Below are the
results of a non-scientific survey I conducted this past January for the
Connecticut Hearing, “Perspectives on Lyme Disease.” The survey reveals the
perceived impact of Lyme disease on people primarily from Connecticut and
other areas. The first part is the actual survey. A summary of the results
follows.
Participation was
voluntary; the response by individuals in just the first four weeks (the basis
of the survey results) was overwhelming.
I am posting this for
the benefit of others who may find this helpful in dealing with legislators
and the medical community.
This survey is still
available for anyone who has not had an opportunity to participate. The
results will be updated next year and perhaps annually should I continue to
collect results beyond this calendar year. Go to
http://lymesupport.net/la/. The link is also available at the home page
for this website.
Do you have issues
you would like the State of Connecticut and/or other responsible parties
to address regarding Lyme disease (borelliosis) and other tick-borne
illnesses?
Do you want to
help educate others regarding these your concerns?
If so, please
use the survey below to express your concerns in relation to your
experience. You may provide a video interview of your responses if
desired.
Please make a
copy of this form and fill in by hand.
Send your
response(s) by January 18, 2004 if at all possible. The next hearing in
Connecticut January 29, 2004.
Print and use this
version of the survey if you want to mail back to us. Otherwise, you may
use the online survey form to provide your responses. The online survey
form is located at
http://lymesupport.com/la/lds.htm
We will also accept videotape presentations and emailed testimonies of
your concerns. Just be sure and use the survey as a guideline for what
to talk about. Please provide your contact information regardless what
method you use to send us your results.
ABOUT US:
You will be submitting your survey results to "CT Lyme disease/OTBI
advocates" (or "CT Advocates", neither official names) which is a small
group of volunteers, concerned, dedicated Lyme disease support
people and advocates, who plan to act as liaisons in presenting your
questions, concerns and testimony regarding the impact of TBIs on your
life.
Our united hope is to foster a better future for mankind regarding the
impact of Lyme disease and other tick-borne illnesses. One of ways in
which we might accomplish that is by presenting collective concerns of
the citizens of Connecticut and elsewhere our local, state and/or
federal authorities responsible for the health and welfare of it's
citizens. We have an upcoming opportunity to present your concerns to
the Connecticut Attorney General via a state hearing. Your input is most
welcome by way of this survey!
To contact us by email, send email to:
mailto:nancy[AT]lymesupport.com
Nancy
Nancy can be reached at (203) 924-9395
Please make a copy of
this form and fill in by hand. Due to blank lines for you to write your story,
it is 5 pages long. Submit your response(s) by January 18, 2004 if at all
possible. The next hearing is January 29, 2004.
1. Please provide the following contact
information. Full
Name_______________________________________________________ Organization_____________________________________________________ Street address____________________________________________________
Address (cont.)____________________________________________________
How
I found out
about this survey:_________________________________________________
2. Please identify and describe yourself:
Month/year of birth
______________________
Gender
Male
Female
3. Select any of the
following options that apply:
I
give CT Lyme disease/OTBI advocates permission to utilize/print
my survey
results (items #2-7) in full or in part.
I
give CT Lyme disease/OTBI advocates permission to use
my
contact info (from #1) as necessary. I understand that
my contact information will not be sold, given away or misused,
and I will only be contacted if believed to be necessary.
I
request that CT Lyme disease/OTBI advocates
not share any contact
information from section #1 except my initials, town and
state to anyone outside of the advocates collecting this information.
Your
name___________________________
I
am willing to testify in person regarding my story/concerns in
public (example: a public hearing) if I am available.
I
give permission to present my concerns in full or in part via
videotape or other recording for use by CT Lyme disease/OTBI
advocates for investigative and/or educational purposes regarding
problems with Lyme disease and other tick-borne illnesses.
4. The information I am
providing below is about:
___myself.
___my child of whom I am a legal guardian.
___Other: _______________________________
(Note: we will not knowingly use data for anyone other than you or your legal
child without his or her consent.)
5. What are your biggest
concerns about tick-borne illnesses? (Select up to five you would
like to elaborate on further in the survey)
____Inaccurate lab tests
____Diagnosis problems
____Treatment/cure issues
____Difficulty finding a qualifed health care practitioner
____Suppression of supportive research
____Insurance coverage issues ____Title
19 or Husky coverage issues ____Loss
of time at job or school due to illness ____Lack
of an standard for treatment for early or chronic infection . ____No
acceptable standard for diagnosis
____Inaccurate reporting of cases of Lyme disease ____Tick
control
____Safety of donor blood in blood banks ____Tick
testing
____Persecution and/or censorship of particular doctors
____Over-reliance on faulty lab tests for diagnosis
____Incompetent doctors
____Disability issues
____Education issues
____Public health issues
____Vaccine issues
____Impact of family/marriage
____Impact on friendships
____Impact on job performance
____Financial burden
____Multiple family members infected with TBIs ____Other
concerns ___________________________________________________________________ Your name___________________________
6. Please discuss your concerns about Lyme disease and/or tickborne illnesses
in relation to your experience(s).
