My battle with Lyme disease

So today, after 28 days, I have finally finished my treatment for Lyme disease.

via Wikimedia Commons

Oops. This wasn't the type of Lime I was talking about.

For those that didn’t know, a couple of months ago, I was diagnosed with something called Guillian-Barre Syndrome. A month after spending five days in the hospital being treated for it, I was told I was misdiagnosed. I actually had Lyme disease instead.

Okay, fine. I can deal with it. I don’t mind the misdiagnosis. It happens. It can’t be changed, so why worry about it.

What I do mind is the lack of information the doctors have been telling me. It’s brutal. The infectious disease doctors at the Ottawa Hospital have literally told me nothing.

In fact, they may have just as well said “You have a mysterious illness that we can’t confirm, but don’t worry, we’re taking steps to get rid of it.”

Case in point, I had a follow-up at the doctor from the infectious disease office last week. I had some questions.

Our conversation went like this:

Me: “Now that I have been treated for Lyme disease, what are the chances I can get it again? Am I completely immune to it?”

Doctor: “I don’t know.”

Me: “Oh. How many people a year in Ottawa are infected with Lyme disease anyways.”

Doctor: “I don’t know.”

Me: “Okay.”

Doctor: “So listen. If you have any other symptoms, it’s important you come see us immediately.”

Me: ” What symptoms should I be looking for?”

Doctor: “I can’t tell you that.”

Me: “Okay. I’ve been doing some research online. I’ll just use that as a guide.”

Doctor: “No, you should never trust anything you read on the Internet about this.”

Me: “…..”

To sum it up, I have to be on the lookout for symptoms the doctor won’t tell me about, and I can’t use the Internet to help me. So if I get a fever next month, is that a symptom of Lyme disease, or do I have a basic fever? I don’t know, and I don’t think doctors in Canada know either.

(To be fair to the doctor, he did end up telling me if I were going to look things up on the Internet, use only the most scientific articles. In fact, the more scientific, the better. But I didn’t mention to him I’d rather read something I can understand as opposed to something that would end up reminding me of a university science textbook.)

Since I have been told the news, I’ve read quite a bit about the disease, and not all on the Internet. Reader’s Digest had an article about it last month (they quote a guy from Canadian web site called CanLyme quite a bit). CBC has had stories about it. There are quite a few problems when it comes to Canada’s doctors and Lyme disease. They include:

I agree with this statement.

For starters, apparently there are a lot of people with Lyme disease that are misdiagnosed. Keep that in mind as you read the next few points.

Another problem comes with exactly how rare the disease is (which ties into the first point). In the States, there are almost 30,000 cases of Lyme disease a year. But in Canada, that number is between 40 to 60. How can there be such a difference? Is there some sort of electronic fence at the border that wipes out ticks carrying the disease so it doesn’t enter Canada? It just doesn’t make sense.

I’ve been speaking to a lot of nurses at the clinic I go to each day for my IV (I have a PICC line in my arm for the IV). One of them told me that Lyme is grossly misdiagnosed, and another told me a story of a friend of hers that has a doctor that won’t order a Lyme disease test, even though the friend is pretty sure that’s what he has.

At some point, doctors kept asking me about a rash. Apparently, people with Lyme disease get a bulls-eye type rash on their bodies where the tick bite was. But according to Reader’s Digest:

“Another problem is the prevalence of the rash, or erythema migrans. The Public Health Agency of Canada says that 70 to 80 percent of those infected get it. However, statistics from some U.S. state health departments, including Connecticut’s, found the rash to be present in only 35 to 59 percent of Lyme patients.”

For the record, the City of Ottawa also uses the 70 to 80 percent number. So don’t believe you need the rash to have the Lyme disease.

Did I have a rash? I don’t know. I play a lot of ball hockey, mostly defence. And I block a lot of shots. I’m like Hal Gill, without the offence. And a day after a game back in October, I have a bulls-eye circle on my stomach. I remember blocking a shot at that spot the night before, so I didn’t think much of it. My wife was more concerned. Now we wonder if it could have been a tick bite. I still say no, but she says yes.

But at no point in the few months leading up to the rash, was I ever in a situation where I could have gotten a bite. Hadn’t travelled for more than two months before. Haven’t been camping in four years or so. Don’t go fishing, hiking, hunting, trail walking, etc. So we have no idea where I could have gotten the bite. As well, my first symptom didn’t show up for about five months after the mark, so that’s a bit of a wait.

