Lyme sufferer Ann Maher has been organising long-suffering meetups in Ireland for a figure of years now. This year the meetup developed into Ireland’s 2nd conversation on Lyme disease. ‘Patients Helping Patients’ was the title & was supported by Tick Talk Ireland. Organiser Ann says:
The colloquy was a huge success, with 120 attendees in that place, 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 are during the term of Lyme disease.
Many “New Patients” attended, that makes me so sad that subsequently all these years, nothing much has changed like regards early diagnosis and treatment, we had Patients from wholly over Ireland North and South.
The actual sad situation of Misdiagnosis is a in earnest Problem, which we wish, with Education on the side of the Medical profession and the Public that efficacy change over the coming years.
I really appreciated that Dr Armin Schwarzbach invited those European speakers forward our Behalf;-
Dr Herbert Rixecker( Dental Surgeon),
Dr Albin Obiltschnig( Orthopedic pointer Surgeon), who had Lyme disease himself.
Pol De Saadeleer ( PharmaD)
Dr Armin Schwarzbach did a miraculous presentation on the day.!
I was especially delighted that Dr Jack Lambert from the Mater Private hospital,Dublin, accepted my call to do a Presentation on the generation, which he also presents to groups of G.P’s on all sides Ireland, on behalf of the Mater Private hospital.
Of order, it seems our testing needs to improve, only that is a worldwide problem because well.
All in all the interview was a success. It’s remarkably hard for patients to organise these huge events but we do it to save raise awareness, bring patients and doctors cheek by jowl and to hope for a in a superior manner future!
Some upcoming confs in the UK are listed in the present life at: http://lymediseaseuk.com/2016/03/20/upcoming-events-3/
For sundry years now we have had a rolling take a view of which we publish every 18 months to 2 years. In May 2016 we released our latest results. Here are some snippets of the <a href=”http://http://www.ticktalkireland.org/surveys.html”
Snippets from the Lyme mensuration – full report available via PDF
127 rabble replied to the survey during the months of July 2009 to expiration April 2016:-
When asked which abiding habitation the tick-borne infection took impute, 64% of our respondents were infected in Ireland and 18.5% in North America. The remaining 17.5% listed Europe in the manner that their source of infection.
An overwhelming 41% of respondents reported they were infected whilst out walking (in woods, forward a beach, by a lake or in a park). 10% indicated they were infected in their confess gardens & 6% whilst camping.
52% patients waited a year or in greater numbers before receiving a diagnosis
86 used up of our 127 respondents have been evil for more than a year in TOTAL including pre & stigmatize treatment which is an alarming 68%.
Nearly a THIRD of these patients (25 lacking of 86) have been ill because of 10 years or longer.
Regarding misdiagnosis, 38 the masses indicated they were previously diagnosed by ME (chronic fatigue syndrome), 21 men were told they had psychiatric disorders, 15 had FMS (fibromyalgia), 10 MS (multiple sclerosis) & 1 somebody was misdiagnosed with Parkinson’s complaint.
Symptoms among our respondents were expanded ranging, particularly in those that esteem been ill for a long time. The highest answer rate of symptoms included profound hardship (81%), weakness (79%), muscle aches (78%), sterile concentration (74%), migratory joint pain (70%), strong neck (70%),
tingling/numbness (68%), rest disorder (67%), poor memory (66%), headaches (66%), dizziness (64%), precision (63%) & brain fog (62%).
It is pleasing to note that the erythema migrans (EM) venturesome was only present in 43% of the patients at the set on foot of the illness and 22% bear multiple EM’s during the behavior of the illness. This shows that a impulsive is not always present or equitable noticed.
A shocking 55% of our respondents stand 20 symptoms or more as lot of their illness.
20 respondents desire consulted a Lyme specialist in the UK, 17 went to the USA, 14 went to Germany, 2 to Switzerland, 3 in other talents of Europe (France, Portugal & Hungary). 17 maxim a private consultant in Ireland.
For management 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 other therapies 29% of respondents have tried acupuncture, 28% Co-enzyme Q10, 28% massage, 23% wish taken Cat’s Claw/Samento, 21% homeopathy, 14% Alpha Lipoic and 14% glutathione. To relieve with symptoms, 48% use probiotics, 45% painkillers & accurate under a quarter of the patients reported they take anti-depressants.
109 the million responded to the last question – in the same manner with to which type of treatment had been the greatest number helpful. 74% answered antibiotics, 32% rated other therapy, 31% of people found supplements to have existence helpful, 26% found painkillers helped them whilst 29% mentioned ‘other’ methods helped (including massage, yoga, infra-red saunas & physiotherapy).
Snippets from the Tick view – full report available via PDF
The chiefly common area for ticks was each overwhelming 21% in Galway, 15% in Kerry, 12% in Cork, more 7% in Donegal & Clare.
44% of ticks were erect in tall grasses, 21% in private gardens.
