What we need to go through just to get treatment

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I was a 42 year old healthy woman with an active full life with a wonderful husband David and two kids, Sarah and Jack until October 2002.

I was sitting having dinner, when suddenly I felt a stab/tingling-like jolt in the back of my neck, chest pains, my heart started racing. I physically felt very weak, my body felt very cold and I felt very dizzy. I went outside and sat down trying to catch my breath. I could not get the symptoms to stop. It felt like my body was in a bubble. I felt pain from between the shoulder blades all the way up the spine to the neck. I had to go to the bathroom, I had diarrhea. I tried to settle myself down, so I went to bed. I was feeling so weak. I got into bed and my body started shaking (like I had the chills), I got a hot water bottle and tried to relax. I was scared. I did not know what was happening to me. My body was tingling all over. I thought I was gonna die.

The next day I went to my doctor, (in Hexham) she put me on a heart monitor, and did a scan of the heart, everything was fine. My doctor gave me beta blocks for the palpitations, then sent me home. But my symptoms did not go away so for the next few years it seemed like I was going to the doctor at least once a week. My GP did sent me to different specialists according to my varying symptoms (i.e.,: heart, back, etc). My GP took loads of blood tests and they all came back normal. The GP could not figure out way I was feeling the way I did, it was a mystery to them. At one point my GP thought I was depressed, so she put me on anti-depressants, saying they should help. They did not help, in fact, I think it made many of the symptoms worse, so I stopped taking them. My whole body ached all the time. I remember going to the circus with my family (even though I really did not feel like going) and my arms hurt so much I could not even clap my hands, just raising my arms ached.

I really did not feel like doing anything much, I was tired all the time, and I was scared to travel far from the house. I was in so much pain. The only time I was out of pain was when I was sleeping, unless I was woken up by heart palpitations. I went to A and E so many times, but they could not find anything wrong.

Then on morning of 26th June 2006 while doing my ironing, I happened to have a TV show, “This Morning”, on in the background. I enjoy watching that show while getting things done around the house. Anyway, this particular day, Dr Chris Steele was talking about Lyme Disease, and some of the more regular and debilitating symptoms included, chest pain, back pain, terrible headaches, pressure in the head, painful/stiff neck, blurry vision sometimes, seeing spots, buzzing/ringing in the ears, diarrhea, hiatus hernia, shortness of breath, rib soreness, unexplained chills, night sweats, heart palpitations, unexplained shaking, fatigue, numbness in body, tingling, dizziness, lightheadedness, mood swings, feeling like losing mind, stammering speech, difficulty in thinking sometimes, memory loss, loss sex drive, weight gain, pain migrates to different to parts of body, always feeling unwell in general. Well, after the show I went on to the internet and got some more information about Lyme Disease. My husband and I remembered a bite of some kind on my arm. I thought it was a mosquito bite, although now looking back at it, the bite ‘ached’ more than it itched. At the time it never dawned on me that it may be related to Lyme Disease as it was not something I even knew about. So for the first time in 4 years I was hopeful about these findings – connecting some of the dots that none of the professionals seemed to be able to connect. Maybe I finally figured out what is wrong with me. (I COULD FINALLY BE CURED).

Well, I went to see my GP yet again, but this time armed with the knowledge of Lyme Disease, but she refused to give me the test. She told me that Lyme Disease is not in the UK, it is an American disease, even though I had the bite on the arm and most, if not all of the debilitating symptoms of Lyme Disease. Instead she offered me some counseling and another prescription for antidepressants. At that moment, I knew this doctor was missing the boat. I had nothing whatsoever in my life to be upset about, nothing to be depressed about (other than all of these symptoms and the pain) and couldn’t imagine how she leapt to that conclusion. My GP stressed to me I had every test, X-ray, MRI, CT scan and they all show normal, except the MRI scan of the brain it showed small vessel disease (white matter). So maybe I should just get on with my life. So I left without a blood test. I was totally confused and I feel like someone burst the bubble of hope for me. I never thought for a moment that a doctor would refuse a simple blood test even if there was a remote possibility of something like this. How could that be? I never went back to that GP. I knew she wasn't going to be able to help me.