7. Please summarize your concerns or state any other information, questions,
comments or suggestions you want to bring to the attention of the office of
the Attorney General or other responsible parties.
Your
signature_____________________________________
Date:___________________________
Submit form via US mail
to address on the first page.
Copyright Nancy Berntsen for CT Advocates.
Last revised: 12/4/2004
224 surveys were obtained from 38 states and Australia.
Approximately 200 were submitted via internet form. Of these, 180 were
analyzed for the summary. The following data has been acquired from these 180
surveys:
Participants by gender:
Female: 146, Male: 32 and 2 M/F couples
38
64 Difficulty finding a qualifed health care practitioner
24
40 Suppression of supportive research
35
60 Insurance coverage issues
1
1 Title or Husky coverage issues
15
26 Loss of time at job or school due to illness
30
44 Lack of an standard for treatment for early or chronic
infection .
21
33 No acceptable standard for diagnosis
25
39 Inaccurate reporting of cases of Lyme disease
19
20 Tick control
5
6 Safety of donor blood in blood banks
2
3 Tick testing
22
39 Persecution and/or censorship of particular doctors
23
32 Over-reliance on faulty lab tests for diagnosis
34
51 Incompetant doctors
8
18 Disability issues
7
12 Education issues
6
10 Public health issues
3
4 Vaccine issues
13
19 Impact on family/marriage
6
8 Impact on friendships
5
11 Impact on job performance
16
30 Financial burden
7
19 Multiple family members infected with TBIs.
5
14 Other concerns (specify below)
Other concerns (write-in
responses; actual quotes from the surveys)
# 4, 10, 11, 13, 17
all of the above
All of the above issues are serious problems. Proper
diagnosis and treatment are extrememly rare.
Appropriate pain management
Basically everything above concerns me
Better testing is required so that proper research
into incidence, treatment, and outcome can be done. Without better tests
these will be compromised.
Comprehensive info on chronic conditions, reinfection/further
complications, which ticks?,standard medical agreements on symptoms, chronic
changes and real treatments that work
CT has known about this illness for over 25 years and
had done very little to control ticks or educate the public.
Diagnosis, Treatment/cure, education, Insurance,
communication between doctors.
Disability Issues, Physicians being threatened with
loss of licenses if they treat, ill-equipped physicians regarding LD
doctors ignorance of chronic lyme
Don't know what Title 19 and Husky coverage are. Other
problems : diagnosis problems, treatment/cure issues, suppression of
supportive research, insurance coverage issues, lack of a standard for
chronic infection, no acceptable standard for diagnosis, not reporting cases
of Lyme disease probably due to fear of loss of license,
persecution/censorship of doctors treating or researching lyme disease,
safety of donor blood (from lyme and other pathogens), I believe Lyme
disease is transmitted by many means (not just ticks - veterinary drug mfr
Fort Dodge includes in its Lyme vaccine "manufacturer insert" disease
transmission data of lyme disease from 1 infected group of dogs to a 2nd
group of previously uninfected dogs - all dogs were tick free.
early detection in children / misdiagnosis as other
minor illness
Educating the Public about the serious ramifications
of lyme disease.
education issues
Everything about the disease is unacceptable and an
insult to humanity. Physical, financial, emotional pain to patients and all
involved parties.
everything on the above list is a concern
functioning with chronic lyme on a daily basis over a
lifetime and the costs involved
How Lyme disease has effected myself, my husband, my
child, my father and several other family members.
Human to human infection (another vector)
I am extremely concerned about all of the above.
I could have easily checked every item on the list on
concerns. It's all very disturbing.
I could have highlighted at lest five more of the
above.
I couldn't make my choices above & have them stick; so
my 5 choices are: inaccurate lab tests, tick control, insurance issues,
incompetant doctors, fiancial burdens
I sent my survey and hit the send button without
filling out the following information. Sorry!!!!
I would like to testify if asked, but I'm scared of
possible consequences
ignorance among most MD's about Chronic or ongoing
Lyme disease symptoms
ill being treated by public, doctors and govt as a
nousence diseases. IT IS SEROIUS.
Inability/refuse? by physicians diagnosing eairly ,suspected,clinical
&Laboratory findings for eairly treatment
Incompetant doctors
It was very difficult to select only 5 from the above
list. The persecution of Lyme doctors, insurance co. denials of coverage,
CDC ridiculous reporting critera consistently being mis-interpreted as
diagnosis criteria, , overall extreme culture of denial, and security
breaches at Plum Island all combine to the very high probability of a govt.
cover up of the extent and severity of this horrible, debilitating disease.
The vast majority of cases flow out from Plum Island. Yale is notorious
for denying even the existence of chronic Lyme disease, and for failing to
diagnose NUMEROUS clear-cut cases. Yale works with Plum Island on
projects. What is going on???
