shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi everyone,
Please take this quick survey, below. You can place the results on this thread, or PM them to me. I will compile the results after one week and let you know.
Your responses will be used to help educate information science students and others about how patients seek Internet healthcare information and share it with their healthcare providers. No names or usernames will be divulged in the results.
Survey on Patient Information Search and Care-Seeking Behavior
Please type an X after the answers that best describe your situation.
FOR EXAMPLE: Do you use a computer at home? a. Yes X b. No
Here are the questions:
1.) When you first became ill, where did you first go to seek quality information about your illness? (Please choose one answer)
a. Primary care practitioner b. Healthcare specialist c. Hospital d. Public library e. Health library f. Internet g. Friends, family, or other individuals h. Other (please describe) _____________
2.) In the course of finding out about your illness, where else have you gone to seek quality information? (Choose one or more answers)
a. Primary care practitioner b. Healthcare specialist c. Hospital d. Public library e. Health library f. Internet g. Friends, family, or other individuals h. Other (please describe) _____________
3.) Have you ever discussed what you learned on the Internet about your illness with a healthcare professional? (Choose one answer)
a. Yes, I have discussed what I learned on the Internet with a health professional
b. No, I did not discuss what I learned on the Internet with a health professional
c. I did not use the Internet
4.) Have you ever changed healthcare professionals based in part on a negative response to the Internet information about your illness you discussed? (Check one answer)
a. Yes, I have changed at least one healthcare professional in part because of a negative response to the Internet information we discussed
b. No, I have stayed with my healthcare professional(s) in spite of a negative response to the Internet information we discussed
c. No, I have only had positive responses from healthcare professionals to the Internet information we discussed
d. I have not discussed Internet information with my healthcare professional(s).
5.) Is there anything else you would like to share about seeking, finding, or discussing information you have found about your illness with a healthcare professional? (Please type your response below)
Thanks very much for your help!
Regards, Shazdancer
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
1.) When you first became ill, where did you first go to seek quality information about your illness? (Please choose one answer)
a. Primary care practitioner b. Healthcare specialist c. Hospital d. Public library e. Health library f. Internet X g. Friends, family, or other individuals h. Other (please describe) _____________
2.) In the course of finding out about your illness, where else have you gone to seek quality information? (Choose one or more answers)
a. Primary care practitioner X b. Healthcare specialist X c. Hospital d. Public library e. Health library f. Internet X g. Friends, family, or other individuals h. Other (please describe)
3.) Have you ever discussed what you learned on the Internet about your illness with a healthcare professional? (Choose one answer)
a. Yes, I have discussed what I learned on the Internet with a health professional X
b. No, I did not discuss what I learned on the Internet with a health professional
c. I did not use the Internet
4.) Have you ever changed healthcare professionals based in part on a negative response to the Internet information about your illness you discussed? (Check one answer)
a. Yes, I have changed at least one healthcare professional in part because of a negative response to the Internet information we discussed X
b. No, I have stayed with my healthcare professional(s) in spite of a negative response to the Internet information we discussed
c. No, I have only had positive responses from healthcare professionals to the Internet information we discussed
d. I have not discussed Internet information with my healthcare professional(s).
5.) Is there anything else you would like to share about seeking, finding, or discussing information you have found about your illness with a healthcare professional? (Please type your response below) None
Posts: 3528 | From US | Registered: Apr 2007
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My answers to survey questions. 1. A 2. B, C, F 3. A, with ramifications I might add. 4. A 5. The neurologist I saw was extremely rude when I mentioned all of my research on Lyme disease. Before then she was saying I had MS, it wasn't until I mentioned Lyme that she told me I had Lyme antibodies in my blood, indicating an earlier "exposure". I truly feel that if I had not researched and told her about it...she would not have mentioned the Lyme antibodies at all.
She went and got binders on 3 different MS meds, slam them down on the table next to me and said, "Research these and let me know which one you want to start your next visit." She did say she would order a lumbar puncture, with emphasis on the word puncture, like she was trying to frighten me. She then said even if there were antibodies in my spinal fluid she wanted me to start MS meds anyway and she might, only to make herself feel better, prescribe 30 days of antibiotics." I kid you not!
