Kate’s Story

Halifax, NS

Most Canadian doctors are not familiar with Lyme disease and have not been trained to recognize it. The simple but cruel lesson I learned is that if doctors don’t look for something, they won’t find it.

I have had a very difficult time obtaining a diagnosis and treatment. Due to my own persistence and financial investment, after eight agonizing years I finally identified my health problem. Over 20 doctors in Ontario and Nova Scotia failed to diagnose my Lyme disease.

My pain became unbearable and I have had to take painkillers constantly for the last two years. In an effort to avoid addicting narcotics, I had one of my doctors arrange to obtain Ultram (tramadol hydrochloride) from the US. In my opinion, Health Canada should try to bring this drug to Canada because it might alleviate some of the drug problems and crime caused by narcotics. Ultram works for me, whereas drugs such as Tylenol 3 (with codeine) and even Vicodin do not touch my pain.

Before my Lyme diagnosis, I tried Dr. St. Amand’s Guaifenesin protocol for Fibromyalgia. It did not help me, but resulted in my reading the experiences of many chronically ill people on the internet. I learned a lot. In recent years, many good medical articles and studies have also been added to the internet. My study of these materials was what eventually led to proper testing and a Lyme diagnosis.

I actually knew enough to ask for a Lyme disease test when I first became critically ill. The results were negative. The test was an ELISA test, the official first screen for Lyme. A few years later I had another negative ELISA test. Finally, years later, I found out that the ELISA is not a reliable test for Lyme, especially late chronic Lyme. My recent test panel included, from the same test tube of plasma: negative ELISA, negative C6 Peptide ELISA, positive Western Blot. The ELISA test for Lyme should not be used, and especially not as a first screen. Current policy is that people don’t receive the more accurate Western Blot tests unless they have a positive ELISA result. Professor of Medicine and Director of the Lyme Disease Unit at Boston University Medical Center, Sam T. Donta writes that “over 75% of patients with chronic Lyme Disease are negative by ELISA, while positive by Western blot” (*see explanation from Donta 2002 below). The policy of relying on the ELISA as a first screen test must be changed because it is ruining people’s lives.

I received positive results for the Western Blot test, having had to send my blood to IGeneX Lab in California and pay for the tests myself. A doctor at the Environmental Health Centre in Fall River, Nova Scotia was at least willing to sign for them, even though he thought it was unlikely I had the disease. My results are positive even by strict CDC criteria (US Centre for Disease Control) and IGeneX lab is one of the leading labs in the world in the field of Lyme disease detection.

Our health system cannot be saving any money by using the less reliable ELISA test. I went to the doctor at least once a month for eight years due to wide-ranging symptoms, none of which were successfully resolved because no one addressed their cause. I have had repeated, extensive testing for rheumatic diseases. If I had been tested with the Western Blot test to begin with, we would have known immediately what was wrong and could have begun appropriate antibiotic treatment, saving a lot of unnecessary use of the health system. Not to mention the fact that I have been unable to work much in recent years and may end up reliant on the welfare system in my old age unless I can recover sufficiently from late-stage Lyme and work hard enough to make up for years of lost income (Lyme is harder to treat successfully the longer it persists). My family has also suffered from this disease. Having a mother who sometimes can’t get out of bed in the morning is hard on children.

Mainly I have joint, muscle, and connective tissue pain, but I have also had many other strange symptoms body-wide. At one point I received a diagnosis of IBS. Luckily I do not have many neurological symptoms, although in recent years I have had problems with disturbed sleep and even some short-term word recall.

