Sidbury Lyme disease sufferer's call
A DEVON woman suffering from symptoms of Lyme disease is campaigning for a change in the guidelines for its treatment.
Stella Huyshe-Shires, from Sidbury, believes she is still suffering from the symptoms of the disease, which she was diagnosed with in 2002.
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Stella Huyshe-Shires suffers from Lyme disease and is campaigning for a change in the guidelines for treating the disease OLIVER SANDERS EE110509_OS03_02
The condition, which is caused by a bacteria transmitted by the bite of an infected tick, can occur if the body does not fight off the infection and the bacteria get into the central nervous system.
Mrs Huyshe-Shires, who is in her late 50s, suffers from a stiff neck and pain in her upper back, gets pains down the back of one leg, has swollen hands and finger joints, dry eyes and a dry mouth.
A former IT worker for the NHS, she has been retired on the grounds of ill health. Although Mrs Huyshe-Shires was treated, she believes she has not been properly cured — but cannot be treated further because of guidelines governing the use of antibiotics. She wants the Department of Health to establish clinical trials into the effect of long-term antibiotic treatment for the condition.
Mrs Huyshe-Shires says doctors in the UK follow the advice of the Health Protection Agency, which adheres to guidelines set by the Infectious Diseases Society of America. The guidelines state that patients should take antibiotics for no longer than 28 days.
As a member of Lyme Disease Action, Mrs Huyshe-Shires has lobbied MPs to change the rules.
The group’s campaign has the backing of South West MPs including Hugo Swire and Julia Goldsworthy, who last year raised an Early Day Motion to draw up UK guidelines for diagnosis and treatment.
Mrs Huyshe-Shires said: “I want to do something about it. I think it’s ludicrous I have to have a reduced life when I believe there is a cure.”
Mrs Huyshe-Shires believes the Department of Health should set UK guidelines for treating the condition. “We currently use the guidelines drawn up for the US,” she said. “In Europe, three different bacteria cause the disease, in the US, there is only one.”
A spokeswoman for the Health Protection Agency confirmed it gets its guidelines from the Infectious Diseases Society of America.
Dr Marina Morgan, a consultant microbiologist at the RD&E, said: “All antibiotics have potentially serious side effects, and to lessen the chance of breeding multi-resistant bacteria we only use antibiotics when absolutely necessary.
“But we should always treat the patient as an individual, weighing up the risks and benefits of therapy.”
6 Comments
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by Clare Burke, Ashburton, Devon
Monday, June 15 2009, 11:10AM
“I am also suffering from chronic Lyme disease (misdiagnosed for 16 years as ME), however due to the limitations of the NHS test used and the constraints placed on GP's by the HPA who take their guidance from the discredited guidelines written for the CDC in America, I'm having to fund my treatment privately.
For an ill patient to have to try to contend with the politics that surround this disabling disease is shameful, as are the high number of cases that go undiagnosed. Living or playing in the countryside in Devon we're all potentially at risk of this disease and the number of ticks which carry it are on the increase. I found a tick attached to my toddlers ear on friday. I'd strongly advise parents to search their kids after they've been playing on the moor or in long grass or woodland. The sooner a tick's removed the smaller the likelihood of infection. This goes for adults too of course. The potential impact of this disease should never be underestimated.
I'm only grateful that I've finally found a proper diagnosis - however it's terrible that after 16 years of ill health I'm having to fund my own treatment with no help at all from the NHS.”
by Giuseppe Melecci, Faversham ME13 7EX
Saturday, June 13 2009, 9:16PM
“I have several concomitant infections (jncludign neuroborreliosis) which are causing ME etc. I also have mitochondrial myopathy , which seems to be secondary to Bordetellosi and neuroborreliosi. Obviously I had been seen by several specialists in UK and abroad. But my ex- GP who was very supportive . has retired, and now I have to start everything again...
I was a succesful translators and now I am destituted, ill , and hopless.
I will have to resort to go abroad jus to get the antibiotics I desperately need. Unfortunately in the UK, Ceftriaxone is still rarely used. And when it is used , is used only via i.v. injections. But in Continental Europe it is commonly used via intramuscular injections and it cost only 5. 57 Euros a gram indluding the i.m solvent.
Ceftriaxone has been licensed in continental Europe for almost 40 years. Yet it reached the Perfid Albion only in 1997..
Also since you are a vet (albeit retired) what about the use of fresh bovine colustrum as adjuvant to the immune system etc? The studes are of Professor Hugh Fundberg., a world leading immunogeneteticits . If only doctors were vets..”
by Michael, Budleigh Salterton
Saturday, June 13 2009, 12:18PM
“It seems to be worse in the USA where Lyme disease first got its name; see http://budleighbrewsterunited.blogspot.com/2009/05/ticked-off.html”
by Joanne Drayson, Guildford Surrey
Saturday, June 13 2009, 8:45AM
“It is time the National press got involved with what is going on. Why are the HPA trying to keep a lid on this? My MP Anne Milton has also asked questions of the HPA and in the House of Commons. Why isn¿t there more awareness? Why do children role in fields and wooded area with parents oblivious to the dangers? Why are we allowed to drop into serious debilitating illness, when a short course of antibiotics administered at the time of tick bite can prevent long term ill health? Without awareness why would we consult a doctor for a bite even when accompanied by a rash?
Lyme disease: scratching the surface
Steven E Phillips, Nick S Harris, Richard Horowitz, Lorraine Johnson and Raphael B Stricker
Extract
The immune evasion strategy used by B burgdorferi is similar to strategies used by the mycobacterial agents that cause chronic infections such as tuberculosis or leprosy.
and
Understanding the pathophysiological complexity of this organism should help to improve our clinical approach to Lyme disease.
Judith Miklossy researcher who found Borrelia DNA in Alzheimer¿s brains says
Even in the doubt of tuberculosis it is obligatory to treat patients with "tritherapy" for 6 months. It should be an example for the future treatment of Lyme disease. Such treatment, in analogy to tuberculosis and syphilis will substantially prevent extensive healthcare costs in the future.
I was one of the few fortunate patients whose GP suspected Lyme Disease. My GP treated me with long term antibiotics despite advice given to her on the phone by HPA. Thank goodness, after 6 years debilitating and painful arthritis and muscle weakness and then many months antibiotics once Lyme Disease was diagnosed ( 4years into the illness) I am nearly 100% recovered.”
by al., Connecticut U.S.A.
Saturday, June 13 2009, 4:42AM
“http://underourskin.com/blog/”