Yes that’s right Dr, at the tender age of six I was bitten by a mythological creature. Within six months of this terrifying beast having a chew on my thigh you diagnosed me with M.E. You had exhausted all other diagnostic criteria. Not once did you consider that something so dramatic as a dragon bite may have occurred. Had you have taken a thorough medical history maybe right from the start you would have suspected Lyme Disease, perhaps you would have treated me and cured me of this hideous illness straight away. But how silly of me. You are a Dr, you do not deal in the likes of maybes, possibilities and mythological creatures; only cold hard facts, ones that fit nicely into your tick boxes.
Over the last 17 years do you know how many times your kind have uttered the words “It would appear you have X, but I am unsure because you just don’t fit into any of these boxes exactly!” Since when did the boxes become so rigid and unadaptable, are we not all unique individuals with our own mix of conditions that affects us all in varying ways? If as people we are so unpredictable in the way a condition may manifest, why then are your boxes so unforgiving. Only Monday of this week the Dr sat there trying to decide whether to diagnose me with inflammation of the optic nerve in both eyes or inflamed retinas in both eyes. Frankly the lovely woman was lost, I had her quiet confounded. She could see plainly that I was rather ill, her barrage of tests confirmed that, but not one of them could put their finger on as to why. I sat there quietly next to my mother, both of us whispering “The dragon bit me 17 years ago, but you don’t believe in Chronic Lyme Disease.”
Now replace the word dragon with a tick. This small seemingly insignificant creature is known to carry, in many cases, Lyme Disease. A disease that more often than not will report a false negative during testing due to the lack of accurate testing methods available. Oh but a lumbar puncture would pick it up you say? Yes, it sometimes does, but my neurologist swears me away from it for fear of making my Dystonia worse. One hospital says we will give you IV antibiotics that you need to cure you but we will only do this if you have an L.P, another admits they are 100% certain I have chronic Lyme but their hands are tied due to regulations that are out of date and blinded with inaccuracies.
Chronic Lyme is often hailed as the Great Pretender. You only have to look at me to see why. Here I am in another flare up of symptoms, attempting to treat each one as it appears. Its distressing really, knowing that IV antibiotics would cure but regulations prevent this as I’ve had both positive and negative results. So in the meantime it’s a guessing game of what will subdue the next round of symptoms for now.
If only Drs believed in mythological beasts like Dragons and Lyme Disease.
Currently I feel like I am a whirlwind of emotions – confusion, terror, anger, helplessness – are to name a few. From the 1st of September almost daily I will get another test result back from the private hospital, and then on the 10th I shall attend to see if they have decided to treat me or not. If they do agree then I cannot even begin to describe the relief I would feel at finally getting the correct treatment. But it would be very bittersweet relief as I would have to somehow fund this treatment.
Yet the panic I am already feeling about finances is nothing in comparison to the terror I feel about having to deal with the spasms caused by my Lyme Disease on top of my Dystonia again. I know that I have dealt with it all before so I CAN cope again, but I don’t want to. The thought of it sends me running for the hills. When my hands spasmed before I frequently used to tell my mum that I felt like I had pulled my fingers out of joint, I’ve recently been diagnosed with Ehlers Danlos type 3, which makes it highly likely that I was subluxing in my fingers. To be frank I am scared of the extra amount of pain that untreated Lyme Disease will bring. At the moment with oral treatment it is dulled down, manageable. Which has enabled me to learn to cope with Dystonia and the pain that it causes. I don’t want to go back to being rushed by ambulance in to hospital every month.
I have enough oral antibiotics to get me through to the middle of September at the moment. From our recent experience of coming off the antibiotics and the deterioration that that caused I am loath to go through it again. Its quite selfish really as I know a lot of my fear stems for not wanting to lose my hands again. I love being able to do simple activities such as brushing my own hair. It is a sign of independance and I get such satisfaction from being able to do tasks such as this.
