Lyme Disease Think Tank, British Columbia’s Women’s Hospital Complex Chronic Disease Program, Vancouver, BC Canada

5 Comments

1. Thank you for sharing the LD Think Tank presentations on-line. In the comments on the You Tube website for Dr. Miklossy’s presentation, I noticed that a written transcript was in the works. How might I obtain that when it’s finished? She’s a brilliant researcher and her work is invaluable. As I am somebody living with neuroborreliosis, I expect the information will be beneficial. With kind regards, Cheryl

2. My wife has been completely mis-diagnosed by doctors & specialists here in Vancouver, BC. Having worked in a hospital and being very computer literate, she diagnosed herself, paid $2700 to visit a Lyme clinic and a Lab while in Florida, who sent blood samples to Igenix in California.
   Results: Western Blot Test: positive for Lyme. Other vector borne diseases were negative.

   Since becoming Lyme Literate, we see that her story mimics that of many others. We remain shocked how little the majority of physicians know about the current state of Lyme in BC.
   Her antibiotic & herbal treatments have just started. What the future hold for us remains to be seen.
   Bill Wheeler
   Ladner BC

3. Hi Bill,

   Thanks for sharing your wife’s experience. I was just diagnosed this week. I totally agree with your comments. My life has been a living Hell for the past 2 years and 4 months. The Lyme disease first attacked my esophagus. I was hospitalized because the pain was so intense.

   A battery of tests were done, including an endoscope, colonoscopy, ultrasound, CT scan, EKG, and numerous blood and fecal matter tests. Based on what a surgeon observed through the endoscope, his diagnosis was an ulcer. I was sent home and given pills for the ulcer along with Hydromorphone for the pain. I was told that this would clear up in 30 days, but things only got worse. Much worse.

   I went back to the hospital. Mystified, the surgeon suggested that he remove my gall bladder. Trusting in his opinion, I agreed, which was a mistake. My gall bladder was perfectly fine. When I woke up after the surgery, he said “I hope the pain is gone. ” I told him that it wasn’t. He didn’t know what to say, so he told me to go home and see how I feel in 10 days. Nothing changed.

   So over the next 2+ years, I saw one specialist after another, including two Naturopaths. I underwent 2 more CT scans, another two endoscopes, and numerous blood tests. I received a number of speculative diagnoses, including Esophageal Lichen Planus, Gluten allergy, Irritable Bowel Syndrome, Dairy allergy, Soy allergy, nuts allergy, eggs allergy, to name a few. I didn’t eat meat before I got sick, so now there is very little that I supposedly can eat. Try to find foods that don’t contain any of the foregoing. It’s almost impossible.

   Within two months of being sick, I lost 45 lbs. I weighed 165 lbs prior. I was a health and fitness fanatic for decades. At 5 feet 9 inches and just 120 lbs, I now look like a concentration camp survivor. I am literally just skin over bone. I have been on an extremely boring diet for the past two years without any change for the better. Things have only got progressively worse.

   In addition to the unrelenting pain in my GI tract, I now have pain in my neck and lower back. I have spasms and uncontrollable twitches. My hands tremble and my writing has deteriorated. I attributed all of this to the Hydromorphone, which I take 24 hours a day. I can’t live without it. The pain is so intense.

   Next to the pain is the chronic fatigue. When I was healthy, I could never wrap my head around the notion of chronic fatigue. I was a guy who burned-up the Grouse Grind twice a week for many years, and did over 1000 military style pushups every week in addition to pumping weights. So I couldn’t fathom how someone could have chronic fatigue. Well not anymore. For someone as active and fit as I used to be, CF is a living nightmare. It has literally sent me into a downward spiral of depression. The simplest tasks like shaving seem like “mission impossible”.

   In addition to the restricted diet, I have tried laser therapy, colonics, chiropractic massage, steroids, and anti fungal medication. In short, more drugs than I care to remember, and a whole bunch of different herbs.

   Honestly, I was at the end of my rope. If it wasn’t for my incredible family, I wouldn’t be here today. I didn’t know where else to turn. I saw every specialist in traditional Medicine. Nobody posed the question: “Could this person have Lyme Disease?”

   Fortunately, I was referred to a third Naturopathic Doctor who did pose the question. Thankfully, he sent my blood work down to Igenix too. The test for Lyme Disease in BC is inadequate. I know this because Igenix performs the BC test too. But they do additional, more comprehensive testing. The Lyme bacteria is very good at hiding itself. My results for Lyme disease came up negative on the test that is used in BC.

   My advice to anyone who wants to eliminate Lyme disease as a cause of their health problems is to get your blood tested by Igenix in California. They specialize in diagnosing chronic, complex diseases like Lyme. Do NOT trust the test results in BC. The test is inadequate. You can be infected with Lyme disease and get a negative result on the test used here in BC. That’s exactly what happened in my case.

   My future now remains to be seen as well. But at least I have the peace of mind of knowing what I am dealing with. It is horrible to be sick and not know what is causing your illness. Some people I’ve heard about have been told “It’s all in your head”. I can only imagine how frustrating it would be to be told this. At least my GI problem could be seen, even though is was misdiagnosed.

   The last piece of advice that I would like to offer is to read Dr Richard Horowitz’s book “Why Can’t I Get Better? The Mystery of Lyme and Chronic Diseases”. You can read the reviews on Amazon.com

   I hope this helps save somebody from giving up hope, like I almost did. I’m guessing that there are all kinds of people who are experiencing something similar and aren’t getting better because their illness has been misdiagnosed. If you are new to this subject, you need to understand that Lyme disease often leads to “Co-diseases”, and it’s these co-diseases that are usually diagnosed, if at all. But the root of the problem is the Lyme disease. That’s why you are not getting better.

   Good luck everyone.

4. Hi I live in Richmond bc I ive been told I may have Lyme disease can someone help me thou this I could really use some advice my Symtoms are getting worse.

   Thank you
   Jessica

5. Hi bill my name is Jessica I have been going for testing and specialist for over a yr now and still no answers I was bit by something a few yrs back and an I may have Lyme disease, I did the blood testing here in bc which was negative now I’m waiting for a kit from California. How is your wife doing did her treatment help her, the doctors in bc are not helping me at all. Best wishes

   Jessica

Comments are closed.