Dr Chris Steele spoke about Lyme Disease in the UK, and here my own GP tells me different. So how come I have the symptoms of what I think is Lyme Disease then.. I sometimes wonder if all the doctors I've seen knows what it is like to go through something like this. I am frozen in life not wondering what will happen next. Will anyone ever find out what is wrong with me. This all seems like a very bad nightmare.. The pain, the sweats, the crying without cease, the feeling so sick, so sick I could barely reply when spoken to, sudden fevers, the pains in my bones, feeling like I cannot go on anymore... Everyone that sees me says I look fine from the outside. but I am in so much pain inside...

I changed GP in the bid to get an answer for my illness, but no such luck. I continued to go to specialist after specialist – 25-30 of them from 2002-2008 (heart, back and pain specialists, Rheumatologist, Neurosurgeon, Neurologist - you name it, I went. (I was lucky enough to have private insurance through my husband's employer).

Many doctors tried. None had answers. Some thought they had answers – one thought it was a trapped nerve at the top of my spine for which I had surgery. Another told me to have a hysterectomy, so I did. I was desperate for some kind of relief. Another specialist diagnosed costochondritis; another specialist saw, through an MRI, that I had small vessel ischaemia, which I now know to be related to Lyme Disease. I even had a Lumbar Puncture because of the headaches and found that the opening pressure was high and prescribed yet more medication which gave no relief.

As the years went on my headaches, chest pains , etc., got worse. Then in 2008, 6 years after this all started, I asked a new Neurologist if he thinks it could be Lyme Disease. I always kept the thought of Lyme Disease back in my mind. He did not think it was, but be said he would write to my GP and ask for a (NHS) Lyme test to be given. I told him that in 2005 I asked for a Lyme test, but had been refused the test from my old GP.

While I was waiting for my Lyme test from my GP, I did more research on the internet and I found a Lyme Disease support group called EuroLyme. I decided to post my story and my symptoms to the support group, and within a few hours, I received tons of e-mails back, all agreeing that I have the symptoms of Lyme Disease, many describing their own frustrations and experiences dealing with a medical community fundamentally ignorant of Lyme Disease and it's symptoms. The support group recommended that I go see a Lyme Literate Specialist rather than relying on the NHS-approved blood test, as from their experience the NHS-approved blood test comes back negative 95% of the time. It has something to do with the compounds they use for testing. It is not accurate enough.

Anyway, 21st Feb. 2008, I went to a Lyme Literate Specialist. He identified by microscopic examination of my blood, a borreliosis. This result, combined with my symptoms was sufficient for him to diagnose Lyme Disease. In the 6 years of suffering I finally felt heard. Of course, I was furious with all the GP's, and specialist I went to, too. He immediately prescribed an antibiotic while he continued to culture and examine my blood samples. He then prescribed a more specific antibiotic based upon his findings. He claimed that I should some improve in 6 - 8 weeks, although, because I have now had Lyme Disease for so many years now, it may take longer.

Just after that appointment, I received my appointment to see the local nurse for a Lyme test as requested by the Neurologist I saw. I really wanted to take the NHS test, as I wanted to see what my results would be. More than anything, I was curious about the results, given that I had heard so many bad things about the NHS-authorized Lyme test. Even though I know all about the NHS test. I had the NHS blood test, and it went off to one of our local hospitals.

I then started my Lyme treatment from the Lyme Specialist, while I waited for my results from NHS. Well, weeks went by and no results, so I contacted the hospital my blood went to, and the nice gentleman I spoke with said they were storing my blood, because they had no idea what they were testing for, as the nurse/GP did not state it on the forms, and they were waiting for my GP to contact them. Well, I told the gentleman that it was my blood, I told him it needed to be tested for Lyme disease, he then told me that Lyme Disease testing is done at Southampton, and he would send my blood to Southampton for testing. Again weeks went by, and no results. I called Southampton, and they told me they had no record of receiving my blood. This was unbelievable. I was angry. It took years to finally get a NHS test and it all went wrong. I started thinking that maybe my GP really did not want me to be tested. So I gave up getting this blood test done. The GPs couldn’t even get this right. I continued on my treatment from my Lyme specialist.

