Janet’s Story

In June 2013 Janet’s life turned upside down, after stepping off a transatlantic flight on a muggy evening in Seattle.

Janet before Lyme disease

Janet before Lyme disease

My job was with a multinational technology company and involved lots of travel, and I had just arrived in Seattle for work. It was a really muggy evening, very warm, and I had just come off a transatlantic flight so I changed into a skirt to go out. It was like walking in a hairdryer the breeze was so strong and warm.

I remember waking up after a 16-hour sleep with a very large angry bite just above my right knee, which was unusual for me and I remember telling my mum about it when I called home. I hadn’t been anywhere particularly to get the bite, and this was the key thing that started all my problems with getting a diagnosis and the treatment I needed.

Janet in Seattle

Janet in Seattle

By the third or fourth day in Seattle I was sweating all the time, you can see by pictures of me taken at that time that I had sweat stains all over my clothes. I actually began to think I was in the menopause. I was very tired but I put it down to just travelling transatlantic and being extremely busy. I had to constantly have talc and deodorant in my bag, it was that bad. I didn’t think any more of it though at the time, probably because I was so tired. I came home to Northern Ireland and just slept all the time, I was so fatigued. I then began to get excruciating pain in my hands, knees and legs, my joints hurt and I felt like I’d got arthritis. I was also having extreme headaches. As I’d been working long days I put it down to working too hard and did nothing about it.

Six weeks later I was still in a great deal of pain and sleeping whenever I could, then late one afternoon my elderly cat woke me up by licking the right side of my face, which she had never done in her life. I thought she just wanted food so I went out to get some. I felt really awful and knew something wasn’t right with me. I was driving down the road and looked in the driver’s mirror. It was then that I noticed something was wrong with my face as it had fallen on the right side. I spoke with the out of hour’s doctor and he sent me to A&E and they said “you’ve just a Bell’s palsy”, for which they prescribed steroids and sent me home. No follow up care or tests were offered.

When the facial palsy struck

When the facial palsy struck

I couldn’t get over this awful headache and I told work I needed to take a few days off. I was wearing an eye patch and I felt really rough, it was hard to speak and I was sweating continually. I then realised my right arm was weak and I couldn’t even lift a knife, I had no strength to cut or butter anything. My GP sent me back to A&E where I was admitted immediately and told I had had a stroke. During my stay in hospital I had CT and MRI scans, and a lumbar puncture. There was a problem with the lumbar puncture though because it didn’t seal properly and I started leaking spinal fluid. When they put me into a wheelchair to go for my MRI I eventually collapsed because due to sitting upright it had leaked out more. By now I was on a drip and my right foot had no strength in it either, the whole of the right side of my body was affected. I was then told by health professionals that it wasn’t a stroke and it wasn’t MS. They simply said you’ve got a Bell’s palsy and a virus. It was now seven weeks post bite and they decided to test me for Lyme disease as well. I told them I was having problems with my memory, my friends were coming to visit me and I couldn’t remember their names, I really had no memory whatsoever. It didn’t matter how often I told the health professionals around me that something was wrong with my memory, they kept saying “we are all forgetful”. I was kept in hospital for a week and then discharged with steroids and medication for nerve pain as my entire right side of my face and neck had screaming nerve pain, trying to swallow was like trying to swallow razor blades. When at home I just got progressively worse.

About six weeks later I went back for a review appointment and by then I was using a walking stick. I couldn’t retain information in my memory, I had a letter telling me to go to outpatients 5A but I had to hold the letter in my hand because I kept needing to refer back to it. I just could not seem to hold information for any length of time. At the appointment I told them “I’ve got extreme headaches, I’m really not well and my memory’s bad. I’m in pain all the time and my face isn’t getting any better.” The consultant then said “Well you did test positive for Lyme disease.” He’d had the results for a number of weeks. Then he said “You don’t have Lyme disease though. You can’t have Lyme because the test is flaky and you weren’t in one of the locations where you could get a tick bite.” He decided to give me a month’s course of Doxycycline anyway as a precaution, which is the recommended treatment for Lyme disease. By the third week I was starting to improve quite dramatically. After the fourth week I was doing really well and my face started to come back. But by then I had finished my antibiotics and I went straight back to square one. All my symptoms returned and my facial palsy was back.

I personally referred myself to Infectious Diseases in Northern Ireland. I explained that I had been feeling much better on Doxycycline but I was now not doing well. She said “You’ve tested positive and you have the neurological problems that Lyme disease presents; you have joint pain and you were bitten; but you can’t have Lyme disease because the test is very flaky and you weren’t in an area where you could be infected, but as a precaution we will give you IV antibiotics for a month.”

