What we need to go through just to get treatment

Posted , 39 users are following.

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

9 likes, 59 replies

Report / Delete

59 Replies

Prev Next
  • Posted

    Hi Ellie, my father is going through a very similiar situation although he has had Lyme Disease for 22 years and we have only just had it confirmed by labs in Germany. Please could you tell me the name of your Lyme specialist doctor as we are desperate to get him treated and although we don't have private health care we are prepared to pay to get him the treatment he needs. I would be extremely grateful for this information as we are struggling to find any doctor in or outside the NHS who can help.

    Kind Regards E

    Report / Delete Reply
  • Posted

    Hey Ellie, 

    I was just reading your story and it has made me panic even more as its like reading about my self! I have been suffering for a good 3 months now and I dont seem to be getting anywhere with my doctor, they have given me a blood test for Lyme disease as they did suspect it, but they are not convinced its that as all I hear is its very rare! but like you I have seen more and more cases on lyme disease in the uk and its not hard to find that more and more people are not being treated correctly! 

    the doctors have tested me for everything and they still wont give me antibiotics for this! I didnt even no about lyme until 2 weeks ago and the more I read about it, the more I see my sympoms are exactly the same as what I am experiencing, 

    I dont really no what to do at the moment as I cant afford privaite care, I am never ill so its not like I am up the docs every 5 mins with symptoms, but I am constantly batteling with the doctors and they are not helping me at all! just fob me off! But at the moment I cant even lift my own head up, I cant walk my kids to school, I am getting more than 9-10 hours asleep at night at the moment, the advice I had today at the doctors was take multi vitamins? its shocking! 

    Is there any advice you could give me at all? 

    Thanks 

    Zara x

    Report / Delete Reply
  • Posted

    I have just read your story Ellie and thought it was wonderful you have had success.

    Now I need your help, I am currently experiencing the same issues with my Gps I have been passed from pillar to post, had numerous unnecessary scans fueling my body with radiation. I originally had an chest xray followed by asthma tests followed by speromitry tests followed by exercise stress test resulting in suspected angina which I had an angiogram for, followed up by rhumotoligy checking sternum CT scan, then neoroligy tests for brain spine nerves checking for CFS. Final verdict is now to see neurophysiology because apparently I'm imagining my symptoms! Just like you were. However my gp did run a Lyme's test which went AWOL for a month but came back positive/negative? So I have much info on Lyme's and understand that false negs are quite a regular thing when trying to diagnose, so I want to request another test or see a Lyme's specialist. I have not made this request yet to my gp, but I am hoping maybe you could share your details with me as I might go down your route and rule out the NHS and all the incompetent arseholes who work for them as I just wanna get right for my wonderful daughter. Please could you get in touch with me through here, or point mein the direction of your consultant your "hero". I would love to hear from you or anyone who reads this that can help, 

    Thanks. J

    Report / Delete Reply
  • Posted

    hI I have read your story and fully apreciate how angry you must feel for your gps uncooperative conduct in providing you with test that could have confirmed your health condition.I dont have the same illmess but mine has been going on for a year now and I feel I am not being listened to by my gp so I will press on insisting I want certain tests done and I will probably have to advise my gp I will concult with a solicitor if later found out my doctor has misdiognosed . I wish you well and if I were you I would press on with action against your gp and search for a new gp.GOOD LUCK Ellie.

     

    Report / Delete Reply
  • Posted

    Oh this is awful. I do hope by now your symptoms are more manageable or completely gone. I live quite near to you and have had very off hand treatment when asking for LD test following a tic bite (on Arran) which swelled to the size of a fist and was red hot.  I was given antibiotics about 6 weeks later but the NHS test came back negative (at least I was tested). 3 and 1/2 years on i am getting strange symptoms such as excessive aching and cognitive problems and just feeling weird when I am slightly ill (cold etc). There could be other reasons for my symptoms as I am older than you but I would like to be sure that i do not have some of the disease in my body. Do you have a contact for the specialist?  
    Report / Delete Reply
    • Posted

      Hi Janet 

      I dont have a contact for the specialist at the moment I will search my book mark to see if it is on the web site i was on ok. my ultra scan of throat was normal also camra down throat normal,but i told my gp it needed to be a cat scan and a special barium meal swallow ,they dont listen properly to the patient I have been suffering now since jan 2014 and still no closer to diognoses .I will message you if I can find the name of the concultant ok hope your feeling better soon

      Report / Delete Reply
  • Posted

    Hi Ellie & everyone who's posted. I'm in a dominant situation and been very ill for just over 2 years. Now live in the UK but lived more than than half my life in CT, USA. Can anyone please please advise of a good Lyme specialist in the UK who will send blood to USA or Germany for testing. I live in Kent but prepared to travel. Thanking you in advance.
    Report / Delete Reply
    • Posted

