This photograph was taken just after my discharge from hospital and as you can see, I was at the time in a paralysed state....unable to move or speak...(aww look at my lovely dog Scrappy, trying to get in to protect me). For me, although I now know I have been ill for at least 5 years, possibly longer, this whole nightmare all started and came to the surface on March 5th 2010 when my life was changed overnight forever. As I sat down to watch a film with my little girl Emily, little did any of us know the horror of what was about to come.
Here's my story....
Life was pretty good....I had finally got what i'd always wanted, I had met and married a good man and had the child that i'd longed for. In my youth I was a very sociable, outgoing person and had managed pubs for a living, but had stopped all this when I had my daughter and was content to spend all my time bringing her up properly....as family life had been all i'd ever dreamed of.
On a Friday night, I sat down to watch a film with Emily (Shrek 2, her favourite, I had lost count how many times we had seen it). We had gotten all cosy on the sofa with pillows and popcorn and a quilt and were planning a girly night with cuddles....Then, in a split second I had this severe sudden headache, I felt very sick and dizzy and I coudn't stand the light or noise from the TV. I quickly went upstairs and lay down, I felt really ill and thought to myself that I must have a migraine, so I lay in the dark and called to my husband to get me some paracetomal, and in the short time he took to come with them I realised I could not lift my head off the pillow or even move and I was in agony. He told me to sit up and take the tablets and I could hear and understand what he was saying ,but I couldn't speak to answer him....I wanted to, but my lips wouldn't move, or any part of my body....it was like I was paralysed and unable to react....he began to panic and was shouting at me to get me to answer him and telling me to sit up, but I just couldn't. Then I felt this strange feeling washing over my face, like a numbness and the words started coming out, but as they did my lips felt like they were swollen and I was making these uncontrollable, stuttering/jabbering noises....and it was like my mouth was moving and making sounds on its own....I had no control whatsoever and I began to panic....but I still couLdn't move, I was so scared.
My husband called the ambulance, thinking i'd had a stroke. When they came they coudn't put the light on because it hurt my eyes, so they had to use torches and five of them carried me downstairs on a sheet and put me onto a stretcher....I could hear what they were saying although I must have blacked out shortly after because I cannot remember most of what happened next and from what my husband witnessed I was admitted to hospital with a suspected stroke or brain tumour, or some kind of bleed on the brain. We have no family that help us so we had no one to look after Emily and she had to come with us.
I was given a chest x-ray, bloods were taken, a CT scan and my husband was breifed and pre-warned to prepare for the fact that I would probably be moved to Oxford in the morning for surgery on my brain, depending on the outcome of the tests, but that it looked like a bleed or brain tumour of some kind. So my husband and little girl stayed in the chair beside my bed and we waited for the morning.
The doctors came round and we were expecting to hear the plan and what had happened to me and instead were told that the scans were clear and that there were no signs of a bleed or tumour or stroke of any kind....while obviously that news at first was such a relief to us I still did not feel like myself. My head was foggy and felt mushy and hurt and I had no strength to even sit up let alone get out of bed, I still couldn't speak properly and everything around me felt strange....so what was wrong with me??
The doctors were baffled as all my bloods were apparently fine. I mentioned that i'd had a form of bacterial meningitis in my 20's and that the feeling I had in my head was similar to that and they decided to do a lumbar puncture....again the test came back clear!
After about 3 or 4 days I found the strength to sit up and my husband helped me out of bed into a wheelchair and showered me sitting down....that's how weak I was. By this time, the doctors seemed to be running out of ideas and tests as to what this was....they arranged MRI and MRA scans but said that things should have really shown up in the CT scan, but just to be sure.....and as with all the other tests....all clear. They seemed to be running out of patience with me then, as they coudn't test for anything else and yet I still could not get up and out of bed. So they put me on B12 vitamins and pain killers and I rested and after about 3 days started to find more energy, although my head still felt weird and when I eventually got out of bed and was encouraged to get up and back on my feet, I found I couldn't walk properly. The stroke doctor came to see me and watched me walk and did coordination tests (finger to nose, clapping hands etc.) and was baffled when I couldn't do them....I seemed to have all the signs of a stroke but the tests said I hadn't had one. I had other strange things happening also; I was extremely jumpy and sensitive to noise and light....my taste buds had changed and I fancied things i'd never liked in my life....my eyelids and nostrils kept twitching and I found it hard to find words to speak....and when I did, my speech was slurred, my head felt fuzzy and I knew there was something major wrong with me, as I didnt recognise any part of myself, it felt like I had been transplanted into another body. But as every day passed no further tests were offered and the nurses were losing patience with me and I knew they wanted me out of the hospital bed...my husband heard the doctors say after they had seen me, "Oh she's a weekend wonder!", and laugh as they had no idea what was wrong with me and wanted the bed back. For this reason I had planned to go home the next day and got dressed and packed my stuff and was waiting to be discharged ...as I sat on the chair my eyes and mouth felt strange and I was staring, I couldn't blink and again couldn't move my whole body, not even to reach the buzzer to call the nurse and I couldn't move my mouth or speak to tell anyone....I just sat there trapped and frozen....totally paralysed but fully alert in my mind and watching and hoping someone would notice me as I feared i'd be left like this forever....then another strange thing began to happen; tears started streaming down my face but I wasn't crying, it was mechanical not emotional and after what felt like a lifetime I slowly came back round. My mouth felt weird and I was extremelly thirsty. I told the nurse, and the doctor said I should stay in for another night.
By this time I had been in for nearly a week and the next dayIi had another attack similar to the one on the Friday night when I was admitted....it started with me laying on the bed and becoming completely paralysed and unable to speak and just as it happened the stroke doctor coincidentally had come to see me and he and a nurse lifted me up and placed me back down, he said, "This is not paralaysis, as your neck would not support your head" and he again was completely baffled as to what it was. I couldn't move or speak and then began jabbering/stuttering and going through the same thing that had happened nearly a week ago. They moved me to the stroke ward in the middle of it and I was panicking inside, thinking that i'd had another stroke, but after about an hour I came round and was told it definitely wasn't a stroke, as it would have showed up on the scans and that they had looked at them again. After the nurse had just unpacked all my stuff, I was told to throw it back on the bed as I would be being moved again to a different ward, which was just a general womens ward. I spent one night in there and told them I wanted to be discharged the next day as I had had enough of being looked at as some kind of attention-seeking nutter and being treated like a ping-pong ball, being bounced from department to department as they didnt know what to do with me or what was wrong with me and made it clear their patience was up....by that time so was mine as nobody was helping me.