I do not remember being bitten by a tick, although I grew up in Massachusetts, where Lyme is endemic, and I frequently visit my parents there. I also could have contracted the disease in Indiana or in Southern Ontario. I have not ever had the classic bulls-eye rash either. It is important that doctors be informed that patients without these hallmarks may still have Lyme disease. Dr. Sam Donta states1 “the rash occurs in fewer than 50% of patients with Lyme Disease, but the true incidence of Lyme Disease in the absence of a rash is unknown.” Furthermore, Donta points out that on a clinical basis, ‘chronic fatigue syndrome’ or ‘fibromyalgia’ cannot be readily distinguished from chronic Lyme Disease. Indeed, accumulating experience suggests that Lyme Disease may be a frequent cause of fibromyalgia or chronic fatigue.”

Unfortunately, doctors tend to assume that patients with multiple body-wide symptoms along with pain and/or fatigue have one of these “waste-basket-label” syndromes that they believe little can be done for. A common belief seems to be that patients with unidentified chronic pain have an oversensitive nervous system. My own frustrated doctors tried prescribing antidepressants and sending me to a psychiatrist, to no avail. I was found to be normal. Indeed, I had normal results for every test the doctors thought to try. For lack of proper guidance from the health care system, many cases of chronic infectious disease such as Lyme are being missed. Now that I know I have Lyme disease, we have found several tests for which I do have abnormal results.

One of these indicators is the D ratio. A California researcher, Dr. Trevor Marshall found that the ratio of 1,25 D to 25 D in one’s system is a good measure of Th1-type inflammation. This applies to many types of bacterial/immune diseases such as Rheumatoid Arthritis, Osteomyelitis, and at least some cases of Chronic Fatigue Syndrome, as well as Lyme. Dr. Marshall’s treatment protocol was first tested on Sarcoidosis patients, and has proven to be very effective. The protocol uses an ARB, Benicar, to blockade the cytokine cascade responsible for inflammation. This allows the patient’s own immune system to work properly again, and also potentiates the low-dose intermittent antibiotics used (mostly minocycline and zithromax).

My own 1,25 D value came back higher than the maximum Merck value for a healthy individual, and is higher than the value at which bone resorption starts occurring. This explains why my dentist was starting to see early bone loss in my jaw, and a bone density scan came out low normal. My D ratio, is very high. I started the Marshall Protocol in July 2004, and I am documenting my progress on line at http://www.marshallprotocol.com.

As for the possible coinfections of Lyme (other infections carried by ticks), I am counting on any such also being addressed by the Marshall Protocol. The one possible exception might be Babesia. Based on my thorough research, one of my doctors and I decided that we should test my blood for Babesia because it is a parasite and the one coinfection of Lyme that cannot be treated successfully by the same antibiotics as Lyme. Many Lyme specialists believe that it is necessary to clear Babesia from the system before Lyme can be successfully treated. While, I do not have overt symptoms of Babesia, it is possible to have a subclinical case. Experts disagree and it varies according to region, but a conservative estimate is that 20% of Lyme patients also have Babesia. My doctor wrote a script for a Babesia test, specifying that the blood be sent to IGeneX lab in California, as my Lyme test was. I would pay for the test itself. I had the blood taken at the QEII hospital in Halifax, but then an infectious disease specialist there overrode our carefully-thought-out action, plucked my blood out of the system and threw it away. So I have no Babesia result.

It worries me that access to accurate testing through our health system is being limited. I also need to get my son tested for Lyme, as there is a good possibility that he was born with it. He has had many neurological symptoms and some physical symptoms that could be explained by Lyme. But in a study by T. Gardner, in Infectious Diseases of the Fetus and Newborn Infant, 72% of newborns with tissue-verified Lyme disease did not produce enough antibodies to be seropositive for Lyme. So instead of a Western Blot, I am first trying to arrange a Lyme Dot Blot Assay (of the urine) for him, an antigen test only done by IGeneX.

I will update this report when I am further on the road to recovery, and when I have more news about my son’s results.