46% of ticks were place whilst walking, 13% whilst gardening.
54% of ticks were erect on adults, 30% on dogs, 20% in c~tinuance children, 7% on cats, 4% forward deer
Was the tick attached whereas found?
87% of people reported that the ticks were attached to the skin when found (ie embedded).
13% reported that the trust was found crawling over the skin (mete NOT embedded).
51% of our respondents who had an embedded tick noticed that the bed-~ was engorged when found, which indicates the click has been feeding for some time. This greatly increases the accident of transmission of Lyme Disease granting that the tick was in fact infected through Lyme (borrelia) bacteria.
Lyme disease: Prof. Montagnier denounces the inefficacy of test protocols
June 19, 2016, 4:51 p.m.|
The Lyme ailment , transmitted by tick bites, is insufficiently diagnosed and treated in France, right to a “great ignorance on the eve its chronic nature,” said Sunday, at a conversation in Strasbourg, the Nobel Prize drug Luc Montagnier , who claims to possess made promising discoveries to better diagnose the situation.
“It is unfortunate that governments and hale condition authorities have not a coherent wisdom on Lyme disease,” denounced the co-discoverer of the AIDS venom.
“There are currently a sum ignorance on the subject of a great deal of of the medical and scientific community, “added Professor Montagnier, who was declamation during a study day devoted to this pathology, organized by” Lyme lacking borders “, an association of out of temper patients against the formal approach to the malady.
For Professor Montagnier, 83, the tests used today to discover the Lyme bacteria give too various “false negatives” because they are based forward the detection of antibodies, while more patients infected do not develop – or they hold been infected there too long in favor of this test method to be adequate.
The scientist, who worked in Paris in a scrutiny institute that bears his name, seeks to to lay open a diagnostic method of detecting in the kin plasma of traces of the DNA of the bacteria, ~ dint of. sensing the electromagnetic waves emitted ~ dint of. the sample. “I think this exhibition is more reliable” than those commonly in force, said the Nobel Prize, in which case agreeing that this electromagnetic approach was “not recognized ~ means of a number of scientists, so had the acid to get it validated. ”
27,000 just discovered cases of Lyme disease are officially reported reaped ground year in France, but according to the association” Lyme without borders “, this figure is in performance much more important, in the method of” ten times more “.
Detected moreover late, the disease – for which there is no vaccine – have power to have severe and debilitating neurological consequences despite patients.
According to the members, numerous patients, sometimes nailed in a wheelchair, have “wandered” from doctor to adept and sometimes treated hypochondriacs lack of legitimate diagnosis.
“Yet even 10 years in the pattern of the condition (a tick bite, ed), it may exist that the bacterium is there, occult in the body, “said Professor Montagnier. In in the same state cases, it is very important to solicit the right diagnostic to offer method of treating with antibiotics, which “can subsist effective,” he said.
For a direct the eye at the similarities between Aids & the Lyme movement put a damper upon out our recent blog post (conceive about half way down the hurry for details ‘Is Lyme the repaired Aids?’).
– in the UK there have been moves to create helpful guidelines for GP’s to follow regarding treatment and diagnoses of Lyme malady. 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 disorder which as yet has no known cure or do you believe that Lyme is shortlived, submissive to treat and therefore suggest a usage in the box approach. Research does elucidate that Lyme bacteria is very beset with ~y to treat, it can evade antibiotics like well as the immune system, it is mould shifting and can be protected by biofilm. More recently it has been suggested that borrelia can even hide inside nematode worms causing lewy material substance dementia. Can this be a efficient ~ of some types of alzheimers?
During a encounter with Prof Whitty (investigator who command lead a government review into Lyme infirmity) there was a suggestion that scientists who bring forth strong opinions on either side of the ground (short lived v chronic Lyme believers) power of determination be disregarded from review. However, in what place does that leave scientists such for example Eva Sapi & Dr Alan McDonald, the couple with first hand knowledge of Lyme indisposition? They have studied Lyme bacteria in principal deal and understand the bug besides than many – is it ingenuous to disregard their expertise because of their involvement in the Lyme common? I’m sure patients are delaying with some trepidation to the consequence, a review is needed but not at the expenditure of ignoring a whole section of investigation.
Here is a link to Caudwell Lyme Charity’s assemblage with Prof Whitty, plus Lyme Group UK’s reply to a petition that was submitted to the form of sovereignty.
Meanwhile, many Lyme groups are infectious part in the NICE guideline re-examination, inc Lyme UK, Viras & Lyme Disease Action. Tick Talk has offered it’s paragraph on testing concerns (PDF) which has been accepted ~ means of the NICE guidelines committee.
Irish documentary team looking as antidote to backers, take a moment to watch the video, it’s kernel wrenching..
Q10 – Among the limit of Natural Cures For prime Arterial character impressed The natural supplement coenzyme Q10 looks expert known within the homeopathic world on this account that of its organic healing properties.