagnosed my Ehrlichiosis quickly and started me on treatment immediately before tests confirmed it. I have no after effects.”

Some respondents and others had not been so lucky:

“I was diagnosed in the early 80s, have had the rash and Bell’s Palsy. I still have trouble with the side of my face I had it on.”

“I have had Lyme for the past 15 years or longer . . . sick 1-5 times a year.”

“My neighbor in Minnesota got it but was not properly diagnosed. He never got over it completely.”

“A friend of mine is confined to a wheelchair after having Lyme.”

 

Lyme disease treatment varied. Respondents received anywhere from 1-2 pills (6) to more than 60 days of antibiotics (26). The majority of patients (37) or 30%, received three weeks of treatment.

“Please initiate a program in which doctors are educated to read, evaluate, and understand Lyme disease test results. They are confusing to many doctors who then treat differently.”

            Just 26% of Lyme disease-infected respondents said they had fully recovered!                                                                                                                                                                  

Because so few cases of Lyme disease meet the CDC’s national reporting criteria, only 9 respondents (7%) were required to be contacted by local Public Health Service workers.

 

             Symptoms of Lyme disease respondents could check on the survey:

fatigue __                                IBS (Irritable Bowel Syndrome) __   depression __

shortness of breath __             heart problems __                               dizziness__

muscle pain __                        skin eruptions __                                 seizures __

joint pain __                            muscle weakness __                            Bell’s Palsy __

migrating pains __                   inability to concentrate __                  shakes __

headaches/migraines __          forgetfulness __                                  muscle twitches __

insomnia __                             memory loss __                                   foot pain __

shooting pains __                    getting lost when you know the way __

stiff neck/creaky neck __        clumsiness/in-coordination __ night sweats __

balance problems __                ADD (Attention Deficit Disorder) __ frequent urination __

ears ringing/hearing loss __     rages (unexplained) __                        meningitis __

dyslexia __                              vision loss/ eye “floaters” __               appendicitis __

After they looked at the symptom list, some respondents wondered if their Lyme or Ehrlichiosis treatment had been successful. One wondered if he had Lyme disease.

“I have now recognized other symptoms–blurred vision, sweats, insomnia. I thought it was from something else.”

“I just know how I feel after [having had Lyme] four or five years [ago]. I just thought most of it was getting old. I’m 58.” [Marked10 symptoms in 4 different body systems.]

“I have a chronic back condition, aches, pains, stiffness. I attributed the headache to sinus problems.”

“I don’t know if I have Lyme but have had many of the health difficulties listed.”

 

The second page of our survey contained three sections of True and False questions. Early in the survey collection process we realized many questions were skipped by  respondents because they had no knowledge with which to decide the veracity of the statements. A “don’t know” question mark [?] was added to surveys. Answers in BOLD:

Lyme disease. . . 

1. T  F   ?   is not serious.        

2. T  F   ?   is easily treated.

3. T  F   ?   there’s no such thing as lasting Lyme disease/ “chronic Lyme disease.”

4. T  F   ?   is rare.

5. T  F   ?   can go dormant and reactivate.

6. T  F   ?   is a brain infection.

7. T  F   ?   people die from Lyme disease

 

1. Lyme disease is serious. The Lyme bacterium is complex, containing 132 functioning genes compared to its distant cousin syphilis which has only 22 functioning genes. Late-stage Lyme disease and tertiary syphilis share several similar symptoms.

“Lyme is very serious & must be treated aggressively until it is completely gone! I am concerned about the reoccurrence and treatment of it.”

“Lyme is mysterious–shows itself in many ways–is difficult to diagnose & is very serious.”

2. If Lyme disease is diagnosed and treated soon after infection (and no co-infections were contracted along with Lyme) recovery can be straightforward. Unfortunately, Lyme disease symptoms are not always recognized, so the disease progresses untreated. Many physicians wait for positive tests to begin treatment thereby losing the opportunity to prevent more entrenched and harder to treat Lyme disease.

 

3. Countless studies have documented persistent Lyme disease infection in patients treated and re-treated with antibiotics. In fact, there are no tests which can prove conclusively that any person is free of Lyme bacteria.  

