Friday, April 29, 2011

4 Top 10 Tips For Doing Your Own Lyme Disease Research

Here are my top 10 tips to share for doing your own Lyme disease research. Pretty simple and straightforward - and if you have any to add, please share in comments below.

1) Use the scientific, Latin terms for everything. You can use common terms, too, but Latin will give you more results and more specific results.


Instead of "Lyme disease" use "Borreliosis".
Instead of "Neuro Lyme" use "neuroborreliosis".
Instead of "Lyme bacteria" or "infection" use "Borrelia burgdorferi".

2) Find out which terms microbiologists and scientific researchers use in their own papers and classes and then apply them to your search.


Instead of "coinfection" use "polymicrobialism" or "polymicrobial".
Instead of "can't think straight" use "cognitive symptoms".
Instead of "spinal tap" use "lumbar puncture".
Instead of "shooting and burning pains" use "paresthesia".
Etc. - you get the idea.

Look at online and offline medical dictionaries for words that describe your symptoms and plug those into a search engine.

3)  Move your search away from general Google search to Google Scholar. You can get specific results for only scientific papers and patents that way.

4) Whenever you don't understand a term, use Wikipedia for an explanation.

I add a note of caution here: Wikipedia is not always right, though it usually is correct on basic science definitions.

If you aren't sure, double-check by doing a more general search and rely on college and university web sites for definitions. You may want to restrict your domain search to .edu web sites.

5)  Read educational institution web sites in general.

You may be surprised to find out what research is being done now on Lyme disease and coinfections which hasn't been published yet. Bookmark these items and check PubMed for the university name and researcher(s) name(s) periodically, as a paper will eventually be published.

6) Passively collect research information on your own web site or inbox by using RSS feeds.

If you look at the right column of this page and scroll down, you will see a number of Lyme disease and other disease-related and alternative medicine articles that are directly getting posted to this site all the time.

You can do the same with your own web site - or if you don't have a web site - by using an RSS reader or by subscribing to an RSS feed that gets sent to your email address.

This way, research comes to you and you don't have to always go do a search for it.

7) Look at major professional organizations' web sites - even if you may not agree with everything said - at least you will know what's going on.

Read the IDSA's web site periodically and be aware of how they view the issues around Lyme disease and infectious diseases in general. See what the NIH, CDC, and organizations have to say, and even more, dig deeper and look at what people from those organizations say in their research on PubMed and other online publication hubs. Some of what you find may surprise you.

8) Look at major online science web sites geared towards  a more general audience  (not specifically written for professionals) periodically.

Science Daily is a good example of this, and if you look at the bottom of each article, you will often see a link to the original paper or source on which they based their article. Check out the original source for more information - often it leads to finding out about other research the same researchers did on Lyme disease and coinfections.

Also, use the search function in Science Daily to look up terms such as "Lyme disease", "Borrelia", "Babesia" and even "Malaria". You may find interesting articles and older research from their archives this way.

9) Buy microbiology, acarology, and entomology text books for cheap and used at college bookstores which are trying to get rid of all old textbooks, "fire sales",, and independent used bookstores near you.

While these textbooks can be dated, you might find information in them that could be useful and give you ideas of where to search next. Note that a lot of the basic information on Lyme Borrelia hasn't changed - but there has been a more refined and detailed understanding of what Borrelia is about over time, though, and those details need to be picked up by reading more recently published papers and books. (I say this, stating that a lot of Lyme disease research I see being cited online for and by patients is a bit outdated - we need to update these sites to reflect the state of the science.)

(You can also see if any friends or relatives have some lying around they're willing to lend or give to you.)

10) Search various libraries online, and participate in your local interlibrary loan program.

Can't afford that $500. book on microbiology? See if you can borrow it through your library's interlibrary loan program.

You will usually have a shorter time limit on borrowing books that are in high demand - some books have to be returned in a week. So if you need more time to work on it, ask someone to copy select passages for you from it to make notes on them later after you return the book.

Also, in many areas you can sign up for a program that will allow others to pick up books for you at the library on your behalf if you are housebound and too ill to go out - see if your area has one and sign up if you need it. This is good program to use in general for any material you may want to borrow for your own personal use.

And a bonus, Number 11:

Have a family member, friend, or friend of a friend who is already studying clinical microbiology, molecular biology, and/or genetics (immunology is helpful, too) help you decipher what you don't understand - and to tell you whether or not they think the findings are significant and which questions are not answered by a particular study that would be useful to have answered.

This may be a tricker bit, because not everyone is going to either have the time to respond to your request for help on this or hold the belief that your research is not worth the effort because they may believe that Lyme disease cannot persist and you are wasting your time.

