My story – from Nova Scotia to Alberta
I am a 52 year old woman from Alberta. In the summer of 2004 my husband and myself vacationed in Nova Scotia. I was at the time an extremely healthy individual with absolutely no health problems other that coping with menopausal “hot flashes”.
I was bit by something on my right foot while visiting a relative in a rural area of Nova Scotia. My foot swelled to almost twice its normal size and was very red and hot for several days. I never did get the classic “Bulls-Eye Rash” so never thought about it being a tick bite. The site of the bite bothered me for many weeks and always felt itchy and irritated. About three weeks or so after the bite occurred, I started to get horrible, blinding headaches on the right side of my face, mostly temporal region so my family doctor diagnosed me with Trigeminal Neuralgia. I started taking Tegretol which is the drug of choice to treat the condition.
My condition did not improve, in fact I began having more symptoms, changing on a daily basis. My right arm, leg, fingers, toes started to lose feeling. At times they felt like the were all asleep. Soon after my face was tingling as well as my nose and tongue. My balance was effected so much that when I would try to get out of bed, I often fell over to the right side. My memory (which has always been incredible) was suddenly so bad I couldn’t remember the simplest things. I started to stutter and search for words which is really unusual for me. I could hardly make it up a few stairs without sitting down because I was so tired. Suddenly I need to sleep every afternoon because I was exhausted even when I did nothing. The nerve pain was so bad that it felt like an acid cursing through my veins and it would wake me at night.
Needless to say I was very frightened and my family doctor sent me to have a CT Scan of my head. Everything came back normal even though her neurological exam definitely showed marked difference in my reactions from right to left. The next step was an MRI to rule out MS , as well as blood tests to rule out Lupus. Everything came back normal except my C-Reactive Protein came back very high. The neurologist that my family doc sent me to seemed to wash his hands of me and made me feel like I was going crazy. He suggested talking Neurontin for the nerve pain and pretty much told me to go away. I asked him if he thought perhaps this could be Lyme Disease and he said flat out NO! I described the bite, the reaction and where I was at the time (because Nova Scotia has a lot of infected ticks) He did reluctantly order an Eliza test which came back negative, His last words to me were “if you still have symptoms in a year from now, maybe we’ll do another MRI”.
I was so frustrated and frightened because I KNOW MYSELF. I am not a hypochondriac! How could this come on so soon? I had done lots of research on the internet , entering my symptoms and always Lyme Disease would pop up. I approached my family doc and told her I wanted to contact Dr. Murakami in Hope, B.C. because his name kept showing up and she said “Go for it”
I spoke to Dr. Murakami in January 2005 and decided to go down and see him in February. He sent me for many blood tests and explained that Lyme is clinically diagnosed but he felt that my symptoms were very suspicious. When the tests came back I was positive for Bartonella . One can get this from cats or ticks. I am not a cat person. Have never been scratched or bitten by a cat so we knew it was from a tick. He started me on a 4 month regime of Biaxin and Flagyl. The pharmacists at my local drug store were very concerned about me taking the antibiotics for such a long time and cautioned me to eat yogurt and take acidophilus. I took both of them twice a day and must admit sometimes it was hard because I suffered quite a bit of nausea. I had two or three bouts of Herx reactions which made me feel really bad – almost bad enough to quit but I did not. Dr. Murakami had to me to expect these reactions and I had read about them but I had not expected them to make me feel so bad. They lasted for a week or ten days each time.
Dr. Murakami and I e-mailed back and forth about my symptoms, how I was feeling etc for the whole time. I cannot thank him enough for his patience and understanding.
I am happy to say today I am feeling really good – back to myself with no health complaints at all (other than hot flashes) I saw Dr. Murakami in July in Hope, B.C. again and he explained that this could come back but we will just go back at it again with perhaps different antibiotics. At this point I have no headaches, numbness, dizziness, my memory is back to normal, no stuttering and I have tons of energy!
My family physician is a believer now and has taken quite an interest in Lyme Disease. It was great to have Dr. Murakami and his expertise to guide me through this process and I will stay in contact with him in case my symptoms should re-occur. I encourage anyone who has been bitten by something and becomes ill like I did to check into Lyme Disease. It is not as uncommon as one might think. We need more doctors like Dr. Murakami, who has tirelessly researched this disease and is out there making our doctors more aware of it.
We must be proactive about our own health and don’t allow doctors to make you feel like you are crazy. You know your body and mind – and don’t let anyone tell you any different.
Dr. Murakami, I thank you for all you did for me and my family is also thankful to you because the have their mother and wife back again.
Thank you for your story. I live in Alberta, and am sure I have lymes. Was bite by something on the back of my left leg, just above the knee end of May, 2011. Red bull’s-eye with a small white circle and a small bite in the middle. I thought it was a spider bite. A day later, I scraped it on a wooden chair at work, and it turned black in the middle. Dr treated it as a skin infection(cellulitis) with 3 days of iv anti biotics, and 5 days of oral antibiotics. The sore healed, but leg still hurt deep inside. But slowly all the other symptoms showed up. Was and still am using many herbal treatments, colloidal silver, cleanses, Dr. has had me on doxycycline 100 mg 2 times a day on and off since Feb 2012. My first lymes test came back negative, so the when the Dr. sent spinal fluid to get tested, even though it showed some type of infection, the lab refused to do the test, even when the Dr. called. My Dr. then sent me to a neurologist, who is stumped, knows something is wrong, but wants an spinal mri done (booked for Sept, 2013). Then my Dr. sent me to an infectious control specialist, with a note on it he suspects lymes, as I have most of the symptoms. He also specified he would like the western blot done, as my Dr. can’t order it. When I went to see the specialist, she told me right out, “There is no lymes in Canada, and especially not in Alberta, so she wouldn’t run the test. She is running other tests, but all but two for fungal and bacterial, my Dr. had already done, so we are doing them all again, and waiting for results( Mid July, 2013) Now waiting for my Dr. to get back from holidays, then going to order tests from US to get diagnosed. My Dr. is against me having to pay for the test, it needs to be done here, but Medical System is blocking it. I need help before I end up in a wheel chair. 53 and using a cane as I am so wobbly and weak. I am like you were. Nerve pain wakes me up, like all the nerves are running fire through my body. Never sleep more than 4 hours, for a year and a half. Still no llmd in Alberta. Thank you for your time, and any help I can get. Sue
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