 

4. Lyme disease in not rare. It has been reported in every state in the Nation. More than 200,000 new cases of Lyme disease will be contracted this year in the United States. Wisconsin, consistently one of the top ten states for Lyme disease, will have roughly 10% of the 200,000 cases or an estimated 20,000 new cases in 2009.

 

5. When attacked with antibiotics Lyme bacteria can change from spiral-shaped worm-like spirochetes into round “cysts.” From these thought-to-be-dormant Lyme disease cysts researchers have filmed emerging spiral-shaped Lyme spirochetes. Lyme disease cysts have a hard “shell” less susceptible to antibiotics, so spirochetes which re-emerge from cysts may be one reason patients relapse after antibiotic treatment. 

 

6. Lyme disease is not always a brain infection, but it has the potential to become a brain infection. Meningitis, encephalitis, Bell’s Palsy, hearing and vision disturbances, tremors, tics, and seizures can be brain and central nervous system manifestations of Lyme.   

 

7. People die every day from Lyme disease, but very few deaths are recorded as such. The underlying cause of many illnesses and conditions can be Lyme disease infection, but physicians, coroners, and medical examiners are not trained to look for this root cause. The Centers for Disease Control does not track deaths from Lyme disease.

 

The section of our survey that asked if Lyme disease can look like MS (Multiple Sclerosis), ALS (Lou Gehrig’s disease), Fibromyalgia, Lupus, CFS (Chronic Fatigue Syndrome), Autism or Asperger’s Syndrome, or Late-stage (Tertiary) Syphilis was the most ignored. The truth? Lyme disease is often misdiagnosed as all of the above. 

 

Ten days to four weeks of treatment cures Lyme disease.                                       

False. Sometimes ten days to four weeks of treatment cures Lyme disease, but short-term treatment failures have been noted in numerous studies.

 

Malaria is found in Wisconsin.                                                                                     

True. In several Western Wisconsin counties, over a five year period, malaria was reported but not one case of Babesiosis–a malaria-like illness common to the state.

 

There’s no need to protect yourself from ticks.                                                         

False. Protecting yourself from ticks and all biting insects is imperative to prevent a host of serious illnesses.

You can’t get Lyme disease twice. (Once you’ve had it, you’re immune.)                      False. You can get Lyme disease and many other illnesses each time you are bitten.

 

People make too big a deal out of Lyme disease.

False. Unfortunately, people, public health, physicians, and physicians training programs have not made a “big enough deal” out of Lyme disease which is why people and public health officials cannot correctly answer most of the questions on this survey.

“Much unknown [about Lyme disease]. I don’t think docs are taught this in medical school; therefore, unless they have had it themselves, no big deal.”

 

Medicine has the cure for Lyme disease; people should trust their doctors.

False. Medicine has no ‘one size fits all’ cure for Lyme disease. If a person still feels sick after they have been treated for Lyme disease (and their doctor won’t help), they should change doctors and learn everything they can about Lyme disease and co-infections.

“Be persistent and your own advocate. See another physician who will understand.”

               

No children are born with Lyme disease.

False. Every day children are born with Lyme disease. Since the 1980s Lyme bacteria have been proven to infect cord blood, the placenta, and the fetus. Lyme infection can cause miscarriage, stillbirth, and death of the newborn. Even with antibiotic therapy a mother may still pass Lyme to her unborn child. Many people believe the rise in autism spectrum disorders could be due to unrecognized, late-stage, neurological Lyme disease in children. Virtually no research had been done on congenital Lyme disease.

                                                                      

The risk of Lyme disease is the same as it has always been.

False. Reported cases have climbed steadily, though most cases of Lyme, an estimated 90%, are not reported, and deer ticks, the primary transmitter of Lyme disease, now inhabit areas they were not known to inhabit previously.

 

Ehrlichiosis/Anaplasmosis is worse than Lyme disease.

True. Ehrlichiosis/Anaplasmosis can be worse than Lyme disease because symptoms develop rapidly. (Lyme has a more gradual onset.) High fever, fatigue, and dizziness make people feel like they are “going to die.” Without treatment the person may die.

“. . .found the bug on my knee after pulling weeds by kneeling wearing shorts (bad choice). The next morning I woke up with an inflamed knee–sweats, chills, weakness–I passed out twice–once at the top of the stairway and had bleeding wound. Don’t ever want to go through this again.” [Person probably contracted Lyme and Ehrlichiosis.]

