Sharon’s Story

October 2003: Port Coquitlam, BC

I am a 40 year old female. I have been married for 5 years. I have a 14 year old son and a 7 year old step son. Before I was bit by a tick I was very healthy and active. I worked full time and took care of our house and family and enjoyed walking and biking. I found that I could function on about 6 ½ hours sleep a night. Until my sickness I was healthy and have had no major health problems and very rarely got sick.

In August of 2000, while at our cabin in Tulameen (Southern Okanagan), I was bitten on the back of my head just above my neck (which was covered in hair). I knew it was different type of bite, not a normal mosquito bite, but never gave it much thought. It was sore and felt like it had a scab on it. I did not notice any rash. We thought it was a spider bite. About 4 days later I was sick with what we thought was a bad 24-hour flu. I did not relate it to the bite. The bite went away shortly after and I forgot about it.

Over the next few months I started to get a lot of headaches. I also started getting a lot of aches and pains, mostly in my neck and right shoulder, and I was tired al of the time. I was going through a ton of Advil trying to get some relief. As time went on these symptoms got worse. I didn’t go to the doctor because I had had an old injury in the spot that hurt the most (neck/shoulder right side). I just thought it was acting up again and would go away.

In April 2001 the pain worsened. I could barely move my neck and my right shoulder. The pain was excruciating. I went to my family doctor. I had to stay home from work at that point. I had an old injury in the back of my neck on the right side, which my doctor thought was acting up again. She put me on anti-inflamatories and muscle relaxants and after about a week sent me to physiotherapy. Over the next few months the pain got worse and was now moving down my back and into my right leg. Physio was not helping at all. I was so weak that I could barely get up the stairs of our house. I was extremely tired all of the time. I was getting cramping and spasms in my right arm and shoulder and now in both legs.

In the summer of 2001 my shoulder was so bad it became frozen. One morning I woke up and could not move m legs. They were full of cramps and pain. My doctor now knew it was something more. I was sent to a Neurologist who did a nerve conduction test, I saw a Rheumatoligist, I had a series of blood work done, and I had a CAT scan and a MRI. Nothing was found in any of the tests. I was still getting worse. I was still going to physio three times a week. They tried all different things including taping me and acupuncture with no results.

Finally in September 2001 I went to see a 2nd Neurologist. He did some tests and asked some questions, one of which was do I do any camping? I said no, but we have a cabin. He added the test for Lyme disease to his list of blood work that he wanted done. The test came back positive. The day the test came back my family doctor sent me to an infectious disease specialist. He started me on Ceftriaxone through IV. He said 3 weeks would be enough but extended my treatment to 30 days because we were so persistent. I got very sick during my treatment. At the end of the 30 days I was feeling only slightly better than before. Very shortly afterwards I was convinced that my medication had not worked. My family doctor had been diagnosed with cancer and would be off for about the next year. I went back to see the Infectious Disease doctor who told me that he was sure that the Lyme disease had been dealt with sufficiently. He said what was left was probably just the damage from the Lyme disease which needed time to reverse itself. He suggested it could be something else that was wrong. He did not want to see me again and suggested I go to a Rheumatoligist. I returned to my family doctor’s office to make arrangements to see a Rheumatoligist.

Over the next 16 months I continued to go back to my family doctors office but saw someone different all of the time as my doctor was still off. All of my aches and pains worsened but now it was affecting my head. My right arm did not move very much at all and it hurt constantly. Both of my legs were sore and weak. My hips were sore. I was extremely tired all of the time. I had very severe headaches. My face had bells palsy on the left-hand side. I was depressed with uncontrollable crying bouts and mood swings. My earls clicked constantly like they were popping when you land in an airplane. My left ear had a lot of sharp pains in it. I was very sensitive to noise. I was not sleeping well. I would wake up in a sweat lots of nights. Other nights I would be woken by severe head pain. And worst of all I thought I was going crazy. I felt like I was walking around in a fog. My memory was very bad. I would leave a room to do something and not know why I was there. I had trouble just thinking minor tasks through. I had to really concentrate when talking to someone. If there were other distractions or lots of people it would confuse me. I couldn’t get out what I wanted to say properly. I couldn’t read anything because I wouldn’t remember the sentence before. My mind was constantly wondering. I found myself avoiding people and just keeping pretty quiet. I felt like nobody was helping and that they did not believe me.