– Kate

  1. Kate- I’m from Halifax too- I can relate to a great deal of what you’ve said in your article. Sounds like I saw at least one of the same docs as you, and he gave me the same message (“you probably don’t have it”), he agreed to order the ELISA (which was negative) and then concluded that I have fibromyalgia (which I have thoroughly researched and feel is unlikely given that neurological symptoms rather than pain are by far my biggest concern). I’ve since gone elsewhere and have recently been clinically diagnosed with what I was told is a very clear cut case of (neurological) Lyme. I’ve had bullseye rashes, and many many Lyme symptoms over the past 9 years. My daugher is 10 and I can’t be sure that I didn’t get it before she came along, so I’m now keeping a closer eye on her. I’ve had every test going (normal, normal…), I’ve seen all kinds of doctors……now I finally have an answer, and the question is, what will I do about it? That remains to be seen. I don’t have a doctor who is prepared to prescribe me antibiotics. One doctor told me I am too far gone to treat with anibiotics, IF i have it. I am doing my homework. My first IGX test kit just arrived in the mail- I plan to send that out soon. Kate- if you ever have an interest in chatting, I would love to connect with others who don’t need me to explain what it’s like to have this, how frustrating it is to get diagnosed and to get proper treatment etc. Coming to terms with the fact that our medical system is so inadequate when it comes to this disease has been very eye opening for me. Hope we can connect sometime somehow. Jude

  2. marshall desveaux on said:

    I have read some of the stories here and they sound so much like my own story.I was wondering if anyone knows of a lyme literate doctor in the Halifax area.Please e- mail me if you do. Thanks.

  3. I am from ontario an about going crazy trying to get my an my sons symptoms diagnosed. I have had it for about four years an I believe my son was born with it as well. Any help for me? My doc says plainly that she will not treat me if I have a positive test that comes from the states. I am 33, an so sick that I am in bed all the time. Losing weight like crazy an about going crazy!

    • In Ontario there is a Lyme literate ND in Burlington at Natural Care Clinic.
      I saw her and got some results, but now I’m taking my daughter to the US for treatment.

  4. Dear Kate,
    I have a similar story to yours. I had Lyme disease and Human Monocytic Ehrlichiosis and I did have subclinical Babesia Microti. My only noticeable symptom was that I was just sooo exhausted by climbing one flight of stairs – I was out of breath and gasping, with a major internal feeling of extreme fatigue that was felt all through my body, from my throat down to my toes. Normally, just my legs might feel a little tired from climbing stairs, just in the actual muscle that did all the work! I did get the testing from Igenex, which I paid for myself and thank goodness nobody vetoed my testing! The results did reveal that it was a low-grade infection. I was treated with Mepron and Azithromycin for 3 weeks and have not experienced the above exhaustion ever since. (there was a small study done with mice, where-in they found that if Mepron was given alone the Babesia sometimes became resistant to it), whereas giving it with the Azithromycin prevented that from happening. I feel bad for people who feel like I did, and get told they “need to get in shape!” Maybe they’re sedentary because they’re actually sick, rather than because they’re “lazy.”
    I don’t see how someone in our healthcare system can have the right or authority to block us from getting a test done that we are paying for ourselves! I would think that is against our human rights. After all, some of our blood work is routinely sent to the USA to be done to actually save our health care system some money.
    All the best to you and your family. Hope you’re all feeling better soon.
    Donna

    • Rhonda on said:

      Hi, I’m from Nova Scotia. How do you get these IGX kits for testing to send away? I had the bull’s eye rash and chronic late stage Lyme back in 2003. I was never treated. Now 12 years later I have strange rashes developing randomly on my body. I have had strange things surface that would come and go over the years, but I’ve always wondered if it’s Lyme related. I was tested back in 2003, and guess what, that’s right, it was a false negative. 2003/2004 I was very sick. I had a lot of the symptoms, but was told there is no such thing in NS. I was in New Brunswick which I had the bull’s eye rash. Hope I hear from someone. Thanks

      • Roxanne Remoel on said:

        My daughter has travelled around the world. She was strong healthy . Last January (2015) she developed extreme joint pain, brain fog, extremely tired. At one point she couldn’t walk. She had to quit work because she couldn’t function. She was 27 years old . Symptoms ranged from cold to hot, high white blood count. Etc. Her hair started to fall out. Test after test negative. We suggested Lyme …doc said doesn’t exist in Saskatchewan . We want to know the address of this lab in the states . Please post it. Thx

      • Cally Linden on said:

        You can call IGenX in California; they should be able to advise you. My friend did this. Sometimes you can find a naturopath willing to help you with this. Many Ontario doctors state, “There are a lot of false negatives in U.S. and testing from other countries; it’s a money grabbing racket.” They will also state, “we will not look at any results from other countries.” Therefore, Canadians are screwed regarding both diagnosis and treatment. People need to petition and write the Federal government. It has to change now. No one should be suffering 8-10 years (as I’ve read in these stories), in Canada with no proper testing, no help and no treatment. The Federal government seems to find money for everything else, but not for helping Lyme patients. They are oblivious to this disease, and we do not have trained Lyme Literate doctors here. Most people cannot afford thousands of dollars to fly to the U.S. or Germany to get treatment, and quite frankly, they should not have to.

  5. Peggy jourdain on said:

    Hi we believed brother has Lyme… But of course the doctors don’t…. We r lost… We don’t know what to do… We live in NW Ontario… He was treated with antibiotics for 20 days n now he’s readmitted into the hospital on our insistence… What should we do ? And how where should we go?? It’s very hard seeing someone u luv go though this , let alone my brother who is struggling…. His doctor actually laughed at us…. When we suggested Lyme….

    • Justin on said:

      Hi Peggy, I’m sorry to hear about your brother and families suffering… Really Your best option is to get him tested through Igenex. You can do all this solo but I highly recommend finding a doctor (preferably a lyme literate one if you have one near you) that is willing to listen and not write your brother off as the usual (chronic fatigue, depression, or just crazy) they can then assist you in the process and analysis the results. on this site you can find more information on Igenex and I would check out the lyme symptoms list on this site to if you haven’t already. I’m sorry I couldn’t be more helpful I too have been quite ill (thinking its lyme not sure) and my mind and memory isn’t what it should be. I hope this was somewhat helpful and I hope your brother gets the treatment he deserves Good luck.

  6. kirsten bender on said:

    I have lyme also but the doctors here in Kentville are no help. are there any doctors in nova scotia that are any good to go to. any info will be greatly appreciated

  7. this message is for rhonda. You described strange rashes and things poping out of your skin. there is a tick born disease known as morgellons which I contracted from a tick bight in Florida.Itest cdc positive on a western blot as do most morgellon sufferers so I think it is another lyme coctktail. you can learn more about this rather bizare disease by contacting the charles e holman foundation or randy wymore at Oklahoma state university.they both have excellent web sights and are how I found out the root of my problem. I wish you luck in getting adequate testing and treatment.

  8. Francesca Thomas on said:

    My husband has been having pretty much identical symptoms for the last 20 years. He has been on a disability pension for the last 15 years. And we have been married for pretty much all of that 15 years!!!

    He is sick and tired of being sick and tired,

    He takes drugs for Bi-polar, for IBS, for diabetes Type 2, for chronic pain. He was told he has fibromyalgia, arthritis, IBS, high cholesterol. He also has major memory problems and brain fog, dizziness, regularly has bloated stomach, constipation or diarrhea.

    He has insomnia and cannot sleep – when he does its seldom for more than 3 or 4 hours. He has constant headaches and migraines.

    It sounds like Lyme to me. but he said that NOONE from the doctors office or the hospital has ever mentioned Lyme disease to him. I just found this today. (13 Jan 2016)

    How are we going to get ANY testing done for such a POSSIBLE advanced case?? We live in Toronto. Ontario.

