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!) 

Saturday, October 20, 2012

Calling Aussies!

I have noticed quite a number of readers of my blog from Australia lately.  I'd love to write a blog post featuring Lyme disease in Australia.  Would you help me by sending me your comments, either by commenting on this post below, or by e-mailing me at astraightpath27@gmail.com?  I'd love to hear from you to get a better understanding of what's happening in your country.  I may use some of the information in my blog post, but will be sure to keep names private.  (And feel free to remain anonymous if that makes you more comfortable.)

I've seen some news reports out of Australia on the internet, so I have a sense of some of the issues.  From what I understand, medical officials deny that there is Lyme disease in Australia, yet there are people with Lyme who have never left the continent!  I know that there have been some demonstrations / protests organized to draw attention to the issue.  I know it's hard to get treatment for Lyme in Australia.

I'd love to hear what your personal experience has been.  If you give me permission, I could even feature your story on my blog.  Please let me know if that would be OK.

Thanks for your help!  Sending warm thoughts and blessings to my fellow Lyme sufferers from Australia.

Tuesday, October 16, 2012

Clearly my expectations are too high

I visited my old haunt yesterday. Yep, the ER!  It wasn't for myself, though.  It was for my dear hubby who awoke in the morning with a terrible pain in his side and difficulty breathing because of the pain.  It obviously wasn't something we were going to take our time on, given the potential seriousness of the symptoms, so I decided to call an ambulance.  And off he went to get checked out.

We have been to this ER so many times in the last 10 years for both his health issues and mine.  You'd think I might break down and become all emotional at the sight of this place, but it's as though God has coated my heart with Teflon.  I walked through the halls of the ER yesterday looking at the area where I lay a year and a half ago plagued by Lyme symptoms, but where the doctor suspected that I might be a drug addict, based on my symptoms!!!  I walked past the CT room, and remembered getting wheeled there to have my brain imaged.  Nothing showed up on the scan, by the way.  I had Lyme, not a tumour.  Honestly, I am amazed at how I was able to keep it all together yesterday. 

But I digress.  Back to my husband....

He got into Emerg quickly, thanks to the ambulance.  They bring patients through the "back door", you know, and the service is somewhat better than having to go through triage in the waiting room area.  Because the pain was at the side of his chest, I figured that he would be assessed quickly, and he was.  Great!  Blood work done, chest x-ray done, EKG done, CT scan ordered.  They were checking for heart issues or a blood clot in the lung.

And the results?

Everything came back FINE!  Yes....FINE!  Of course I was very happy; who wouldn't be?  But it left us with questions:  What about the pain?  What's causing this?  What do we do now?  They didn't look into it any further, though.  He was sent home in pain, and told to focus on symptomatic relief by taking pain killers, etc.

This is where I think the system needs improvement.  At this point, just like when I came to Emerg last year with my weird Lyme symptoms, the doctors need to go just one step further and organize a plan for the problem to get resolved.  Perhaps a referral to a specialist.  I don't know.  But it truly felt strange for my husband to come home yesterday, still in pain, and having to figure out on his own what to do next.  He got on the internet to do some research about the medications he's on, and he called his neurologist to set up an appointment.  Why, might I ask, is HE the one doing this?  Where is the continuity of care?  Is there just not enough money in the health care pot to fund the job to its proper completion?

Sad.  And frustrating.  And with an aging population and the financial problems of our universal health care system, this situation is unlikely to change anytime soon.

Tuesday, October 09, 2012

A medical WOOT!

OK, I will embarrassingly admit it.  I actually had to look up the meaning of 'woot'!  Forgive me.  I'm middle-aged!  I'm a blogger, not a texter, so much of this lingo is lost on me.  But I'm learning.  So, here is the definition of 'woot':


From Wikipedia, the free encyclopedia

Wednesday, October 03, 2012

My Medications and Supplements

I've been on treatment for 16 months now.  One common question I am asked is what medications and supplements I have been prescribed during this time, so I will list them for you here.  I have often found it helpful to see what medications and supplements other people have been on.

Please note that I am not endorsing any particular treatment for any particular individual.  You need to have your health monitored by a Lyme-literate medical doctor. 

Different doctors have different philosophies.  Some are more aggressive in their treatments than others.  The first LLMD I saw prescribed 5 antibiotics for me at one time.  My next LLMD preferred to go the 'slow and steady' route by prescribing one antibiotic at a time.  Other LLMDs add herbals into the mix. 

If there is anything I've learned, it's that there is no one 'recipe' for treating Lyme disease.  Oh, wouldn't it be GREAT if there were?  Perhaps one day.  For now, everyone's situation is different, and everyone responds differently to the current treatment options.  Some people do just fine on oral antibiotics, whereas a small percentage do need the stronger IV meds to see improvement.  Thankfully, I believe that doctors are favouring oral meds over the IV, and are finding that the oral meds can be just as effective in many cases.