The majority of my Dystonia is well controlled with Botox, and Benedict is not inflicting too much pain at the moment. I just want to maintain/improve my condition. In the meantime I shall keep my fingers crossed that the private hospital wants to treat me, and wish to the NHS fairy that they open their eyes and acknowledge chronic Lyme, and start treating us sufferers properly!!
I have put off writing this blog post for a few weeks now. Not because I didn’t want to be open about what I’m currently experiencing, but because putting it all down into words makes it all very real and I am finding it extremely hard to deal with. As I have mentioned before the doctors believe my Dystonia is caused by damage to my brain by Lyme Disease. I contracted Lyme Disease when I was six and have been on oral antibiotics for it since May last year.
A couple of weeks of a go I finished the last of my oral antibiotics. Although I had been told that realistically I needed IV antibiotics to cure my neurological Lyme disease, I had hoped that a year on oral ones may have been enough. Unfortunately it had not been and over the last few weeks my hand spasms, back spasms, vocal tics, fatigue, on/off functional paralysis etc have all come back. I have been coping with this the best I can, its been coming back slowly so I have had a chance to ‘adjust’. However now and then spasms will happen and I will have a bit off an emotional wobble. I cannot write anymore, I struggle to do my make-up, getting dressed has always been hard due to my Dystonia but throw in Lyme Disease and it takes most the morning to accomplish on a bad day. Yesterday I was just trying to pay for an item in a shop and my hand spasmed around the card reader, I could not let go. My friend had to try to yank my hand off it whilst the till worker pulled the reader out. I was mortified!
Yesterday I visited my GP who does not believe in Chronic Lyme, my mother and I went prepared to do battle. He is normally very dismissive of anything to do with Lyme Disease and had previously said to me that even if my symptoms came back he would not be willing to prescribe me anymore antibiotics. Thankfully he seems to have had a slight change of mind and has give me 2 more months worth. In this 2 month slot I have an appointment at a private hospital that are known to treat Lyme Disease, I am hoping that they will be willing to give me the IV antibiotics that I need to cure me. I am not sure how likely it is that I will get anymore antibiotics off my GP after this 2 month supply runs out. I started them today, and should hopefully see an improvement in the next few weeks. For now I am keeping my fingers crossed that this private hospital pulls through!
On a much more positive note I had my Botox injections last week for my Dystonia which means my jaw and neck will be in place whilst I am on holiday!
This week has been a complete rollercoaster of emotions. Beginning with excitement, this quickly turned into desperation and turmoil, concluding with frustration and nervousness. On Tuesday I attended a physiotherapy appointment, I was under the impression that this was to be the first of at least weekly appointments. I had been extremely excited for it as I was anticipating news of trialling a second skin splint which I was hopeful would make a difference to my leg spasms.
When I had seen my Neurologist last he had mentioned to me that he had spoken to my physiotherapists the week before to advise them on how best to treat me, and that he was very keen for me to start having intensive physiotherapy locally. He was also happy for me to trial the splint and did not say too much about it. So you can imagine my total shock on Tuesday when my physiotherapists told me that my Neurologist had advised her to discharge me and not to refer me for my splint! She was left with the impression after speaking to my Neurologist, that after I have my IV antibiotics for Lyme Disease and was cured of that then I could have physiotherapy. She was shocked to learn that I have been denied IV antibiotics by the NHS unless I have lumbar puncture, which my Neurologist has recommended I do not have as it puts me at risk of developing more Dystonia.
I left the appointment on Tuesday in a completely state of turmoil. Without IV antibiotics and without physiotherapy what chance of any sort of improvement do I have? I was furious with my Neurologist, how could a person have two completely different conversations within the space of one week. Then, Thursday afternoon, a follow-up letter from my last Neurology appointment arrived reiterating that he wanted me to receive intensive local physiotherapy. I could not be more frustrated, I can only presume that they must have had a rather ridiculous misunderstanding. Yet I question how that can even happen in the first place, the conversations reported are at extremes with each other.