      Hi Lemnia,

      Have you had any luck with someone recommending a Lyme specialist who is prepared to do those tests from Germany or USA but is based in the UK? If so, could you private message me the doctor's details too? I have been ill and getting worse and worse for many years now and even though it may be very expensive, realise I may have to scrape some money together to pay for some things privately. sad

      Report / Delete Reply
    • Posted

      Hi Phoenix89

      I like you had to make the desicion to go privatley and seek out a good doctor/lab that would test for lymes. As I could not find anyone in the UK I was advised to do it through a well recomended clinic in Germany. I am having my blood drawn tomorrow in the UK (6 tubes) and then shipped by DHL courier to Germany for testing. It's costing me £500.00 but at this point I feel I just have to do it to know one way or the other as I'm too ill to ignore this now. I would send you a private message, but I'm pretty new to this forum and have no idea how to do that (if anyone can advise me on how to please feel free?). 

      Report / Delete Reply
    • Posted

      Hi, I have sent you a private message. If you click on your user name it should take you to your account page. On the top right is the grey "Messages" button. smile
      Report / Delete Reply
    • Posted

      hello leminia i kno wyouhave used the same lab as me by the discriptionand price, it was positive, meendo did annhs oneto try to help me but ithas come back negative. nhs have not got enough knowledge  to get these tests right. i fearithas affecte dmy  nervous system a si have so much pressure in thehead. p.o.t.s. symptoms, fatique welleverything that ellie listedabove. ido not sleep a sit is like sleepingon a washingmachine inaction. any help of a lyme doc inessex woul dbe alife saver
      Report / Delete Reply
    • Posted

      p.s. i have also written to the health minister  jeremy hunt a si have been unwell 18 years and  been sen teverywhere to no avail, it is apalling that this is not taken seriuouly , i urge everyon esuffering to write to him to demandthat doctors learn, then learn some more andthe governement  accepts the disease.
      Report / Delete Reply
    • Posted

      Hi Poppy

      Firstly, I applaud you writing to the health minister, I intend to do likewise. I totally understand your frustration and your situation. I like you have been everywhere and ended with being shown the door with no help from the NHS whatsoever. It would seem if the illness doesn't fit within the confines of the little box they work within then they are at a loss as to how to help or even the willingness to look further. I am still very ill. I have not found a doctor in the NHS to help. I did end up going to BS hospital and saw a Dr. M (don't think I'm allowed to put full names on here). About £3500. later I was not better off and being told I need still more expensive tests. She did however concede I had Lyme from the tests I had done in Germany. Currently I am going a different route for treatment. I read and listened with great interest to a doctor in the US who is pioneering LDI treatment for Lyme (this is not your normal LDI treatment that is offered at the likes of BS). This is something new that is having remarkable results. I was intending to go to the States, but I am too ill to travel. So, I got a list of the doctors across the US who have now been trained by this doctor (Dr. V in Alaska) and I mangaged to get one of them to agree to treat me here in the UK via skype consults and to ship the doses to me here. My first consult that lasted 2 hours was last Friday and the first dose of LDI for Lyme and another for candida is on it's way to me now. I am excited to try this. I can let you know how it goes. If you would like to read up more and look into this treatment I can give you a lot more info, it's compelling stuff and I believe it is helping many. Just hang in there, easy words and I know how hard that is to do in this state, but we can get there, we can find a way out of this I'm certain. 

      Report / Delete Reply
    • Posted

      Hi I'm going through same thing but did get dr in france who said my symptoms were lyme.I had never mentioned my suspicions to her she just listened to symptoms and said oh I see you have the lyme illness I was shocked she said to retest in 6 weeks in uk as srology is slow and she did same test as uk .the lab results said altho it was neg retest in 4 to 6 weeks as serology is slow and this test does not exclude you from having lyme desease.I went to my gp uk and he said well I could give you a test but let's look up the guidelines for lyme in uk.ok no I won't test you as it's better to give 2 weeks doxy .I've been ill badly 4 years and can remember a bite and dr said it was rash of ringworm.the cream didn't work.I've now had so many xrays scans gal bladder out and still ill.Nero symptoms I was wrongly dx bipolar then 3 years ltr told I never had it but I do have fibromyalgia.even got lupus tests.seeing a conective tissue desease consultant soon despite neg results .I've got mould in my house too look up ritchi shoemaker md on YouTube the 2 go hand in hand.I need real test from germany and proper treatment.new evidence from an American lyme dr said it was also from flees horse flis spiders mosquitos and French dr told me about new white tics .she also found it in 100%vaginal fluid and 50 semen and tested the spouse of 100 lyme sufferers and 30 tested positive and for same strain and there are lots of strains concluding over 10 years ago it was suspected it could also be transmited sexualy.I need help please send me name of German test place .I'm so I'll. Thank you and I'm glad if things get better for you.xx

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up