Testing is also a big problem. While it’s accurate in people with Lyme disease (75 to 93 percent of the time), it also gives a false positive in 55 percent of people who don’t have Lyme disease. In a Globe and Mail article from 2005, an Ottawa professor talked about being misdiagnosed, getting testing in the U.S., finding out she does have Lyme disease, and not have any doctor in Ontario listen to her and treat it.

So I have Lyme disease. From what I’ve read of what other people go through, I got lucky. It looks like I may not recover for a few months. But I still think doctors need to become more informed about this.

And doctors with the infectious disease unit at the Ottawa Hospital should be able to answer a few questions about the disease.

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46 Comments

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46 responses to “My battle with Lyme disease

  1. christine Heffer

    Welcome to the world of Lyme. Just to let you know it may not be just Lyme disease you have as the tick carry many pathogens which require different drugs to treat. Also you do not have to go to a high risk area to get Lyme –birds transmit the ticks all over. You can get bit in your backyard. Lyme can lay dormant so it is possible to have it for months and then for it too show up. If I were you I would get a second opinion for a LLMD (lyme literate doctor) or at least be on the watch for ongoing strange things happening. This is a very difficult bug to get rid of unless you catch it right away and basically treat the bite. Canlyme, Dr. Murakami site and ILADS site have lots of good info — be educated and don`t trust your doctors here in Ontario to know much about this disease. Good Luck

  2. christine Heffer

    I should add that a person does not get immunity from this disease. You can be reinfected and each tick as I said has many pathogens and there are over 300 strains of the Lyme bacteria not just 1 so another bite can make you sicker. Lyme disease is very serious – it can kill a person – please educate yourself. There is a petition right now in Ontario asking for changes to how this disease is dealt with here (there are 1000`s sick with this) you can read the petition at MPP Bob Bailey`s website http://www.bobbaileympp.com/

    • Thanks for the advice. I’ll definitely be looking into it more now. I have found it problematic to find anything that gives a lot of useful information. It seems as if everything out there contradicts itself.

  3. christine Heffer

    Here is some reference material on Lyme Disease:

    Chatelaine:
    http://www.chatelaine.com/en/article/28121–lyme-disease-invasion-of-the-stealthy-bug
    W5 Out of the Wild: http://www.ctv.ca/CTVNews/WFive/20091113/w5_lyme_091114/
    16:9:
    http://www.globalnews.ca/Lyme+Disease+Lepers/2097103/story.html
    CTV news coverage on Lyme Disease:
    http://www.ctv.ca/CTVNews/Health/20090608/lyme_090608/
    http://www.ctv.ca/CTVNews/Health/20090919/lyme_disease_090919/

    Under Our Skin (the Lyme disease documentary)
    clips can be seen at underourskin.com or on You Tube

  4. Mulligan

    Wow Tom, I’m glad you’re doing OK, all things considering.

    And thank you for sharing your story. My cousin has dealt with health issues over the past few years and many signs have pointed to Lyme Disease. The family has begged Quebec and Ontario doctors to have him tested but all requests have been refused. We’ve talked about driving him to the U.S. and paying whatever needs to be to have him tested there.

    Tom, I’m sorry to hear you’ve gone through such an ordeal. I hope your recovery is speedy without any more complications.

    Good luck with everything!

    • christine Heffer

      You can order the test kit from IGENEX.COM and they will send it for free. You need a doctor to sign the request form but it can be a NP or any doctor. You then get a blood draw at a lab (costs about 25). Do it on a Mon or Tues so the blood can get there early in the week so its fresh. Fedex it to IGENEX. The cost for the test is 200.00 you want to order the Western Blot 188 and 189. Then if its positive your cousin can look for a US doctor. Doctors here will not recongize the test from the US.

  5. Frank

    HI Tom. Can you tell me the name of the dr. in Ottawa that treated you. My wife has lyme and was seeing a specialist in Toronto. She did the same IV picc line treatments for 8 months until this spring. She is beginning to get some of her old symptoms back, and we are looklng for a dr. in Ottawa that could see her.

    • Hi Frank. I thought I had responded before, but it never showed up for whatever reason. Anyways, I didn’t have a doctor that ordered the blood work. They tested for it because I was in the hospital for five days for Guillian-Barre Syndrome, and it’s a policy to do a test for Lyme disease to rule it out. Hope things work out for you and your wife.