Needless to say, there wasn't a next visit. Her tone of voice and expression during this time was extremely offensive.
Amy
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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bettyg
Unregistered
posted
Here are the questions:
1a. Primary care practitioner XX
2a. Primary care practitioner XX b. Healthcare specialist MANY SPECS!! XX g. Friends, family, or other individuals XX
3a. Yes, I have discussed what I learned on the Internet with a health professional XX
PLUS HAVE GIVEN PCP MANY ARTICLES APPLYING TO LYME/OTHER ILLNESSES I HAVE! -------------------------------
4a. Yes, I have changed at least one healthcare professional in part because of a negative response to the Internet information we discussed xxx
5 ... additional info!
I was misdiagnosed for 34 yrs. by 40-50 drs/specialists. I believed each one of the diagnosis/label they gave me; after all, they went to med school and passed their exams; who was I to question them!
Deep in my heart, I knew other things were going on, and kept PURSUING dr. after dr. to find the needle in the haystack.
Finally when I was showing signs of early Alzheimer's disease, did I hear about and go to an unadvertised LYME meeting where the symptoms I heard about that night were ALL IDENTICAL TO MINE!
Heard also of Igenex's western blot igm/igg so had that test done; 1st one of the group of members there; POSITIVE FOR IGM/IGG!
PCP of 28 yrs. diagnosed me with chronic lyme; I was his 1st lyme patient in 30-36 years!
Before he retired 8-07, he told me I taught him 90% about lyme and me; other 10% he spent learning himself on INTERNET!
I lobbied for a LLMD to come to our local huge monopoly clinic covering 100 miles in every direction of my city. Well, they hired an IDSA infectious dr.
I "interviewed" him; nope, he would not do one thing to help me NOR use the lyme diagnostic labs I was referring him too. I'd told him I was hoping to send hundreds/thousand CHRONIC LYME patients to him; but NO, I WOULD NOT SEND ANYONE TO HIM since he did NOT believe in chronic lyme and treated under 30 days!
THE IDSA ATTITUDE STINKS; they are NOT HERE TO HELP US CHRONIC LYME PATIENTS; many are in it for the $$$ for grants, being on pharmacitical boards, and having their hands in other things that "they developed"/patiented !!! HOG WASH!
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Thanks, CD57, adamm, and Amy! Your responses and remarks will help educate the next generation of health librarians.
Bumping this up for the evening crowd,
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
And thank you, Betty G, I got you! Posts: 1558 | From the Berkshires | Registered: Jul 2001
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Thanks, Fin, I got you.
Thanks for the tip on WebMD and a possible other source for a similar survey. This topic actually came up suddenly in class discussion, and there wasn't really time to look for prior inventors of this wheel, though I wouldn't be surprised if they were out there.
Besides, it might feed in nicely with a topic I will be writing on concerning consumer health information in emerging diseases, so it is nice that I am getting only respondents in the Lyme field. I may give the survey to the other students, as well, as a comparison group.
I appreciate your comments about knowing the authority of the information you bring to a healthcare professional. It might also help to see if the conclusions of a study flow logically from the data. I would also try and check to see if data has been verified from many different sources, or does the information all spring from one group of people or one small study.
When the facts of a disease are still unfolding, I think information professionals (such as librarians) should approach the subject a little differently than they do for other health topics. Bias plays a stronger role than it does in known diseases. Government sources, which update slowly and conservatively, should not necessarily be the gold standard. And so on.
I'll let you know how the survey turns out. And thanks for the kind words.