I was discharged with the diagnosis headache, caused by neck pain, given paracetamol and an appointment review with a neurologist in 6 weeks time.
I was not the same person....and the attacks then were happening on a daily basis....sometimes several times a day. They began with staring and would lead to paralaysis and inability to speak and extreme fatigue. I could not function at all around the house so my husband took 6 weeks off work as I needed constant care. I thought by this time that I possibly had MS because of the difficulty walking, or motor neurone disease which affects the nerves and I was also having trouble swallowing and speaking and I know that you can suffer with this in your throat. We went to the GP who tested my reflexes, took blood samples for possible rheumatoid arthritis, as by this time my hands, wrists and knees had swollen and become misshapen and he also tested for hepatitis....and again all tests came back all clear. He tested my coordination and reflexes and they were slightly out and I had also started wearing sunglasses in the house as the light and noise were at times excruciatingly painful. I was in a complete state and the trip to the doctors which was the only time i'd left the house, left me completely exhausted and unable to walk and talk and the car journey made me realise that I had motion sickness without actually being physically sick....it was like the world around me was moving too fast for my brain to take in. The GP was so alarmed at my deteriation that he tried to speed the neurologist appointment up but had no joy and after 6 weeks we were finally seen expecting to get to the bottom of what was wrong with me. I had tried to prepare myself that I was probably going to be told I had MS or something similar as my gut instinct told me that I was too ill for it not to be anything serious. When your brain won't let you perform even simple tasks, like making a cup of tea or you have no control over your body movements, then you assume that its something neurological. So I geared myself up for the news only to be told by the neurologist "This IS NOT neurological and is definitely not MS or motor neurone." He advised my GP to put me on diazepam.
My husband and I disagreed with this strongly, as I knew 100% that there was something physically wrong with me and that it was not caused by depression. I spoke with my GP who knows me pretty well and my past medical history and he agreed.... but said that they can be used for a muscle relaxant as he was still thinking this might have something to do with my neck. We had a long conversation about the symptoms I was experiencing and by this time I had developed new symptoms and they left me thinking that this definitely had nothing to do with my neck and he would refer me to a rheumatologist .
By this time it was early May and I had still got to wait 2 months to see the rheumatologist.....so with no signs of me getting well and a diagnosis still of a headache, I began to research my own symptoms. I began looking at every possible condition and disease, from nervous breakdown to HIV and left no ugly stone unturned as I just wanted to know what was wrong and how to get better no matter what it was, or if it was shameful or sexually transmitted. I was sure to be completely honest with myself, as I just wanted an end to this. I looked at every disease going, but could not find anything that matched entirely, as by this time I had so many symptoms, both mild and aggressive and they seemed to change, or I would experience a new one on a daily basis. I wracked my brains and thought about my past medical problems and remembered i'd had a rash on my leg about 6 years ago. It didnt hurt or itch but was strange looking and I thought it was odd enough to go to the doctor with, he said "Mmmm, don't know what that is, does it hurt?" I said it didn't, to which he replie, "Well I wouldn't worry about it, see if it goes away in a couple weeks, if not come back and see me." So I did, and the rash dissapeared and I hadn't thought about it again until now, so I started looking up different kinds of rashes and tried to find one that resembled the one i'd had....I found my rash and it was linked to a disease called "Lyme".... which i'd never heard of. I nearly dismissed the idea at first, but it was the same rash, but i'd read it seemed to be an American disease and I had never been there. I thought i'd take a quick look at the symptoms anyway and they described mine exactly. The more I read, the more I found and I just coudnt stop reading, things were starting to make sense. Not only did I have every symptom and had previously had the trademark bulls eye rash, but I read how hard this disease is to find as it doesn't show up on standard blood tests or scans etc., and that you had to specifically test for it. I read of people in my situation that had been struck down with stroke like symptoms, paralaysis, meningitis and arthritis symptoms and all tests came back clear when they in fact had Lyme (borrelliosis) and co-infections. I was over the moon to have found other people that I could finally relate to and everything I was reading made sense of what had been happening to me. After continuing to read, I then realised that over the last 5 years or so I have been having some of the milder symptoms, but the major thing with Lyme is that it migrates (moves around the body), so one day my shoulder would hurt and i'd think, what have I done to that, I must go to the doctor, and then it would be gone....and a few days later it would be something else and so on and so on and the problem never stayed around long enough to become worrying enough to go to the doctors with. I had felt generally unwell for years and experienced many minor problems, but most things I had just put down to stress or age and carried on and tried to ignore them and there were lots of little things that you could excuse for lifestyle. I also read that although endemic in certain parts of America, it was also found all over the world so I was sure I had finally found what was wrong with me and was relieved to have some idea of what I was dealing with and now had hope of moving forward....little did I know that that was only the beginning of my hell and not the end.!!!!!!!!!
I excitedly told my husband about it all.....and phoned the GP and told him about the possibility of me having Lyme to which he agreed and said "Ah yes, you haven't been tested for that." He arranged a blood test. In the meantime I read more and learned that this bacteria is incredibly hard to find and the ELISA test that the NHS use is not as accurate as the IGENEX test which is a specialality lab for Lyme in America. The tests from the NHS were going to take 6 weeks and was tired of waiting around and impatient, especially now I thought I knew what was wrong with me. Time was of the essence, so me and my husband decided that we would go to a private clinic, one that tests for Lyme using this IGENEX technology, we coudnt afford it but after learning that it's hard to detect we wanted to give it the best shot.
So now I was waiting for two lots of test results and still due to see the rheumatologist at around the same time as the results were due back. I had read lots of literature and seen some documentaries of Lyme disease while waiting and learned that this was also a political disease in America and doctors were being struck off for treating with long term antibiotics and that there were two sides of an argument about Lyme and it's treatment. On the one hand you have IDSA guidelines who believe that Lyme is easy to treat with a 3 week course of antibotics, and that there is no "chronic lyme". These guidelines are followed strictly by the NHS. But on the other hand you have ILADS who believe and have proved that chronic Lyme does exist and is extremely difficult to treat especially if other co-infections are involved and that an IV should be used to pump antibiotics directly into the heart so that it gets into the brain. (This is the basic argument that is going on ..for more detailed explanations of this complicated issue please look at my links page.)