  6. Alexis

    Hi, Tom: (and other Lyme partners). After more than thirty (yes 30) years being misdiagnosed, I found the specialist everyone should be going to: Dr. Ben Boucher in Nova Scotia, who has diagnosed me with Lyme and all the side infections going on in my body. I am in Ottawa, and he can prescribe my medications from there directly through a pharmacy and he does written follow ups every two weeks. He is the ONLY one I know of that will go openly against ANYONE, any specialist or MD that is still telling patients that there is no such thing as Lyme disease. It is worth the trip to see him (takes two months or more for an appointment), as he is so knowledgeable on it that he will pin point your stage of the disease by clinical observations/history and not so much with blood tests only. He uses a combination of herbal, vitamins and antibiotics to balance the herx reactions and believe it or not – he is so caring that one feels like the beginning of the end of pain and uncertainty is nearby….
    I have, for the first time in years, found an explanation and a treatment protocol that makes sense and I hope that many of you can be so lucky as to have someone like him guiding you through the many hurdles that lay ahead in getting well again.

  7. Rodrigo

    Hi Tom,

    How are you doing now from lyme disease? I also caught my lyme early and have been feeling much better. Love the blog.

    • Thanks Rodrigo. I’m doing better now. I’m back to playing sports, can run and have my stamina back. No more numbness or partial-face paralysis, so everything is looking good so far (knock on wood).

  8. Megan

    Thanks for replying to my comment on Guillain Barre. Plus, I’m glad to hear you’re doing better. Like the kids you had mentioned who had to learn to walk again, I was one of those people. I remember waking up at twelve and one in the morning just to ask the nurses if they would go on a walk with me around the hospital lol However, I had to wear special socks to do so. It makes you appriciate the fact that you can even walk. And, I know what you mean on the doctors saying, “I don’t know.” to just about any question you have. It’s a frustrating pain in the butt. If they don’t know the answer, what makes them think that you’re not going to try to figure out the information on your own? I have to go to the hospital three times a week for therapy and I can never get a straight answer from anyone. So, I wind up rephrasing my question with, “What do you think? I’d like your honest opinion.” And that winds up being the only how to. Thanks a lot for sharing your experience with me.

  9. Lyme is in Ottawa!

    Hi Tom and other Lyme disease sufferers,
    I’m so glad to hear that you’re feeling better. I also contracted Lyme in the Ottawa area (Chelsea) this past summer and thankfully started treatment within a few months. My symptoms have improved a great deal but I’m sad to say that I wouldn’t have received this treatment nearly as fast had I not headed south of the border. Most doctors that I’ve seen in Ottawa are skeptical about Lyme being in the area so I think it’s so important for us to share our stories. Once doctors here are aware of the presence of Lyme in Outaouais, it will be so much easier for people to get diagnosed and treated at an earlier stage of the illness.

    • Heather

      I am shocked to hear you contracted this disease in the Ottawa area. My pharmacist and doctor told me there is no Lyme Disease in Ottawa. I’m so happy to hear your symptoms have improved a great deal. Can you please tell me where to go south of the border so I can get treated as well?

      • There was a CBC story last year about Lyme disease in Kemptville, and a bunch of dogs getting it. Lyme is in ticks, which are carried by deer and birds. So if Lyme disease is in Kemptville, it has to be in Ottawa.

        This is from the city of Ottawa’s web site:

        “The number of ticks capable of spreading Lyme disease in Ottawa is low, but researchers believe the number could increase as climate changes bring milder winters. On average, there are less than three cases of Lyme disease reported among Ottawa residents each year. Most cases are attributed to exposure occurring outside of the Ottawa area.”

        So the city is admitting there are ticks with Lyme disease here in Ottawa.

        And sorry, I have no idea wherre you can go to get treated. Maybe show the city page to your doctor, and tell him there is Lyme disease in Ottawa. Hope that helps.

      • mom

        Hi Heather. I live in Ottawa, believe that this is what my son has been coping with for the last 5 yrs. He tested positive 4 yrs ago..twice! and DR still believe he doesnt have it. They feel he would be in a wheelchair by now with arthi. like issues…I want him to go and get tested in the States, but he refuses..saying that I am wasting precious dr time getting them to go down that road again.

    • Domna

      Hello there.

      I live in Chelsea, Quebec and I believe I have early stage Lyme disease. I got a small bulls-eye rash at the site of a bite (which I didn’t know was a tick — having never had a tick bite previously). But in retrospect I realized what that black dot was that I scratched away.

