My story of Lyme disease:
I have a story to tell about a strange illness I have had for over 2 years. It could easily happen to you or anyone you love and overnight your life can change. Had I never found out what was wrong with me I think I would have lost my mind wondering waiting and worrying never knowing what was going to happen next. I never knew if I was having what seemed like a seizure, or would I just be walking around and feel like I could fall over, or my whole side would go tingly and numb. My eye would droop and I felt nauseated very upset and scared.
I was a 43 year old healthy woman with an active full life until around July 2002 I noticed I had a rash on my stomach, I never thought anything of it, it wasn’t itchy really or painful, then it just went away, a few weeks later I noticed another one on my upper arm, it was circular, red, slightly raised, it was the same as the other one but a little bigger, but again I thought I must be allergic to something and ignored it. Throughout the summer I didn’t feel too well, I had diarrhea, flu like symptoms and swollen glands in my neck, I didn’t think anything of that either, I thought I just had the flu.
That summer I went on holidays, a few days into my holiday I had severe stomach pain, I went to the closest hospital, and seeing as I’d had bowel obstruction in the past and they thought that was what it was. They put me on intravenous fluids , the pain eventually went away, and they said I had a high white cell count for some reason. Then around September of 2002 I began to notice small areas on my face that were tingling. Around my jaw, then my cheek, near my ear, and around the eye. I didn’t think much of that as well it because my neck had been really sore, I thought I had strained it at work, so I assumed it came from that but when it continued, every now and then , (once or twice a week) I also starting feeling overly tired, aches and pains, and fever sometimes. I also had, as strange sense of vibrating in my system, like my nerves were vibrating or something sometimes, it would come and go.
Eventually this tingling got worse , it occasionally went into my arm and sometimes my leg. So I finally went to my doctor, at the time I had a cold sore so he asked me if I’d had any other rash or blisters anywhere else, so I told him about the two rashes I had . He suggested I had shingles and gave me a prescription. . He said to take it immediately when I felt tingling, so within a week again I had tingling, so I took it, I finished the prescription and assumed it was over. But .. I was still having symptoms. Some months went by, the rash was gone, but I still felt unwell, I couldn’t really describe it just extremely tired, achy, with this strange tingling and numbness, and some days I would be so sick and off balance.
So I decided to try to quit smoking, I tried by using the patch , but had a reaction to it, I had to go up to the hospital with chest pain twice, they decided I had a reaction to it, so I decided to try and quit on my own, but within a week of this my face was tingling again in spots and my hearing would go out a little, with ringing and buzzing in my ears, I was starting to feel very sick. Then one day I had a strange feeling of flushing on my face when I went to look in the mirror my entire face was almost a scarlet colour, I had never experienced anything like that before. It went away in about a half an hour. Then a few days after that my neck was so stiff I could hardly move it.
Within a week, about 9 months after all these strange symptoms started, the day that changed everything for me, I was just sitting down relaxing and suddenly I had the strangest feeling, like something jolted me in my back or stomach, I couldn’t really tell, it was so sudden and weird feeling, then I felt more tingling, almost like a shiver, down my left side my eye went a little droopy and it felt like the nerve near my eye was twitching, my mouth felt weird like I couldn’t move it very well, I got up and I was off balance I was very dizzy and felt really weird. My hearing went out again a little, with ringing and buzzing in my ears, such pressure in my head. I felt like I’d had a stroke. I’d never had one before but I knew the symptoms and have seen what they can do to you as I work in health care.
I laid in bed all night wondering what happened to cause this, the next day I was still off balance and numb in spots, my face was tingling, and my hearing was off in my left ear loud noises or any noise bothered me and I felt sensitive to everything. My doctor was away, so I saw his replacement he ordered a Cat scan and tested me for neurological problems. The cat scan was clear, but he felt I had a TIA and put me on plavix ( a blood thinner).
A few days later my doctor was back so I wanted to go see him he felt I had not had a TIA. I was relieved but still didn’t know what this was. He ordered some tests to see if he could figure out what was going on. For the next few weeks I had the same symptoms periodically, sometimes I would smell a strange odour then I would have tingling and feel weird, frozen like staring into space, just for a few moments , I have never had such strange symptoms, I had as many as 20 of these spells some days , then I would go a while with none or very few. One day I went home from work because of this, my boss , who is an RN sent me to my doctor she said I “may be” having a seizure, she wasn’t sure, I went home from work and went to my doctor he asked me if I had any epilepsy in my family, he thought “maybe” I was having seizures, they were not sure.
