Last January, when we were preparing our income tax return, we made the decision to claim all of my Lyme-related expenses. I checked the Canada Revenue Agency guidelines, and medical treatments that are obtained outside of Canada are eligible for the medical deduction, provided that those services are not available in Canada.
Well, as you all know by now, long-term antibiotic treatment for Lyme disease is NOT available in Canada. Therefore, we went ahead and claimed the physicians' bills, travel costs, accommodation, meals, IGeneX tests, other lab work in the U.S., as well as payments to other paramedical practitioners who supported me throughout my ordeal, e.g. naturopath and psychologist. Our total came to around $9 000.
Because we had e-filed the tax return, the CRA later requested that we send in all of the pertinent documents, receipts, etc. to support our claim. This was no problem, as we had everything well documented and organized. The only thing that might have caused this situation to turn disastrous was the requirement that my Canadian doctor submit a letter stating that the treatment I received in the U.S. was not available in Canada.
Immediately I had my doubts that my physician would comply with this request. I hoped that the doctor would see that they only had to make a simple declaration, which really had nothing to do with whether they actually agreed with the treatment. It should have been cut-and-dried. But as I suspected, this doctor refused to issue the letter I needed. My doctor told me that it was my choice to seek this treatment, that antibiotics are available in Canada, and that this kind of treatment is not what the CRA is talking about when referring to income tax deductions. The doctor was very adamant about this. I explained my point of view, to no avail. So, I left my appointment empty-handed.
This caused us a great deal of stress, knowing that we were likely in for a fight with the CRA. But more than that, I left that conversation with my doctor with a heavy heart and great disappointment. Did this doctor, whom I have known for over 20 years, not believe my Lyme diagnosis? I had hoped that after seeing my miraculous recovery over the course of the previous 16 months, that they would have been persuaded that there was truth to this whole Lyme situation, and that perhaps the medical community needed to re-visit and update the guidelines for treatment. What will it take for doctors to believe that 3 weeks of antibiotics is NOT enough to cure Lyme disease? There are so many people, like myself, who are living proof that the long-term treatment works!
This past summer, my hubby and I gathered all of our documents to send to the Canada Revenue Agency, along with a letter of explanation for why we could not obtain a statement from my doctor that the treatment is not available in Canada. We briefly explained the political situation surrounding Lyme disease, the differing opinions regarding treatment, and the fact that there is currently a bill in Parliament (Elizabeth May's bill C-442) which is calling for a review of the current practices regarding Lyme Disease in Canada. In the meantime, I also investigated what lawyer I might call should the CRA refuse our medical claim.
We waited a couple of months for the CRA's decision, and today, we finally received our letter in the mail! The CRA had concluded its review of our documents, and it approved ALL of our medical claims! (And without the doctor's note!) My kids had a chuckle as I did my happy dance! (...which, by the way, would have been a physical impossibility a year and a half ago.)
I truly hope that this has set some sort of precedent with the CRA. I love endings like this. What a sweet victory!
Monday, November 26, 2012
Wednesday, November 21, 2012
THE END
Thank you, Dr. L, for saving my life! But the glory goes ultimately to God, who guided my steps, led me out of this crazy maze, and walked with me the whole way. My prayer is now for those who will come after me, who will face these similar struggles. I will do whatever I can to help anyone who asks, and to fight for changes in the way Lyme disease is recognized and treated in this country. No one should have to go through this when we have the knowledge and ability to prevent this kind of suffering.
If you, or someone you know suspects that they may have Lyme disease, it is important to be evaluated by a Lyme-literate medical doctor. Remission is definitely within the realm of possibility, with the right treatment. I am living proof of this!
Sunday, November 11, 2012
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.
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.
Saturday, November 10, 2012
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.
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.
Monday, November 05, 2012
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.
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.
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