petition : treat lyme disease patients with adequate care

http://38degrees.uservoice.com/forums/78585-campaign-suggestions/suggestions/1483595-treat-lyme-disease-patients-with-adequate-care-and

• Anonymous commented  ·  January 8, 2013 2:16 p.m.

  There are other conditions that now look as if they too are bacterial, I think that this needs to be looked at, as does many mental illnesses that may also be bacterial. I read a report that this may be a pandemic. It is of great importance. By bringing attention to Lyme disease and the use of antibiotics we can also highlight other diseases that can also be helped by the use of antibiotics.
• clare turner commented  ·  January 8, 2013 8:40 a.m.

  Now into my 5th year of antibiotics & other medications, plus many supplements, all of which I have to pay for out a State Pension & Disability Living Allowance... my only income. 
  I'm beginning to have small improvements, but still can only do 5% of what I actually want to do. If I'd had a correct diagnosis in 1996 when Lyme disease struck me down, effective treatments & tests, I'd have continued working to this day. I loved my job as a studio potter, & was earning a reasonable income. By now I'd be quite comfortably off. Instead I remain a burden on the State, requiring Housing Benefit, Council Tax paid for me, and several symptom relieving medications.
• R Davy commented  ·  August 12, 2011 12:55 a.m.

  Lyme is so often ignored and shouldn't be, when is the government going to step in?
• clare turner commented  ·  August 11, 2011 4:01 a.m.

  Before Lyme I was full of energy, successful in my work, & had a full social life. For 16 years my life has been ruined by Lyme disease. Now in my third year of antibiotics. Recently had some small improvements in symptoms; but I'm still largely housebound. If GPs were properly trained to recognise the symptoms & allowed to treat effectively, it would bring an end to the misery caused by this horrible disease. It's not cost effective to have able citizens off sick & in receipt of benefits for the rest of their lives instead of continuing contributions towards the econonmy & society. It seems we have lunatics in charge of health policy. Or is it some dreadful experiment on humanity? What's really going on?
• RJB commented  ·  August 10, 2011 12:09 p.m.

  I've been on antibiotics for 8 months now, and though I have made some progress, I am very far from being completely cured of this awful disease. Surely common sense alone would tell them that 2 weeks worth of antibiotics are not going to cure any patient with over 80 symptoms including numerous neurological one's. A friend of mine was prescribed 6 months worth of antibiotics for acne, which is way more than anything I have been offered.

  We need long term treatment, and educated doctors, how many more people are going to suffer at the hands of the HPA/IDSA.
• bridget commented  ·  August 10, 2011 8:54 a.m.

  this would be a real cheap option the government could do for easy browny points
• polly commented  ·  August 10, 2011 8:17 a.m.

  How many patients are misdiagnosed in the UK and unecessarily suffering , when if adequately tested and given longterm antibiotics many of their symptoms would improve . surely in this current climate of benefit cuts this would be a cost effective way of reducing benefits . The treatments are there so why not use them . ludicrous
• Denise Longman commented  ·  August 10, 2011 2:46 a.m.

  Please come back and vote every day if you can. This 38 degrees way of petitioning has been fantastic at saving our forests, it really gets the message across but we need to get the admin to realise how serious the situation is with Lyme disease. Thanks to all those who have voted so far :)
• Peter Saunders commented  ·  August 9, 2011 9:47 a.m.

  This disease must be put on some agenda for action somewhere. So much suffering made worse by ignorance.
• j_p commented  ·  August 8, 2011 1:47 p.m.

  Imagine what it feels like to have a hangover for over two years (and my case is mild compared to some), and have doctors and specialists treat you with seemingly borderline derision and contempt. If I had been treated adequately in the first place, then there would be no bloody problem, and I could be getting on with my life. Thank God there are a handful who are more educated about Lyme and can see through the politics involved.
• Gillian Broughton commented  ·  August 8, 2011 1:01 p.m.

  Lyme disease is an International Pandemic , Treatment and Diagnoses should be the same as any other Infectious disease , Lyme needs recognition in the NHS !!
• Gillian Broughton commented  ·  August 8, 2011 12:59 p.m.

  Lyme disease is an International pandemic and treatment for this disease should have the same rights as any other infectious disease !!
• m mcmanus commented  ·  August 8, 2011 1:26 a.m.

  Lyme Disease is the leprosy of the 21st century. Lyme sufferers should have the same rights as other infectious diseases. They shoud not have to continually prove their disease. They did not choose their disease. They need care and proper treatment and UNDERSTANDING!
• Theresa Roberts commented  ·  August 8, 2011 12:34 a.m.

  Lyme disease is a very serious disabling illness and does not go away with 2 weeks of antibiotics just because IDSA ans HPA would like it too. Long term antibiotics are necesary.
• Elliott Cowton commented  ·  August 7, 2011 4:11 p.m.