In the meantime I had been told by my GP to ring up weekly to see if my borrellosis (Lyme) test results were back. So each monday at 11 o'clock I would ring and would be told, "No nothing back yet." I did this for 4 weeks and then got the answer "Oh sorry there has been a lab accident and you need to be re-tested "...I was fuming at first because it meant more waiting but then thought how odd that out of all the blood tests that i've had in my life, especially in the last 3 months that this one would be messed up...but I had no other choice but to retest. I again began my weekly ritual of phoning to be told not yet and decided to speak to the GP again to see if he could chase them up to which he said, "Oh no, they are not back, I don't know how long they will be they, have gone to some fancy place in Southampton." So I had to just wait and kept myself busy by learning all I could about this disease, in between symptoms and periods of seizures, paralysis and chronic fatigue.
So i kept myself busy while enduring the long wait and did research on the disease and spoke to people suffering with it all over the world.I found a charity based organization called bada (for more information look at links page ) and spoke to a lady called wendy fox,who i had seen on a video on the internet telling her own personal story of lyme disease and how it had left her paralised from the waist down and partialy blind .....and although the nhs had treated her with a course of antibiotics they refused to give her further treatment even though the bacteria was still in her body and that she had to take a petition to downing street ,stating her case and others in a similar situation ...and still no one would help(wendy foxs story please follow this link ).This worried me obviously as i had never heard of the nhs refusing treatment before and i started to feel that my hope of getting better was going to be a real long road if not an impossible one... as the treatment itself is long and complicated and without any doctor to back you up or treatment from the nhs , it really would be a battle...i then learnt that this is what happens to everyone in the uk and there are so many suffering and self medicating as the doctors will not help them .. Also it is not covered by your medical insurance, at least nowhere near the full extent of the cost of the treatment .In America they have the same problem and will only cover the basic treatment of lyme meaning people have to sell there houses etc to find the money to cover the medical costs .Also doctors over there that go against IDSA ....and say that long term iv antibiotics are needed are called LLMD (lyme literate medical doctors) and there are only a few of them in the world because they are being struck of and not being allowed to practice these treatments even though they have made both adults and children well again and able to continue to live a life rather than be house bound or bedbound and living a life in constant pain and torture .(for more information follow links )
This had unsettled me but i still did not want to believe it and i know you can get a lot of rubbish on the interet and i was not going to let it inffluence me and would see how things went with me ..I phoned my GP again and was going to see him to just get a feeling about what he thought about this disease and its controversy ...I went to the surgery for my appointment and was told my doctor was not available and i would have to see another one ..i wasnt really impressed ..but then thought ...well it wont hurt to get a another opinion anyway...We took with us a list of my symptoms (which by now there were nearly a 100 of )and a diary of my daily attacks that my husband had kept for the six weeks after my release from hospital....We went in and the doctor said to me "YOU KNOW ,YOU MAY NEVER GET A DIAGNOSIS FOR THIS "...and he started talking about the diazapan ,that i had declined to take ..i said "i do not want to take them as i dont feel they will help me as this is something physical and went on to tell him i thought it was lyme disease and could he not prescribe me some antibiotics....he ignored that and said the diazapan can also be used as a muscle relaxant and what would be the harm in giving them a go to see if they helped ..i explained then that i had already lost complete function in my brain and there were times when it didnt work properly ..and i did not want to take a tablet that would make me lose reality altogether and take away the moments of clarity that i was desperately hanging on to .. i also said that they are addictive and the last thing i need is to lose control anymore and become addicted to pills and not know which was the illness and which was my addiction ...to which he answered "they are not addictive " and this is when i thought to myself what is going on here ..why is he trying to force these pills on me ..when im telling him i think i have lyme ..I said "yes they ARE addictive ..im ill ..not STUPID..even my other doctor warned me that i would definately become addicted to them ...so why are you saying this and why say to me give diazapan a try to see if it helps ....firstly when i have had neck problems before ..i have been prescribed dicloflex which is a muscle relaxant ...and also if we are going down the road of why not give things a try to see if they help ...why cant we try ANTIBIOTICS!!...he was really uncomfortable by now and i started to wonder what the problem was but really didnt want to get paranoid ....he said "ok ..im not trying to force them on you "..(well it had certainly felt like it )...so i continued to ask for lyme treatment ..to which he smacked his fist on the table and shouted YOU HAVE NOT GOT LYME ....STOP TALKING ABOUT LYME !...i was flabbergasted and scared of this reaction to things ...me and my husband looked at each other and he tried to show him the paperwork we had bought with us ,but he woudnt look at it and said ..you have an appointment with the rheumatologist ..that is your next step ...and we left, by this time thinking why wasnt anybody listening .!!!!
By this time, weeks had passed well over the time that i was due to recieve the results and id had enough ...i decided to phone southampton and asked for my results ...they said "yes they are here but we cannot give them to you" and that i need to phone my surgery and get the receptionist to ask for them. So i did this and she said she would get back to me after speaking with them ...and she called and said my results were negative.I asked for a telephone appointment with my GP ..and he phoned me and i asked again about my results to which he answered "apparently they are negative,that is the message i got " I found this reply really quite strange and asked what do you mean "the message you got ...have you not got or seen the test results to which he replied "no "and repeated "but they are negative is the message i got " This all sounded really weird to me and the doctor seemed edgy and stressed by my constant questions .I phoned southampton again and demanded my test results to which they said "due to the privacy act they cannot give them to me because i could be anyone." Anyway i was by this time really feeling there was something fishy going on as nothing made sense and the doctors attitudes were cagey and defensive... and then the private tests came through the door with a POSITIVE /POSITIVE result. I phoned my GP again and explained that we had done private testing as the elisa test that the nhs use is not as accurate as the igenex testing that was done at America and that i am sure this is what is wrong with me ,as ive had the rash ..ive got all the symptoms and looking back over the 5 years previously at my medical history everything then made sense that i had borrellia in my system and it had now gone into the final late stage and had crossed the blood borne barrier and that i would like treatment for this .......I then copied a map of medicine of the nhs guidelines on how to treat lyme according to them and sent it to him and booked an appointment to see him when hed had chance to read it.
