Happy Monday everyone!
Here are the questions from last nights Lyme Chat, along with my responses & others I’ve collected from fellow Lymies!
Q1: Where do you go/what do you do to find information about Lyme & ticks- ex. the internet, library, ask a friend?
- As many people say, “Google it!”- Google is the first place I go to, to find information. When I was 12 and first diagnosed with Lyme disease, there was no internet, Facebook, Twitter, etc! I was too young to understand to even think about looking for research!
- Other search engines/internet
- Social media- Twitter
- Your Lyme Literate Medical Doctor
Q2: What obstacles do you run into when you are searching for information about Lyme & tick-borne diseases?
- Not enough research is conducted on Lyme disease and other tick-borne diseases
- Most information about Lyme is based on the CDC’s guidelines- also leading to biased views
- Information is outdated
- Lyme Literate Medical Doctors are hard to find
- Some LLMD take hours to drive to
Q3: Where did you go for info (or who did you expect to get info from) but was not helpful?
- I expected to get information from my general practitioner and all the specialists I had seen for the various symptoms I was experiencing- they never thought it was possible I was experiencing symptoms years later after being infected & treated with antibiotics
- “Highly recommended” infectious disease doctors from hospitals such as Cornell or George Washington University
- Many doctors continue to tell patients it’s not Lyme disease and/or that they are crazy & need to see a psychiatrist
Q4: Where/who have you received information on Lyme disease from, that was least expected?
- Online communities
- Social media: Twitter, Facebook
- Other Lymies, word of mouth
- After I was told by many, many doctors I was crazy, I believed them- I took their advice and started seeing a psychiatrist- it was that doctor who would tell me that I wasn’t crazy and was suffering from neurological affects of Lyme disease! Ironic!
Q5: How can you tell what information is reliable versus info that is inaccurate?
Referring to websites:
- Spelling/grammatical errors
- Fonts: if they are difficult to read; are in crazy colors; are in lots of different sizes
- “Readability” of the website
- The overlook of the website- if it’s outdated; the “readability” of the information; if it’s difficult to navigate, even if it’s a “reliable” source, many people will not refer to that source
- Websites with hyperlinks to other sites
- If websites/people are claiming they have some sort of miraculous cure!
Referring to websites & other sources
- When was it published/last updated?- if it’s out of date, not reliable
- If the source states statistics or refers to other studies, do they say where their information is from? If they do not cite their sources, there’s a good chance it is not reliable
- If sources are cited- research them! Those sources may or may not be accurate/trustworthy!
Q6: Do you find research articles helpful with information? Why or why not?
- Sometimes they are helpful, but there isn’t much research on Lyme disease & other tick-borne diseases- so the studies are very limited.
- They are also hard to understand; I went to college, majoring in Public Health, and took courses that solely focused on how to analyze them, and a lot of this stuff is still way over my head.
- To find research articles, try using Google Scholar (try to find articles that offer the full text for free!)
- Remember to always check the footnotes of scholarly articles to see if the sources are reliable!
– Being I do have some knowledge about research articles however, I’ve put together some common terms that may help you understand articles/information you read:
Assessment- the “estimation of the relative magnitude, importance, or values of objectives observed” Baseline data- data collected prior to program implementation to serve as a comparison with data collected during the program, or more typically, with data collected at the completion of a program Blind study- an evaluation wherein participants do not know if they belong to the experimental group or control group Control group- as part of a summative evaluation or research study, a randomly selected group of individuals, similar to the experimental group that does not receive the treatment or program but is compared with the experimental group Dependent variable- an outcome variable or end result indicator in an evaluation or study Double blind study- an evaluation wherein neither participants nor those implementing the program know which group is experimental and which group is the control Evaluation- the “comparison of an object of interest against a standard of acceptability”-- may be formative (including process evaluation) or summative in nature Experimental group- as part of a summative evaluation or research study, a group of individuals that receives the treatment or program External validity- extent to which the program can be expected to produce similar effects in other populations Field study- the most strenuous form of pilot testing in which people from the priority population assess the process being tested in a setting that is just like or closely represents the setting in which the program will be implemented Fluidity- as related to program planning, a process that is sequential and logical in nature Focus group- an “exploratory process that is used for generating hypotheses, uncovering attitudes and opinions, and acquiring and testing new ideas” Independent variable- a variable that is manipulated, selected, or measured by the evaluator which causes or exerts some influence on the dependent variable Internal validity- degree to which change that was measured can be attributed to the program under investigation Qualitative data- information presented in narrative form used in evaluation to provide detailed summaries or descriptions of observations, interactions, or verbal accounts (e.g., data from focus groups, in-depth interviews) Quantitative data- information that can be expressed in numerical terms that can be compared on scales Reliability- “an empirical estimate of the extent to which an instrument produces the same result (measure or score), applied once or two or more times” Validity- whether an instrument correctly measures what it is intended to measure Variable- a construct, characteristic, or attribute that can be measured or observed Source: McKenzie, J.F., Neiger, B.L., Thackeray, R. (2009). “Planning, Implementing, & Evaluating, Health Promotion Programs: A Primer. 5th edition.
Q7: Many of us do not agree with IDSA guidelines; would you share them with someone who is just learning about Lyme? Why/why not?
– Most people would agree, it’s good for everyone to read the IDSA guidelines
- If people are spending the time to learn about Lyme disease, that’s a step in the right direction!
- They should read any and all information that is out there (and be able to decide for themselves which they agree with or do not agree with!)
- Hopefully people will see how the guidelines are outdated & unrealistic- leading to the guidelines being changed- and acknowledging the existence of Chronic Lyme
- Summary of ILADS Guidelines for Lyme Disease
- Summary of IDSA Guidelines for Lyme Disease
- Lyme Disease Guidelines Comparison
- The Clinical Assessment, Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis: Clinical Practice Guidelines by the Infectious Diseases Society of America
Some Lyme Literate Medical Doctors
*I personally have not seen these doctors but are names that people have suggested or they themselves have gone to see
- Dr. Charles Ray Jones (New Haven, Connecticut- Only sees children!)
- Dr. Joseph Jemsek (Washington D.C.)
- Dr. Richard Horowitz (Hyde Park, NY)
- Dr. Joseph Burrascano (Download Dr. Burrascano’s Symptom Checklist) (East Hampton, NY)
- Dr. Brain Fallon (Columbia University, New York City)
- Dr. Daniel Cameron (Mount Kisco, NY)
- Dr. Kenneth Singleton (Towson, MD)
- Dr. Samuel Shor (Reston, VA)
*Most LLMD do not accept insurance*
- ‘Simple yet effective ways to maximize your Google search’ >> “How to Google like a boss”
- “SLyme Disease” by Amy Tan
- “The Rise of the Tick” (Outside Magazine)
- “The Lyme Wars” (The New Yorker)
- I put together all articles that have been in the news recently about ticks, Lyme disease, etc. See “Lyme in the news”
- Check out these books about Lyme disease & chronic illnesses:
Thank you all so much for participating in the Lyme Chat yesterday, as well as all the others in the past!
Suggestions are always welcome! Share something you like about the Lyme Chat, don’t like, what you would change, a future topic, etc.!
I will be continuing to update this post as well as “Resources for Lymies- Part 1” so if you have any suggestions, please let me know!
**Note: I am not an expert; the information I post comes from my personal experiences as I continue my fight against Lyme, and feedback from others I receive who also are battling Lyme & co-infections; I have received my B.S. in Public Health; I am not paid by any companies/websites so the sources I write about are based on my opinion as well as others!**