Since speaking out about my diagnosis of Lyme Disease (and the other associated infections) I have had a lot of emails, messages and phone calls from people looking for help and/or more information.
I do my best to answer these questions but my health isn’t great right now and it’s very hard to keep up with the emails/calls/messages.
For the sake of my own health I need to be able to focus my energy on fighting this illness. Once I get over this hurdle I have every intention to continue my fight the politics around Lyme Disease – my goal is to help make a real change; a big change that will help all Canadians. So, to conserve some of my energy I’ve decided to create a post of commonly asked questions.
I think I might have Lyme Disease, what were your symptoms?
I’ve also mentioned the Horowitz Lyme Questionnaire in the same blog post. This is not a diagnostic tool. Dr. Horowitz calls this the MSIDS model – Multiple Systemic Infectious Disease Syndrome, and it arranges symptoms nicely. Bringing this to your doctor can help him/her see an organized list of your symptoms.
The most important thing is discussing everything with your doctor and that you be your own advocate. It is your responsibility to come to your appointment prepared with everything I’ve discussed above. Your doctor can’t know everything or make assumptions, so by doing this prep work ahead of time you are helping your doctor help you.
You also won’t walk in with your list of symptoms and hear your doctor say “yes, you have Lyme disease!”, I know how disheartening it is when you have an unknown illness, but please be patient. The symptoms can mimic many other diseases and conditions. Your doctor will work with you, order lab work and refer you to specialists to rule out other diseases, this is an important step, but it also takes time. Don’t get frustrated and try to stay positive. Be prepared that the more doctors you see, the more possibilities and opinions you will receive. Some of the feedback you will get from doctors can be disheartening; keep your chin up and do your best not to take it personally.
If you think you have Lyme disease, you can contact CanLyme and ask for a list of Lyme Litterate Doctors (LLMD’s). To my knowledge at the time of writing this there are no medical doctors in Canada. There are quite a few naturopathic doctors on this list. Should you decide to contact one of these LLMD’s it is incredibly important to discuss this with your doctor as well.
How do you get a western blot test?
First things first. Discuss this with your doctor. In Canada the ELISA test is typically what is first ordered to check for Lyme. If this is positive, then a blot test is ordered. You can read more about this test here in my Open Letter to the Prime Minister.
Your doctor may be able to request a blot test without a positive ELISA, but I’ve become aware in the last couple of weeks that some labs deny the request for the blot test despite a doctor ordering it. Again, be patient! This is not the fault of your doctor. I know first hand that coming to a diagnosis can take quite a long time. Patience is the best tool in your toolbox.
Personally, what I did was use the lab Igenex
in California. This was done based on the suggestions from CanLyme and ILADS. First know that you need a doctor to sign the requisition form; this cannot be done without a doctor. Call Igenex and ask them to send you the kit for the “complete Lyme panel” – they will send everything you need including the return labels. If you have more questions about this you can contact Igenex. This test will roughly cost you $900 (Canadian).
Because this lab is in the USA please be aware that not all doctors will agree with this or the results that come from a US lab. There are a lot of different bodies of research and professional opinion on this subject.
Why do you have to travel to the USA to see a doctor?
As you may have realized, Lyme is something we don’t know too much about yet. There are a lot of studies and the research is coming faster due to increased awareness and the growing number of infected people. Currently, there are no best practice guidelines for treatment of Chronic Lyme Disease.
Using the help from CanLyme and ILADS (go to the contact section of their websites) I was sent lists of LLMD’s. As I previously mentioned, when I reviewed these lists I didn’t find any medical doctors in Canada, only naturopathic doctors. I mean no offence when I say I did not want a naturopathic doctor, I’m just very sick and I wanted to have a medical doctor.
Choosing a doctor off these lists isn’t easy. I spent two weeks combing through each of them to make the decision. I emailed, called and read all of their websites and patient reviews online.
