My experience of Lyme disease and treatment in the UK

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Hello everyone, I felt it was important for me to share my nightmare experience of living with lyme disease, the struggle to get treated and the long journey to finally I hope remaining symptom free. This is my story.

I live in London. In 2010 whilst sitting in my garden I felt a sharp pain on my forearm. An strong electric shock type of sensation passed through my body. As I looked down I saw a tiny insect that looked like a 'money spider' attached to my arm. I tried to brush it off but noticed it was still attached to me some how. With some force I swiped at it till it fell off my arm. Despite being quite shocked at the electric shock feeling I thought nothing much of it.

About 48hrs later whilst at home watching tv one evening, I suddenly and without warning began to experience what I can only describe as flu like symptoms. My joints ached terribly and I began to shiver uncontrollably. I thought to myself, this must be what genuine flu feels like. I went to bed early thinking I was going to have to call in sick the next day. The next morning I awoke and felt completely normal. I found it very strange that I could experience such powerful symptoms and feel fine the next day.

A good 10 months later I became aware that I wasn't quite right. I had multiple (a long list) of symptoms that would rotate every 4 or so weeks, these included symptoms like; heart palpitations, anxiety, shortness of breath, dizziness, brain fog, heightened hearing, joint pain, vertigo, sensitivity to light, problems sleeping, sharp shooting pains in my head and body, waking up during the night as I had stopped breathing, sensations as if the ground I was walking on was moving, unable to concentrate, trouble with spelling and many many more symptoms. I thought I was going mad. I put it down to work stress but did visit my GP.

After a number of visits (over a 10-12 month period) to see my GP and my heart palpitations getting worse my GP sent me to a cardiologist. After describing my symptoms the consultant attached a heart monitor that I was to wear on my persons for 48hrs. On my return to the consultant I was shocked to hear that I had type two heart block. They told me that this type of condition usually required a pacemaker. I was completely shocked at their findings. I had never had any health issues and no family history of heart problems. They discussed the pacemaker option with me and said we could wait a little while to see how I feel about it.

Somehow I just knew that this had to be a result of something as I was having so many other symptoms. I began researching into possible causes and one disease kept coming up - LYME disease.  There, listed under Lyme disease were most of my symptoms. The problem with Lyme is that the symptoms seemed to rotated every 4 or so weeks and  new ones would also developed. I suppose that is why it is so hard for GP's to diagnose.

I visited my GP and insisted on a blood test for Lyme disease. After a bit of a giggle and telling me it was only a problem abroad, he agreed.

Nearly 2 years after the bite by the nymph tick the results came back POSTIVE for Lyme from a lab in Southampton. I was relieved that finally I was going to get treated and be cured of this nightmare disease. Little  did I know. I now know how fortunate I was to have a GP that was willing to test for Lyme disease despite initially being very sceptical. He was as shocked and surprised when the result came back positive.

I was sent straight from my GP to a consultant at my nearest hospital who specialised in tropical diseases. I was on a course of antibiotics that had to be administered via drip as the Lyme bacteria had entered my nervous system (obvious by symptom of heart block, shooting pains in my body). I would require 30 days of this treatment that would last 30mins each day.

I was so happy that finally this nightmare was going to be over. A few days into my treatment I began to feel a lot better. It became obvious to me that the consultant was very optimistic about the treatment and explained that my blood test results showed recent exposure to Lyme disease. I explained that my symptoms started over 20mths ago and this could not be possible. He never listened to what I was saying and it became clear that he was so clueless about Lyme and kept referring to the NHS guidelines on treatment and symptoms. He wasn't listening to my experience which would have obviously helped him with future patients. It wasn't just the fact that he was clueless he was unwilling to except anything else apart from what he had read in an out of date medical book and follow guidelines that were so inaccurate. At this point I just felt as long as I feel better I never have to see this idiot again.

When my final day of treatment arrived I was feeling great. As the days passed however, I began to feel my symptoms return. I was devastated. I had now read how hard it was to receive successful treatment with one course of antibiotics. Treatment is a nightmare when it comes to Lyme disease. The NHS have done little research and continue to believe that a short course of antibiotics will do the trick. A very large number of patients complain of reoccurring symptoms and are branded 'crazy' by the medical profession. My consultant told me 'it was all in my head' and refused anymore treatment. My consultant kept telling me it was all in my head.

From reading others experiences on the internet I knew that I had to try and find a cure myself. I began taking vitamin c, cat's claw, oregano oil, grapefruit seed extract, coconut oil, garlic capsules, using Epsom bath salts in my bath and following the salt protocol. I believe the salt protocol helped immensely although it tasted awful. I didn't use these all at once. It is better to rotate every month or so.

During this time I was referred to another specialist hospital who couldn't do anything for me. They stated that I had had the recommended treatment and the medical profession are unsure as to why so many people with treated Lyme complain of ongoing symptoms. Very helpful - not. I also had a brain scan there that revealed inflammation and areas of liquid (I have forgotten the medical term for this) caused by the inflammation. This helped explain the memory problems and other symptoms as the bacteria had made it's way into my head. My GP informed me that with time this will be dissolved by the body. I believe the salt protocol helped with this. It makes sense as salt helps dry out any moisture from the body.

Please be careful when trying the salt protocol. I found that a little goes a long way and it's not about quantity. That goes for any herbal remedy. Speak to a knowledgable professional before taking any herbal drug.