      Can you remember how long you took Doxyciline for? I was prescribed 15 days, but with all my reading, I believe this is an undertreatment of the disease. After a week of drugs I continue to feel the symptoms — chills, buzzing in my ears, headaches, but the swelling in my right knee has subsided considerably.

      Who was your doctor and what can you suggest going forward? Thank you so much.

  10. Heather

    I live in Ottawa, Ontario and have just been diagnosed with Lyme Disease. I have been ill for years and have almost every symptom. No one here knows how to treat me for this and nothing is being done. Please if anyone knows of any doctor in the Ottawa area or near by please can you help a girl out?

  11. Heather

    I am glad to hear you are doing better Tom. Isn’t it amazing how people are treated in the Ottawa area? Have you tried the ‘coil machine’ ? Or was it this amazing doctor in NS that was the one way ticket to heal? Are there any support groups or ANYTHING in Ottawa? I’m scared to even leave the house because I have visited every park, forest, etc (I am a photographer) and I know that is how I got it.

    • Your best bet might be to get in contact with http://www.canlyme.com/

      They might be able to help you out with a lot of your questions.

      I’m not aware of support groups in Ottawa, but there might be one.

      • Heather

        Thank you newfcollins…I have tried that site and am speaking with someone on there. But no one is helping me as to where to go, who to see medically. I left a message on my Rhuemetologist’s maching stating I have been speaking with professionals and it’s confirmed I have this disease and that I would really like an appointment with her. My messages are not returned. When I went for my 2nd round of blood work to test for this disease the microbiologist was contacted and they wanted to know every place I had been in Ottawa where I could have ‘been in contact’ before they would even take my blood. I found that ‘interesting’.

      • Maybe try Ottawa Public Health, or the city’s infectious disease unit. Not sure if they can help you, but if you’ve already been diagnosed, they may be able to help.

    • mom

      Heather contact me…i would love to have my son contact you and compare experiences. My email is guessjeans98@hotmail.com

  12. I have Chronic Neurological Lyme that was misdiagnosed as MS. I was very lucky in that a doctor in Toronto treated me very aggressively before he had to stop treating. I live just outside of Ottawa near a place called Chesterville and was told by this doctor that I contracted Bartonella here via the bite of a flea. Sadly, you have to find a very understanding doctor to treat you or a Naturopath. There is a doctor in the US who had Lyme herself and used to live in Quebec. A Dr. Mcshane. She is practicing in New York, but likes to treat Canadian patients.

  13. Doris Goheen

    I live in southern Ontario between Kingston and Toronto. I have
    many of the classic symptoms of Lyme Disease but two of the most serious. The first was when both my knees developed what seemed to be arthritis practically over night. The second was when my heart stopped five times in one day. A previous angiogram found no blockages in my heart but something had messed with the electrical system – one of the indicators of lyme disease. At my request, my doctor has requested a blood test and i am now waiting for the results.

  14. Sandra

    HI, everyone around the Ottawa, Chelsea, and Cantley area with Lyme disease concerns: Incredible as it may seem, I have found a small clinic director in the area, who is willing to put together a seminar for his doctors to make them aware of Lyme disease, the options of treatments, FIND a doctor to practice at the clinic who IS QUALIFIED to attend patients like us and most importantly: introduce local clinic days geared to prevention, education and options for Lyme disease! The catch? I need to get enough supporting documents/cases of Lyme disease in the area to proof that it is here! In other words: he needs to be convinced there is a NEED for a LLD here. So, anyone out there: send me any detail/information that I can put together and give it to him. I am a Lyme Disease patient for over thirty years, don’t have a family doctor in Quebec or Ontario (can’t get one) and I am being treated by Dr. Ben in NS – very hard to do without a local support of a knowledgeable doctor, as some of you know! I am on my second bout of ABx, and Herxing like nothing I have ever had before, plus onset of arthritis. Also: does anyone have the trouble I have: cold feet/lower legs and hands? Tingling, painful and can’t warm it up – especially later in the day/night time? Seeing that I have been to emergency rooms coming sicker than when getting in, I will pass this new symptom for the time being, although it’s close in driving me completely insane! HELP?
    Sandra
    Val des Monts, Qc

    • Heather

      Hi sandra
      I can mail you my story
      can you send me your email?
      locust_girl@hotmail.com
      Can I spread this good news to other ottawa area lymies? I know a bunch!
      Heather

