Kelly Eddy has lived with Lyme disease for over 40 years. This is her journey in her own words.
After the initial illness when I was 8 years old, I never really recovered. My mother would take me back to the doctor at least twice after the initial illness because I was so tired and listless. Doctors would do the standard blood tests and nothing would show out of the ordinary other than low in iron. That would make sense later on as I found out that the bacteria would feed on iron and when iron stores are depleted, it feeds on manganese.
The doctors just felt that I had iron-deficient anemia and after supplementing I would feel a bit better. Because our family lived in a logging camp, my parents didn’t make the trip into Lake Cowichan to follow up on why I wasn’t more active as I was previously a very active child.
After that initial illness, it also caused me to have a fast resting heart rate, always over 100 beats per minute even to this day. Doctors don’t seem to be concerned with that.
Another symptom that happened as a child was swollen knees (water on the knees), and it was just something that I had to deal with.
I also had terrible nightmares, night terrors almost. The scariest nightmares. Those lasted into my adulthood. I also had severe headaches for no reason and other cognitive problems.
I couldn’t even tolerate hot temperatures without getting headaches.
I used to be a long distance runner but had to quit because I just couldn’t keep up. The disease does something to your stamina.
Once I was an adult, I had gone to many conventional doctors (probably 9-10) trying to find out what was wrong with my energy level. It was very hard to work full time.
After standard blood tests showed nothing other than low iron, there was no interest in trying to find out what it was that was causing the fatigue.
I also went to 3 naturopathic doctors as well on top of that.
Conventional doctors tested me for iron anemia and depression. Doctors first would always put it down to depression and I even said okay if that’s it then make it go away.
Antidepressants made me feel worse and did not cure the situation. I would say to the doctors, “if you could barely function during the day and do your job, you would be depressed too. Just help me with my energy and I will be happy.”
I was sent to the sleep lab at UBC in my late 20’s with a possible sleep disorder diagnosis, but they lost the data, and summarized that I was fine.
I was put on Dexedrine (a stimulant) for attention deficit disorder (the non-hyper kind) which definitely helped with energy for a while, but then I started to have to sleep again throughout the day, and the Dexedrine stopped.
Additional tests that were done:
-Brain MRI for Multiple Sclerosis (some abnormal lesions but not enough)
-Diabetes – negative
-Rheumatoid arthritis (do show positive for Rheumatoid Factor)
-Thyroid issues – negative
I was finally diagnosed in October of 2012. I became sick in the summer of 1975 at age 8 and was finally diagnosed 38 years later in 2012 at the age of 46.
I went to a naturopath doctor in Victoria that did laboratory lyme testing, and was tested for:
Anaplasmosis – tested negative
Bartonella henselae cat-scratch disease – tested negative
Ehrlichiosis – tested negative
Babesiosis microti – tested negative
Babesiosis duncani – tested positive for active and past infection
Borrelia burgdorferi – tested positive for active and past infection
The laboratory was IGeneX, Inc. in Palo Alto, CA
IGeneX is a CLIA-certified high-Complexity testing lab specializing in Lyme and other tick-borne disease testing.
I ended up having to quit my job in 2002 because I could not make it through the day without sleeping.
Check out our full interview with Eddy below.
Jim Wilson is the President and Founder of the Canadian Lyme Disease Foundation, and has lived with Lyme disease since 1991.
Check out our interview below.
CanLyme was created in 2003, when Jim realized first hand that something more had to be done to advance treatment and life for sufferers like him.
Wilson believes that many people in the medical industry who are responsible for decision-making in the fight against Lyme disease are thinking in terms of making money rather than thinking rationally to scientifically innovate in the field. He thinks this is part of the problem patients face when seeking diagnosis.
“There is very much a fallacy that’s been around for years that Lyme disease is relatively rare, that it is easy to diagnose, and, easy to treat and none of those things are true. It’s a very difficult diagnosis and the testing that they employ in Canada is a two tier test. Neither tier is very good so it compounds the likely hood of a false negative result and there is a ton of research supporting that.