In May of 2002 my husband saw an article in the Vancouver Sun about Lyme disease. It was written by Dr. E. Murakami. We made an appointment and I started seeing Dr. Murakami. He did some verbal memory testing and exercises. I didn’t know how bad I was until I realized that I couldn’t count backwards from 100. I had worked with numbers all of my life. My husband did most of the talking while I just sat there and cried. It was the first time that I had someone who knew what I felt like. I was introduced to other Lyme disease patients. I felt like there was hope to get better.

I saw Dr. Murakami once a month. He was so good at answering calls and e-mails and made us feel that it was no bother asking questions. He would always get back to us day or night 7 days a week. He would e-mail just to see how I was doing. He started me recording my symptoms and their severity on a graph. He started me on oral Biaxin and Ap-Metronidazole in May 2002 and I continued with that until July 2002. During that time there was little progress. Dr. Murakami had to find an infectious disease specialist who would accept me as a patient. My family doctor returned about this time. Dr. Murakami and she worked together for me. Another Infectious Disease doctor agreed with him and started IV treatment of Penicillin in August 2002. The Penicillin was 24 hours per day, 7 days a week. I also started taking Tinidazole 250 mg. Also in August 2002 I got an infection in my pic line. I took Cephalexin 500 mg for that. Then also in August 2002 I got an extremely bad itchy rash and had to go to emergency. They figured it was from the Tinidazole so I had to stop taking that. In September 2002 the Rheumatoligist sent me for nerve blocks. The idea was to numb the arm and shoulder and then go directly to physio to have them work on it. I had the nerve blocks done at the Royal Columbian for 5 weeks. It did not work like it was suppose to. It was supposed to last many hours to days afterwards but it would only last 1-2 hours. The Doctor thought it might be reacting somehow with the Lyme disease. I stopped the nerve blocks in October 2002. In September 2002 Dr. Murakami also put me on Apo-Metronidazole. I would stay on the Penicillin IV drip for 3 months, finishing in October 2002. I stopped the Apo-Metronidazole also in October 2002.

About a month into the IV treatment I was feeling less tired and less sore. My mind was not running as much, I was sleeping better, and the bells palsy was gone. Things continued to improve over the next while. Then about 2 to 2 ½ months into my treatment I felt a lot better. My head was clearing up. Things were less foggy. I was remembering better. I was walking better, less pain in my arm and shoulder. I was less depressed. I remember being out for lunch with my husband and realizing that I could hear him and what was going on around us as well. My arm was even moving better. I was so very happy. I was still sore and weak and tired. They explained to me that my body had been damaged and the muscles had not been used for a long time.

I spent the next 6 months working on getting my strength back. I was weak from not being able to do anything for so long. I started walking every day. I did exercises for my arm and shoulder. I did a lot of reading and playing with the computer to build my mind back up.

It is now September 2003 and I have returned to work. It has been 2 ½ years since I first was off. I started out slow doing 4 hours per day. I had to be totally re-trained. Things have changed a lot. I had 3 weeks with someone with me. A brand new person takes about 2 weeks. Learning some of the new things took me longer than it should have. I got my notes in a really good order and I am now finally comfortable and confident that I know what I am doing. I am very sore when I get home from work. I have started massage therapy to try to relieve some pain and still take lots of Advil, but overall I am doing pretty good. Very good compared to 1 ½ years ago. I tend to sleep more now (9 hrs) compared with before I was sick (6-7 hrs). I am still sensitive to noise and at times have to leave my surroundings. My ears still click constantly.

I can’t help thinking that if I were treated for 3 months of IV meds the first time, I would not have gotten so sick and I would have been better at least a year earlier. I fell like I missed out on life during the time that I was sick. I feel that I have aged a lot. It has been very hard on me and my family. I don’t know where I would have been today if it were not for the support and encouragement and medical expertise of Dr. Murakami, my family doctor and the second Infectious Disease doctor that went further than her colleague in treating my disease..

I am writing this in hopes that it gives someone with Lyme disease hope to get better in the future and that doctors look into extending IV treatment to at least 3 months instead of 3-4 weeks.

– Sharon

  1. renee reyer on said:

    I feel for you. I am glad you are doing better. I am not sure if my symptoms are Parkinsons or Lyme or both and I am single and need to work.