  I was a Chronic Fatigue Syndrome victim, then a friend had the brainwave to say Lyme to me. One tick bite in a suburban garden has lead to 18 years of my life lost to medically unexplained symptoms and now I have to contend with a healthcare system that steadfastly refuses to believe that a chronic form of this disease exists. The more we can raise the profile of this devastating disease and help people to either avoid it or get treatment the better everyone's life will be. And guess what? Lyme is "pretender" and so is frequently diagnosed as other conditions - there are a lot of people out there who could be made better if only their doctor understood.
• kate bloor commented  ·  August 7, 2011 9:55 a.m.

  I have been a bit taken aback that people in the 'environmental/green' movements, have not always been very interested in the issues around lyme disease, despite the fact that is one of several diseases resulting directly from climate change. Wake up you lot.
• jacqui commented  ·  August 7, 2011 5:01 a.m.

  We need the government to accept we are medically ill and to fund biomedical research to discover what virus/bacteria is making us so ill. Many severe sufferers have committed suicide due to the unrelenting pain etc including doctors, nurses, lecturers, students. When will we get justice?
• Elizabeth Smith commented  ·  August 7, 2011 4:32 a.m.

  What would the rationale be behind NOT doing this? Saving money? This makes no sense as people are chronically ,and worse still, critically ill for far longer without this common sense approach to a very nasty illness that needs to be exposed.
• Laurence Swift commented  ·  August 7, 2011 3:18 a.m.

  There are many ways to acquire Borreliosis without being bitten by a tick. A few strains of Borrelia have been found to cause common syndromes such as juvenile arthritis and neuro-Borreliosis including Bell's Palsy. But what of the others? Hundreds of strains appear to be mild or innocuous. I suspect you have them for many years and they eventually appear as Alzheimer's, ALS, MS, and most other neuro diseases.
• Sabrina commented  ·  August 7, 2011 2:35 a.m.

  Whether I am a dog, horse or a grumpy old cow, at least the vet will

  -Go beyond the human recommended 28 days antibiotics treatment

  -Accept that the standard 1 month standard (and even 1 year) treatment fail to clear the bacteria from the tissues, and repeat the treatment if necessary

  -Test for common co-infections, and treat accordingly

  -Advise my owner of the possibility of cross contamination

  -Be open to my owner that the disease can be fatal

  -Acknowledge that serology can come back negative due to the number of Borrelia species

  -Consider needs such as diet and vitamins to complement treatment

  -Be open about the level of infection in the country http://www.cvbd.org/3838.0.html Now I am so pleased to know my owner is less likely to be infected than me. A silver lining?

  -Acknowledge the possibility of other forms of the infection: spheroplasts

  I might even benefit from new diagnostic tests oddly not available to humans, that can even say if my infection is chronic! http://ahdc.vet.cornell.edu/docs/Scopes_2011_02.pdf

  If only I could take my human to the vets....

  
  

  • Richard B-P commented  ·  August 6, 2011 5:13 p.m.

    Lyme is not "all in the head". I need to be treated with respect and get proper effective treatment after 28years, please.
  • Stephanie Smith commented  ·  August 6, 2011 5:06 p.m.

    The NHS and other agencies need to realize that they need their own research into Lyme disease to (truly) understand the impact it is having on its citizens.
  • Joanne commented  ·  August 6, 2011 4:26 p.m.

    Patients are being denied treatment based on inadequate serology and restricted research. The reality is we just don't know enough about Lyme Disease and other tickborne illnesses see IOM workshop for more details. 
    Until much more is known doctors need to make clinical diagnosis and treat according to patient responses often with Chronic ill health long term antibiotics are required. It took nearly 4 years of antibiotics to restore my health from chronic debilitating arthritis and muscle weakness. 
    I was lucky to find a GP prepared to think for herself instead of blindly following the restrictive HPA Guidelines. Many patients are not so lucky.
  • Tina commented  ·  August 6, 2011 4:12 p.m.

    So many of us suffering years of chronic ill health, who find out what has been ailing them, only to discover that the HPA/NHS still refuse to acknowledge, recognise or treat the chronic condition. GPs need training in recogntion of the symptoms and should be allowed to treat with long term antibiotics.
  • David Cox commented  ·  August 6, 2011 3:36 p.m.

    I agree - Lyme needs to be taken seriously by the NHS in the UK...
  • Nigel commented  ·  August 6, 2011 11:53 a.m.

    Lyme disease has been dismissed for too long in the UK with my father being ignored by the NHS and my mother treated as if she was a mental patient (and sent to a mental hospital for "treatment"). These are not isolated cases with many other victims of this disease being treated the same way in the villages and towns around my parents, 
    For a disease which can be caught so innocently and unknowningly on any sunny Sunday afternoon walk in our green and pleasant land its time the NHS woke up to this silent quality of life killer.
  • Sam Malone commented  ·  August 6, 2011 10:18 a.m.

