Welcome to my blog! This is a place of information and hope for fellow Canadians who are suffering from Lyme disease. I want to share with you the knowledge I have gained during my fight with this debilitating, frightening, and misunderstood illness. I hope you will be blessed.

Monday, August 13, 2012

Managing Your Health Care

When you begin treatment for Lyme disease, you need to be an active participant.  You need to find a system to keep yourself and your information organized.  This may be very difficult to do, given the way that you feel and the mental fog that you have.  Perhaps you can find someone to help you with this.  It's very important.

When I became ill, and before I knew what was wrong with me, I had a small coil notebook that I wrote everything down in - phone calls I'd made, things I had found on the internet, doctors I had contacted, symptoms I had, etc.  I kept my loose papers in a file folder, things such as test results.  However, over time, I outgrew this method!  I had too many things to file, and I really needed a better system.

So off to Staples I went, and I bought a big binder and some dividers.


My dividers have the following headings, but you can tailor yours however you like:  History, Lab Work, Doctors' Reports, My Blog, Managing Lyme Disease, Dr. L., Miscellaneous.


The binder has filled up!  I may soon need a bigger one. 

Before you visit your LLMD for the first time, it will be very important for you to have all of your previous doctors' reports, test results, etc. available for him/her.  It is also recommended that you write out a history of your illness:  when did your symptoms start, what symptoms do you have, what doctors have you seen and when, etc.  Write it out like you were just telling the story to someone, then afterwards, you (or someone else) can summarize it in point form.

During your treatment, it will be very important for you to keep track of your symptoms, so that you can see the progress you are making, and so you can give your LLMD an accurate report when you see him/her each time.  It also helps you to figure out if you might be having any herxheimer reactions

Some people use a symptoms checklist, which is a great idea.  You can write out all of your symptoms in chart form, and rate them daily or weekly on a scale of 1 to 10.  You can find sample checklists by doing an internet search or checking out other Lyme blogs.

I chose to make jot notes on a calendar.  That was a better system for me.


Before my appointments with my LLMD, he asks me to write a paragraph about how I was feeling the past 6 weeks.  I can then just look back at my calendar and summarize what I had jotted down.  He also has me fill out a symptom checklist at his office each time.

Look at last month's jot notes:


That's right!  There are NONE!  That's because I'm feeling quite good.  I really don't have much to write about, except for tiredness and a few minor sporadic symptoms. 

I hope this information will be a help to you in learning to manage your health care. 

No comments:

Post a Comment