    • Bev Byberg

      Dear Sandra
      I was diagnosed with MS in 2001 (likely misdiagnosed) as I just got an IGENIX test done via my Naturopath in Renfrew, Ont. I tested positive for Lyme. I live in the Ottawa Valley area and I have already received my negative response from my family Dr who ordered the unreliable Ontario test which came back negative. I guess my runaround is just beginning. The denial in Canada is amazing (and totally frustrating). If there was a LLMD in Ottawa area it would be amazing – I would go and I would pay. I need to decide what to do and I would prefer not to have to go to the US. I may check out Dr Ben Boucher (NS) that I believe you recommended. My Naturopath recommended a doctor in the US (Dr Steven Bock) but some of his recent reviews were not positive. It is extremely frustrating as you know.
      NB – I did not acquire this in Ottawa are but rather would have contracted the Lyme in the area of Pointe Pelee island or Cape Code in the mid 90’s as symptoms started for me in the late 90’s.

      • Sandra

        Hi, Bev:

        Can you contact me directly at my email: vdnspty@gmail.com ? Never mind about Dr. Ben, he is overwhelmed already, thus it looks like I have one appointment left before I am left out too. He is not taking any new patients, especially outside the NS province. I hope I can help you with the information I have had so far. I hope the new year brings some answers and treatments to you and look forward to hearing from you. Regards, Sandra

      • Lee-ann

        Who was the naturopath in Renfrew. We are in the Ottawa Valley too. My husband has the classic bullet rash- about 20cm across centre and all the doctors say its nothing and refuse to give him antibiotics. He doesn’t have any other symptoms – just the rash but if we could get the antibiotics now maybe the other symptoms won’t come.

      • Bev Byberg

        My Renfrew Naturopath is –

        Dr Robert Kidd
        614-432-6596

      • Lee-Ann Hein

        Thanks- I’ve heard of him!

        ________________________________

    • Leslie

      Sandra,
      My husband was working on a cottage in the Eganville area, two years ago, and came home with a headache that hasn’t gone away. His hands are usually cold now, he’s lost over 40 lbs, muscle pain in his legs, joints hurt especially neck and back… I’m thinking it must be Lyme (even though I’ve never seen a rash) but don’t know where to go! We’re seeing a NP on March 14, 2013 (today’s the 9th), but I would like to put my name on your list, if you still need it! We ARE DESPERATE.

      Leslie in Ottawa
      soitbien@yahoo.com

    • M. Lonergan

      Hi,
      I am late to this site. I have been sick since late 1989/early 1990. I’m fairly sure that I contracted Lyme in the Gatineau Park. I had not been to the States but I did spend a lot of time hiking etc. and I lived near the park. I was misdiagnosed as having Chronic Fatigue Syndrome and didn’t get a positive Lyme diagnosis until 2004 with the help of Dr. Jennifer Armstrong in Ottawa. She has had a waiting list of several years. I have had many rounds of oral antibiotics/herbs etc. I tried a Rife machine and many other things. I have been off of antibiotics for two years now. I have a life but I don’t thrive. Working full time is out of the question. Fatigue is a constant. I have many residual symptoms, most of which I’ve just learned to live with. At this point I don’t feel more antibiotics are the answer for me but I’m constantly searching for ways to strengthen the “biological terrain” to make it less appealing the the bacteria.
      By the way, there was a support group in Ottawa for a few years but it was difficult to keep it going because we all were ill with Lyme.
      Sandra, I am in the Cantley area and am curious as to what has happened with your doctor and getting a LLD here.
      Michele

