My quest for health

The approaching "end of treatment" date is sobering.  For the past few months, I've viewed the antibiotics as my safety net.  Sure, for the first year and a bit, those drugs were sustaining me, and then healing me.  But since I've been feeling well, they haven't had a significant purpose other than to insure that the bacteria have been beaten down sufficiently.  Soon, this safety net will be removed. 

ILADS doctors like to treat 2 months beyond the end of symptoms, and I'm currently weaning off the antibiotics.  I've gone from 2 doses of Zithromax daily, to one dose daily.  I'm having a phone consult with my LLMD next week, and we'll see what he'll do next.

Soon, my body will be on its own, needing to keep any remaining Borrelia burgdorferi at bay using only its beautifully designed immune system.  That means I need to support my immune system in the best way I can.  Sadly, I haven't been doing so well in that department, but it must begin to take on a greater importance in my life.

To that end, I joined a fitness club, something I haven't done in about 15 years!  I've certainly exercised in the past 15 years, especially when trying to lose my post-pregnancy weight, but it's been a very long time since I've had a club membership.  I decided it was time because I was having difficulty getting motivated to exercise.  Despite the fact that I have a treadmill at home, dozens of workout DVDs, and weights, I constantly found excuses to avoid exercise.  And exercise is what I need right now, not only to lose the 30 lbs I gained while I was sick, but to support my immune system.

So far, I've been doing the treadmill and the weight machines at the club.  I think I need to build up my strength a bit before venturing into a group aerobics class.  I'm dying to try Zumba, but I'd likely drop dead from exhaustion!  Perhaps I can ease into that class, doing a half class at first and working my way up.  If anyone has tried Zumba, I'd love to hear your thoughts.

I've also discovered the sauna!  I have a new appreciation for the Finnish and their natural approach to health.  I've been sitting in the sauna at the club for 15 min., just feeling all those toxins rising to the surface.  It's been great.

In addition to regular exercise, I've made a pledge to myself to work on other areas I've been neglecting:  eating well and sleeping an adequate amount each night.  I've definitely improved in the eating department.  I hauled out my old Weight Watchers information, and I've been watching my calories more closely.  I lost 2.5 lbs last week.  Who hoo!  As for the sleep, that is the hardest area for me.  I'm such a night hawk and thoroughly enjoy the quiet house at those late hours, so I've been cheating myself of a good night's sleep and dragging myself through the day.  That's certainly not good for the immune system.  I'm really going to work on that goal now.

For those of you reading this who might be very ill from Lyme disease, or who might be in the middle of treatment, know that it IS possible to feel well again, and to be able to make goals like this in the future.  When I was sick, these types of things were the farthest from my mind.  I was in survival mode.  And that's OK.  You can only do what your body will allow you to do.  But do have faith that your treatment will make you well again.  It really can happen.  It happened to me.

You are in my prayers.

Lyme in Australia

Lyme is everywhere.  From Canada, to Poland, to Australia.  It's just so unbelievable to read stories of people, or whole families, affected by Lyme but who are being turned away by the medical community.  And that's happening from one corner of the Earth to the other.

Honestly, does the medical community think we're making this stuff up?  Do they think I've "faked" my recovery after 17 months of antibiotics?  Just what will it take for them to BELIEVE?

I feel for Australians who have been affected by Lyme.  Our situation in Canada is only marginally better then theirs.  But at least we neighbour the U.S. where doctors who treat Lyme are accessible.  Australia is on its own, so the situation is more difficult. 

I was encouraged to see that the Australian family in the video below has found a Lyme-literate medical doctor in Australia to treat them.  They are receiving antibiotics and herbal medications.  I wonder what the rules are in Australia regarding long-term antibiotic treatments for Lyme.  In Canada, a doctor will lose his licence if he/she does not follow the protocol for Lyme treatment which permits only about a month's worth of antibiotics. 

All I can say is that we need to continue to speak up and tell our stories - in newspapers, on the radio, on blogs, on YouTube, on the internet, and on Facebook.  Wherever and whenever we can.  We need to continue to bombard them.  Eventually, things will change; I believe that.  And these social media will have played a huge role in that.

Feelings of insecurity

I just got off the phone with the secretary of a helpful doctor I was referred to when I was very ill last year.  This doctor works at the sleep medicine clinic at one of our hospitals.  She is a psychiatrist who specializes in sleep.

Before I tell you about today, and the reason for the title of this post, let me tell you about this doctor.  Even though she was not well versed in Lyme disease, I did not feel demeaned by her.  She truly wanted to help me resolve my sleep issues, whether they were from Lyme (as I knew they were), or stress.  She never actually said, "Yes, I really believe you have Lyme!"  But she never discounted it either.  She listened well, and engaged in dialogue with me.  She encouraged me in my efforts to follow her "sleep plan" for me, and she never spoke condescendingly or in a reprimanding tone.  This doctor arranged to have a sleep study done for me very quickly, and when I was ready to come off of the sleep medication, she helped me out SO much.  I really appreciated her at a time when other doctors were shutting their doors to me.

So back to today.  I was to have an appointment with her this coming Wednesday which I knew would be my last appointment because I've been sleeping well for many months now.  (Hooray!  I never thought the day would come when my sleep would be restored.)  Anyway, the secretary needed to reschedule my appointment to an earlier time which unfortunately didn't suit my work schedule.  In the end, I just cancelled the appointment altogether.  I might as well free up an appointment time for someone who really needs her.  The secretary told me that if I should need to see her again beyond 3 months from now, I would need to be referred again, but the problem is that she is not taking any new referrals!

My heart sank.  For a little while, feelings of insecurity washed over me.  Here I am, at the END of this relationship, with no chance of coming back should my situation change.  I felt a bit scared.

Then I got thinking about what it will be like when I'm no longer seeing my LLMD (Lyme-literate medical doctor).  He literally saved my life!  And soon, I'll be let loose, out on my own, to "wait and see" what happens, if anything.

So why the fear?  If I've finished treatment, that's all there is to it, right?  Wrong.  The concern of relapse will always be a dark cloud overhead.  It's hard to fully eradicate the Lyme bacteria, Borrelia burgdorferi, once it's entrenched in organs and tissues.  As one LLMD wrote, "you can beat it down, but you can't beat it out."  Now this all depends on how soon after being infected that you begin treatment.  In my case, I don't know when I was infected.  I believe that the bacteria was dormant in me for quite some time before multiplying and developing into full-blown Lyme.  Although I started treatment 5 months after the onset of my symptoms, I may have been infected years before.  So who knows if I can ever really be "cured".  And that's the frightening part.  Being out on my "own" and no longer under the care of a doctor.

Those of you who know me personally will be thinking to yourselves, "Where is God in all of this?  Has Paula forgotten all He has done for her during her illness?"  Well absolutely not!  I remember every big and small thing God did to help me pass through this valley of the shadow of death.  I will never forget it.  But sometimes the fears and feelings of insecurity block out the other emotions.  I am human.  And that is when I realize that I need turn back to Him who can comfort me, protect me, help me, and who will never leave me or forsake me.  When I think on these things, it warms my heart and gives me that peace that transcends all understanding.

Despite the fact that relationships with my doctors will soon be ending, God is and always will be my Great Physician.  And no matter what happens, it's going to be alright.

The cost of Lyme treatment

I've been wanting to post this for a while to give those of you who are just embarking on this journey some idea of what this is all going to cost you.

First of all, things may be different between the U.S. and Canada with regard to private insurance.  I have read, for instance, that insurance companies in the U.S. will not pay for more than a month's worth of antibiotics because of the IDSA guidelines, but I have not found that to be the case with my insurance company in Canada.

Here is a breakdown of what you can expect.

Please note:  These are the prices I paid in 2011.  I know for a fact that some fees have gone up since then, especially for the LLMDs.