If you look on the CanLyme website, just do a search using the term ‘under-detected’ and you will find a paper written by Dr. Vett Lloyd and Ralph Hawkins: two Canadians who have shown that the current testing protocol is missing 95 per cent of cases. And we have found that to be true too. I founded CanLyme in 2003, and I contracted Lyme disease in 1991 myself in Nova Scotia. It took a number of years to get a diagnosis. Then my daughter contracted Lyme disease in 2001 in British Columbia and they were still telling us this was a rare disease but here are two members of one family a decade apart 4500 kilometres apart getting what is supposedly a rare disease… the more I looked into it the more I realized what was rare was the diagnosis not the disease.
The diagnosis is difficult and the testing is terrible, so the chances of getting a diagnosis properly are slim. There is way too much emphasis on the bulls-eye rash, and the most current recent research has shown that of all the strains of Borrelia, the bacteria that causes Lyme disease, only a small subset will cause a rash of any kind. Most people never get a rash. Most people don’t even know they’ve ever been bitten by a tick because they are so tiny.
Ticks are a very highly evolved species and once they get on you its quite often in an area that you don’t see everyday. The first thing they do when they find a blood source is inoculate you with a freezing so you don’t feel that they are there. Then they get their feeding tube into the source of blood under your skin. Once they’ve found that source of blood they secrete a bonding cement at the base of their feeding tubes underneath your first layer of skin. So they’re now stuck on you, you cant feel them and they feed away so most people don’t know that they’ve had a tick.”
Are Lyme disease sufferers ever put on long term antibiotics?
“Out of the mainstream medical physicians in Canada, there are only a couple who have yet to be put under investigation for treating with long term antibiotics. Every other doctor who has stepped outside of the guidelines that are imposed upon them have been put under investigation and either forced to retire, give up their licence, or told to not see Lyme patients.
So the guidelines are 30 days of antibiotics and you’re magically cured, and that flies in the face of every animal model study done including on our closest cousin the rhesus macaque monkey which showed that the bacteria will survive 30 days of antibiotics. But scientists just ignore that research and say you’re magically cured in 30 days any symptoms beyond that are part of what they call post treatment Lyme disease syndrome.
There are other diseases that require a lifetime of antibiotics, but why they’ve singled out Lyme disease there is a lot of guessing on that. It certainly all stems back to the dollar, there are dollars being saved by the disability insurers not recognizing it as an ongoing chronic treatable infection. There is a lot of money being made by the pharmaceutical industry creating a drug for every symptom, rather than treating the disease. With Lyme disease being a multi-systemic condition there are lots of drugs they can create.”
Do you see Lyme treatment advancing in the next 10 years?
“Something has to change. The patients and Lyme disease experts need be brought into the guideline process surrounding antibiotics. Right now we are siloed outside of where the decision-makers are, and the decision-makers do not have yours and my best interests in mind. They have their dogma and the medical industries interests, not your health interests.”
Could you walk us through the steps that someone would have to take to reach a diagnosis?
“Well initially they should go and get the two-tier protocol because that’s all we’ve got through the mainstream medical system. If you do have Lyme disease and if you’re lucky enough to be one of the few positives then hopefully your treatment process is going to be easier. It’ll certainly be easier on the physician because they’ll have something in their file to document. Most people don’t fit that scenario so there are tests you can get outside of the country, and they’re better tests.
We have been seeing the results of these since we started CanLyme, and these tests in terms of patient outcome are yielding much better results than the Canadian tests. We’ve asked that Health Canada studies these in a transparent way with our experts involved, but they have refused. They don’t want to do the tests. So Canadians are left to pay for these tests out of pocket. You can call these labs outside of Canada and they’ll send a kit in the mail and they can get their blood drawn locally. Then it gets sent away, and we’ve found that the results are much more reliable.”
How many people do you believe are living with Lyme disease but are chalking it up to depression, or other conditions?
“Tens of thousands of people. And that is probably the best answer we can give because it is an unknown. We believe that every person with Multiple Sclerosis, Parkinsonism, Irritable Bowel Syndrome, Chronic Fatigue Syndrome, Fibromyalgia and on and on, should be completely reevaluated for Lyme disease. We are constantly finding people who have gone years with those diagnoses only getting their life back when they find out that it’s actually Lyme disease and they seek out the correct long term treatment.