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:
16th
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 10th. 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.
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.
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