 

Babesiosis is transmitted through blood transfusions.                                                    True. Babesiosis, a red blood cell parasite called a piroplasm, has been accidentally transmitted to patients through blood transfusions given at the Rochester Mayo Clinic.

 

If you have Lyme’s bull’s-eye rash, wait until you have symptoms to see your doctor.  False. If you have a bull’s-eye rash, you must begin antibiotic treatment immediately. Do not let your doctor test you for Lyme or wait for test results (which will most likely be negative). The best patient outcomes follow early antibiotic intervention.

It’s more important to treat the symptoms of Lyme disease than the illness itself.          False. When Lyme disease has been identified as the cause of illness and proper treatment is initiated, patients are often able to stop taking medications prescribed for their misdiagnosed illnesses. “Rheumatoid arthritis” is a good example. However, Lyme disease can cause extreme health crises: atrial fibrillation, heart block, aneurysms, and seizures. In these instances medical intervention must supersede antibiotics.

“I’m being treated for rheumatoid arthritis even though I show a negative RA test. Lots of complications.”

 

Lyme disease tests are a good indicator of infection. 

False. Commonly-used Lyme disease tests are poor indicators of infection. They are based on indirect measurements of Lyme’s presence in the body. Because tests are so poor, physicians have been urged by the Centers for Disease Control to base Lyme disease diagnoses on clinical examinations, not test results.  

“When I had Lyme disease, the doctor didn’t think I had it. I had to insist on testing.”

“Stay with the doctor who listens to you and treats you, even when the tests are not positive.”

“I had another tick bite last fall and my doctor refused to think it was Lyme since my titer [test] was negative . . . have changed physicians to a doctor that understands symptoms even though titer is negative.” 

[The doctor thought] my bite was unusual in that water-filled blisters popped up around the bite. Dr. took a sample of that fluid to test for Lyme & it was positive.”

 

Doctors can make a clinical diagnosis of Lyme disease without positive tests.

True. Doctors can and should make a clinical diagnosis of Lyme disease. Unfortunately, the majority of physicians do not have the knowledge necessary for them to do so.

 

Doctors know all the diseases associated with Lyme.

False. The vast majority of doctors have no knowledge of diseases associated with Lyme.                                         

Doctors have lost the license to practice medicine for treating Lyme disease.

True. Lyme-treating doctors have lost their license to practice medicine for providing more than three weeks of antibiotics to their most ill Lyme patients. Some of these physicians have had their licenses rescinded, restricted, or revoked by medical review boards. The majority of complaints against these physicians have been brought by health insurance companies who do not want to pay for extended Lyme disease treatment. Threats from governing bodies have forced Lyme doctors to close their practices, go into retirement, or leave one state to practice in another state where physicians are free to treat Lyme patients without fear of insurance and medical review board persecution.

 

People in Wisconsin often travel out of state for treatment for chronic Lyme disease.

True. Few Wisconsin physicians treat Lyme disease longer than three weeks even when the patient is still sick with the illness. Physicians know their peers have been forced out of practice for providing longer treatment to patients. Governor Doyle’s 2004 Lyme disease proclamation asked Wisconsin physicians to treat Lyme disease here to stem the tide of patients seeking help out of state.

Criticism of Survey

“Some of your questions are really misleading and hard to answer. I think that if you want an accurate survey, you should ask better questions.”

“Many [questions] are not easily answered with a true/false.”

“I honestly had no clue. I think you should have added an “unsure” option.” [We did.]

“This is kind of stupid. I fail to see the relevancy of the T/F test.”

 

While we acknowledge considerable lack of skill in preparing our survey questions, we were able to see, through missed answers and unanswered questions, how little people know about Lyme disease. Those who criticized the survey sharply couldn’t answer most questions and the questions they did answer were answered incorrectly most of the time.

 

While we were conducting the survey we found that unless they’d had Lyme themselves or their family members had been infected, people were not interested in filling out the survey, so we acknowledge some bias on the part of those who did take time to respond.

 

Lack of Diagnosis was a recurring theme throughout survey comments:

“It’s difficult to distinguish between chronic Lyme disease & CFS or POTS [severe heart and blood pressure condition] & it’s hard to find a doctor who is proactive on it.”

