Leave a comment

Patient Resources

As with most of this site, this page will take some time to evolve, so please check back for more resources over time.

I’m opening with a few key starter resources, for those in need of fast information and answers—these are sites that are reputable, safe, and thorough and that cover all the bases for pretty much any aspect of Lyme you need help with, and/or offer support and answers through forums with knowledgeable participants.

*Note: Lyme Literate Doctors

Lyme experienced doctors can face harsh consequences for treating lyme, so names and information of such doctors are typically not shared on line.  If you are looking for a Lyme Literate Doctor (key term to know–LLMD or LLND if a naturopath) go to MD Junction’s Lyme Support group and find their doctor referral thread.  If you have any trouble with the site or obtaining a referral, I can help you contact the current moderator for database referrals directly.  She is prompt, thorough, and knowledgeable.

Essential Resources:

The links below are also listed in the long list(s) of resources on the ‘old’ blog, at http://invisiblylymemontana.blogspot.com/p/lyme-resources.html.

Lymedisease.org

  • Multiple well written, informative blogs on critical current issues
  • Background information on Lyme, diagnosis, treatment, awareness, current events
  • Lyme research information (efforts, funding, results, reports)
  • They also have Lymedisease.org facebook page

Lyme Disease Association, Inc. (LDA)

MD Junction Lyme Disease Support Group

  • Lyme 101/Welcome Letter
    • This page doesn’t seem to have as many links as I remember
  • LLMD Referrals
    • The new moderator for this section will get back to you quickly—you may even get responses from more than one person, but the current care taker of the database is who you will want to check your answers with

Under Our Skin

Words really can’t do any justice to or remotely, properly convey the depth of your need to watch this film.

 

Cautions regarding medical institution and agency posted information:

***Look to multiple sources for information on symptoms, testing, timelines, geographic distribution, and vectors for contracting Lyme.  I’ve routinely seen all of the above mis-stated on otherwise reputable medical sites.

It takes a fair amount of digging and reading to achieve a truly informed opinion regarding Lyme disease diagnosis guidelines, treatment guidelines, distribution controversies, and general politics.  The degree of institutionalized misinformation is overwhelming, and really hard to imagine until you are facing Lyme head on.

My first viewing of Under Our Skin left me feeling like what I was hearing made a lot of sense, but sounded rather conspiratorial.  But it was not that hard to trace and confirm what they were saying.  Reading Montana’s guidelines was shocking, as it contained the text that keeps so many of us sick (though could sound reasonable if you didn’t know better).

Medical institutions provide valuable information, but for me, the trouble lies in the very specific statements that are made without noting any level of uncertainty or controversy, other than to summarily dismiss it without evidence or discussion.

 Priority Topics/Resources

These are critical areas for early on in treatment and diagnosis, but also to revisit over the course of your treatment and recovery.  Pending links and resources that will eventually be added here, these can serve as useful search terms in general and in forums.  There is a lot of information to piece together, and sifting through forums is an excellent way to familiarize yourself with issues you’d otherwise have no idea existed.  Or treatments you’ve gone years without knowing about (happens to all of us on a regular basis).

  • Coinfections

  • Parasites

  • Herbal Treatment Protocols

  • Antibiotic or Combination Protocols

  • Herxing: Herxheimer Reactions

  • Detoxing Strategies

  • Symptoms

  • Gut Health

  • Diagnosis

  • Self Advocacy

  • Treatment & Financial Reources

  • Support Groups

  • Patient Advocacy Campaigns

  • Evidence Based Health Care Resources

Please share any ideas for items on this list or additions to this list and any applicable resources.

 Please Share Your Favorites

And even your least favorites.  I was mislead by articles early on in my illness by doctors who I now know were extremely biased and completely ignored current research in their writings.  It is unconscionable and scary.

So, sites that helped you, sites to be wary of….please share away and I will incorporate them in an applicable location, or create one.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: