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.

Wednesday, October 31, 2012

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!) 

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