In June 2008, I found out there was a Lyme Specialist closer to my house, so I went to see him, and again he agreed with the other Lyme Specialist I saw. With all the symptoms I was having was enough to diagnose me with Lyme disease. This specialist also did his own Lyme blood test, but it was sent to the States for testing. A few weeks later, the results came back as full on Lyme Disease and loads of co-infections. My new Specialist wanted me to have IV treatment ASAP, so he would arrange for a Hickman Line and he would write my GP about the necessary medication. The day I was supposed to get the Hickman Line put in, I received a letter through the post from my GP saying she did not agree with the IV treatment, and she would not authorize the medication. I asked her why she would not, and she told me that I was never diagnosed with Lyme disease from NHS, and she did not want to put her License on the line. I did try to explain to her that I tried to get a NHS test but the blood never went to the right hospital to be tested. She did not say much. My Hickman Line had to be cancelled that day. However, a few weeks later I finally got the line, and my IV treatment started July last year, nearly 7 years after starting to get ill. I had the IV treatment for 12 weeks. I had a private nursing company come to my house everyday. My private insurance company covered the cost. My Lyme Specialist kept my GP informed of my treatment but it seemed to me that she was not interested. All I could think about was all of the people who did not have private insurance and who could not find someone who could actually help them rather than think they are crazy and prescribe anti-depressants.

After my IV treatment was finished, my Lyme Specialist prescribed 3 months of oral medications. They cost me £900 as my GP would not give them to me on NHS. This I did have to pay for, as my private insurance does not cover oral medications. I had to take the meds, as it was all part of my treatment. I finished the meds just this past Jan, 2009. My Lyme specialist was very happy with my progress, at this moment, so he me off all medications. He wanted to see how I would do without the medications. However, 3 months later, I started getting some of the symptoms came back, so my Specialist put be back on medication. My specialist was not surprised with the symptoms coming back, as I had Lyme disease for a long time, it will take a while to clear. He had told me previously that it was possible this would happen. I have had Lyme Disease for so many years now and these borreliosis don’t die off easily. This could take some time.

In the meantime, I keep educating myself, by watching a movie called, “Under Your Skin”, a documentary on Lyme Disease. It was hard to watch, especially because people are dying from this completely treatable disease, but I was glad I did watch it. There are so many symptoms, so many people who have this, it is unreal. And yet, there is so very little education of the medical community on this disease.

In November 2008 my GP offered me to see an Infection control specialist in Newcastle General Hospital I went to see the Dr, (as I really wanted to make peace with my GP). The Dr wanted to do his own NHS Lyme Disease test. (my Lyme Specialist told me of the risks of taking the NHS test especially since I already started my treatment (IV and then oral medication, and I was on the oral medications at the time I was offered the NHS test by the Dr ). The Lyme Disease results came back negative. (no surprise to that result) I did call a Dr at Southampton (the lab that does the NHS test), and asked he a few questions about the Lyme test, and she got really defensive about the questions I was asking her, she hung up the phone on me. I then contacted the manufacture that supplies NHS with the Lyme Test, and they told me that I should have not been on treatment at the time of the test, and that the test has a lot of false negatives as well as a lot of false positives, and that Lyme Disease is also diagnosed by simptoms. I brought this information to my GP and still he fused to accept I had Lyme Disease. (because of the NHS test). But the NHS result did not stop me from continuing my treatment with my Lyme Specialist, as I was finally feeling better.

My specialist also requested I have a Neurophysiological Assessment of Autonomic Function test, to see if I have any nerve damage. Again, my Lyme Specialist wrote my GP to see if this test could be done on NHS if the PCT approves it, however, the PCT did not approve it. I had the test done anyway. Thankfully, my private insurance paid for it. I had the test done on 01/05/09 at Barts of London by a well respected Specialist Autonomic Neurophysiologist. My results showed that I have nerve damage caused by the Lyme Disease (there is no treatment for this), chronic respiratory acidosis, supine hypotension, abnormal spontaneous brainstem activation, excess carbon dioxide do to the toxins of the lyme. The specialist advised me to have supervised breathing exercises (Butyeko) to try and remove the excess carbon dioxide. I wrote my GP asking to refer me to a Butyeko specialist and he refuses to write the referral, he told me that my Lyme specialist or my Neurophysiologist should refer me some place in the private sector. (even though I have given my GP all the test results)

