Lyme sufferer Ann Maher has been organising patient meetups in Ireland for a number of years now. This year the meetup developed into Ireland’s 2nd conference on Lyme disease. ‘Patients Helping Patients’ was the title & was supported by Tick Talk Ireland. Organiser Ann says:
The conference was a huge success, with 120 attendees there, which included some G.P’s from around the Country, Dental surgeon, Cardiac consultant, 2 Pharmacists and a County Councillor from Kerry, which is a high risk area for Lyme disease.
Many “New Patients” attended, which makes me so sad that after all these years, nothing much has changed as regards early diagnosis and treatment, we had Patients from all over Ireland North and South.
The very sad situation of Misdiagnosis is a serious Problem, which we wish, with Education for the Medical profession and the Public that might change over the coming years. Of course, it seems our testing needs to improve, but that is a worldwide problem as well.
I really appreciated that Dr Armin Schwarzbach invited those European speakers on our Behalf;-
Dr Herbert Rixecker( Dental Surgeon),
Dr Albin Obiltschnig( Orthopedic hand Surgeon), who had Lyme disease himself.
Pol De Saadeleer ( PharmaD)
Dr Armin Schwarzbach did a wonderful presentation on the day.!
I was especially delighted that Dr Jack Lambert from the Mater Private hospital, Dublin, accepted my invitation to do a Presentation on the day, which he also presents to groups of G.P’s around Ireland, on behalf of the Mater Private hospital.
Dr Lambert also presented data in a poster session on the first 100 patients from the Irish perspective, in June 2016 ILADS conference in Helsinki & will also be appearing at the upcoming Vis-a-Vis conference in London this October.
All in all the conference was a success. It’s very hard for patients to organise these big events but we do it to help raise awareness, bring patients and doctors together and to hope for a better future!
Some upcoming confs in the UK are listed here at: http://lymediseaseuk.com/2016/03/20/upcoming-events-3/
Check out this excellent video below, courtesy of Nicci St.George Smith this 18 mins video inc snippets of presentations plus interviews with speakers & patients
For several years now we have had a rolling survey which we publish every 18 months to 2 years. In May 2016 we released our latest results. Here are some snippets of the surveys..
Snippets from the Lyme survey – full report available via PDF
127 people replied to the survey during the months of July 2009 to end April 2016:-
When asked which country the tick-borne infection took place, 64% of our respondents were infected in Ireland and 18.5% in North America. The remaining 17.5% listed Europe as their source of infection.
An overwhelming 41% of respondents said they were infected whilst out walking (in woods, along a beach, by a lake or in a park). 10% indicated they were infected in their own gardens & 6% whilst camping.
52% patients waited a year or more before receiving a diagnosis
86 out of our 127 respondents have been ill for more than a year in TOTAL including pre & post treatment which is an alarming 68%.
Nearly a THIRD of these patients (25 out of 86) have been ill for 10 years or longer.
Regarding misdiagnosis, 38 people indicated they were previously diagnosed with ME (chronic fatigue syndrome), 21 people were told they had psychiatric disorders, 15 had FMS (fibromyalgia), 10 MS (multiple sclerosis) & 1 person was misdiagnosed with Parkinson’s disease.
Symptoms among our respondents were wide ranging, particularly in those that have been ill for a long time. The highest response rate of symptoms included profound fatigue (81%), weakness (79%), muscle aches (78%), poor concentration (74%), migratory joint pain (70%), stiff neck (70%),
tingling/numbness (68%), sleep disorder (67%), poor memory (66%), headaches (66%), dizziness (64%), stiffness (63%) & brain fog (62%).
It is interesting to note that the erythema migrans (EM) rash was only present in 43% of the patients at the start of the illness and 22% have multiple EM’s during the course of the illness. This shows that a rash is not always present or even noticed.
A shocking 55% of our respondents suffer 20 symptoms or more as part of their illness.
20 respondents have consulted a Lyme specialist in the UK, 17 went to the USA, 14 went to Germany, 2 to Switzerland, 3 in other parts of Europe (France, Portugal & Hungary). 17 saw a private consultant in Ireland.
For treatment protocols 69% have used tetracyclines (e.g doxycycline), 34% penicillin (e.g. amoxicillin), 26% macrolides (e.g. zithromax), 26% IV antibiotics, 22% metronidazole (e.g. flagyl) and 18% cephalosporin (e.g. zinnat).
For alternative therapies 29% of respondents have tried acupuncture, 28% Co-enzyme Q10, 28% massage, 23% have taken Cat’s Claw/Samento, 21% homeopathy, 14% Alpha Lipoic and 14% glutathione. To help with symptoms, 48% use probiotics, 45% painkillers & just under a quarter of the patients reported they take anti-depressants.