I was still in a terrible state and had not left the house since march, apart from going to the gp which was a real struggle ...and we went to his office and he said hed read the paperwork and he agreed that there is a "possibility" judging by my symptoms which included bells palsey, which there are only certain things that can cause this and the others had been ruled out but he said "if i have got it, then i am in the late stages and that he is not prepared to treat me orally with doxycycline as he would not feel comfortable as it can be dangerous due to possible herxing and that i really needed to be hospitalized and monitored with an iv drip of antibiotics." This is what i believed the treatment was i needed anyway and thats what i wanted to happen and he said that i needed to see the rheumotologist who is also a md and he would help me with this as he is higher than him. He also said that he had spoken to the infectious disease clinic in london and asked for a referal there and that we needed to just check for hiv(aids)first and i said" yes no problem can we check for syphillis also .".to which he said" well you havent got the symptoms for that but we will rule it out anyway".so i was tested and both ....as usual were clear .
The next step was to wait for the rheumotologist and in the meantime i continued studying when i was well enough ...still searching for anything else it might be that i might have missed.,but when i had got the positive result it was a relief in a way and it made everything make sense of the strange things that were happening to me...the test had also said that the lyme had reinactivated my epstein barr virus which id had when i was a teenager and that i some kind of co infections ,i had already suspected babesia anyway and i really knew in my heart and instinct that this is what was wrong... and as every other disease was tested for and was clear,it just made it more positive .....and so i concentrated on how i would try and beat these bugs that are living inside me and fight it and hoped and prayed i didnt have to fight the medical system also..as i was tired but had no choice ..i could either lay in bed and cry about the situation and feel sorry for myself or try and do something about it and i really dont want these tiny bugs to win ,when i have a daughter who needs me and a husband who loves me and people all over the world in the same situation trying to hang on every day and keep fighting and spreading awareness of this unfair and horrific disease and the struggle to get treatment for it .
The day of the rheumotologist came and it just so happened to be the same man that had admitted me on cdu on the night of march 5th and thought id had some kind of stroke or brain tumour.He remembered me and i remembered him as he had been quite freindly and he had asked my husband on the morning after admission when the ct scan had come back clear "is she back to her normal self " and my husband had replied "no she is much quicker and sharper than this "and i lay there wondering what the hell had happened to my brain as it had gone and i fet so weird. I was treated appaulingly just before we got in to see him by this women ,who was supposed to be a nurse.... who really should not be in this proffession with an attitude like she had..... i was in a mess from travelling there and couldnt walk properly ,coudnt speak and my arms were paralysed. She aked my name and i coudnt answer or move and she repeated ...and then said HELLLLLOOOOOO really sarcastically ..my husband then spoke for me and she said "can you come in and get weighed "...i can hear everything but cannot respond properly ...my husband helped me up and i walked slowly and bent over and got weighed and sat down for my blood pressure to be taken ..the same nurse then asked my adress, to which i still coudn't answer ......and she was aggitated and finaly i began to get some feeling back in my mouth and started to speak and explained that" i cant always talk and will answer when i can" ..to which she said "yes im just looking at your notes to see if theres anything wrong with you "and i lost my patientce with her and her attitude and said "obviously there is something wrong with me as im not able to answer you ". They took my blood pressure and it was extremely high... and they asked "is it normal for me to have a high bp.".my husband answered" it varies when she is having an episode and so does her temperature". I was gradualy coming around by this time and we went in to see the rheumotologist and he said "can you take of your sunglasses" to which i answered "no" he asked" why because of the light or because you cant move your hands to do so "...to which i replied" both i cant stand the light and this right arm will not move at the moment ."..We spoke about my night of admission and how i had deteriated since and i said... i have lyme disease to which he answered" do you" and then my husband put the test results on the table in front of him..he took them in his hand, looked at them and then placed them on the desk in front of him ...he then put his elbows on the table and held his head with both hands and there was along silence ....."he then sat back up and turned towards us and said" what do you want me to do "..to which my husband said" i want you to admitt her and put an iv drip in her heart and pump antibiotics in ".."i cannot do that" he repied.......it felt like he was grasping for something to say and this is what he came out with... which if i was not seriously ill ....is really hilarious ..."do you think that the lumbar puncture hurt you?"..i coudnt believe the mentality of him saying this to me ....talk about grasping at straws and hoping that ive lost all my brain cells .."no....as this is the lumbar puncture performed whilst on the ward 3 days after the brain tumour /stroke started....to which i havent been right since so no it had nothing to do with the lumbar puncture ."...That must have given him enough time to think of his next way out of this... which was to pass the buck ...he then said .".there is a microbiologist within the hospital who deals with this and "HE IS YOUR MAN....IF I WAS YOU ,I WOUDN'T LET THESE TEST RESULTS OUT OF YOUR SIGHT FOR A MOMENT ".so we left with the rheumotologist saying he would get me an appointment urgently with this specialist ....and was made to feel like he coudnt wait to get us out of there and after leaving his office i went to get a drink of water and the nurse from earlier came over to us and ushered us out the building ...i truly felt like id been barred from the hospital.
I got home and checked this microbiologist guy out as i now definately had the feeling that for some reason or another the word" lyme "made doctors panick and either lie through there teeth or shift you on to someone else . I found a piece about him and the kind of work he does and it sounded really promising ...it spoke of long term iv antibiotic treatment at home and of how he was working at achieving this for people with certain diseases including lyme and other tick borne infections and this is when i started to really feel like there was hope and that i would be listened to and helped with this nightmare i was living .
