What we need to go through just to get treatment
by Ellie Marshall
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 continued mess-ups.
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.
The above was posted by : Ellie Marshall
Post date: Fri Oct 29, 2010 on Patient UK here
Sadly Ellie's experience is like so many more patients left to wallow with chronic ill health by our Health Authorities who, deny how complex this illness can be without even bothering to look at the huge body of research that shows what a complex relapsing illness Borrelia can be and so our doctors refuse treatment that helps so many of us.