My Lyme Specialist did some more blood testing to see how my immune system is holding up. The good news is that my immune system is fine. (this blood test was called CD57, and my blood was sent to Germany, again I had to pay for this test to be done) How is it possible that these other countries – the U.S. and Germany have better and more accurate tests than the U.K.? How come the medical community is in such denial here? I keep asking myself these questions. If I had the first blood test done over 6 years ago, I might have had to go through a few series of antibiotics. What, would perhaps cost £100-£200. Now, I can’t even begin to think of the thousands and thousands of pounds spent with continual mis-diagnoses. My youngest child, Jack, only really knows me with Lyme. I find this so sad. My daughter remembers me without it. She wants that mum back. So do I. So does my husband. But, I am lucky, I have a loving family who has stood behind me and by my side as I have had to navigate the mess of our medical community. I wish this on no one. Truly.

I am feeling loads better since treatment, I know I still have a way to go to be 100% but at least I have my Lyme Specialist, my hero. I had no help from my GP/NHS, only road blocks. Only excuses. Only continued mess-ups. Only denial.

I always knew this was not something in my head The doctors seem to be so unbelievably unsympathetic or uneducated about the subject. I would still be suffering and searching for a diagnosis and a cure – probably having more unnecessary surgeries, taking more unnecessary drugs and most importantly, losing a quality of life I would never be able to get back. Even though I was initially denied the medical tests that could have diagnosed Lyme Disease early and possibly cured it with a simple course of antibiotics, many years ago. Now, if only doctors would begin to educate themselves, people would be able to get treated and cured a lot faster!

Lyme Disease is more common than doctors are willing to admit, for some reason.

I took my story/case to NHS complaints and lost. Then I took it to the Ombudsman and lost...

I am still paying for my treatment.

Ellie

Hexham

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  • Posted

    Hi Ellie

    I have heard parts of your story before through knowing you on Eurolyme but what you have written hear is so shocking that you have been treated so badly by the NHS which after all we pay the wage bill for.

    I know how much you have recovered but also know so much of what you went through and that endless pain your story broughty so mauch of it back to me.

    My story is very similar although it took 4 years to diagnose me and my GP yes most exceptional, actually was the person to suspect Lyme Disease after a significant improvement in my arthritis and muscle weakness when given antibiotics for a chest infection.

    My GP is one of the very few doctors prepared to read available information and research about this dreadful disease and so seeing my improvements continued to treat on long term antibiotics and I am now nearly 100%.

    Once doctors start to listen and do their own research they like mine will find more and more patients with Lyme Disease. In my own area of Guildford there are about 25 other cases of chronic lyme and more surgeries locally are beginning to recognise this illness. Thankfully more cases are being treated in the early stages of tick bite and Bulls eye rash diagnostic of lyme.

    The last person locally I got to know was someone i encouraged to get checked throughly for lyme. He like me had previously been diagnosed and treated for Polymyalgia Rheumatica and then developed neurological symptoms which led to a diagnosis of Parkinson's last Christmas. Knowing what I do about Lyme and having heard Dr Martz presentation on patients with MS, Motor Neurons and Parkinson's found to have Lyme Disease and recovering with antibiotics my hunch paid off. Chris indeed tested positive for Lyme and on private recommendation his GP is treating with antibiotics. Most importantly already in just a few weeks many of Chris symptoms have improved.

    Thank you Ellie for sharing your experience, anyone else reading this and wanting to find out more information should join Eurolyme and read UK charity website at www.lymediseaseaction.org.uk

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    • Posted

      Hi Joanne (or anyone else who can help!!),

      You mention specialists who helped you; I have looked online for specialists but can’t seen anything

      Is there anyone who you would recommend? I live in London and so would prefer anyone nearby but am quite desperate at the moment

      I have included a description of my situation below if needed:

      Almost 6 years ago (December 2008), I was travelling in Australia but living in Sydney for a few months and I noticed what looked like an insect bite mark at the top of my left groin area. It was quite sore and painful and as a result, the gland in my groin became swollen and ached continually for the next few months. As the bite mark had disappeared, I didn’t really see the two as being linked; I just kept going to the doctors who said he thought I must have pulled my groin or was just getting over an infection. This aching continued for another 3 months until around March 2009 where I began to get pins and needles in my hands and feet along with twitching almost exclusively down my left hand side (the twitching tended to be on the left but I would also get it on my right). By the time I came back to the UK in June 2009, all symptoms were as strong as ever but I was starting to get tingle, prickly sensations in my neck and across my head. I saw a Neurologist in both Australia and the UK and upon a physical examination, they said there was nothing to worry about. My symptoms continued on and off up until around October 2009 where all symptoms had pretty much subsided

      Being relieved that I was on the mend, I forgot about the whole episode and put it behind me.; however I would have the odd twitch and tingling sensation every now and then but given how small these episodes were, I thought nothing of it.

      In July 2012, I went away on holiday and during the holiday, I began getting the same sensations but particularly in my neck (my left hand side again) and before I knew it, I was back to the way I was before. This continued up until the New Year where, again, it subsided again. I went throughout 2013 without any significant recurrence but during Christmas last year, I began getting shooting pains across my head and the tingling across my body; this lasted until about February of this year but then again subsided.

      Finally, at the beginning of June, I began getting the pains across my head and then my the beginning of July, I was experiencing worse symptoms than ever:

      • Numbness/tingling down the left hand side of my body

      • Twitching all over

      • Weakness in my left arm and left leg

      • Shooting random pains on my left hand side

      • Constant aching of glands in my groin and neck

      • Lower back and neck pain

      • Shooting/prickling sensations on my head

      • Tiredness

      • Extremely poor sleep

      Then more recently, I have had the below symptoms which are starting to worry me further:

      • Pain in my eyes (particularly my left)

      • Floaters (a huge increase in the last month) in both eyes

      • Tingling sensation on the left hand side of my tongue and tightness in my throat muscles

      • Constant clumsiness, tripping constantly and unsteady feeling on my feet

      • I have found myself less able to do exercise, in particular running.

      I have been to a neurologist a number of times and after having clear results on a brain and spin MRI, evoked potentials and EMG nerve studies, I am pretty confident that it isn’t anything like MS or ALS

      Lyme disease wasn’t something I had considered until I read up on it online and realised that this had all began with what I thought was an insect bite and now I think it could be a distinct possibility. I feel like my health is declining at a rapid rate and soon I am going to find it difficult to exercise and go to work so I need to act now as if it was Lyme disease, I am already well beyond any sort of initial treatment and would need to act sooner rather than later

      Given my symptoms and the initial exposure to this bite in Australia, do you think I have grounds to explore this further? If so, I really need your help if letting me know who I can go and see to help get this tested/diagnosed and hopefully treated.

      Do you know who I could contact about this? I live in London and would be prepared to go privately if needed as I am fairly desperate right now.

      I would really appreciate anyones help on this....

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  • Posted

    I am very worried about my 13 year old son, I have been trying to get him tested since 2008, he has given blood on 3 occasions but I have just discovered the test was never performed. I need to find an expert in the field who can give me a definitive answer. We live in Lincolnshire. Thanks. H23.
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  • Posted

    H23

    Rather shocked to hear that none of these tests were done. I would insist your doctor does this test if you have reason to suspect Lyme Disease - if s/he refuses then ask her/him to put in writing the reasons why.

    One of the presenters I think Matthew Liang, M.D at the Institute of medicine workshop on the State of the Science in Lyme disease http://www.tvworldwide.com/events/iom/101011/ pointed out that if Lyme Disease is not recognised in a child they could be facing 60 plus years of chronic ill health - so rather shocking to refuse to even test.

    However you may have already heard of the problems over testing Trinity Biotech who make test kits for NHS say that a negative result can not rule out Lyme Disease. HPA information differs from many of the research papers that are published. In fact HPA say that in late Lyme the tests are 99% and yet research by Wilkse acknowledges seronegativity and persistent infection and the other reference Aguero-Rosenfeld uses Bacon et al to show high reliability of these tests in chronic Lyme. Bacon et al only included positively tested patients in that study so could hardly be used to prove testing is 99%.