My LLMD is Dr. Jemsek in Washington, DC. I’ve discussed him in other blog posts
. The reasons I’ve chosen him is due to his extensive background as a MD and he is an Infectious Disease Specialist. He has over 10 years of experience in Lyme disease and has spoken at many conferences and workshops. He is a mentor in the ILADS Physician Training Program and I watched videos of interviews and speeches on YouTube – it was clear to me he is very smart and compassionate. I wanted a LLMD who wouldn’t just prescribe antibiotics, but one who sees the body as a whole and focuses on addressing immune function as well as deficiencies and imbalances that come with Lyme disease, and someone who also considers how to manage pain, sleep disturbances, ect.
Dr. Jemsek has appeared on 20/20, Good Morning America, 60 Minutes and in the documentary “Under our Skin”
(which by the way, if you are in the Dryden area there is a screening of this eye-opening documentary on June 10th at the Centre. Doors open at 6pm, admission is $15, proceeds are being donated to my treatment). Dr. Jemsek is not only is he a leader in the world of Lyme Disease, he was also a pioneer in HIV/AIDS. In early 1983 Dr. Jemsek diagnosed the first case of HIV/AIDS in Mecklenburg County and quite likely in all of North Carolina, when he was requested to provide an infectious disease consultation. From there he kept going: he and his staff have participated in more than 100 clinical research studies for HIV/AIDS treatment, of which 22 became established protocols. In these and other academic pursuits in the area of Infectious Diseases, Dr. Jemsek has generated more than 40 peer-reviewed publications. Dr. Jemsek also does not sell his own line of supplements, nor does he endorse any particular brand – one more reason for me to trust him; he has no personal gain. Lyme can be a lucrative business, unfortunately there are MD’s and NPD’s making a lot of money off of really sick people.
Due to his dedication to the medical profession and strong will to help patients get better – I chose him to work with in conjunction with my local doctor. I can’t stress enough how important it is to have a primary care physician you trust throughout this process.
Why doesn’t OHIP cover anything?
This is a myth. OHIP covers my local doctors visits – just like the rest of Ontario residents. Most of my blood work is also covered. In the time between August 2014 and now I have had to pay for approximately $1000 for lab work done locally, not only related to Lyme but when trying to rule in/out a variety of autoimmune diseases. When I was admitted to the hospital in February (still undiagnosed) between my health insurance and OHIP by bill was $50.
I’m about to head into the treatment phase soon (see my post about my 1st visit to the Jemsek Clinic)
. Treatment is going to consist of regular visits to DC, approximately every 4 weeks. Travel, accommodations and visits to my LLMD are paid out of pocket. My local doctor is working on forms to see if OHIP will pay for the doctor visits, but this isn’t guaranteed and I haven’t had an answer yet.
Once I move forward with treatment I’ll post more about it.
What is the best way to prevent tick bites?
This is something you can find on most Lyme related websites and Public Health Websites. Some suggestions are:
Can you give me some advice about how to get through “the system”?
Well, that’s a very complicated question. Patience. I’ll say it again, patience. There have been a lot of financial cuts that make it even more difficult for our doctors. In many cases – including where I live – we have a shortage of doctors. No one becomes a doctor because it is “easy work” so believe me, things take time. Even a simple request can take a few days due to their workload. Many of us forget that the doctors, especially in small towns don’t just see patients at the clinic – they have inpatients at the hospital, work ER, have patients in long term care, deliver babies… The list goes on. So my biggest piece of advice is to be patient.
There is no way to “cheat” this system. The flaws come from levels higher up. Believe that your doctor would love to do everything at once to help you, but it’s just not always that simple. If you want to learn more about this, click here.
My best advice is to over-prepare for your appointments. Journal your symptoms and type it so your doctor can read it. Don’t write it in the form of a novel; make it point form or organize it into a chart or table for easy reading. Rate your symptoms (from 1 to 10, with “10” being intolerable). Basically what I am saying is to paint the best picture for your doctor. The more work you put in ahead of time, the more effective your visit will be.
Lyme disease resources
Ontario Lyme alliance
Lyme Disease Challenge
Battling Lyme Disease in Ontario Canada
Under Our Skin
Northwestern Ontario Lyme Sufferers Support Group (I created this group as the number of Lyme patients who’ve contacted me in our area. I don’t manage the group – it is just there if you are looking for support)
Why Can’t I get Better? – by Dr. Horowitz