  2. Thank you for sharing your story. I was diagnosed with Lyme last week. I contracted it 33 years ago as a pre-teen. I am 45 years old. Both my knees were replaced in my 30’s, I was scheduled for a total hip next week (which has been postponed indefinately) and both of my shoulders need total replacements, but no surgeons will do them at my age.
    In all of the time that has passed not a single doctor (until last week for pre-op medical release) ordered me an ANA and Double DNA Strand. I am receiving dissabiliy and state health coverage, and by a miracle got pushed onto a new primary care physician who ordered the bloodwork.
    Every doctor before has said the same thing, “you have a genetic defect”, which is the medical term for, “I don’t know”. This doctor said, something is afoot…
    The osteoarthritis that I am stricken with has attacked ALL of the cartilage in my body right down to my hands and spine. You couldn’t make this stuff up!
    I am DEEPLY concerned about long term antibiotic therapy, and the consequences of foregoing it, if the 30 day treatment of oral Doxycycline 100mg doesn’t work…
    Being that my condition SEEMS to be limited to cartilage erossion, I wonder if I would be at risk for other symptoms of the disease if no further action is taken. If you have any knowledge of this, please share. Thanks again for your post

  3. Pingback: Lyme Disease and Frozen Shoulder: A Correlation

  4. Hi
    My daughter was diagnosed here positive last year at the age of 7. Her only symptom was a rash but I had seen the tick. She was given antibiotics and since seems ok. Has anyone known for the person to become sick even though they were treated within the first stage? I always worry so much when she has a pain or sore.

  5. Melissa Watts on said:

    I am 47 and being treated for frozen shoulder. My ortho finally said I need to get tested for Lyme disease. I live in the south so there is always a possibility of tick bites. I have had the blood work and awaiting results. I had tularemia as a child from a tick bite. Could this be resurfacing causing my problems?

  6. Jennifer on said:

    This message is for Sharon (fr 2003).
    Sharon, I would love to hear how you are now??
    I have a very similar story complete with frozen shoulder and stiff neck.
    Was diagnosed about 6 yr ago.
    Thank you,
    Jennifer

  7. Sherrydarrah on said:

    Oh my dear god…I have read several post here especially Sharon’s and I am just now convinced I have Lyme after the last 18 months of every symptom I have read and researched about Lyme and have been to 3 neurologist here in NH and at Ma General hospital in Boston with every test under the sun done to me and received so many different diagnosis all proven wrong. I finally made an appointment yesfpr next Friday with a Lyme specialist who my brother in law went to 2 years ago. I am scheduled for a lumbar puncture onn11/30 per my Neurologist I saw Wednesday and hope to god I can avoid this after I meet with the Specialist next Friday. All comments you can send me will greatly be appreciated and helpful.

    • Update 11/16/18 I was diagnosed with Lyme and Bartonella and Babesia and the Doctor noted the mri of my Brain from 3/18 was the Red Flag as it clearly noted Moderate Atrophy of the Cerebellum and 2 Neurologist completely ignored my questions regarding that finding stating it was age related!

      I am grateful to have hope of getting well a day at a time.

  8. Sarah Lobo on said:

    Reading this gave me somewhat kind of comfort I got diagnosed with lyme disease about a month ago did the antibiotic for two weeks and im still having symtoms I feel like none of the doctors know what’s going on with me i finally today told my doctor to refer me to a lyme disease specialist. My neck hurts I’ve been getting crazy headaches my left ear hurts all i keep doing is crying I feel like no one understand this type of disease I’m hopin I get more answer. But i am happy i read this cause what you went through Im.having some of the same symptoms myself and I just hate it. I have a little girl that needs her mom and I just want to feel better. If you could email back on more about this disease it would be great. Mariebabii147@gmail.com is my email.

  9. Heather Walton on said:

    I have been through so many symptoms. memory loss, speech issues, pain all over, weakness in the legs, tingling in the arms, extreme exhaustion. Blood work, xrays, nerve stimulation tests. Nothing found. Canadian lyme test came back neg and my family Dr wont believe me that its lyme even though i handed her a sheet with all my symptoms. I chose to self treat holistically and am managing to keep a status quo. I was put on 2 different antibiotics a few months ago 2 weeks for one and 2 weeks for the other for a pneumonia and a bad ear infection and lo and behold all my lyme symptoms disappeared! 2 weeks after being off the antibiotics the symptoms have slowly returned. my main symptoms are muscle pain and fatigue and cognitive issues now.