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
1.) When you first became ill, where did you first go to seek quality information about your illness? (Please choose one answer)
a. Primary care practitioner X
2.) In the course of finding out about your illness, where else have you gone to seek quality information? (Choose one or more answers)
a. Primary care practitioner X b. Healthcare specialist X f. Internet X
3.) Have you ever discussed what you learned on the Internet about your illness with a healthcare professional? (Choose one answer)
a. Yes, I have discussed what I learned on the Internet with a health professional X
4.) Have you ever changed healthcare professionals based in part on a negative response to the Internet information about your illness you discussed? (Check one answer)
a. Yes, I have changed at least one healthcare professional in part because of a negative response to the Internet information we discussed X
5.) Is there anything else you would like to share about seeking, finding, or discussing information you have found about your illness with a healthcare professional? (Please type your response below)
Yes!!! The healthcare pros need to REALLY LISTEN to the PATIENTS. They need to STOP telling us NOT to beleive all we read on the net, in hard copy books, and legit medical websites.
They need to keep up with new illnesses and treatments and not go by thier outdated materials!They need to be more open minded.To stop learning, causes stagnation.
They need to STOP blaming everything on depression, esp where women are concerned.
Good Luck with the survey
-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
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posted
QUESTIONS ARE ANSWERED AS A PARENT OF A SUFFERER AND PRIMARY CARE GIVER, NOT THE PATIENT THEMSELVES.
1.) When you first became ill, where did you first go to seek quality information about your illness? (Please choose one answer)
a. Primary care practitioner X b. Healthcare specialist c. Hospital d. Public library e. Health library f. Internet g. Friends, family, or other individuals h. Other (please describe) _____________
2.) In the course of finding out about your illness, where else have you gone to seek quality information? (Choose one or more answers)
a. Primary care practitioner X b. Healthcare specialist X c. Hospital X d. Public library X e. Health library f. Internet X g. Friends, family, or other individuals X h. Other (please describe) NUEROLOGIST (4) EYE EAR NOSE AND THROAT (2) ALLERGIST (3) RHUMATOLOGIST (2) HEADACHE SPECIALIST / CLINIC (4) PAIN CLINIC (2) MAYO CLINIC
3.) Have you ever discussed what you learned on the Internet about your illness with a healthcare professional? (Choose one answer)
a. Yes, I have discussed what I learned on the Internet with a health professional X
b. No, I did not discuss what I learned on the Internet with a health professional
c. I did not use the Internet
4.) Have you ever changed healthcare professionals based in part on a negative response to the Internet information about your illness you discussed? (Check one answer)
a. Yes, I have changed at least one healthcare professional in part because of a negative response to the Internet information we discussed
b. No, I have stayed with my healthcare professional(s) in spite of a negative response to the Internet information we discussed X
c. No, I have only had positive responses from healthcare professionals to the Internet information we discussed
d. I have not discussed Internet information with my healthcare professional(s).
5.) Is there anything else you would like to share about seeking, finding, or discussing information you have found about your illness with a healthcare professional? (Please type your response below)
THIS IS THE FIRST TIME I HAVE DISCUSSED LYME / INTENER INFO. WOULD CHANGE DOC IF I HAD ANY CHOICE REGARDING INSURANCE.
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Thank you, Dakota's Mom and Nicole's Mom. I gotcha!
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I now have over a dozen completed surveys, but would like about a dozen more! Up for the Sunday night gang. Please help educate the next generation of health librarians.
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hey Shaz!!
1.) When you first became ill, where did you first go to seek quality information about your illness? (Please choose one answer)
a. Primary care practitioner X b. Healthcare specialist c. Hospital d. Public library e. Health library f. Internet g. Friends, family, or other individuals h. Other (please describe) _____________
2.) In the course of finding out about your illness, where else have you gone to seek quality information? (Choose one or more answers)
a. Primary care practitioner b. Healthcare specialist c. Hospital d. Public library e. Health library f. Internet X g. Friends, family, or other individuals h. Other (please describe) _____________
3.) Have you ever discussed what you learned on the Internet about your illness with a healthcare professional? (Choose one answer)
a. Yes, I have discussed what I learned on the Internet with a health professional X
b. No, I did not discuss what I learned on the Internet with a health professional
c. I did not use the Internet
4.) Have you ever changed healthcare professionals based in part on a negative response to the Internet information about your illness you discussed? (Check one answer)
a. Yes, I have changed at least one healthcare professional in part because of a negative response to the Internet information we discussed X
b. No, I have stayed with my healthcare professional(s) in spite of a negative response to the Internet information we discussed
c. No, I have only had positive responses from healthcare professionals to the Internet information we discussed
d. I have not discussed Internet information with my healthcare professional(s).