  15. Denise

    Good Afternoon…my name is Denise McCarron-Hart and I think I have lyme
    > disease. On August 18th, 2012, I was golfing in Cheticamp. I got
    > bitten by what I thought was an insect of some type on the back of my
    > neck. In the days that followed, I experienced aching in my arms which
    > I attributed to the golfing. It settled down but returned often – I
    > went to the gym that week and lifted weights per my regular workout and
    > I experienced extreme pain in my forearms which got worse at night –
    > that also has settled down a little but is still really bad. From there
    > I broke out all through my scalp and my hair line – I thought I had more
    > bug bites and they were extremely itchy causing me to scratch
    > uncontrollably and led to my head becoming infected – my doctor
    > diagnosed my “bug bites” as impetigo and very infected. Two weeks
    > later, I experienced swollen ankles and really sore feet – so bad that I
    > couldn’t work and went to the ER – I was told I had Plantar Fasciitis.
    > When I eluded to the pain in my arms the doctor told me it was likely
    > carpal tunnel so I went out and bought a brace – no help at all. I’ve
    > been to my family doctor at least 7 times since then – each time with a
    > new symptom. I’ve been on doxycycline as my doctor thought I may have
    > lyme disease; however, when tested for it my results came back negative.
    > I had the second test for lyme on November 2th.
    >
    > I wake each morning wondering what the symptom of the day will be – tiny
    > blisters that go away and reappear at random spots on my body – my neck
    > being the worst and also behind my ears. On 2 occasions, I’ve had a
    > swollen left eye lasting nearly 2 days; swollen bottom lip that lasted
    > half a day; swollen thumb area of my hand; swollen rash and raised red
    > spots that were sore and somewhat hot to touch. I’ve had vomiting and
    > what they thought was a reaction to the first round of antibiotics
    > prescribed to me. I had full bloodwork done and I tested negative for
    > lyme – the only thing that showed was my sed-rate which was normally 17
    > was 39. The second test showed my sed rate at 40 ( this may not be high
    > for some people but it was higher than normal for me). I visited a
    > Naturopathic doctor who also took my blood and placed it so I could see
    > and said that if she didn’t know any better she’d swear I had rheumatoid
    > arthritis. So I was tested for that – negative. Due to the continuous,
    > painful swelling in my feet, my doctor has me on prednisone (50mg for 3
    > days and then start decreasing the dose). This was supposed to put an
    > end to the unbearable pain in my feet and inability to walk when it
    > flares up. I stopped taking the prednisone on November 10/12 only to
    > wake up on Sunday morning (November 11) at 4:30am due to the pain in my
    > arms, back of my legs and top of my right foot – I was crying in pain.
    >
    > My family doctor referred me to a dermatologist in Halifax – Dr. Baxter
    > – however, I didn’t get any answers other than it appeared I was taking
    > an allergic reaction to something – the something being the mystery! I
    > was told to take an antihistamine which I had been taking anyway. I am
    > on a waiting list to see an allergy specialist which I think will be
    > another shot in the dark!
    >
    > What makes this all so odd, and frustrating and terrifying is I never
    > know where this is going to show up – every day is different – my head
    > and back are always itchy like I have bites; my stomach always has welts
    > on it; and my feet are swollen most days but feel like they’re asleep
    > all the time; my fingers are cold as ice and tingly at times. I never
    > feel good – and I’m not a person that runs to doctors with every little
    > ailment – I am a perfectly healthy person prior to this. I do not want
    > to become dependent on prednisone – it’s the only relief I get but I do
    > not want to continue to take it.
    >
    > I need to know what is going on with my body. I am a healthy, 33 year
    > old woman who works out regularly and takes care of myself. How did I
    > become this blotchy, swollen, tingly, infected mess? I cry all the time
    > in pain and frustration – I want to know what is wrong with me and then
    > take the necessary steps to cure my problem. I don’t want to hear serum
    > infection, prescriptions, reaction to something? any longer
    don’t WANT to have it, I just need to able to rule it out
    > and then go from there in my efforts to find out what IS wrong with me

    • Sarah

      Hi Denise,
      I’m so sorry to hear your story and what you’ve been going through. I got Lyme in the summer of 2011 and had different symptoms than you but went about the same amount of time before starting treatment. I was on a waitlist for an Infectious disease doctor in Ottawa so decided to go to the US to get a diagnosis and start on treatment as quickly as possible. If you are able to do this, it could be a tremendous help for you. The Lyme hasn’t been in your body for too long (long enough to wreak havoc though) so you probably just need an aggressive course of antibiotics. I’m happy to give you some resources if you think that this is a good option for you.
      Good luck and I hope you get some relief soon!
      Sarah

      • Sandra

        Hi, Denise:

        Many of your symptoms are similar to what I have been going through, but for many years now. You don’t have to have a positive blood test result to be diagnosed/treated for Lyme disease, but rather an accumulation of reactions, symptoms and the doctor’s diagnosed based on all that. I would indeed take Sarah’s resource information and make a personal effort to get an answer, one way or another. Knowing what you have is half the battle, but it put your mind to rest. Good luck with it all, and FYI: I was living in Bedford and heard that the concentration of ticks with Lyme borne infections are high there…Let’s hope you can find an answer and treatment soon! Good luck! DON’T Give up your search for YOUR wellbeing.
        Sandra