    • Ursula Kowcun on said:

      Have you tried getting tested outside of Canada most Labs come back negative here. You would have to use either Armin labs in Germany or igenex in the US but it would come out of your own pocket.

  10. Gina N Hooker on said:

    Hi guys, after 7 years of severe fatigue, sore knotty muscles, stiff tight neck, leg weakness. with no diagnosis, multiple negative tests, i still wouldnt give up. I heard about someone who had similar hx and was dx with chronic lymes by practitioner in Knoxville Tn. I made appt and paid for expense of visit and labs on credit card. I was given dx of lyme and am on herbal protocol which may take a year or so to resolve. I am 1 month in, fatigue better but not my neck. I cannot sing in choir as muscles tighten more and is painful….but i am hopeful. Considering pain doctor if no improvement after 6 mo…steroid inj in muscles or botox?? I dont know. Just ready to be painfree and have full ROM of neck. Oh and knees and neck crackle like crazy. Knees hurt when walking too.

  11. I am a 69 year old female. I have worked outdoors most of my life and I live in a rural area. I was in reasonably good health until August 2014, when I was bitten by a tiny tick on my thigh. This rapidly developed into a spectacular bull’s eye rash with red and white rings. I went to a doctor, who dismissed this as an infected insect bite or allergy. The rash remained for more than two months, with the hard raised center repeatedly breaking open and bleeding. The side of my face went numb. I developed a constant headache and terrible dizziness and nausea. It felt as though I was on a boat ALL THE TIME. At times it was so severe I could not stand. I had to learn to eat through the nausea. My memory and cognition deteriorated so that it was hard to carry on a simple conversation or find the correct words. A Canadian Lyme blood test in October came back negative. I was referred to a neurologist, ear specialist, cardiologist, but nobody could find a cause for my symptoms. Finally in December 2014 a doctor prescribed doxycycline. I became so sick when I started taking it that I ended up in the hospital. When I told a neurologist at the hospital that I was pretty sure I had Lyme, he said verbatim: ” There is no such thing as Lyme disease. It is all anecdotal'” An MRI brain scan showed a moderate aneurysm and a cyst, but nothing to explain the severity of my symptoms. After more than a year, my brain fog and ability to function started to improve, but right away I developed terrible gastrointestinal symptoms. My stomach was paralyzed: anything I ate would stay in there for up to 10 hours. I had severe acid reflux, which was not helped at all by proton pump inhibitors. I crossed the border into North Dakota, where endoscopy showed some stomach bleeding but no ulcer, and nothing to explain the symptoms. I also developed intermittent bouts of air hunger, where I just could not get a satisfying breath. I developed terrible pain and swelling in my knees, which had to be drained of fluid repeatedly. There was pain in my hips and lower spine. In June 2016 I developed a partial retinal detachment in my right eye. After more than two years of the stomach problem, it started to get a bit better, but I am permanently on antacids, and short bouts return from time to time. In July 2019, I developed a partial retinal detachment in my other (left) eye. In August 2019, my air hunger came back with a vengeance. It is as though my diaphragm is paralyzed on the right side, and inhalers do not help at all. Lung specialists cannot find the problem. At about the same time in August 2019, I developed pain in my neck, which has spread to my right shoulder. In the last two weeks my neck has been in constant spasm. I am unable to turn my head from side to side. So this is my own tick bite saga. The medical care system seems to be blind to this problem. If they cannot find an obvious cause for your illness right away, you get cast off to fend for yourself. Nobody wants to be bothered to pursue it. Maybe this is not covered in medical school. This is an illness that cycles through your entire body, and the symptoms come back. No end in sight.

    • Ursula Kowcun on said:

      Lyme test in Canada almost always come back negative. From what I’ve heard they are only 15 to 30% accurate. if you’re willing to pay out-of-pocket you can get your testing done through Armin labs in Germany or igenex in the US. They test various strands as opposed to just one like here in Canada. Also wondering how you have been feeling?

  12. Annalisa on said:

    I got diagnosed with lyme and co’s in 2011. It has been a battle ever since. I haven’t been on antibiotics since March 2017. I have taken such a backslide. I did really well til September. I have been dealing with the worst headache and pressure since then. I am miserable again. Has anyone treated for several years and the go into a major relapse?

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