I have had doctors tell me I had a stroke, (TIA) shingles, possible vagus nerve disorders, MS, migraines, mitral valve prolapse, irritable bowel syndrome, depression and anxiety . I am the type of person where I go to work everyday, love my job , my family and rarely would I be off work for illness, if I was ever ill I’d usually go to work anyway, now I have to call in sick more than I ever did in my life, I used to live a really great full life.
The only good thing about that day is I have not smoked since that night. I have had either medication treatment or tests, for most of the above with no relief, or answers, I have since had many tests – I’ve had a barium enema test, barium x-rays of my stomach, they thought they found an ulcer, I have had many blood tests, urine tests, blood glucose tests, I also had an ultrasound , pulmonary breathing test, x-rays of my chest , wore a halter monitor , and a PH study to determine acid levels, Doppler , EKG, and an echocardiogram and more….. In the past year and a half I have spent many a day very sick and scared over what has happened to me. My life was no longer the same and I was afraid it never be if somehow there was no answer to this.
I may have spells like this few and far between , or I have days where I am so sick I can barely get through the day . Now I just live with it , sort of , I wonder how much longer I can go on like this. I have seen several specialists. My life has completely changed because of this. I now have days, sometimes weeks, where I am sort of ok I can manage it, then I will have weeks where I am sick just can hardly get through the day. I do everything I can from watching what I eat, exercising, not exercising, drinking more water, not drinking or eating the wrong thing , thinking maybe I am allergic to something, etc, anything to try and figure out what may be causing this, including searching the internet and library for answers and visiting several doctors.
I am so grateful for one ‘good’ day, if not I live my life where I go to work and just pretend to be ok or else my life would stop if I gave in to every one of these feelings, I can be just be talking to someone, laughing, or sitting reading, watching TV, walking, eating, it doesn’t matter when I just start to feel very sick and have tingling in my face and arms with strange burning feelings , l feel like I cannot breath that well, my eye goes very strange, it feels droopy, ringing in my ears, and a stiff neck. I feel off balance and disorientated I feel like I’ll and will fall over if I don’t grab onto something.
I have sore joints and sometimes have difficulty walking without pain and my muscles feel uncoordinated and clumsy . The symptoms have even changed over time, In the past months I now have back and joint pain continuously, and the tingling has changed to other areas of my face and body. I am very sensitive to sounds and bright light hurts my eyes sometimes. It may go away after a while, or stay for most of the day whatever this was, it runs my life! I don’t. I may wake up feeling ok, or I may feel bad I never know. I took a brief period of time off when I really felt bad but since then I try to go to work but when it happens I just try to get through my day all the while thinking I am having a stroke or who knows what. This has changed who I am, and destroyed the confidence I thought I had in myself wondering if it is all in my head.
I have never searched so hard for an answer as I have with this, so sick most of the time, and no answers, I think the doctors I have seen have tried, some of them anyway, my family doctor has put me through a battery of tests, what more can he do? However, I saw a neurologist who said “sorry you don’t fit into my little box of symptoms so I don’t know what you have“. He said you “could be” having seizures, you may even has MS, but I am not sure” in 6-12 months if you still have these symptoms make another appointment we’ll do an MRI and see what we come up with. I thought ‘could you do it sooner than that please?’, as soon as we can get in instead of up to a year from now?.
I wonder if these doctors know what its like to go through something like this? You are frozen in your life wondering why you are suddenly having all this happen, you hope at least for some idea, anything. I really wonder how fast they’d make an appointment for themselves if they were numb all down one side of there body, and tingling, especially in the face. From what I have learned from the doctors, tingling in the face comes from inside your head, is not a musco-skeletal problem as I thought in the beginning as my neck was so sore, so if that’s the case could we take a look inside my head! Why wait 6-12 months.
So time went by and I waited , all the while having the same symptoms on and off. I made another appointment to see him , he still had the same “you don’t fit into my little box” story, he acted as if it were all in my head. He told me I’d better go on an antidepressant that would do it. How discouraging, I know that there are many symptoms we can have with depression and anxiety, I understand that, even some of the ones I’d been having, but not like this, this was too strange. I’d had some very bad things happen in my life about 10 years ago, and went into a depression for a while I know how it feels, this was nothing like that, nothing! Even my friends had decided that it was probably anxiety , after a while I don’t blame them I was sick constantly for over 2 years, with many of the symptoms looking like panic attacks a nervous disorder. But it was so frustrating how could I tell them this was different, it was not anxiety, I’d have a heck of allot of anxiety when I had these strange feelings but only because of the illness, not the other way around.