My Medications (This list will be updated regularly.)

1. June - Aug. 2011 (2.5 months)

- Doxycycline (100 mg, 3 times daily)
- Nystatin 500 000 unit, 1 tablet once daily (To control yeast)
2. Aug. - Sept. 2011 (1 month)
- Cefdinir 600 mg, once daily
- Nystatin
3. Sept. - Nov. 2011 (2.5 months)
- Suprax 800 mg, once daily (This is a 3rd generation cephalosporin just like Cefdinir.  I switched because my insurance wouldn't cover Cefdinir.  Suprax is not available in the U.S. but is available in Canada.)
- Nystatin 500 000 unit, 2 twice daily
4. Dec. 2011 - Mar. 2012 (3.5 months)
- Suprax 800 mg, once daily
- Flagyl 250 mg, twice daily
- Nystatin
*At some point during your treatment, you may be prescribed Flagyl.  It is an antibiotic that can treat Borrelia (the Lyme bacteria) in the 'cyst' form.  Other antibiotics can't kill it in this form.  Expect to experience a herxheimer reaction on this med. 
*I started with a very small dosage of Flagyl and slowly worked up to the full dosage.
*I had some intestinal issues and had to go off Flagyl for a time in Dec., but started up again in Jan.
*In Jan., Suprax was reduced to 400 mg once daily due to slightly elevated liver enzymes.
*In mid-Feb., I stopped the Suprax due to increasing liver enzymes, but remained on the Flagyl.
*It turned out that it was the Flagyl that was causing the elevated liver enzymes, so I discontinued that in March.  It took a few months for my enzymes to return to the normal range.
5. Mar. - Apr. 2012 (1 month)
- Minocycline 100 mg, once daily
- Nystatin
6. Apr. - July 2012 (3 months)
- Minocycline 200 mg, once daily
- Nystatin
7. July - Oct. 2012 (3 months)
- Zithromax 250 mg, twice daily
- Plaquenil 200 mg, once daily (It was reduced from twice daily because I was getting tingling in my foot.)
- Diflucan 200 mg, once weekly (To control yeast)

8. Jan. - June 2013 (6 months)

- Zithromax 250 mg, twice daily
- Nystatin
- Banderol and Samento (starting in March 2013)

9. July - August (2 months)

- Minocycline 200 mg, twice daily
- Nystatin
- Banderol and Samento

10. Sept. 2013 - ???

- Minocycline 200 mg, once daily
- Nystatin
- Banderol and Samento

I plan to stop the antibiotics by the end of October 2013, but stay on the Banderol and Samento as a preventative measure.
 Other Medications
- I took Lyrica for the vibrations in my head, from March - Sept. 2011.  It was a HORRIBLE drug, and I will NEVER take it again!!!  Obviously it is a great help to many, especially those with fibromyalgia, but it does list depression as a side-effect.  That is what happened to me.  I became so out-of-control emotional while on this drug.  I had uncontrollable crying spells that I couldn't understand.  I finally decided to go off the drug and the depression and crying spells stopped.  So....do watch out for this side-effect.
- I also took Imovane for sleep for over a year.  I was so concerned that I would never get off of it, but I was able to by cutting back my dosage very slowly, over many months. 
Here is what I take daily:
- Digestive enzymes with each meal
- B6 (200 mg daily, in a divided dose)
- CoQ10 (150 mg daily)
- Vitamin D (4000 mg daily, in a divided dose)
- Vitamin E (400 mg daily)
- Omega 3 (1 capsule with each meal)
- Alpha lipoic acid (600 mg daily, in a divided dose)
- Green tea capsule (300 mg)
- 1 Multivitamin
- 1 B Complex
- Vitamin A (10 000 mg)
- Zinc (25 mg)
- Vitamin C (2000 mg daily, in a divided dose)
- Magnesium (250 mg daily)
- Iron (high dose capsules, 1 twice daily)
- B12 shots (Can be done up to once daily for energy, but I've been doing it about once or twice a month lately.)
- Probiotics:  acidophilus, s. boulardii (the refrigerated kind) *So very important to take those probiotics, at least 2 hours after your antibiotics.  I take them at bedtime.  Please click on the 'Comments' below to learn more about the importance of probiotics.

And click here to see how I organize all of this stuff!

It seems very overwhelming at the start, but honestly, you do get accustomed to this.  It will just become part of your daily routine, because you have no choice.  I really hate having to take all of these pills every day, at every meal, but I suppose it's a small price to pay for my regained health!