Antibiotics via IV

Antibiotics via IV

I then had a nursing team come to my house for a month. I had lines fitted in my arms and I had IV antibiotics every day. It was extremely hard going, the drugs took their toll on me but the Lyme symptoms eased, and a few weeks after completion I was able to go back to work. My facial palsy had pretty much resolved. But just a few weeks later I became very ill again and my face started to do strange things; the headaches, fatigue and night sweats all came back. I felt very unwell. I had been discharged by Infectious Diseases because they said if it was Lyme disease I would be better by now. I had to undergo many additional and unnecessary tests and procedures. I was incorrectly diagnosed with sarcoidosis and a heart defect, all because they wouldn’t recognise that I had Lyme disease.

In Dublin I eventually collapsed in work, I was going to be medically discharged, my face had dropped again.

My mum bumped into my GP locally who enquired how I was. She told him how terrible I was feeling and said that Infectious Diseases say she doesn’t have Lyme disease. My GP said in no uncertain terms “She does have Lyme disease, send her down to see me.”

My GP started me on Doxycycline again which immediately perked me up. I decided then to do my own research and found a Lyme specialist doctor in Seattle which is where I got the bite. He was willing to talk to me via Skype so we sent all my blood results over and all of the letters. I had my blood tested again via the NHS for Lyme and again I came back positive for Lyme. He told me even if I hadn’t come back positive he would say I had Lyme disease. So many health professionals assume that with Lyme disease you need to be in a woody area where deer are. The argument now is that it’s not just deer ticks it’s any ticks. The doctor in the USA said Lyme disease can be caught on the breeze, he said “I am treating people from downtown Seattle who have never ever been in a field in their life before.” My fight from day one is that I wasn’t in an area where doctors believed I could have got this disease from. There are an awful lot of textbook stating doctors that say you have to be in a field, you have to be near a deer tick, you have to have seen the bite, you have to have the Bulls eye rash and here’s two weeks Doxycycline and you’re cured.

I was prescribed antibiotics for around seven months as well as herbal supplements. He monitored me via video calls every month, all the treatment I paid for privately. I have now been off antibiotics for nearly a year and I am back walking nearly 4 miles a day, I no longer have night sweats or joint pain. My memory is definitely not what it used to be.

I’ve had to fight for over two years for treatment for Lyme disease and I am one of the lucky ones. I’ve been able to pay for private treatment and I found a doctor who was willing to help via Skype. I’ve also had a GP on my side. So many other people are nowhere near as lucky as I have been.

I have however been left with a permanent facial palsy and this was where my second fight began. I hate who looks back at me from the mirror. She isn’t me. Before this happened I had a massive smile, I was a real ‘teeth show’ individual. I now keep my lips together and try to just move my cheeks to give the illusion of a smile. With the facial palsy came synkinesis, which means the development of linked or unwanted facial movements. My eye would not stay open and just squinted. My face was also incredibly sore and tight.

I’ve had a number of MRIs and the one from last February showed there was still inflammation around the facial nerve. I’m now waiting for the results of another MRI which was taken a couple of weeks ago to see if that inflammation has now gone.

There wasn’t any help for me in Northern Ireland, there are no facial palsy specialists here, and I had to do my own research yet again to find someone that could help me. I was shocked and hurt by the medical professional’s lack of knowledge and understanding of a patient with a facial palsy. I have had statements said to me that have wounded me so deeply it will never heal, for example “I don’t know what you are worried about, you nearly look normal” or “you only really notice it if you speak” or “don’t know why you are so upset I have seen worse”

I found a specialist clinic in England and referred myself privately to begin with. The first time the physiotherapist touched my face I could have cried with the pain but this has eased now because of the exercise programme I was given. I’m also having botox injections and a month after having these I am actually find looking in the mirror is now bearable. I don’t have the excessive pull to the right as my face has toned down on the left side and some days I even forget I have this problem. But when it wears off it is like something has been stolen from me all over again. I hate people mentioning it. The phrase “it’s not that bad” or “you can hardly notice it” can make me want to either curl up in a ball, or cry. It always makes me feel so sad, I pretend to others I am okay but it ruins me for a while when people say that. Christmas is the worst time of year, all the pictures of people smiling at family functions or works night out and people always want to take your picture. When you have facial palsy nothing can frighten you more than a camera.

Lyme disease has ruined my life. I have lost years of my life being sick and I am turning 40 in a couple of months. It got to the point where it was normal to be ill and to have so little energy you couldn’t even make yourself a cup of tea. My friend with Lyme was affected differently, it affected her heart but it didn’t affect her neurologically, it affected me neurologically. It’s a cunning disease that affects people differently and is difficult to diagnose, but I did test positive for Lyme disease and there was no sense of urgency or immediate treatment plan.