I am seeing my Neurologist on Tuesday for my next lot of injections, so will be able to clear this matter up with him then. It took over a year and a half, with a lot of jumping through hoops just to receive physiotherapy, so to have it taken away after one session is not something I am going to let happen without putting up a fight.
Last Friday I attended my rescheduled Orthotics appointment. I was unsure whether there was anything they would be able to but my worries turned out to unfounded. The decision was made that no permanent alterations would be made over the christmas period as that would involve my splint being taken away. Instead elastic type material (but not as stretchy) was attached in a figure of 8 pattern to my splint over my ankle area, my normal velcro strap then went over this to reinforce it. If this design manages to hold my foot in place then my splint will be sent off to have these made permanent. At the moment it is looking positive and doing its job.
Yesterday I went up to London to see my Neurologist. He gave me my usual six injections, which have such a fantastic result. After showing him a photo of my foot in spasm that I took the other day, he has offered to next time administer some Botox injections to my calf and foot. I would be very interested to hear from anybody who has received injections at these sites!
I am still taking medication to treat Chronic Neurological Lyme Disease, since I started these medications around six months ago I have had amazing progress in areas affected by it. So much so that my neurologist even remarked how happy and amazed he was to see the improvements. I am still, with the support of my neurologist, battling to receive IV treatment for Lyme Disease which will hopefully get rid of anything the Oral antibiotics have missed.
Everything seems to be quiet calm for once. Now that the Botox controls my most painful spasms I have been able to reduce the amount of painkillers and muscle relaxants I take. This has resulted in me feeling much more with it and my brain feels less foggy. It all seems to be calming down just in time for Christmas and my Birthday, which is perfect!
This afternoon I was up in London seeing my lovely neurologist. As usual I went armed with lots of questions. I feel very blessed that I see such a lovely man, who listens to everything I have to say. His manner is very calming, I hate needles, but his calm attitude puts me at complete ease, I would never let anyone else stick so many injections in me. I was excited to see him and to show him how much progress I have made with creating my life around my symptoms.
We went through all my queries before my injections and he was so helpful with each one. He is going to write to my GP explaining that I need the IV antibiotics for Lyme Disease, I am relieved he has agreed to do this as it means I do not have to argue with my GP about it. I have a severe intolerance to Lactose, which unfortunately all but one of medications contain. At first this was fine as my body was coping with the small amount, but now that it has slowly built up in system my body is reacting and is making my other medical conditions, e.g IBS, worse. The most annoying issue with it is that no matter how much time I sleep for I wake up feeling like I never went to sleep and I find it hard to keep going in the days, my neurologist has offered to get the pharmacy at the hospital to look into alternatives for me. This would make such a big difference. We have also juggled around my next two appointment to make sure that my jaw is in working order for Christmas and my 21st birthday.
We spoke about my functional paralysis and agreed that in a way it was positive as it was less disruptive to life, although it is not ideal. There is not much I can do other than take pain killers and try to stimulate the part that is paralysed in attempt to disrupt the incorrect signals that are being sent – this has not worked yet but I shall keep trying. I had my eyes, jaw and neck injected with Botox so my spasms shall continue to my kept in check and my jaw tremor should soon settle down for a few weeks.
It was a fantastic appointment. I am truly blessed to have such a wonderful neurologist looking after me.
I am so angry right now. I have tried to get in to see my GP for about two weeks now, but as I have been unable to see him I asked him to phone me. I wanted to discuss having IV antibiotics arranged. When I saw my neurologist 5 weeks ago, he agreed that a lumbar puncture would do me more damage than good and that it was worth switching from oral antibiotics to IV. My neurologist put all of this in a letter for my GP.
My GP is usual a great source of help, and I usually think he is fantastic – however usual is the key word here. Today was one of those days where he was exceptionally un-helpful and left me in a rage. He stated that he did not want to arrange it as it would be “complicated”, and he wants me to come in so he can explain why it was “complicated”. When I pointed out the reason I had not been into see him was because he was fully booked in the evenings when someone is at home to take me, he claimed that was nonsense – I had to bite my tongue at this point as I’m sure the receptionist would not lie to me for 2 weeks about him being booked up. He then asked to speak to my mother!!!! Now I am sorry but I am 20, why on earth is he asking this?! Now my mother comes to all my appointments with me, but really what is so complicated that he has to explain to my mum instead of myself?