I literaly coudnt wait to be seen by this man and my husband even phoned and spoke to him and he said that he had managed lyme cases before so i was thrilled and was due to see him in 3 days by this time i had many new symptoms and the attacks had changed again and got more aggresive (see videos) ..our appointment came and i was getting rapidly worse and now had developed even more difinitive signs that this was lyme ...erythema rash ,yellow toenails and feet and plaque on nipple areas I showed him the private test results and told him that i would probably need testing for co infections as i was extremely ill and that is usually a sign that you have contracted more than just the borrellia (lyme ) bacteria ..i then showed him the video footage and he then preceded to examine me which consisted of him feeling my stomach and listening to my heart and then checking reflexes.. i coudnt physicaly do some of the co ordination tests that he asked of me and was weak after the examination and he helped me up and he asked me to walk across the room and back , and then return to the chair which i did waiting to hear the plan of treatment and wondering why he hadnt checked out the rash or the toenails. He then said well we've got your test results and" this is not lyme" ..to which i said .." but the igenex test results say it is and with all the symptoms its obvious it is".He said well its not lyme ...this is not what lyme does" and i said well "what is it then "and he said "i dont know i cant see anything wrong with you . "Well this was an absolute joke of a thing to say to me and i was fuming,if you have seen my videos you will agree that there is definately something major wrong with me... that is clear for the eye and any sane human being to see..and also his statement didn't make sense ,saying this is not what lyme does and in the next breath saying he coudn't see anything wrong with me was a complete contradiction.....so by this time i was raging (which is another symptom of lyme )and i screamed at him .".what do you mean you cant see anything wrong with me ..are you blind"...and then just ranted about the test results in front of him and the rash on my bottom and the toe nails and the bells palsey and the fact that i coudnt walk or speak and that these were just some of the symptoms that were visibly clear and that i had nearly a 100 more on top ..""what are you trying to say to me that its all in my head?" I then began to cry ,beg and plead with this man to help me and said "you know ive got it, can you please just help me "...he kept shaking his head and woudnt look at me and i shoved the paper under him and slammed the table to get him to look at the results ..i screamed" look at me ..look at me "...and kept repeating you know ive got it why wont you help me ...i said" i wasnt leaving untill he helped "and my husband then took over the conversation and i tried to pull myself together ..my husband told him that he had a positive test on his desk and aretha migrans rash and the bells palsey and surely by looking at all this and the state she is in you could make a clinical descion to trial antibiotic medicine ...to which he replied .".we do not accept the validity of an outside labs (the best lab in the world ) test results" i said (even though i hadn't seen the test results from the nhs ).."but they were false/positive wern't they ..so it means i might just of had one band less than what you accept as the guidelines ...surely there is enough evidence ..putting everything together ...and seen as its my body it should be my choice to risk medication" ... he said ..."it's not up to you ".....to which i screamed at him ..."its my life and its not up to ..how can you say that to me " and he kept saying" sorry i cant treat her "...my husband asked" cant, because you can't see whats in front of your own eyes... or can't because they wont let you treat" ...to which he replied sorry i cant help you...
This was when the reality of this situation ,that is happening all over the world to many people ,really hit home.It was like everything i had read and watched was coming true and i felt like the documentary i had seen on lyme, i was now living in real life ...and that there IS more to this than just simply having a bacterial disease and that higher powers for some reason have total control over doctors as proffesional physicians and even over there human compassion and moral beliefs..... and there fear of losing there career . We now knew that we were living in the nightmare that we heard about ,but had refused to believe until now !!!!!!!!
I was completely devasted ... and was probably in shock for about 3 hours after leaving his office feeling hopeless and helpless and like there was no point in continuing.. as fighting this disease on a daily basis is really hard enough....i suffer ,24 hours a day as it never leaves you alone ,there is always something ,just some symptoms are harder to handle than others and is complete torture ...but to be abandoned by the very people that you grow up feeling safe with ..and the ones that are supposed to help you when you need it.. and the ones you hope your children will grow into.. really was too much for me to bear...and i felt like he had put a price on my life ..that was worthless.. i had lost faith in them now ..it was all a lie and i could no longer trust anyone in the medical proffesion as i had looked into so many doctors eyes and knew they had washed there hands of me .. I honestly don't know how i found the strength to carry on that night ..i cant tell you how close i came to ending it... but i did find the strength through my daughter and my loving husband who did not deserve me to pass the pain to them..... even though i so badly wanted my pain to end .
So i managed to make it through the hardest night of my entire life... and spent a couple of days trying to regain my strength for this massive battle and fight for my life ,that i knew i had in front of me. I still had this appointment coming up with the infectious disease clinic ,but by now had given up hope and knew that it would be a complete waste of time ,but i would go anyway and follow the nhs rules. This is when i knew that my only chance at beating this would be to get the press involved and make people aware of my story and the contraversy surrounding this disease ..and asking real people if they would help me ..as the establishment had so badly let me down and basicaly left me for dead at 36 years old !!
I went to london to the infectious disease clinic and the journey itself was hard as i am so poorly.We were seen and told from the offset that, "we were there to listen to his opinion and that we would not be discussing lyme until we had heard what he had to say" and i felt like a naughty schoolgirl that had been pulled up in front of the headmaster and was really tired of being treated so awfully when i was sick . He asked about where i had traveled to tropically and then in europe and then in the uk.... i reeled of the list of many places as i had travelled to all of these in my youth through barwork. He then said "well you havent been anywhere that is tick endemic and so its not lyme" ..i, this time, had no patientce to argue ,as the last time had taught me i was banging my head up a brick wall so i just sat there and silently disagreed with him in my head.So he preceded to examine me which was very different to the previous 20 or so examinations id had by other doctors...and consisted of my lymph glands down my body and my spleen....he had said he would check my eyes as i was wearing the sunglasses but after he had done his tests he told me to go back and sit down and did not again look at toenails,rash or the eyes . My husband then played him the video footage of me and my attack ...he watched about 10 seconds of it and said" thats enough "and then showed him the positive test results and he asked ..".who done these..."my husband replied "igenex" and he said "well i can get a positive result for any test i want if i send it to the right place "and then told me that the "Americans are all mental and blame every symptom they have on lyme" ....he said "dont get fixated with lyme "...to which i replied "im not fixated ..its just i have every symptom ..even difinitavive ones of lyme ..positive test results that are non biased .. and the most important thing is ...if its not then what is is ??..because i have seen nearly 20 doctors now ...who either tell me they dont know.. or we can tell you what its not ...or its a headache.... or a stiff neck ... or i may never get a diagnosis for this...or the last doctor who had the cheek to tell me there was NOTHING wrong with me...or its all in your head ....so believe me, im not fixated, i just haven't even been given anything else that it realisticaly could be ...and the fact that this is capapable of evading normal routine tests, which is whats happened with me is surely proof enough to give antibiotic treatment a go " "He then said that, as this is an infectious disease clinic then he was going to run 3 tests of diseases that are of Afican nature..... and although the timing is out as to when i should have got ill with these after my return from africa..... and the chances of me having them are next to none... he needed to rule them out anyway ....to which i agreed ,but wondered why this wasnt checked for in the hospital on my admission on that first night ..as they were made fully aware of the fact we had not long returned from a tropical country and they did tell my husband that all possibilities had been checked for ... Then we had the punchline delivered to us..in a very sinistar way indeed ... considering he had just told me that if he wanted to ,then he could get a positive result for any test if he sent it to the right place...one of the tests that he was running was for an African borne disease thats VERY ,VERY RARE.. but the only treatment for it is to pump arsenic into your blood ..which results in 3 out of 5 death rate anyway... I coudnt believe it ...one of the possible options that hed managed to come up