Unfortunately, this is the truth of it - but in the true spirit of scientific inquiry and basically being stubborn, some people may be willing to help you at least a little bit.

My advice here is the less well-known the person is to you, the better it is to keep personal details out of the query. Also, keep your email or discussion brief, polite, and to the point while avoiding discussing the controversy. This is not to invalidate or dismiss your experience - but being said out of practicality and diplomacy: Busy people are more likely to respond to something in an unbiased fashion if you keep it simple and short.

Happy researching!


  1. One tip for how NOT to do Lyme research on your own:

    1. Do not rely on a 'media piece' for your information. The journalist/writer of that piece is often under a time schedule to produce something. Sometimes that's defined as 'almost anything' that the owners of that media piece can't be sued over.

    1. Avoid reading PSA's (public service announcements) put out by entities that have their own agenda or drum to beat.

    1. PR pieces are the same as # 1 above. Read with great caution.

    1. Avoid using Forward Looking Statements. FLS's are sometimes 'wishful thinking'.

    1. White Papers might have some use but they can be disguised PR pieces, although not always. Each one should be examined carefully in order to determine if it used for Business Benefits, Technical, Hybrid or Policy. Wiki has a short explanation.

    1. Read everything posted in a "support' form with a grain (or more) of salt. A well run forum will ask the members to produce the original study or 'proof' of a blanket statement like "Salt and C will cure you of Lyme disease".

    There's more-----

  2. Thanks, cave76, for your list of what not to do. Very good points.

    A few remarks:

    "1. Do not rely on a 'media piece' for your information. The journalist/writer of that piece is often under a time schedule to produce something. Sometimes that's defined as 'almost anything' that the owners of that media piece can't be sued over."

    I mentioned Science Daily as a better place to read about science in the media, but I also point out that one should refer to the original research publication on which the article is based. That way you can check to see if what the media said reflected the actual research or if it missed the mark.

    "1. Avoid reading PSA's (public service announcements) put out by entities that have their own agenda or drum to beat."

    This is in a gray area for me. I think that some research announcements need to be paid attention to - but it's wise to take them with a grain of salt until more research has been completed to confirm a notable result. The recent battle over the significance of XMRV is one such example. The initial study was notable, but I had to keep following the story to see if it was too good to be true or inconclusive.

    1. Avoid using Forward Looking Statements. FLS's are sometimes 'wishful thinking'.

    Always a problem with a lot of research pushed to Science Daily and other science media aggregators. Science research media may state "we will see this technology in use in 'N' number of years" when in actuality it may be many more years before it is ready for commercial or public use - or it may never be practically applicable for a number of reasons which have yet to be seen.

    I share this research anyway, because a certain percentage of it will be available and applicable to treating conditions that affect many people - and possibly help Lyme disease patients too.

    "1. Read everything posted in a "support' form with a grain (or more) of salt. A well run forum will ask the members to produce the original study or 'proof' of a blanket statement like "Salt and C will cure you of Lyme disease"."

    I agree and would like to see more people provide studies to support their statements, too.

    For every statement I've seen about someone saying they've "herxed a lot" on something, I've also seen someone find out they had to stop because the treatment was making them too sick.

    How does someone know it's a herx versus a side effect of the treatment? Even LLMDs have said it's difficult to tell. But I think that there are ways to tell the difference, and it becomes clearer once you stop a particular treatment - it can be clearer earlier, in terms of symptom profile, known and documented side effects of the treatment, and duration of the experienced "herx" .

    I also don't like cure statements because there has been no evidence a cure has occurred. One can state improvements - cure is another matter.

  3. Oh, and you said there was more?

    There is: Research the researchers.

    See if they have conflicts of interest. See how open they are about stating them if they have any. See if you can find interviews with them online or general articles about them if they are higher profile and what their attitude is about their work.

    And if you're really lucky, if you know anyone they work with or have worked with in the past, you may find out how scrupulous and honest they are as researchers - even if personality-wise they are as harsh as Dr. House.

    Willy Burgdorfer has been pretty outspoken in interviews even if some people wished he wouldn't have spoken to "Under Our Skin" on camera. Dr. David Volkman has written some pretty pointed comments towards specific members of the IDSA. There are others - you just have to know where to look. The LDF's list of scientific advisors is a good place to start.

    At any rate, personal comments are only a small part of the whole. Professional track record and the integrity of one's research counts a lot.

  4. Another tip:

    Do some comparative research.

    Look at:

    1) What a researcher said in the past about a specific finding and what they say now. Compare and see if the answer was consistent, and if it changed, note when their position on that finding changed.

    2) Find research on the same topic over the years and see if there was a shift across the board.


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