109 people responded to the last question – as to which type of treatment had been the most helpful. 74% answered antibiotics, 32% rated alternative therapy, 31% of people found supplements to be helpful, 26% found painkillers helped them whilst 29% mentioned ‘other’ methods helped (including massage, yoga, infra-red saunas & physiotherapy).
Snippets from the Tick survey – full report available via PDF
The most common area for ticks was an overwhelming 21% in Galway, 15% in Kerry, 12% in Cork, plus 7% in Donegal & Clare.
44% of ticks were found in tall grasses, 21% in private gardens.
46% of ticks were found whilst walking, 13% whilst gardening.
54% of ticks were found on adults, 30% on dogs, 20% on children, 7% on cats, 4% on deer
Was the tick attached when found?
87% of people reported that the ticks were attached to the skin when found (ie embedded).
13% reported that the tick was found crawling over the skin (but NOT embedded).
51% of our respondents who had an embedded tick noticed that the tick was engorged when found, which indicates the tick has been feeding for some time. This greatly increases the chance of transmission of Lyme Disease if the tick was in fact infected with Lyme (borrelia) bacteria.
Lyme disease: Nobel Prize Winner Prof. Montagnier denounces the inefficiency of test protocols
The Lyme disease , transmitted by tick bites, is poorly diagnosed and treated in France, due to a “great ignorance about its chronic nature,” said Sunday, at a conference in Strasbourg, the Nobel Prize medicine Luc Montagnier, who claims to have made promising discoveries to better diagnose the condition.
“It is unfortunate that governments and health authorities have not a coherent policy on Lyme disease,” denounced the co-discoverer of the AIDS virus.
“There are currently a total ignorance on the subject of much of the medical and scientific community, “added Professor Montagnier, who was speaking during a study day devoted to this pathology, organized by” Lyme without borders “, an association of angry patients against the formal approach to the disease.
For Professor Montagnier, 83, the tests used today to detect the Lyme bacteria give too many “false negatives” because they are based on the detection of antibodies, while some patients infected do not develop – or they have been infected there too long for this test method to be effective.
The scientist, who worked in Paris in a research institute that bears his name, seeks to to develop a diagnostic method of detecting in the blood plasma of traces of the DNA of the bacteria, by sensing the electromagnetic waves emitted by the sample. “I think this test is more reliable” than those currently in force, said the Nobel Prize, while agreeing that this electromagnetic approach was “not recognized by a number of scientists, so had the hard to get it validated. ”
27,000 new cases of Lyme disease are officially reported each year in France, but according to the association” Lyme without borders “, this figure is in fact much more important, in the order of” ten times more “.
Detected too late, the disease – for which there is no vaccine – can have severe and debilitating neurological consequences for patients.
According to the members, many patients, sometimes nailed in a wheelchair, have “wandered” from doctor to doctor and sometimes treated hypochondriacs lack of proper diagnosis.
“Yet even 10 years after the condition (a tick bite, ed), it may be that the bacterium is there, hidden in the body,“said Professor Montagnier.
In such cases, it is very important to ask the right diagnostic to offer treatment with antibiotics, which “can be effective,” he said.
For a look at the similarities between Aids & the Lyme movement check out our recent blog post (see about half way down the post for details ‘Is Lyme the new Aids?’).
– in the UK there have been moves to create useful guidelines for GP’s to follow regarding treatment and diagnoses of Lyme disease. As we know from the Infectious Disease Society Guidelines of America, setting guidelines can be fraught with dangers. Do you accept that Lyme is a chronic, persisting illness which as yet has no known cure or do you believe that Lyme is shortlived, easy to treat and therefore suggest a treatment in the box approach. Research does show that Lyme bacteria is very difficult to treat, it can evade antibiotics as well as the immune system, it is shape shifting and can be protected by biofilm. More recently it has been suggested that borrelia can even hide inside nematode worms causing lewy body dementia. Can this be a cause of some types of alzheimers?
During a meeting with Prof Whitty (investigator who will lead a government review into Lyme disease) there was a suggestion that scientists who have strong opinions on either side of the argument (short lived v chronic Lyme believers) will be disregarded from review. However, where does that leave scientists such as Eva Sapi & Dr Alan McDonald, both with first hand knowledge of Lyme disease? They have studied Lyme bacteria in great deal and understand the bug more than many – is it fair to disregard their expertise because of their involvement in the Lyme community? I’m sure patients are waiting with some trepidation to the outcome, a review is needed but not at the expense of ignoring a whole section of research.
Meanwhile, many Lyme groups are taking part in the NICE guideline review, inc Lyme UK, Viras & Lyme Disease Action. Tick Talk has offered it’s article on testing concerns (PDF) which has been accepted by the NICE guidelines committee.
Irish documentary team looking for backers, take a moment to watch the video, it’s heart wrenching..
Meanwhile, don’t forget to protect your family this summer. Check out our latest article published in ‘My Kids Time’ web site 🙂