with rather than even acknowledging there is even a slight chance that it might be lyme was of a rare disease that you had hardly any chance of surviving from the treatment...and it had sounded more like a threat ...and i wondered why he had no worries about putting arsenic into me but i was having such a tough time getting antibiotics .. i had also, before id found lyme gone through, like i said every disease going ..and had studied African diseases especially hard, as we had spent alot of time in Africa in the last two years and the symptoms and timing didnt match any of the diseases. . So id agreed to his tests (or death sentence )that he had given me... and then i continued talking about lyme . This is when i believe ...he used the sentence that it had taken the doctors all these months to come up with ...of how to get around this situation, without actually telling me they would not treat me long term.. He said i am going to put you on a course of doxycycline for 3 weeks..if you get better then it was lyme and you are cured...if not then it wasnt lyme. Heres how this interprets ...3 weeks course of doxycycline does treat and cure lyme disease if caught in the early stages ..ie after the bite of an infected tick ..or the trademark rash being present ...after that if left untreated it grows in your body and will eventually turn into stage 2 which is harder to treat... and if still not detected it will go to stage 3 ...when it crosses the blood borne barrier and enters the brain and internal organs and this is where i am at and is extremelly difficult to treat and the nhs are not willing to invest the time or money to see if long term iv antibiotics make a difference...even though it has been proved by real people suffering with the disease at late stage... who have had to raise money and sell there homes .beg and borrow to find thereself a llmd (lyme literate medical doctor) who specialisis in the treatment of lyme and its co infections and understands the complexitiy of the disease and of the treatment plan ,for life . Anyway i had finally got some treatment ,so i was happy with that..it was a start in the right direction at least and i had waited months and was in desperate need of it as i was severely ill by now and had been deteriating since the onset of the suspected stroke/brain tumour in march.I had now been registered disabled and my husband had been forced to stop working to care for me, and we had to move house because i could no longer manage the stairs and with me getting worse daily we had been so desperate we had even thought about just ordering the doxycycline of the internet ,but this is such a scary thing to do,to self medicate without even advice from your doctor and we had researched the treatment for Lyme and realised it is dangeroues and can produce whats called a Herxheimer reaction,which basically poisons your blood.As the antibiotics kill the spirochetes your body gets rid of them through your liver as they die they are toxic and if your body cant get rid of them in time you get this "Herx" which can be life threating if there are too many toxins and your liver cant cope...so we hoped and prayed for a doctors guidance as this disease itself is so complicated and the treatment even more so..all i wanted was a doctor who would understand and help me.. and take control....I was struggling to cope with my symptoms...... let alone try and work all this out but i had been left without a choice ..i was fighting for my life ..for someone to listen ..if i did'nt keep learning and researching what i needed to make me better ..who would ??The doctors had given up once the test results were clear ...i honestly felt like id been left to rot and die and if i didnt keep fighting for them to listen ..that is what would happen.So it was a relief to finaly get the medicine from a doctor that i believed would help and although he hadn't said it was Lyme that i had and it wasn't IV treatment it was a start and better than nothing and like the old saying goes 'beggars cant be choosers' and this is what id become... a beggar ..begging for someone to help save my life.
So id managed to get a doctor to give me some medicine after months of fighting and my new prayer was that it would work....i was desperately ill and not really sure how i made it through each day ..i had no choice i suppose ...but it was tortureoues..nothing in my body was working properly and i was getter closer to closer to death ..i spent the day looking and acting like i had severe brain damage and was suffering on a 24 hour basis ...if id have been a dog or any other animal i would have been put down through kindness and most days i wished i had that option but i had my daughter to think about and tried to keep strong and positive and determined to not let this thing beat me although i hadnt banked on fighting doctors as well as a disease and this was what sometimes was harder to deal with.My symptoms were bizarre and sci fi like ....very strange and weird things would happen along with times that i can only describe as pure torture...there were times when i was completely paralised and the only way my husband could communicate with me was by a slight movement left or right with my eyes and they even froze at some points and i was completely trapped and locked inside ..hearing everything but unable to react and would sit there so fearful that id be stuck like that forever ..there were times when i would have this sudden feeling of a pressure building up in my head and i would feel like it was going to explode ..it was like my lips were swelling up and i would begin making these uncontrollable noises as my mouth started jabbering up and down on its own and it felt like somebody had got a vice on my head and was screwing it tighter and tighter. There were times when i coudn't breath...i had many breathless periods and gasping for air but at its worst it was like an elephant had stood on my chest and stopped me breathing and then would take his foot of and then on again of again and so on and id sit there praying each time for it to release and let me breath again. Also my throat would close up and i would choke on my food ,drink ..saliva even.The left side of my throat had seemed closed permanantly but on some attacks my head would move into a tilted upwards position and i coudnt swallow or breath properly and i would just have to keep calm until it released. There were so many other symptoms.. far too many to list,nausea,weight gain,stiff neck,swollen hands,arthritus,bells palsey,burning pain,stabbing pains,electric shocks,twitching,shaking,noise and light sensitivity,slurred speech...and many many more. I would look and act mentaly disabled,my arms became spastified and my face would drop and become expressionless with a constant stare and my walking was strange,i could walk sideways but be trying to go straight ahead or walk into things and my arms and legs seemed to have a mind of there own ,sometimes id be bent over like an old women ,unable to straighten up and sometimes my legs would uncontrollably shake and id stay on the spot bobbing up and down when i was trying to walk forwards ..all the time this was happening i was trapped inside with no control wondering what the hell was happening to me and trying to stop it . I would also suffer terrible mood swings and i could begin laughing hystericaly for no reason followed by tears which was were like a wailing noise as if id just found out someone had died and this could switch to anger all in the matter of seconds and was terribly frightening because again i knew i was doing it i just coudnt control it and looking back at all this i lost a year of my life completely trapped in this state..i coudnt follow a conversation or manage a sentence,watch television ,read or write properly and i would suffer night sweats and wake up with my hair so wet like id had a shower ...id constantly itch and at its worst ripped my arms to pieces causing them to bleed..and was constantly exhausted but coudnt sleep sometimes. I would get random pains all over my body ,musles would ache ,stabbing and burning pains in my spine and my knees and shoulders,my wrist felt like it was broken but the pain in my head was the worst and i can only describe it as the worst hangover you have ever had and times it by a thousand and you are getting close to the feeling that was constantly with me .I sat with sunglasses in the house and at times had to be in a dark room and certain noises were excruciating ..my daughter learned that she coudnt open a bag of crisps or sweets and eat them in the same room as me and bin liners and plastic bags were the worst . Some days i would look like i had parkinsons,sometimes my symptoms fitted MS,sometimes ME,or motor neurone.or sometimes a stroke or simply the flu,it constantly changed but also had a strange 4 weekly pattern. There was so much going on with me ,rashes appearing randomly all over my body,i coudn't tolerate a hot bath when previously i had loved nothing more than to soak for hours in there and read a book and keep topping it up with hot water ,like my own private sauna.My hair was falling out,my skin had become shiny and wrinkled,my nails had rough lines appear on them,my feet turned yellow ,firstly my toenails and then in between my toes and then spread to the soles and became painful to walk on,i had a plaque of yellow appear on my nipple and after research found that yellow feet and the nipple were difinitive signs of Lyme as was bells palsey if you had ruled out the other 3 things (which i had done ). There was so much wrong and it was like none of my body was mine ..i didn't recognise it,it was like something had taken it over . So i was definately ready to try the medication and see if it would make any difference,if it did then surely that would be another reason to suspect Lyme and with all the symptoms and a positive test, enough evidence for a doctor to make an informed descision that it was .....all i could do was wait and see what happened and find out if i was on the right track back to health or not .