1. IGeneX tests - This will be one of your first expenses, perhaps before you even see a Lyme-literate medical doctor (LLMD).  The tests will cost you anywhere from $200 - $1200 depending on what tests you order.  The most important test for you to get is the Western Blot (both the IgM and IgG). These 2 tests will cost about $100 each.  I chose to do the basic Lyme panel, all the co-infections, and the CD57 test, so my cost was around $1200.  But don't feel that you have to do all of that!  Some LLMDs don't even recommend spending the money on the co-infection panel because there are so many strains of these infections, but the tests only cover one or two strains.  In all likelihood, the test will come back with a negative result for co-infections even if you are infected.  Let your LLMD give you a clinical diagnosis for those.  Sending your blood samples to California via FedEx will cost around $75.  (See my IGeneX Lab tab for detailed instructions about sending your blood to this lab.)

2. The initial consult with your Lyme-literate MD - This will cost you anywhere from $400 to $800.  The New York LLMDs are more expensive for whatever reason.  The NY LLMD that I saw charged $600 for the initial consult, whereas the Michigan LLMD that I go to charged $400.

3. Regular appointments with your LLMD - In my personal experience, regular follow-up appointments have been anywhere from $125 - $225 depending on how much time you spend with the physician.  However, the fees will vary from doctor to doctor.  Recently, someone told me that a doctor in Seattle charges $400 an hour!  So, do your research.  Some doctors will charge for e-mails, so keep that in mind.  At the start of your treatment, you are bound to have some questions, and e-mails will be inevitable.  Another thing to check out is how often your physician will need to see you.  Mine wanted to see me in person every 6 weeks.  Others require a visit in person every 6 months with a phone consult at the 3 month mark.

 

4. Travel expenses - Hotel, gas, meals.  Don't forget to factor these things in. 

5. Medications - Medications could cost up to $300 per month or more, depending on the medication.  Some antibiotics are cheap because they have been around forever.  Others are much more expensive.  The treatment for babesia, a co-infection of Lyme, is quite expensive.  Thankfully, my private insurance covered my meds right from the start.  I still consider that a miracle and I'm so grateful.

6. Supplements - They probably cost me about $100 - $200 per month.  Some supplements are cheap, while others (e.g. good probiotics, alpha lipoic acid, Omega 3) can be quite expensive.  Shop around.  With some vitamins, your basic drug store variety is fine, but with other supplements, you will want to pay for a better quality pharmaceutical grade supplement.  You'll need to research this and ask your doctor about it.

7. Other "paramedical" appointments:

Naturopath – Insurance covers some, so I pay $35 every month or two.

Counselling - After insurance coverage, it cost $90 - $180 every month depending on how often I went.  Very expensive, but very necessary!  Find a counsellor who BELIEVES you regarding your Lyme diagnosis, and who will teach you how to deal with everything emotionally.
Massage therapy - I never did this, but it is helpful for many people.

 

I know that when you start to add this all up, you might wonder how on Earth you will manage this.  Take it one step at a time.  Start with the IGeneX test and the diagnosis by an LLMD.  You're looking at about $800 to get these 2 things done.  Then, go from there and try to figure out how you might fit the treatment into your budget.  You may need to cut some things out of that budget for a while:  no new clothes, no vacations, no entertainment, no meals out, etc.  You may be surprised at ways you can cut back to come up with the funds.

 

If you need to go a step further, you may want to consider finding a way to borrow about $10 000 - $15 000 which would hopefully cover your entire treatment (provided that your meds are paid for by insurance).  Could you borrow from your line of credit?  Would it be possible to sell one of your cars?  These are just thoughts.  I don't want to presume to know and understand anyone's personal financial situation.

 

But all this to say.....it WILL require some sacrifices!  But it's for your health, and without that, you have very little.  This is a situation that will hopefully end at a certain point in time.  For me, it will have been a year and a half of financial pressure by the time I'm done treatment, but at least I'm now back to work and able to make a living and contribute to the family finances once again.

This is an investment in your future.

P.S. We're currently trying to have my Lyme expenses recognized by the Canada Revenue Agency for a medical deduction on our income tax.  All of our receipts have been submitted, and now we're waiting.  If we succeed, I will consider this a small victory for Lyme sufferers.  Stay tuned....

(Update:  Check out this post to find out what happened with the Canada Revenue Agency.  Good news!)