It's impossible to choose only 5 items above - the
impact of Lyme is overwhelming
Lack of acceptance of Lyme disease as a disease in the
"traditional"medical community forcing people to pay for treatment outside
of insurance
Lack of awareness among CT doctors of prevalence of
tick-borne co-infections (Babesia, Ehrlichia, Bartonella, etc.)
Lack of creative and aggressive treatments as early as
possible
Lack of education regarding this disease in my state.
NO ONE really knows what Lyme is!
Lack of ethics and humility in the medical
profession.
Lack of knowledge in diagnosing Lyme Disease at the
Prestigious Clinics like Mayo & John Hopkins
Lack of public awareness of the seriousness of the
chronic form of this disease which can be likened to AIDS or Cancer
Lack of research done in other tick borne diseases,
such as Ehrlichiosis and Babesiosis
Lack of research on how to treat the disease.
Living a normal life inspite of this awful
debilitating disease but physically and mentally.
Loss of independence
lyme disease reporting will no longer be required by
doctors. this is outrageous.
Many are being diagnosed with Fibromialgia years after
Lyme and perhaps it's all Lyme
Medical profession's unwillingness to learn and
understand effective diagnosis and treatment of Lyme
Medical society make it seem that Lyme disease is no
big deal. Public isn't aware how bad this disease is.
More psychological and/or emotional: Not knowing what
the future holds in any sense of the word: treatment, additional health
problems, insurance coverage. I also feel that lack of education is a
reality. Many people have no idea how incapacitating this illness is. As a
result there seems to be various stigmas attached to having this disease.
My husband and I are both infected with multiple TBI's.
We found a treatment that works, but is not covered by insurance.
My machine does not work on the above, but basically
all of them.
no acceptable standard for diagnosi, inaccurate
reporting of cases of lyme disease, underinformed physicians
Non-epidemic areas have little knowledge of LD
not enough support am in maine they are very ignorant
to lyme and all aspects
On the whole, the Medical Community does not seem to
take Lyme disease seriously enough.
Pain management for people with Lyme and other
tick-borne illnesses
poor treatment of the infected by their doctors.
poor understanding of other tbi such as babesios,
erlichiosis, bartonella etc
pre judgement of teens with Lyme and the severity
nuerological, Gastro, crossing blood/brain barrier of lyme spirochettes and
the 100 different types of bacterial infection now occuring out of the New
England area caused by moving ticks. The importance of misdiagnosis
because of the myth that you will always feel a tick bite you= false#2.
that you will get a bulls eye rash if you have lyme= false #3. that you
can go anywhere to get a Lyme disease test? false 4. that the tick has to
be on you for a long time to get infected? false 5. that lyme disease is not
gastro affected ever? false 6 that you will be believed - no matter what
your age - that you can no longer function because of severe pain and need
someone to help because it's getting worse by the day? 7.please help the
communication and political attention for those that have Lyme disease and
are dying - it could be your daughter or son or mother you are doing this
for next. thank You for listening and E-mail me anytime if I can help.
Denise Dinsmore = miamilady[at]comcast.net
Preventing ticks from getting on children (and adults)
--DEET is dangerous and ticks are hard to see, especially and can be easily
missed when doing daily tick checks
Proper education and monitoring of doctors; ending
persecution of LLMDs.
Psychological aspects of being abandoned by physicians
when symptoms are severe and progressive. Medical schools are no longer
training physicians who can think but are producing technicians totally
dependent on objective testing and blinders to obvious clinical symptoms.
Recognition by medical community of long term chronic
infection and appropriate long term high dose antibiotics. Also, lack of
continued research my microbiologists into a cure. Otherwise, all items
listed above of high concern.
Research monies from NIH and Universities goes to the
"good-old-boy" network, research by others doesn't get published.
see www.climbforlyme.com!!!!
suppression of supportive research, harassment of Lyme
octors, refusal of Managed Care to pay for treatment, downplaying of
seriousness by media
The deer population is increasing dramatically. It
must be controlled.
The doctors in the South say there is no lyme disease
in these states.
The enormous, essential importance of immediate
diagnosis!!-NOT early diagnosis, what's that anyway? Upon infection every
hour is a ticking time bomb.
the lack of information/experience in doctors about
the presentation and diagnosis of CNS tick-borne diseases as well as the
treatment of these difficult and often chronic, disabling diseases.
The question of what is and is not a positive result
for Lyme Disease.
The use of inaccurate lab tests as a legal way doctors
and insurance companies use to refuse treatment
1/30/2004+ ON-GOING SURVEY:
Please take the
Lyme Disease/OTBIs Surveyfor all interested! It
only takes a few minutes and your response can influence legislative measures in
Connecticut and the USA!
Many thanks to all participants to date! Copy
and mail the blank survey to your friends...
'04 Survey Results