“It took me 18 months and 3 doctors to diagnose me.”

“I have all the symptoms, had previous diagnosis of Lyme yet my doctor says I don’t have Lyme now . . . I don’t believe him; I don’t believe his tests and I live with the symptoms.”

 

Persistence of Lyme Disease

“Tested positive for Lyme two times in June 08 and again in September 08, doctors not sure if I ever got rid of it the first time.”

 

Countless studies have proven Lyme disease can persist after short term treatment and  repeated treatment, too, though no regimen superior or alternative to antibiotics has been promoted by mainstream medicine.

 

Lyme disease is a complex illness often requiring in addition to antibiotic therapy, immune system support, the elimination of other infections and viruses in the body, and the correction of hormonal, adrenal, and thyroid imbalances stemming from the infection. Patients may also need pain management, dietary revision, allergy testing, sleep aids, and vitamin/mineral supplementation to address complications of Lyme and co-infections.

 

Loss of Faith in Medicine came through the survey comments section loudly and clearly:

“I would really like to know who will help people who fit the profile for Lyme. What doctors do we talk to? How do we get help?”

“The doctor . . . refused to accept that I had Lyme disease . . . She told me I have depression and need to see psych doctors. She wanted me to go to the Pain Management Department. I cancelled the appointment and went to Urgent Care . . . [saw] doctor [there] who was an angel.”

“I am no longer having her as my MD . . .”  

“I felt abandoned by the medical profession.”

More information on Lyme disease and co-infectious agents must reach the public. The Wisconsin Division of the Department of Public Health distributed 4,000 CDC pamphlets on Lyme disease in 2007. That CDC pamphlet would have reached less than .0008 of the population and not one of our state’s visitors and part-time residents.

“There needs to be more accurate info put out to the public regarding Lyme.”

“People do not realize that a tick can bite and they won’t feel it.”

“Wish I knew more about Lyme disease and its complications.”

“I cannot answer most of the above statements.”

“Keep the awareness going. Doctors are not as aggressive as I’d like to see.”

 

Survey Summary

Because Lyme disease is under-recognized and under-reported there is little awareness of the seriousness and persistence of the illness and even less understanding of the devastated lives those with persistent infection endure.

 

The need for Lyme and insect-borne disease information educational campaigns cannot be underestimated. Wisconsin citizens believe their physicians should be the primary keepers of disease information and that their physicians should be able to treat them correctly for every one of the insect-borne diseases so common to our state.

 

Until the science and pathology of Lyme disease and co-infections reaches physicians and both standards of care for Lyme disease treatment are available to every patient, there can be little hope of remedying current Lyme disease controversy over diagnosis and treatment.

 

Both standards of care for Lyme disease treatment can be found at www.guidelines.gov, though the Centers for Disease Control only publishes the restrictive Infectious Diseases Society of America’s guidelines for the treatment of Lyme disease and co-infections.

 

Survey comments show a grave disconnect between physicians and their patients. Loss of faith in medicine will continue to grow as more and more people are infected with Lyme disease and co-infections and not cured. Many will become disabled by Lyme and other insect-borne diseases. These “disabilities” on the part of patients and physicians contribute significantly to loss of productivity in the state of Wisconsin.

 

Action & Awareness Campaign      Western Wisconsin Lyme Action Group     Amery, WI

http://lymeworks.com/media/docs/SURVEY.FIGURES.IN.doc

Posted in Lymeworks Main Blog | 1 Comment »

One Response

  1. Chana Alexander Says:

    Right now I am suffering with afib. They are talking a permanant pacemaker and disconecting my heart electric impulses permanantly. I believe it was brought on by my Lyme Disease 2 years ago but no one will listen to me.
    I am only 54 and was told that the symptoms that I have (joint problems, sleep problems, foggy mind, heart palps.) were very rare. WRONG!!! My 28 year old son got Lyme’s last year, still has joint pain and fatigue. Friends 11 year old daughter, joint pain and fatigue, 2 years latter. Another friends 2 year old, now 4 year old, tired, achy, still some neck pain and somedays just not up to what a 4 year old boy should be. I cannot believe something so serious is treated like it’s nothing by docs. I was trying to do some research on my heart and ran across your article. I feel like no one is listening.

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