So i started on the antibiotics and felt no change for two and a half weeks and started to doubt i had been right ...was it Lyme??why wasn't i feeling different?? I had read in the research that it could take months to respond sometimes and some people didn't respond at all to orals and needed IV to make a dent in the infection,so it might not mean it wasn't Lyme if i did'nt respond but i had begun doubting the whole thing and was so angry that i had to work this out on my own (well with the help of my husband)i just wanted to know what the hell was wrong with me and get better. Anyway on the third and final week of the medicine i dragged myself out of bed as usual and made it to the kitchen table like i did every morning,it was hard work to get out of bed every day but i refused to stay there no matter how ill i was ..i didnt move once i was up i just sat at the table or would go back to bed but i felt like i wasn't letting it beat me if i got up...it would have been so easy for me to give up and lay there till i rotted. After sitting at the table and taking my tablets i actualy felt the urge to get up and do something..i hadn't felt like that before and still felt terrible but seemed to have some excess energy so as it was sunday we were having a roast which my husband had learned how to cook while id been ill and i started preparing it.I still felt terrible and my head was in pain but i sat down when i had a seizure and gave myself time to recover, but managed to cook the dinner around my symptoms.My energy level had picked up enough for me to do things in short bursts and then id have a fit but that was an improvement on not being able to do anything at all and my head although still foggy and not completely with it with the help and guidance of my husband i could work out in my brain what to do next which was an achievement and the first normal thing id done since id been ill . This was great and we were excited but i was going to run out of medicine that week so my husband decided to phone the GP and tell him that id had such a good day and could we have anymore antibiotics as they had just started to make a difference...he replied that he was'nt comfortable at prescribing at such a high dosage and that he would speak with the dr at the infectious disease clinic and see if he would prescribe more.In the meantime i took my last dose of medicine and within 12 hours of stopping i had a severe attack which began with shaking like i was a parkinson patient and with a new symptom of a parlised tongue and i began to go downhill again.My husband phoned the GP to let him know that i was really ill again but we had to wait to hear from the London hospital and we prayed for him to give me more medicine. He finaly agreed and gave me 3 more weeks and we also had an appointment to see him in 2 weeks. I started the medicine again but didn't feel any better or recover from my setback and spent 2 weeks sleeping and on the day of the appointment like some crazy coincidence i had a day feeling ok again...i had again more energy and felt like id got my brain back a little and i was more on the planet than i usualy felt and could think more clearly . The last time i had seen this Dr i had gone in barely able to walk,bent over ,looking mentally disabled and had not been able to follow the Drs conversation or answer his questions as i struggled to get my words out and not only stuttered and slurred but half way through the sentence i would forget what i was talking about and would look at my husband helpless and he would remind me what i was trying to say . My husband had said i looked that bad that when we went in the last time he could see all the patients in the waiting room looking at me and they must have been thinking something like ..i wonder which country she has been ?i dont want to get whatever shes got. Yet this time i walked in looking a little straighter and was able to answer and speak more fluently and the DR could see for himself a clear improvement and by this time i was convinced that the medication was easing my symptoms and given enough of it there was hope and i was angry it had taken so long to get simple antibiotics out of a Dr and still wondered what the whole problem was with all this as something about Lyme turned doctors into liars and to become defensive and unwilling to treat or admit to its existance and i didn't know or understand why. Anyway on this occasion he was helpful and pleased to see the improvement and said that he didn't want to stop the medication too early in case the infection hadn't gone and that as i was doing well on it he would prescribe another 4 weeks. I was thrilled, if not a little shocked as i didn't expect him to say this and although he never said what infection it was or mentioned the word Lyme i had got more Lyme treatment and was not going to ruin it by questioning him about it, i was just pleased id got the medicine i needed and we left his office with him saying that next time he saw me id be better and be running in. So i took my meds daily and although remained very poorly and still had many symptoms,they seemed to be getting milder and lasting for shorter periods and i had longer periods of energy than before and i definately felt like i was heading in the right direction even though i still had a long way to go.and that when i had stopped it had felt like i was slipping backwards. I explained this too him on my next visit and i was hoping he would again extend the medication but he disagreed and said that the infection is now dead and what i am left with is the damage it has done and that this would heal naturally in time ...he coudn't say how long a period of time exactly but he would expect me to feel better in a period of 18 months. After reading up on this in our own research we knew that this just isn't true and he was giving me the post lyme speech which is what the doctors use to explain to patients with Lyme still feeling ill after treatment that they believe sufficient ..they refuse to believe there is a chronic persistant infection and say whats left is damage that the infection has done to you and yet i am speaking with people all over the world who are improving and have got well again after long term antibiotics. So its back to who do i believe ...do i trust in real people who have been exactly where i have been and continued on medication only to improve ...only to relapse as soon as medication is stopped and some have fallen so far into the disease they are now permanately brain damaged or worse...which was after all where i was heading and that.. i know for sure and i also know i am gradualy feeling better ....or do i trust this doctor who firstly said i don't have Lyme ...secondly said if i did id be cured in 3 weeks and then prescribed another 7 weeks Lyme treatment without saying if i had Lyme or telling me what was wrong ...and then telling me my infection was dead definately ...even though he seemed to have not told me what the infection even was ..!!!! At the same time i had also been told by a private doctor that i had Lyme and the epstein barr virus and had results in black and white showing this and he had also tod me that i was showing signs of babinski which is how close you are to developing an autoimmune disease like MS.. This Dr said he would now discharge me and i coudn't believe it ..what did you have to do to get treated ...i still wasn't any the wiser from him ..he hadn't diagnosed