  9. Corrina on said:

    Kate, I’ve had similar symptoms for about 3 nightmarish years. Constant bloating, distention, gas, weight loss, fatigue, depression, anxiety and an IBS diagnosis. I’d convinced myself that my depression and anxiety were causing my symptoms but it became too obvious that there was something else going on . I finally found my way to a doctor that was trained in detecting lyme and similar infections. She ordered a CD57 and my score was 20. She also ordered Lyme Western Blot IgM and IgG, and a comprehensive mold panel. The mold panel just came back and tested positive for penicillium, asperiliges, and candida. I have an appointment tomorrow morning to discuss treatment.

      • Wow there is so much I can relate to. I was bitten by a tick when I was much younger and had symptoms then but back then they just thought you were lazy. I am now 46 and suffering more and more every year. I have tried many GPs to help me. I have been told that I was just fat and lazy by one doctor and the rest just think I was a hypochondriac. I was diagnosed with a few things that seem right but when they diagnosed me with Fibromyalgia I thought ok we have something here. But all meds and other treatments have not helped. I found a site that talked about Lyme disease and the more I looked into it the more I realized this may be what I have. Now the hard part, getting my doctor to listen to me. She wont even test my hormones so I went to a Hormone Replacement Therapist and all my hormones were way out. How do I approach her with this. I have been searching to find a doctor that is willing to step out of the box but have not been successful yet. Do any of you know of a physician in Edmonton Alberta that would be good to go to? I am not financially well off but I do have a medical plan so if I can get it ordered from the physician it wont cost me. I am so desperate for help.

  10. I’m at the end of my rope with my mystery illness. I’ve been through every test and multiple, endless blood tests. I asked to be tested for Lyme, since I have almost every symptom. Itcame back negative. But now I see that false negatives are very common. I think I’ll ask my doctor to test again. What do I ask him for?
    My fatigue is the biggest issue for me. More than the pain, more than the brain fog. It’s dibilitating, extreme fatigue that has basically taken away my life. I work 4 days a week (after begging and fighting for reduced hours) and even that is so, so difficult to do. Every morning I feel like I haven’t slept. Every morning before work I lay in bed and try to think of any reason I can just skip work and sleep instead. Every work day is spent in a fog of total exhaustion. I have headaches a lot. When I get home from work, I eat and then I lay on the couch feeling like absolute garbage until it’s time to go to bed. I feel like I have a bad flu all the time. I struggle so much to accomplish the very minimum.
    I live in Edmonton, Alberta. I need help.

    • Hi K, your story sounds like I wrote it! I’ve given up on doctors, none of them (in my city) have helped me. I now travel 900miles every few months to see a doctor I love, but she doesn’t know how to treat my Lyme’s disease due to all my other health problems (due to being misdiagnosed for years) but she BELIEVES me when I tell her my symptoms and is very caring, sympathetic, and really interested in making me feel better. I would like to hear more about your life living with this #%*!X disease! I live in Florida but got infected in Vermont, or Virginia or Washington,,ect. on vacations each year. Hope to hear from you, Robin

      • This message is for each and every one of you who can relate to ALL of the published messages. We can all sypothise with each other. All of us.
        A TON of negative tests. GP’s and every specialist under the sun. Same thing……there’s nothing wrong with. You may have fibromyalgia, depression, anxiety.
        But don’t mention Lyme disease. I’ve learned that one. According to GP’s and neurologist anyways. I’ve learned that the hard way.
        I do have a ray of hope though……a very sympathetic and caring Naturopath. And she knows all about Lyme disease. Even after a negative
        She has now prescribed me with both pharmasetical and natural medication to treat me for the disease. I hope it helps cure me of the frustrating and physically disableing year I have had.
        I’ll keep you all posted with my progress in the coming months. Try to stay positive everyone. (As hard as it may be) ……. Bob

  11. Corrina could I please have the name of your dr and are you in Ontario or out west maybe I’m positive for Lyme and 4co infections and getting the run around here but not help that I need. Thanks

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