5.) Is there anything else you would like to share about seeking, finding, or discussing information you have found about your illness with a healthcare professional? (Please type your response below)
Thank Goodness for the internet and places like Lymenet, PubMed, California Lyme, etc. I would still be treating for "MS" despite recalled bite and rash and CDC positive western blot (but OH MY, my ELISA was -- gasp -- NEGATIVE!! So I couldn't have it!! Thanks, CDC!)
Doctors scorn a lyme diagnosis automatically, and have mostly never even heard of coinfections. There is so much to be learned, but rarely are they interested in learning anything beyond what they're spoonfed by the IDSA.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
1.) When you first became ill, where did you first go to seek quality information about your illness? (Please choose one answer)
a. Primary care practitioner X b. Healthcare specialist c. Hospital d. Public library e. Health library f. Internet g. Friends, family, or other individuals h. Other (please describe) _____________
2.) In the course of finding out about your illness, where else have you gone to seek quality information? (Choose one or more answers)
a. Primary care practitioner X b. Healthcare specialist X c. Hospital d. Public library e. Health library f. Internet X g. Friends, family, or other individuals X h. Other (please describe) _____________
3.) Have you ever discussed what you learned on the Internet about your illness with a healthcare professional? (Choose one answer)
a. Yes, I have discussed what I learned on the Internet with a health professional X
b. No, I did not discuss what I learned on the Internet with a health professional X
c. I did not use the Internet
It has depended on the practitioner. Even when I haven't discussed what I've learned with that particular Dr, it still plays a part in my decision-making process as to treatment.
4.) Have you ever changed healthcare professionals based in part on a negative response to the Internet information about your illness you discussed? (Check one answer)
a. Yes, I have changed at least one healthcare professional in part because of a negative response to the Internet information we discussed
b. No, I have stayed with my healthcare professional(s) in spite of a negative response to the Internet information we discussed X
c. No, I have only had positive responses from healthcare professionals to the Internet information we discussed X
d. I have not discussed Internet information with my healthcare professional(s).
Once again, it depends on the practitioner. I have no problem discussing what I've learned with the Holistic MD, but don't bring it up anymore with the ENT or GI. Its just not worth the bother, especially after being asked "you've been reading again, haven't you?" along with a raised eyebrow and a frown.
5.) Is there anything else you would like to share about seeking, finding, or discussing information you have found about your illness with a healthcare professional? (Please type your response below)
I'm so thankful for the message boards I've found on the internet. Not only for the support and companionship.
I don't tend take what I read on boards as gospel, but rather see them as a valuable resource for doing my own research. I think of it as a trail of breadcrumbs, per se.
Its only been through the reading and researching that I've finally found out what's been going on health-wise. My drs haven't been a whole lot of help and I've had to, more or less, lead them by the nose through various testing.
If it weren't for the boards, clinical studies, etc., I'd probably be sitting here, more than a year after my body really started falling apart, wondering why I still felt so lousy.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Thank you, Michelle and Curiouser! I have added your responses and comments in.
Curiouser, I understand we do different things with different doctors, according to how much we can (or have to) work with that person. For the purpose of this survey, I would read it as "have you ever discussed what you learned with your doc" and "have you ever fired a doc because he wasn't listening." Your comments made it clear what you meant.
I hope everyone is clear on that. Because if the answers don't follow the directions, I may not be able to use those responses.
Please keep 'em coming, either by replying here or by PM. I am looking for about a half-dozen more. And the results so far are interesting!