Janet had to tape her eye closed

Janet had to tape her eye closed

If I’d got the right treatment straightaway I wouldn’t have permanent facial paralysis, because with the first antibiotics my face did come back and the inflammation on the facial nerve had decreased. But by stopping the antibiotics the facial nerve was attacked again and it’s been attacked that many times on and off that I got my face back twice and then lost it again.

The problem is the NHS have a set of rules to treat Lyme by and I did get treated on the NHS to the max for Lyme so I was discharged when I was not fully better – The Infectious Diseases consultant told me “fatigue is in the mind, Janet, and maybe you should go for a walk.” I assisted in a Girl Guide Duke of Edinburgh scheme, I was a Girl Guide gold assessor. I would be jumping into kayaks, chasing kids down rivers, I’d be working 20 hours per day. Presenting in stadiums of people. I’d be travelling 200 miles and having a life, she thought I was just a bit tired. It never occurred to her that I might still have Lyme and I may need further treatment. It was very black and white to her.

In my opinion the mistake that people are making is the same as they did with HIV in the 80’s and 90’s. There were two camps then, one said if people with HIV got treatment and it didn’t get better then there’s nothing we could do. Then the other camp believed that long term treatment could maintain or keep the disease under control. Now you have the two camps again, one saying it’s easy to treat with a short term antibiotic and it’s easy to cure. Then the other saying it should be a long term treatment plan, this disease takes over everything, it’s very difficult to cure, and it’s chronic if you don’t get it quick enough.

I finished long term antibiotics in January 2015. I still have manageable recurring problems, such as yeast problems, I get tired quicker than I used to and of course I still have facial palsy, a permanent reminder of everything I have lost. I’m now very self-conscious because of my facial palsy, I wonder what people think of me. Can they see it? Do they feel sorry for me? Are they wondering what’s wrong?

People are flying to Germany and the USA for help with Lyme disease because they cannot get long term treatment in the UK because specialists here say it doesn’t require it. Lyme disease was debated in the House of Lords recently and people are beginning to listen. I worry though that the NHS will just think this is a new fad of illnesses, where people need a name for something, that’s just my personal opinion. So I’m not sure what will happen until there is proper research or a proper test, there is a test at the moment but it’s meant to be somewhat unreliable. However my doctor in America said yes it may be not perfect but if it is positive then it is pretty much positive. Every test I had came back positive but no one here would accept I had it. It is even worse for people who are testing negative when it could well be positive. They are looking for a more accurate test. People who test negative could still have the Bell’s palsy, the fatigue, the excruciating pain in their feet. I used to get out of bed in the morning and scream and I would have to walk on the sides of my feet because it was like glass going through your foot. I don’t have that now after long term antibiotics but some people are still going through this because they haven’t been treated or are being refused treatment for the disease.

Obviously facial palsy is now my day-to-day bug bear and after the most horrendous fight with Lyme disease I now have to fight for help with facial palsy too. The psychological problems with losing your face and feelings of loss of identity are immense and sometimes I feel like I am too tired to keep fighting. I’ve had to fight and search and cry and weep for help with Lyme disease and now I am having to fight and search and cry and weep for help with facial palsy. I have started networking with other people affected by facial palsy in Northern Ireland and I am determined to try and improve services for people affected by the condition here. There are treatments that can really improve the quality of life for someone living with facial palsy, we just need to make sure they become available in Northern Ireland.

Janet now

Janet now

People say “Oh Janet you are lovely, oh Janet you are really pretty!” but it does not matter how many times they say it to me, I don’t feel like Janet used to, I don’t smile like Janet, and my face is all wonky when I try to do certain things and I can feel that it’s wrong. In many ways I despise it. I will not open my mouth for a smile anymore as my top lip won’t lift. And I refuse to allow a full smile be taken in a photograph.

I am working with a local political party to try and lobby the health services for a multi-disciplinary approach to facial palsy as well as educating medical professionals on the true feelings and impact facial palsy can have on a patient, from the practical of how to strap down an eye when it won’t stay shut (this is so much harder than anyone realises) to giving people confidence to leave their homes.

I am a fighter, I want to help other people but at times I really struggle with confidence and it feels like too big a fight, because I’m already exhausted from all the other fighting. I’ve been spending my savings to get the help I need. I do worry about the future. But I do appreciate I am also very lucky I know there are many people who suffer every day with Lyme and I am blessed to have gotten treatment.

Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.

Last reviewed: 22-10-2016    ||    Next review due: 22-10-2018