I cannot tell you what one herbal remedy did the trick, I believe it was a combination but 18mths on I am symptom free. I have had further heart tests and the heart block has disappeared. I have had blood work done and they have told me there is no Lyme disease (antibodies for it) in my blood. I recently gave birth and my baby was tested as a precaution and that came back negative. It was a long and very painful road. I know that's not what you want to hear. I wouldn't wish this disease on anyone. It was a living hell. The medical profession is clueless in its detection and treatment of Lyme disease as many off you sadly know and have experienced. Be persistent in getting tested. It helps to get a positive diagnosis from the NHS as positive results from outside the UK are not taken seriously. Insist that you have a blood test. Try a number of doctors. Be prepared for a long journey as nothing is going to work overnight. Be strong and persistent. Don't give up. There is hope.

I wish you all good health

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  • Posted

    Maria,

    I certainly sympathize with you,  I live in the USA and they are hardly any more vigilant here about Lyme.  My wife has been devastated by the disease.  

    She finally found a Lyme specialist, and has also been diagnosed with Bartanella, a related infestation.  The antibiotic regiments she is on is wreaking havoc in her body.  I'll be sharing your post with her, that's for sure.

    Thanks, and all the best

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  • Posted

    wow.....many congrats. there, not least on your perseverance/strength/recovery and the birth of your little girl. well done.

    i've just looked up the Salt Protocol & it doesn't mention any of the herbals you've included? is the 'herbal' also a protocol based on a specific dosage of each herb? do u know roughly what degress of success i.e. cure this treatment has delivered?

    Caitlin.

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  • Posted

    Thanks Maria. That history really chimes with mine. I'm almost two years on from a tick bite in Lewes, East Sussex, and though I'm still testing positive for lyme and experiencing various debilitating symptoms (though my immune responses are improving), the NHS response is 'You're on your own, you have been treated, it's all in your mind'. About a year ago, I even had this darkly funny exchange with a tropical disease specialist at a large South London hospital who said 'We don't think you'll be one of the sort who carry on feeling bad for a long time'. I said, 'I don't know what you mean, what sort is that?' She kind of giggled and said, 'The nutters'. Incredible. 

    Anyway, thanks for the info on the protocol which seemed to work for you. I'm three months into a protocol and still feeling pretty crap. But I will look into the other herbs you talked about. I've also been doing the Epsom salts thing for a few weeks now and not seeing any great improvements yet but will definitely persevere. Thanks again.

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    • Posted

      hi only just joined this forum i also got tick bite and rash in lewes i was just wondering where in lewes  you got bitten , also my dog has lyme disease as well and its not looking good 

      paul

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    • Posted

      Hi Paul, I got bitten on Glynde estate in July 2013. Huge rash, all the classic signs of lyme disease, but I didn't know what lyme was at the time. Had to bully my GP into blood test once I'd done some research for myself but didn't get treated until four months after the initial bite. Still suffering pretty badly two years on.
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    • Posted

      Hi thanks for your reply , i was lucky soon as i got the rash i got my antibiotics privately did a seven week course of doxycycline , i got bitten up in the combe opposite the esso garage ,sometimes ive come home with up to a dozen ticks on me so tend to keep off till the winter now .
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  • Posted

    I just wanted to say congratulations to you on successfully fighting this terrible illness. I'm so glad your baby is healthy too, you are doubly blessedsmile I too had a month on IV abx and felt much better but my symptoms also returned wihin a short time. What was the abx you had? Mine was Ceftriaxone.

    I'm just contemplating whcih path to take now, abx or a herbal etc one. Difficult decisions.

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  • Posted

    Hi Maria

    Thankyou for such a positive post and well done for not giving up.

    Can I ask you where you got your blood test done please.

    I live in te South and I am desperate to get some answers once and for all.

    Many Thanks

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  • Posted

    Marie

    Like everyone that has replied I am reAly pleased for you, it's fantastic you have been able to beat it.

    It's also nice you have posted as it's easy to just concentrate on the negative, which doesn't help remaing positive; which I think is vital in this struggle. So thank you for posting your story. It fantastic you have been able to have a healthy family, good luck for the future.

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  • Posted

    Hi Maria

    Your story is awful. Could i ask your advice or some one else who is reading this please.

    About "17" years ago i was working as a groundsman for a tree surgeon.Whilst under a tree what i believed at the time was a spider landed on my neck and bit me i remeber having to really brush it off. I told my mates i'd been bit by a spider and they just laughed and took the mick out of my bulls eye like bite mark for ages it was right on my hair line at the back of my neck. Is it possible I've lived with lymes disease for 17 years!? I went from being ultra fit, boxing, swimming, the hardest worker on the team to struggling to do a fraction of what i was able to do. I just lost all my energy. I've developed atrial fibrilation, i get a bit down in the dumps, just constantley feeling tired grumpy, seem to pick illness after illnes up. I went to the doctors about being constantley ill had blood tests done but  every thing came back fine, I never linked the "spider" (tick) bite to my symptoms so the docs didn't know about it. I never went to the doctors in 22 years and now i think they take me for a hypercondriac after complaining about the same thing 3 or 4 times and them saying theres nothing the matter with me. So i dont go any more. But if you or someone can confirm that it is possible to live with this disaese for 17years  im going to be booking one more appointment.

    I hope this message finds you in good health.

    Kind regards

    Steve

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    • Posted

      You need to go to your GP and ask for an NHS Lyme test, that is your right. You have a history of a bulls-eye rash (EM). If I was you I'd lose the 'spider' if you have another opportunity and just say you were bitten by something.. Does the rash ever re-appear> FWIW I never had a rash, was bitten by loads of stuff over the years..diagnosed with ME/fibromyalgia 10yrs ago. 18 nths ago got a positive Lyme test and  have all the symptms of Lyme. Believe in yourself, you're not a hypochondriac but its hard getting treatment.
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    • Posted

      Thank you Margaret,

      My wife is going to book me an appointment tomorrow, i'll post when i get a bit more news.

      all the best steve

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