Another neurologist I saw, said I was hyperventilating, so that was my problem, that was probably the most insulting if not funniest yet, never once through this have I hyperventilated (except maybe waiting for test results) and listening to a ridiculous diagnosis. I know how one feels when they hyperventilate I did that when I gave birth , and while in pain through bowel obstruction and I know the feeling very well. I know you will “temporarily” have tingling and numbness. But for a week straight or in your sleep, at rest? No one was listening!
How, I thought, can I tell them this is different!. How stupid I wonder do they think you are? I can’t tell you how many doctors handed over antidepressants without even hearing me out. When I finally said NO I am not taking any more of these I have tried this and it did not make things better, they were like “now listen who is the doctor here” Ok I will write on your chart you declined medical help.
So my doctor finally suggested I research this, I researched everything I could think of, but then one day I went to the chiropractor for my severe stiff and burning neck and back and I still had tingling in my face. She said she thinks it may be neuritis, she said “No this is not coming from a problem in your neck. I looked that up and what comes up is among other things Lyme disease, I thought no, I had seen that come up before when I researched the symptoms. I hadn’t been bitten by a tick!.
But then I thought well I’ll take a look at the symptoms and what it can do to you, I had looked up everything else, I couldn’t believe it, almost every one I had been having, and most people don’t even remember the bite usually only the rash, sometimes no rash, but the rash was identical to the two I had. I started to really look and I was more and more interested, I started talking to people at the Canadian Lyme Disease Foundation and they suggested I contact a nationally recognized Lyme specialist Dr Murakami.
I realize people can have many of these symptoms with any illness, but this was too similar, a rash, then stiff neck, flu like symptoms, it then progresses, not in this exact order but it listed tingling of face, arms, eye drooping, ( bells palsy) seizure like episodes, feeling off balance, pain and burning, joint pain, breathing difficulties , chest pain, on and on. They said the symptoms wax and wane and can come on suddenly or slowly over time.
I got mad thinking why wouldn’t the doctors I saw especially the neurologist not have explored this! He should have recognized this!
I got to the Canadian Lyme Disease Foundation page from the list they compiled on Lyme disease, I have easily ticked off 90% of the symptoms. I tried not to get too excited , but I thought this could really be it. If I did have it it would explain the last 2 + years of my life.
I waited to go to my doctor. I thought he would think I was on a wild goose chase, but he listened to me had me tested and gave me erythromycin , for one week, I had read that I would need it for much much longer if I really had this but I just took it, and thought please let this be the answer. Meanwhile I contacted Dr Murakami I told him my history he told me to make an appointment right away.
So I am on the antibiotic waiting to see him and suddenly on the third day I woke up at 4 in the morning by all my symptoms with a bang, I could hardly walk out to the car as my husband it getting dressed to go to the hospital, I had chest pain and felt like I couldn’t breathe, my eye went droopy and I had it all but so much worse, I made it out to the car and ended up having the doctor at emergency tell me I had a reaction to the drug.
I found out later this is called a Jarisch-Herxheimer reaction which is common when a person with Lyme disease goes on antibiotics. It is caused by the kill off of the bacteria and they then become toxic to your system making you very ill. So I decided to wait to see the Lyme specialist before I went back on the antibiotic.
I waited anxiously for the appointment, I finally get there and he does a complete evaluation and after about an hour he said You have Lyme disease! I am confirming the diagnosis especially considering the bad reaction you had to antibiotics. I couldn’t believe it, it was the best news I’d had for years.
He put me on a regimen of antibiotics for 3 months and some guidelines while taking them. I walked out of the office and felt like finally could this be true, this would explain everything! But why would I or anyone else have had to go through all this for years when the doctors could have checked me for this long ago.
Now I have a much longer course of treatment, it may leave me with some permanent symptoms, and while the “cure” is there for many people it is a long long road of bad reactions from the antibiotics and many sick days waiting for the day when the road ends and we can live a normal life again. This disease is called the great pretender because is mimics other diseases in some ways, such as MS, Fibromyalgia , and many others.
This could happen to anyone, we need to make sure it does not happen to you or anyone you love. Knowledge is power over your life. It is time everyone was educated about this disease called “The Great Pretender”… first on the list should be the doctors!
Thank you for listening to my story,
– Sydney Murray