Thanks, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
1.) When you first became ill, where did you first go to seek quality information about your illness? (Please choose one answer)
a. Primary care practitioner XX When I told her I was having numbness/tingling she immediately did an EKG, then sent me to PT.
b. Healthcare specialist c. Hospital d. Public library e. Health library f. Internet g. Friends, family, or other individuals h. Other (please describe) ____________
2.) In the course of finding out about your illness, where else have you gone to seek quality information? (Choose one or more answers)
a. Primary care practitioner b. Healthcare specialist c. Hospital d. Public library e. Health library f. Internet XX g. Friends, family, or other individuals XX h. Other (please describe) _____________
I am a little confused by this question. Did I seek out other professionals? Yes, did they help? No. I have been seen by 3 different neurologists, a rheumatologist, headache specialist, dermatologist. I currently have regular chiro and PT, which do help. My chiro was instrumental in helping me to change some bad dietary habits.
3.) Have you ever discussed what you learned on the Internet about your illness with a healthcare professional? (Choose one answer)
a. Yes, I have discussed what I learned on the Internet with a health professional XX
b. No, I did not discuss what I learned on the Internet with a health professional
c. I did not use the Internet
4.) Have you ever changed healthcare professionals based in part on a negative response to the Internet information about your illness you discussed? (Check one answer)
a. Yes, I have changed at least one healthcare professional in part because of a negative response to the Internet information we discussed
b. No, I have stayed with my healthcare professional(s) in spite of a negative response to the Internet information we discussed XX
c. No, I have only had positive responses from healthcare professionals to the Internet information we discussed
d. I have not discussed Internet information with my healthcare professional(s).
5.) Is there anything else you would like to share about seeking, finding, or discussing information you have found about your illness with a healthcare professional? (Please type your response below)
The reason that I have stayed with my LLMD is because I really don't have another option. Although I don't agree with all he does, he is making me better.
I have to say that this website has been most helpful to me on obtaining information.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
Do you use a computer at home? a. Yes X b. No
Here are the questions:
1.) When you first became ill, where did you first go to seek quality information about your illness? (Please choose one answer)
a. Primary care practitioner
2.) In the course of finding out about your illness, where else have you gone to seek quality information? (Choose one or more answers)
a. Primary care practitioner b. Healthcare specialist- ID, Rhumy, Neurologist, and finally LLMD f. Internet- info sites and chat/discussion sites
g. Friends, family, or other individuals
3.) Have you ever discussed what you learned on the Internet about your illness with a healthcare professional?
a. Yes, I have discussed what I learned on the Internet with a health professional
4.) Have you ever changed healthcare professionals based in part on a negative response to the Internet information about your illness you discussed?
a. Yes, I have changed at least one healthcare professional in part because of a negative response to the Internet information we discussed
5.) Is there anything else you would like to share about seeking, finding, or discussing information you have found about your illness with a health care professional? (Please type your response below)
It takes patience and tact along with a developed relationship w/your health provider to make a difference. If you are new to them- they won't listen.. Posts: 3 | From Iowa | Registered: Dec 2007
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Thanks so much, hurting gramma and iceball! It is interesting to hear from newer participants on the board as well as the oldies!
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Prepared on behalf of my daughter. It was her illness that caused me to do research.
1.) When you first became ill, where did you first go to seek quality information about your illness? (Please choose one answer)
a. Primary care practitioner-X b. Healthcare specialist c. Hospital d. Public library e. Health library f. Internet g. Friends, family, or other individuals h. Other (please describe) _____________
2.) In the course of finding out about your illness, where else have you gone to seek quality information? (Choose one or more answers)
a. Primary care practitioner b. Healthcare specialist-LLMD c. Hospital d. Public library e. Health library f. Internet--X g. Friends, family, or other individuals h. Other (please describe)--Support Groups
3.) Have you ever discussed what you learned on the Internet about your illness with a healthcare professional? (Choose one answer)
a. Yes, I have discussed what I learned on the Internet with a health professional--X
b. No, I did not discuss what I learned on the Internet with a health professional
c. I did not use the Internet
4.) Have you ever changed healthcare professionals based in part on a negative response to the Internet information about your illness you discussed? (Check one answer)
a. Yes, I have changed at least one healthcare professional in part because of a negative response to the Internet information we discussed--X
b. No, I have stayed with my healthcare professional(s) in spite of a negative response to the Internet information we discussed
c. No, I have only had positive responses from healthcare professionals to the Internet information we discussed
d. I have not discussed Internet information with my healthcare professional(s).