    Doctors really need to be open minded to the possibilities of Lyme Disease and to different standards of care.

    http://www.lymediseaseaction.org.uk/ is a very useful resource for Doctors researchers and patients. They are accredited by the Information Standards Scheme a Dept of Health Initiative and LDA are currently working on research with the James Lind Alliance with support from Dept of Health.

    Sadly most Specialists in NHS tend to follow the restrictive guidelines of our HPA which in turn follow the IDSA guidelines as Authoritive. Yet the IDSA Guideline review pointed out that as European species differed from US Species their Guidelines may not be relevant to us in Europe.

    I have never favored private medicine. It can be expensive and it is disgraceful that patients are driven to get help privately because HPA are being so dogmatic that they have all the answers- clearly medicine is rarely such a simple matter and if your son continues to be ill with no other known cause or helpful treatment then that is one consideration.

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  • Posted

    Thank you, Joanne60 for the information, it is very useful. I have met with my GP and it seems the first test had been done but was in the archives so didn't show on the computer when I requested copies of the results. This showed a negative result. Our doctor has been very understanding and is going to re-test. But, I don't know how useful this is. I am feeling very confused.
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  • Posted

    Have a good look at the lyme Disease Action charity website I gave the link in my last post. If you look under research and then Guidelines you will find several with differing views. As the IDSA Guideline review pointed out the limitations of their Guidelines for us here in the UK then perhaps guidelines more helpful for us here in UK/Europe would be the DBG ones from the German Borreliosis clinic. Read and highlight what you think appropriate to your situation and give a copy to your doctor to take away and read them. Then you are both in a better position to consider the situation. You can of course point out the LDA website to your GP as it is designed with clinicians in mind and there are a growing number of clinicians finding it useful.

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  • Posted

    Hi Ellie,

    Could you please tell me where in germany I can contact to send my sons blood to be tested for lyme disease. He came back from the usa (studying) over 12 mths ago and has had horrible symptoms like yours ever since. We are in australia and have the same problems with diagnosing via blood tests and I heard 2 nights ago that a tv show here advised that someone had sent their blood also to germany to be diagnosed for Lyme disease. I am very worried about my son as lately his heart has been jumping around all over the place, and he is a shadow of his former self in respect to his overall health.

    I am committed to spending all my time resolving this now so if you could provide any reply as to where I can send his blood to in germany I would be very very appreciative.

    many thanks,

    Jilly M.

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    • Posted

      Hi jilly

      iv read your post and many others, was wondering if you ever found out where to send bloods in Germany for testing for lymes, I have an array of symptoms been tested for everything possible with my symptoms been diagnosed with M.E but I'm not convinced as there is know rhyme or reason for my suffering my GP has said he will refer me if I can find a specialist/laboratory to go to or send my bloods to for testing.

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  • Posted

    Dear Ellie,

    I'd be very grateful to know the names of the lyme specialists that have been helping you to get your health back - your story is so similar to mine - apart that I'm only going to see a neurologist next week (I needed to request for a private referral) and I have not done complaints (yet) due to lack of energy and health to do so. With my head pressure/dizzy pain, I don't feel very media savvy at the moment, I'm on EuroLyme - is there a way through it to communicate the DRs names and more, if you have time and strenght?

    Thank you for sharing your story. I hope in the future I am well enough to do the same.

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  • Posted

    I have only just read this (3 years down the line from you posting it) I am going through the same thing and wonder how you are now and where in Germany to go - no luck with my GP here either and although my 1st test was equivocal further ones have been negative so as far as he is concerned that is that! I am not convinced especially after reading your article and another experience in the HIghlands where I live.
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    • Posted

      Hi there just wondering if you had heard from Ellie. I'd be interested in knowing how she is doing too.

      I've just had a test result back which is indeterminate and was wondering whether to go to the clinic in Germany.

      I'm not sure of the costs involved and whether my GP would agree to further IV antibiotics on my return though????

      The clinic is BCA in Augsburg if you want to check it out.

      tc

      Margaret

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    • Posted

      No I have not heard from Ellie - I have taken the case into my own hands and am going to the Doctors Laboratory in Wimpole Street London next week (it costs £80) and blood can also be sent to Munich if I wish not sure of the cost of that. (I have a friend who is a GP in London) - will let you know the results. Whatever happens I am not physically going to Germany.
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