Worldwide and weary

It's been a while since I blogged, I've been super busy with the worldwide Lyme protest, which has snowballed into something far better but also far more work than I anticipated. I see it as a job now, unpaid, but very rewarding. More on that later.

After Spain I had a completely rubbish three weeks, I really struggled to recover from the trip. I even had to use crutches a bit, which I haven't done since oct last year. The random pains came back - sudden brief intense toothache, head being 'stabbed', shooting pains in muscles and twitching returned. I had no energy and the house was a complete mess. So I was a bit worried. Emailed my LLMD and she said detox, take the neurontin for sleep, and keep going. Discovered hot lemon water is lovely and makes me feel good, epsom salts baths are a great excuse to watch an hour of telly on Iplayer and I caved in and took the neurontin at the lowest dose. Bounced back, had brilliant flare up last cycle (as much as not being able to walk properly and being knackered and headachey and twitchy can be brilliant, you know what I mean!). I was gardening two days after it started, pretty amazing.

Had a good encounter with a cardiologist. He was actually human, not some twattish droid. He didn't dismiss the possibility of chronic Lyme. He said the ECHO showed the front wall of my heart wasn't quite working as it should, which could be due to atherosclerosis, or it might not be. I still had bundle block on their ECG so I'm guessing that might be permanent. He's put me on the list for a holter monitor and cardiac MRI which is good. The cardiac symptoms haven't totally gone I still have some palpitations, feeling faint when I get up and falling to the floor, BP falling on standing, weird breathlessness when lying down at night and now some mild chest pains. So I'm still thinking the Lyme has caused heart damage.

I made a formal complaint about the lying neurologist, her reply was suitably evasive and fob-ofish. It really read as if she had already made her mind up about me being a psychiatric case, and therefore didn't want to believe nerve conduction test results and her own neurological exam. That's  what I was complaining about! I can't be arsed taking it further, at least she had to explain herself to the chief executive so she didn't get off completely scott free.

I'm writing this after a busy day doing worldwide protest work, looking after a manic 2 yr old and I'm pretty pooped and deflated. Slightly worrying chest pains, dizziness and light headedness today. This will be the 11th day off the antibiotics. I'm on a new schedule now, which is two weeks on the pulsed antibiotics, then a week where I just take supplements and Coartem (for Babesia) for three days, then a week with just supplements. I can feel the absence of the antibiotics. I just spent 10 minutes lying on the kitchen floor, feeling too faint and weak to get up. Eventually, my daughter came and lay next to me and pretended to be a dog, bless her :-)

As tired as I feel, I keep being reminded how well off I am compared to lots of other Lymies. A side effect of doing the Lyme protest is that I've been in touch with absolutely tons more Lyme sufferers. Bloody hell, I'm so lucky. Some of these people are so sick, some seem to be dying, some have actually died. My thoughts are with the family of this man, Scott Beattie who recently died, apparently of Lyme in hospital in  Inverness. Sounded to me like he had a fatal herxheimer reaction to the second lot of antibiotics they gave him. I doubt they will put Lyme on the death certificate though, it'll be organ failure or something similar I bet. Hugh Pennington in one report says "he would be "very surprised" if the disease itself had caused Mr Beattie's death"  Prof. Hugh Pennington is not a practising clinician with expertise in chronic Lyme - he is a retired microbiology professor- so shut the hell up with your uninformed opinions, grrrr...

I've heard so many terrible stories. Children losing their parents to sickness, other kids losing their childhoods. Mothers losing their babies, other mothers fighting through barrier after barrier for their kids. Young people, in the prime of their lives, fit, enthusiastic outdoor people- reduced to shadows of their former selves.  I'm incredibly saddened at the waste of lives and immense suffering. Needless suffering. The injustice is appalling, how can the doctors who turn these people away, denying them treatment, sleep at night? I'm intensely fucking angry, but in order to effect change, to even function and heal, I need to temper that anger with a layer of positivity.

I can do my little bit to help attempt to try to get justice for the ignored. I really hope this protest helps. It's already brought people together and invigorated people's efforts to write letters to MP's (see mine, below). we've had new people sign the petition. Lots of people have sent in messages for the Dept of Health to our protest facebook page, and UK protest website. Someone has  Set up a Lyme register for UK Lyme sufferers and two other folk have started up a UK support group.

We must have already done a fair bit of awareness raising- our weekly reach on the Facebook page is around 4,500 people - that's a lot of folk! Thanks to everyone who is helping with this work, I won't name you, you know who you are, you know you're all stars :-)

So keep up the good work everyone. If more of us could write to the Health Secretary, that would be good, below is the letter I sent him:

16^th April 2013

Rt .Hon. Jeremy Hunt, M.P.