me with anything ..had found a treatment that worked and stopped it halfway through telling me i was better ..when i wasn,t...so we knew by this time we were fighting a losing battle with the nhs and that id actually been lucky to get more treatment than most lyme patients get..only because he never used the word Lyme and i knew that i needed to continue with the medication (finances permitting)and that the private dr was my only chance of getting well. I played the game with him and did not question anymore as i knew we were banging our heads of a brick wall and i woudnt get any more medication from him so instead asked about getting my brain tested to see if the seizures are causing permanant damage and he said i need to refer back to a neurologist for that...so my husband again phoned the Gp and asked for a neurologist appointment for tests ..but i didn't hold out much hope as it was a neurologist that i first went to see at the start of all this and all hed done was try to put me on diazapan. In the meantime we were out of doxycycline and i began deteriating again..the symptoms came back and i was again getting worse ...that was the final straw and more than enough proof in our book that no matter what these doctors had said the facts of what was happening to me without medicine spoke for themselves and i needed antibiotics and all the stuff we had read about on the internet about doctors not treating or believing was right ..we had proved it to ourselves and knew for sure the doctors were wrong and this was happening all over the world ..and there is nothing you can do about it if you have no money ..you cant get medication you need.... and are desperate
This is when this appeal came in ...my husband had started setting it up at the beginning ...when we heard all the horror stories of not being able to get treated but we didn't want to believe it and hoped that we would never have to use the money and we would give it to research but we needed it now and we looked at the medication plan that the private doctor had given us and to treat me oraly it came to 2,000 for 3 months..and we knew there was no way we could raise this money so we picked out the very least that i needed to keep the symptoms at bay which was the doxycycline to treat the Lyme and the arsenute to treat the epstein barr virus and the co infections(the nhs had not even picked up my epstein barr virus or did not tell me that my reflexes and responses were showing signs of babinski and how close i was to an autoimmune disease) So we used the money you so kindly donated and the money that my freind Neill McALL had raised by running the New york Marathon to get these drugs under the watchful eye of a private doctor and i could afford to go back to breakspear where i was referred to the top Lyme specialist( a lovely lady) and im happy to report to you all that it is working and im so thankful for your support and donations that are keeping me alive. I still have a long road ahead and i need you to please stay with me and help me and my family because the medical system has completely let me down but i am feeling stronger daily ...the attacks are so much more milder now and the symptoms nowhere near so aggressive ..there are times when i actual can now feel nearly normal ..the difference in me is huge and i cant do it without you.....2 days ago i woke up for the first time in nearly a year without a headache that id carried constantly .so the medicine is helping keep the symptoms at bay and i just need to hope and pray that my liver and stomach can keep on dealing with the dosage of antibiotics because if that gives in im done for and IV would be my only hope . We have just been back to see the private doctor again using the money you have kindly given us and she has put me on some more medication to help support my stomach from the antibiotics and also to help bust open the cysts that the spirochetes form to hide from the antibiotics and has said that my risk from babinski has settled down so im definately on the right road to health..she has taken a test to see how im doing at killing of the lyme and its just a case of keep on fighting and praying and raising funds and awareness.
As for the Nhs ....we lost the long fight with them. I went to see the neurologist that id asked to test my brainwaves and he was so arrogant and patronising and i was completely sick and tired of being treated this way.He refused to do anymore testing and told me to accept the fact that i hadn't got Lyme and these so called symptoms that i was experiencing were specific to me and they were in fact whats called "The Sonia Smith disease".(.even though there seems to be thousands of people around the world suffering with exactly the same symptoms)He said "if i stopped being fixated with Lyme i would get better"in otherwords ITS ALL IN MY HEAD...even though they have found slight oddities with my blood tests including high lymphocotes and other white cells and a high liver ..these facts were ignored and the private results disregarded and he is sending me to see a psychiatrist in Oxford (even though the private doctor who diagnosed my Lyme disease is a TOP PSYCHIATRIST/ENVIROMENTAL DISEASES SPECIALIST.) I cant tell you how this feels,to know your seriously ill and to be spoken to and treated this way ..when they dont even have the decency to read your medical notes properly or spend enough time to make such a serious decision and you cant argue because it makes you look crazy and so you are completely alone and feel like they are trying to send you mad . I feel like ive been left to suffer when i could be treated and i get so angry sometimes i think if i died then they would believe me...i know that i have to learn to live with it and just do the best i can do no matter what they say ..but it really hurts and im so thankful for the support of my husband and the freinds who have stayed by my side and not abandoned me and for helping me and my family not feel so alone. I want to tell the world about this so it dosen't happen to them or someone they love because it is so very unfair and unjust and its a fight that you cannot win and learning to accept that is very hard. I live every day trying not to let the situation destroy me and my family or our view of life but it has damaged me beyond repair as i can no longer trust the authorities that i believed were there to help us and i have learned that this disease is being kept hidden and people left suffering and to know that is more horrific than the disease itself.!!!!!!!!!!!
So im begging of you.. if you can please help in anyway ..by donating even a £1(click on donate button below... or by fundraising ...(check fundraising wall for current events ..coming up is the IRONMAN competition and if you could sponser Neil Mcall who is taking part to help raise funds for me or print of a sponsership form and ask your freinds and family to help and spread awareness of Lyme by doing this...also please have a look at and join the facebook group where there are videos and photos of me and my condition...http://www.facebook.com/group.php?gid=134675306560444 if you have any queries please contact email@example.com or if you would like to send a cheque please make payable to The sonia smith appeal fund 35 Green Street Ryde Hampshire Isle of wight PO33 2QT England
or pay in to any Barclays bank ....Account number 23313832 Sort code 20-17-35
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