I feel disgusted, disappointed and disheartened. He wants ANOTHER letter from my neurologist about IV treatment. Luckily I have an appointment with my Neurological Consultant next Tuesday, so I shall explain and ask him to write another one then, but this is all beyond ridiculous. He already has one letter stating it, how will another one saying the same thing make any difference?
I could go privately and pay for the treatment myself, however it is very expensive and I don’t see why I should to do so, when my neurologist was happy for it to be done on the NHS. Why does the medical profession insist on picking a fight with me at every hurdle? All I want is to rid me body of the disease that caused my Dystonia, is that really too much to ask? After all if they had picked up on it 14 years ago I would not have Dystonia now!
Today I went up to London for an appointment with my neurologist. It went fantastically well. This was only the second time he has seen me with my jaw not in spasm, the last time was our first meeting last October, and he seemed very happy that I was not in agony this time. As usual I went armed with some ideas/questions that I wanted to discuss with him.
He brought up the fact that I had seen the infectious disease doctor the other week, and said that he was happy for me not to have the blood tests and lumbar puncture, but would arrange it if I decided I wanted it, and he was happy for me to get my gp to arrange for me to have 2-4 weeks of IV antibiotics. I am thrilled at this, as it was not a conversation I expected to have with him and it went completely in my favour. I have been on oral antibiotics for several months now, and adding IV antibiotics into the equation should hopefully get rid of whatever Lyme is left.
I had my usual injections in my neck and jaw, however after discussing the ongoing issue of my glasses setting off more eye spasms he decided to inject Botox around my eyes to see if this helps improve things. I am really hoping this helps as I am meant to wear my glasses for pretty much everything, so for a fair while now I have dealt with everything being rather blurry.
I brought up with my consultant that I would like to have CBT (cognitive behavioural therapy) to help me manage my pain triggered Non Epileptic Seizures and neuro-physiotherapy to see if that will help me with my spasms. He was great with this and agreed both would be a good idea and that if I went through my GP I would be able to have it done locally. He has also offered to speak to the neuro-physiotherapist, when I get assigned one, about my condition so that the physiotherapist understands it better and therefore can treat me appropriately.
Overall I am completely over the moon with how well the appointment went, and have left with a date in hand for my next lot of injections in six weeks time.
I am now on the final countdown until Tuesday when I have an appointment up in London with my Neurologist. Over the last few days I have gathered lots of different information so that I will be able to present a concise, confident and convincing argument to him. I do plan on letting him administer my Botox injections first though before getting into any debates with him!
I have a number of issues that I need to discuss with him. The first being the timing of the injections. When I see him on Tuesday I will be 6/7 weeks over due for my injections, this is ridiculous especially as the spasm and tremor in my jaw is actually now loosening my teeth! He has always insisted that the best and quickest way to get an appointment is by emailing him, however the recent months have proved this method to be useless so I shall not be leaving the hospital without an appointment.
Another issue I would like to discuss with him is Lyme Disease treatment. I am currently on oral antibiotics, however for late stage neurological Lyme Disease a mixture of different high dose IV antibiotics is needed. I asked my GP about this the other day but he wants me to get my consultants approval for the go ahead first. I am not sure how likely I am to get it, but I am going to try my best and will not give up easily.
I feel this appointment will decide if I shall stay under his care or not. As much as when I am with him I love him and have confidence in him, since April he has let me down. He has dangled hope in front of me and then never come through on his offer. I know this is not deliberate but at the end of the day I need to be under a consultant who can provide me with the treatment I need at the correct time and who will stay true to what he says.
I am very much looking forward to Tuesday though as I will finally get my very much needed Botox treatment for my Oromandibular Dystonia and my Cervical (neck) Dystonia.