Dept of Health

Richmond House,

79 Whitehall

London

SW1A 2NS

Dear Mr Hunt,

I am writing to you to make you aware of why Lyme disease patients will be protesting outside the Department of Health on May 10^th. I am organising the protest because I have Lyme disease and like many thousands of others in the UK and worldwide, I am being ignored by my government, the National Health Service and the Health Protection Agency (Public Health England). Chronic Lyme disease is a treatable infection, yet we are being denied treatment and we are abandoned by the NHS. We suffer crippling illness, often unable to work, thousands are losing their livelihoods, health and happiness.  There are no NHS doctors who really understand this complex disease, most have no training in it and the Health Protection Agency has done little to educate them.  There is wealth of scientific evidence showing that the guidelines on which the NHS and HPA base their diagnosis and treatment are fundamentally flawed. These (IDSA) guidelines were written by a small group of self-selected doctors in the USA who have multiple conflicts of interest and who stood to benefit financially from portraying Lyme disease as rare and easily treatable. They deny that chronic Lyme is due to ongoing persistent infection. This is a gross misrepresentation of the literature.  In fact, Lyme disease is much more common than official statistics suggest (misdiagnosis is rife and testing is very insensitive). Lyme Disease Action estimate around 15,000 cases each year in the UK.  The Lyme bacteria is sometimes very difficult to eradicate, short courses of antibiotics such as those recommended by the IDSA and HPA have high failure rates.  There are several papers which show much longer courses may be beneficial. There is overwhelming evidence (more than 100 research papers) showing that the Lyme bacteria can persist and remain viable in the body, despite short antibiotic therapy.  Patients (including myself)) are often infected with more than one bug, which makes treatment and diagnosis more difficult. However when patients do manage to get long-term treatment (by paying for it themselves, privately), they usually report great improvement and sometimes a full return to health.

I was infected in 2008 on the west coast of Scotland. With a single tick bite, my life changed forever.  I was an Ecologist and was aware of Lyme disease. So when I got the first symptoms 11 days later, I mentioned the tick bite and possibility of Lyme to the GP. By the time I got to hospital 2 days later, I had meningitis symptoms and had lost the ability to walk. I was feverish, drenched in sweat, had palpitations,  twitching, muscle pain, joint pain, stomach pain and swollen glands. They discharged me a few days later with a short course of low dose oral antibiotic. I should have been given intensive intravenous antibiotics as it was likely that the bacteria was in my brain and nervous system.  It was too early to test accurately for an antibody response, but they tested anyway, and the results were negative for Lyme.  Despite continued symptoms, I was initially undertreated and as a consequence, I am still infected and suffering 5 years later.

Despite a tick bite in a known area of high incidence, symptoms consistent with Lyme, two positive private blood tests,  5 private Lyme specialist doctors diagnosing me with Lyme disease and a good response to (private) long-term antibiotics, the NHS to refuses to acknowledge my diagnosis and  I get no NHS treatment. I have measurable heart problems and nerve damage as a result of my Lyme. There are days when I can hardly walk.  I often struggle to look after my 2 year old daughter.  I worry I may have passed the disease onto her and/or my partner (there is evidence for in-utero transmission and my Lyme doctor thinks it is sexually transmitted). The infectious diseases doctors that I have spoken to are completely unaware of these routes of transmission. We have used all our savings, my parents money and have spent many thousands of pounds  by being forced to pay for private treatment.  I am now being treated by an American Lyme specialist doctor. The treatment is working but it may take a number of years.  Lyme may have cost me the ability to complete our family and have another child - the risks of miscarriage are increased, and I could not inflict this disease on an unborn child. I am 39, so time is running out.

My story is not unique, in fact it is typical in the UK. What is not typical, is that I was diagnosed quite soon after infection (it was clear to me it could have been Lyme so I sought out a private specialist promptly). Lyme is difficult to diagnose and the HPA has given doctors a falsely reassuring impression of the reliability of its tests for Lyme. An independent study which examined the same types of screening tests as those used by the NHS found that they missed between 66 and 41% of Lyme cases- an incredibly poor test! In addition, the HPA give doctors misleading information on the symptoms of Lyme, so complicating what is an already difficult diagnosis.  Lyme is misdiagnosed as Chronic Fatigue Syndrome,/M.E., psychological illness, Multiple Sclerosis, Alzheimer’s, Polymyalgia rheumatica, Arthritis, thyroid disorder, menopause, stress, Motor Neurone Disease and much more. 

The UK desperately needs a new approach. These are the demands of our petition that has around 3000 signatures. I hope to hand this petition into a Department of Health representative on the day of the protest.

The demands of our petition:

1: That Lyme borreliosis be made a notifiable disease, so that the true incidence becomes apparent.                                                                                                               
2: That better methods are actively explored, to test for and diagnose both acute and chronic infections.                                                                                                                              
3: That doctors are trained in the treatment of borreliosis and other tick-borne diseases. Given the number of patients who may now be infected, we ask that special clinics are established where the diverse range of the effects of the disease can be acknowledged and treated.
 4: That treatment is extended for as long as necessary, and to include the use of high dose, combination or long-term antibiotics, especially in those patients who have been ill for a long time. Even in those patients who appear to have recovered, a 5-year follow-up would be advisable to monitor the condition.

5: That medical schools and practising physicians are made aware of the research and latest knowledge in diagnosis and treatment of Lyme disease, as well as the other emerging infectious diseases carried by arthropods which may cause co-infections in patients with borreliosis.                                                                                                               
6. That all government agencies for the Environment, Health, Sport and Tourism use their resources to make the general public in the UK aware of the potential risks from tick bites.

Thousands of people are suffering miserable existences; people are dying of this disease. The science is there to support our case – we don’t yet know the optimal treatments, but we do know it can be successfully treated.  Please listen to us, listen to Lyme Disease Action, listen to the science, stop the wasted lives.

Yours sincerely,

Dr Nicola Seal

Co-ordinator of the Worldwide Lyme Protest - UK