      • Laurie

        Hi,
        I think my 18 year old daughter might have Lyme Disease. I’m worried sick. If someone can please advise on who to see in Ottawa or Ontario I’d really appreciate it. If we don’t find anyone then we’ll go see Dr. Maureen McShane in NY but a local solution would be much better of course.
        Thanks,
        Laurie

    • Tony

      Hi Denise

      Sounds like Lyme , I am well versed on Lyme symptoms, testing and options
      Please email and I can help out

      Tony

  16. Paul

    Hi Denise
    I would be careful with that Prednisone, because it contains steroids. With Lyme you want to stay away from steroids as far as possible, because they spread the infection throughout the entire body really fast. The antihistamines are no good either. They supress the immune system. You need to boost the immune system up, not supress it. Doctors in Ontario are clueless about treating Lyme. Or the very few, that do know how to treat it, they get harrased by the Medical Board, so they pretend, they know nothing about Lyme to stay away from trouble. It’s better to seek Lyme Literate Naturopathic Doctor, preferably in US. They have lots of Lyme there, some of them know what to do with it. But be prepared, it’s a long rough ride to get the Lyme into remission. Good luck!
    Paul

  17. Pamela

    here is a great video. start reading about dr. horowitz presentation which starts at 23:50 on this video. It explains the problems we all have. Pamela

    http://www.livestream.com/skidmorevideo/video?clipId=pla_6e766799-727a-467e-872f-c1936459b2bf&utm_source=lslibrary&utm_medium=ui-thumb

  18. Hi everyone,

    I came across this blog while researching for a documentary we are producing – one of our episodes focuses on ticks and the devastating effects of the spread of Lyme Disease. We are trying to educate the public about how serious this illness can be, how it is often misdiagnosed, and that ticks have become a much bigger problem in the past few decades. If anyone would be willing to share their story in our documentary, please email me at stephanielynnrobinson@gmail.com.

    Thanks so much!

    Stephanie Lynn Robinson

    Production Coordinator/Researcher
    Stornoway Productions
    1200 Bay St., Suite 304
    Toronto, ON M5R 2A5
    T: (416) 923-1104 ext 245
    F: (416) 923-1122
    http://www.stornowayproductions.com

  19. Ingrid Steppan

    Well everyone in Germany alone 60,000 people are diagnosed with Lyme disease every year, Norway actually has the best test in the world and it’s at the Royal Alexandra Hospital in Norway. Now having said all that, some of you may think you have Gillian bar syndrome or Lyme disease? Has anyone ever had their Gad 65 Antibodies checked? If you have more than 5 then it is abnormal and you may have what I have which is STIFF PERSON SYNDROME, it affects every muscle in your body, and you become stiffer and stiffer over time, the only thing that helps is valium, baclofen, tizanidine, gabapantin and IVIG which is a blood product. This is an insidious disease with no known cure, I have only heard of two people receiving a stem cell transplant and they are symptom free. Awareness is the key for all of the above mentioned diseases, there seems to be a very large lack of awareness towards any rare neurological, autoimmune or viral diseases, I really think it’s high time that it’s our turn for funding to go into researching rare orphan disease, I think we would be able to go back to work and function and be productive members of society as it stands now? I will die a horrible death, very similar to ALS, Parkinsons and MS all mixed up into one scary disease.

  20. Melody

    I’m a bit late here, but I had a very similar experience with Lyme. I contracted it in Eganville in 2011. After initially getting bitten by a tick I went to the hospital to see if they could check me out for Lyme. They assured me it wasn’t in Eganville and sent me home. Well sure enough I got the bull’s eye rash and had to go back in and listen to a doctor calmly tell me there was no way I had Lyme. I showed him my rash and he finally believed me. They put me on antibiotics and a month later I had to see a specialist at the Civic for follow-up and it was the exact same story. Didn’t have any information for me. Said either the medication had gotten rid of it or it didn’t and that there wasn’t a whole lot they could do about it either way.
    I’m fortunate as I don’t seem to have any symptoms since I recovered. And really lucky I had the sense to research tick bites when I first got bitten. The healthcare workers need to become more educated. Lyme is moving up north and according to the Public Health Agency report, Ottawa-Kingston area is a danger zone for it.
    http://www.phac-aspc.gc.ca/id-mi/tickinfo-eng.php#sec-2.2

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