5.) Is there anything else you would like to share about seeking, finding, or discussing information you have found about your illness with a healthcare professional? (Please type your response below)
We went through ten healthcare professionals before being diagnosed with Bartonella and Babesia. After diagnosis, there have only been two healthcare professionals that agree Lyme is a longterm illness that can cause disabling symptoms and must have longterm treatment. We are very careful about who we share this information with.
Posts: 2903 | From AZ | Registered: Feb 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Many thanks, kelmo. I hope your daughter appreciates how tough it has been to fight for her. I know I do. But how could we do any less?
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Bumping because I need just a half-dozen more to make 30 responses...
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
Survey on Patient Information Search and Care-Seeking Behavior
1.) When you first became ill, where did you first go to seek quality information about your illness? (Please choose one answer)
a. Primary care practitioner b. Healthcare specialist c. Hospital d. Public library e. Health library f. Internet X g. Friends, family, or other individuals h. Other (please describe) _____________
2.) In the course of finding out about your illness, where else have you gone to seek quality information? (Choose one or more answers)
a. Primary care practitioner X b. Healthcare specialist X c. Hospital d. Public library X e. Health library f. Internet g. Friends, family, or other individuals X h. Other (please describe) _____________
3.) Have you ever discussed what you learned on the Internet about your illness with a healthcare professional? (Choose one answer)
a. Yes, I have discussed what I learned on the Internet with a health professional X
b. No, I did not discuss what I learned on the Internet with a health professional
c. I did not use the Internet
4.) Have you ever changed healthcare professionals based in part on a negative response to the Internet information about your illness you discussed? (Check one answer)
a. Yes, I have changed at least one healthcare professional in part because of a negative response to the Internet information we discussed
b. No, I have stayed with my healthcare professional(s) in spite of a negative response to the Internet information we discussed X
c. No, I have only had positive responses from healthcare professionals to the Internet information we discussed
d. I have not discussed Internet information with my healthcare professional(s).
5.) Is there anything else you would like to share about seeking, finding, or discussing information you have found about your illness with a healthcare professional? (Please type your response below)
Without the internet I would have had to take my GP's word that there was "no such thing as a Lyme Specialist".
Posts: 8 | From CT | Registered: Sep 2006
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posted
1.) When you first became ill, where did you first go to seek quality information about your illness? (Please choose one answer)
a. Primary care practitioner X b. Healthcare specialist c. Hospital d. Public library e. Health library f. Internet g. Friends, family, or other individuals h. Other (please describe) _____________
2.) In the course of finding out about your illness, where else have you gone to seek quality information? (Choose one or more answers)
a. Primary care practitioner b. Healthcare specialist X c. Hospital d. Public library e. Health library f. Internet X g. Friends, family, or other individuals h. Other (please describe) _____________
3.) Have you ever discussed what you learned on the Internet about your illness with a healthcare professional? (Choose one answer)
a. Yes, I have discussed what I learned on the Internet with a health professional X
b. No, I did not discuss what I learned on the Internet with a health professional
c. I did not use the Internet
4.) Have you ever changed healthcare professionals based in part on a negative response to the Internet information about your illness you discussed? (Check one answer)
a. Yes, I have changed at least one healthcare professional in part because of a negative response to the Internet information we discussed
b. No, I have stayed with my healthcare professional(s) in spite of a negative response to the Internet information we discussed
c. No, I have only had positive responses from healthcare professionals to the Internet information we discussed X
d. I have not discussed Internet information with my healthcare professional(s).
5.) Is there anything else you would like to share about seeking, finding, or discussing information you have found about your illness with a healthcare professional? (Please type your response below)
After about 2.5-3 yrs sick I found Lyme on the internet.
I shared what I had found about lyme with my neurologist with a coverletter and supporting documents. After reviewing the info she sent me to a doc who knew something about lyme and only saw me twice more.
I was then left to the care of my LLMD with my neurologists blessings. I was fortunate.
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Thanks so much, Hissyfits and BJK!
Hissy, it is so sad that this kind of thing happens in CT, but it does.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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