    Chronic Lyme disease sufferers are not able to be treated on the NHS. This is unacceptable. Real pressure on the NHS is needed to rectify this. Please help.
  • Barbara Paton commented  ·  August 6, 2011 10:14 a.m.

    The country is losing millions of pounds through infected patients being of work, requiring benefits, causing their employers expense, needing medical care and emotional support for themselves and their families. Where is the research into better diagnosis and new treatments?
  • trishytwo commented  ·  August 6, 2011 8:01 a.m.

    It is so hard to find proper help for this disease which is not recognised by the NHS in its chronic form. It is so often classed as 'all in the mind' which has a devestating effect on the sufferer (and their families). It is destroying lives, and further investigation is urgently required.
  • clare turner commented  ·  August 4, 2011 3:01 p.m.

    In Poland & Hungary, Warsaw Pact countries, if a patient presents with typical Lyme symptoms the doctors don't wait for test results, they treat immediately with antibiotics. Why can't this happen here? Why do the government advisors tell such lies, saying it's rare when it's known there are 1,000s of new cases every year? What do they have to gain/loose?
  • Darren Smith commented  ·  August 3, 2011 6:58 p.m.

    This Disease needs a fresh start with a fresh approach from British medics and researchers, at the moment UK testing standards and treatment policy is dictated by corrupt American doctor's trying to hide the fact that thier Lyme Vaccine damaged lots of people, so they changed the testing standard to hide the vaccine's key component which they felt was so indicative of Lyme Disease they used this component to produce the vaccine, so when the vaccine failed to protect people and actually gave them Lyme Disease, to hide this fact from further Law Suits they changed the testing standard.
  • clare turner commented  ·  February 14, 2011 12:33 p.m.

    GP ignorance of Lyme & co-infections is a scandal. How long before it's realised by our rulers that leaving so many to lifelong disability is far more expensive for the country than early treatment.
  • Jenny O'Dea commented  ·  February 13, 2011 7:51 p.m.

    I feel that the NHS & HSE (Ireland) really need to admit a few things - a. the tests do not pick up ALL cases of Lyme - if a person has documented they had a tick bite followed by symptoms this should be taken seriously & a clinical decision can be made without too much reliance on testing. b. the health authorities MUST realise that early Lyme left untreated leads to a chronic form of disease which does not respond to short forms of treatment & c. that patients are NOT made better by being ridiculed. Treatment is what makes them better, as well as proper symptom management & adequate & timely care of the patient. Let's hope one day that happens!
  • allen marley commented  ·  February 13, 2011 5:44 p.m.

    Everyone should be aware of this dreadful disease,which is being ignored by goverments and public awareness should be made to all .
  • Ashy commented  ·  February 13, 2011 10:28 a.m.

    I agree with you denise, I have ME and wanted to be tested for Lyme but i read in various places that the NHS test is not at all reliable. I went to my GP and told her that and she shrugged and said "what do you want me to do?". People diagnosed with ME/CFS are supposed to be tested for Lyme as far as I am aware, but we are not on a routine basis. The test, the awareness of doctors about it and the proper long-term treatment need to be adressed
  • Denise Longman commented  ·  February 12, 2011 12:10 a.m.

    Lyme disease, or borreliosis, is increasing in incidence dramatically across Europe and the USA. Lyme disease is a real and present danger for those working or recreating in woods, parklands or even their own back gardens. We ask that the government acts now to increase public awareness of this tick-borne infection, that better diagnostic tests are designed because the present ones are next to useless in 60% of the patients,, that specialised treatment is developed to help the many thousands suffering from the chronic effects and that the disease be made notifiable.

    Every year tens of thousands of European and UK citizens contract Lyme disease. In Holland there are 500,000 chronically ill with the disease, and we might have the same numbers here but we don't have the awareness. 
    Because of the difficulties with awareness and testing, many go undiagnosed and untreated. Those who receive late or inadequate treatment become partially or completely disabled, with a high cost to themselves and to society. In some cases the disease can be fatal. It is far better to tackle this problem before it gets worse; in some areas it has already reached epidemic proportions. Resources must therefore be devoted as soon as possible to improve diagnosis, treatment and public safety.

    The disease is caled the great imitator, like syphilis was once known, and it is similar to syphilis in that it attacks every part of the body, but not at the same time. So people might be diagnosed with Fibromyalgia, MS, ME, Alzheimers, facial palsy, ADHD, Bipolar disease, Arthritis, Stroke, heart disease, paralysis, blindness, skin diseases, Lupus, etc. 
    A petition has been signed so far by 431 online and about 400 on paper. here's the link: 
    http://www.ipetitions.com/petition/uklymepetition/ 
    If only people knew how ignorant most doctors are, despite 40 years of research.There is no public health policy, for reasons of either money or something more sinister. Please read the comments on the online petition, they are very revealing and you'll see it's truly shocking, yet not getting into the mainstream press.