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. 

Welcome to My Pharmacy

Prior to contracting Lyme disease, I used to take a multivitamin and a vitamin C each day, if I remembered to!  Here is what I take today.

                                                                                                                                                                 

I know, I know.......this looks CRAZY, doesn't it?!?  But these supplements have been recommended to me by my LLMD or by my naturopath.  Do I really need them?  I believe I do, and for these reasons:  my doctors SAY that I need them, I've learned about the purpose behind each one for Lyme healing, AND I'm feeling SO much better after one year of antibiotics + supplements.  There is no way that I'll be going off these anytime soon just to see what would happen!  I need to keep my immune system boosted in the best way we know how, in order to keep the spirochetes in check.

Here is how I keep track of them - the handy, dandy pill organizer.  I used to think that pill organizers were just for the elderly.  WRONG!  I don't know how I'd remember to take them all if it weren't for my organizer.  I fill it up every weekend, and I'm good to go for the week.  I typed up a chart on my computer of all of the medications and supplements that I take at various times of the day, and I use this to help me fill the organizer each week.  But I'm getting pretty good at knowing what goes where, without the cheat sheet.

Now those of you who have joined the Lyme Club will understand all about this and won't question me.  However, if there should be someone else looking at my blog who is not well acquainted with Lyme, I'm sure it will raise an eyebrow or two.  Here is the purpose behind the pills.

The antibiotics - Obviously to kill the bacteria
Nystatin - To help prevent yeast overgrowth while on the antibiotics
Digestive enzymes - To help with food digestion, which is a common problem in Lyme
Probiotics - To replace healthy bacteria in the intestines and prevent c. difficile
Vitamins - To boost the immune system
Supplements to help deal with specific symptoms.  E.g., CoQ10 for heart palpitations, B6 for nervous system symptoms, omega 3 for brain function 
Supplements to deal with specific deficiencies common in Lyme patients.  E.g. iron, magnesium

Thankfully, I take most of these supplements with food, so I just have to remember to have my pill organizer with me at each meal.  As recommended by my first LLMD, I take the pills at the beginning of my meal, after a bite or two of food.  This means that the rest of my meal will land on top of the meds/supplements in my stomach.  I have found that this method prevents the heartburn that I experienced when taking them at the end of my meal.

So where should you purchase your supplements?  I get them from several different places, depending on the supplement:  the drug store, Costco, the grocery store, the health food store, or my naturopath.  I've read that it's best to get "pharmaceutical grade" supplements and not "drug store" brands.  However, I have to balance that information with the COST.  Combined, these supplements are expensive, and have put quite a dint in our monthly family budget.  Buying everything from a health food store would get really costly.  If I can get certain supplements at Costco in bulk, I go for it.  With others, I choose a lesser priced drug store name brand.  I get my magnesium from my naturopath because I want a really good one that will be well absorbed.  It's good to do your research and weigh it out. 

So, as you can see, taking the supplements has a purpose.  I'm not sure yet what supplements will be required once I have finished with the medications.  I haven't thought to ask that question, as I'm not quite there yet.  But for now, I'll continue to follow this protocol.

                                                                Bon appétit!