Lyme sufferer Ann Maher has been organising quiet meetups in Ireland for a enumerate of years now. This year the meetup developed into Ireland’s 2nd meeting for consultation on Lyme disease. ‘Patients Helping Patients’ was the appellation of dignity & 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 round the Country, Dental surgeon, Cardiac consultant, 2 Pharmacists and a County Councillor from Kerry, what one. is a high risk area because Lyme disease.
Many “New Patients” attended, which makes me so sad that later all these years, nothing much has changed being of the cl~s who regards early diagnosis and treatment, we had Patients from tot~y over Ireland North and South.
The surpassingly sad situation of Misdiagnosis is a grave Problem, which we wish, with Education on this account that the Medical profession and the Public that ability change over the coming years. Of road, it seems our testing needs to improve, on the contrary that is a worldwide problem because well.
I really appreciated that Dr Armin Schwarzbach invited those European speakers on our Behalf;-
Dr Herbert Rixecker( Dental Surgeon),
Dr Albin Obiltschnig( Orthopedic conduct Surgeon), who had Lyme disease himself.
Pol De Saadeleer ( PharmaD)
Dr Armin Schwarzbach did a extraordinary presentation on the day.!
I was especially delighted that Dr Jack Lambert from the Mater Private hospital, Dublin, accepted my bidding to do a Presentation on the appointed time, which he also presents to groups of G.P’s right and left Ireland, on behalf of the Mater Private hospital.
Dr Lambert furthermore presented data in a poster sitting on the first 100 patients from the Irish prospect, in June 2016 ILADS conference in Helsinki & will also be appearing at the upcoming Vis-a-Vis interview in London this October.
All in altogether the conference was a success. It’s surpassingly hard for patients to organise these lofty events but we do it to avoid raise awareness, bring patients and doctors into union and to hope for a improved in health future!
Some upcoming confs in the UK are listed to this place at: http://lymediseaseuk.com/2016/03/20/upcoming-events-3/
For single years now we have had a rolling review 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 observe – full report available via PDF
127 humbler classes replied to the survey during the months of July 2009 to end April 2016:-
When asked that country the tick-borne infection took order of importance, 64% of our respondents were infected in Ireland and 18.5% in North America. The remaining 17.5% listed Europe for the re~on that their source of infection.
An overwhelming 41% of respondents said they were infected whilst out walking (in woods, simultaneously a beach, by a lake or in a park). 10% indicated they were infected in their hold gardens & 6% whilst camping.
52% patients waited a year or greater degree of before receiving a diagnosis
86 out of our 127 respondents have been very unwell for more than a year in TOTAL including pre & put in the mail treatment which is an alarming 68%.
Nearly a THIRD of these patients (25 off of 86) have been ill towards 10 years or longer.
Regarding misdiagnosis, 38 mob indicated they were previously diagnosed by ME (chronic fatigue syndrome), 21 people were told they had psychiatric disorders, 15 had FMS (fibromyalgia), 10 MS (multiple sclerosis) & 1 bodily substance was misdiagnosed with Parkinson’s distemper.
Symptoms among our respondents were extensive ranging, particularly in those that be the subject of been ill for a long time. The highest answer rate of symptoms included profound fatigue (81%), weakness (79%), muscle aches (78%), not worth a sou concentration (74%), migratory joint pain (70%), tenacious neck (70%),
tingling/numbness (68%), repose disorder (67%), poor memory (66%), headaches (66%), dizziness (64%), spissitude (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 move of the illness and 22% be in possession of multiple EM’s during the bearing of the illness. This shows that a exanthema is not always present or unruffled noticed.
A shocking 55% of our respondents be put to inconvenience 20 symptoms or more as part of their indisposition.
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 intellect of Europe (France, Portugal & Hungary). 17 saying 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 choice therapies 29% of respondents have tried acupuncture, 28% Co-enzyme Q10, 28% massage, 23% receive taken Cat’s Claw/Samento, 21% homeopathy, 14% Alpha Lipoic and 14% glutathione. To better with symptoms, 48% use probiotics, 45% painkillers & appropriate under a quarter of the patients reported they take anti-depressants.
109 the masses responded to the last question – at the same time that to which type of treatment had been the in the greatest degree helpful. 74% answered antibiotics, 32% rated other therapy, 31% of people found supplements to subsist helpful, 26% found painkillers helped them whilst 29% mentioned ‘other’ methods helped (including massage, yoga, infra-red saunas & physiotherapy).
Snippets from the Tick observe – full report available via PDF
The in the greatest degree common area for ticks was an overwhelming 21% in Galway, 15% in Kerry, 12% in Cork, more 7% in Donegal & Clare.
44% of ticks were plant in tall grasses, 21% in individual gardens.
46% of ticks were form in a mould whilst walking, 13% whilst gardening.
54% of ticks were cast on adults, 30% on dogs, 20% without ceasing children, 7% on cats, 4% adhering deer
Was the tick attached at what time found?
87% of people reported that the ticks were attached to the hide when found (ie embedded).
13% reported that the score was found crawling over the skin (but NOT embedded).
51% of our respondents who had each embedded tick noticed that the trust was engorged when found, which indicates the score has been feeding for some time. This greatly increases the fortuity of transmission of Lyme Disease suppose that the tick was in fact infected by Lyme (borrelia) bacteria.
Lyme ailment: Nobel Prize Winner Prof. Montagnier denounces the want of test protocols
June 19, 2016, 4:51 p.m.|
The Lyme sickness , transmitted by tick bites, is poorly diagnosed and treated in France, owing to a “great ignorance relative to its chronic nature,” said Sunday, at a meeting for consultation in Strasbourg, the Nobel Prize drug Luc Montagnier, who claims to esteem made promising discoveries to better diagnose the state.
“It is unfortunate that governments and soundness authorities have not a coherent cunning on Lyme disease,” denounced the co-discoverer of the AIDS virus.
“There are currently a whole ignorance on the subject of a great quantity of the medical and scientific community, “added Professor Montagnier, who was discourse during a study day devoted to this pathology, organized by” Lyme destitute of borders “, an association of in a passion patients against the formal approach to the ail.
For Professor Montagnier, 83, the tests used today to ascertain the Lyme bacteria give too multiplied “false negatives” because they are based put ~ the detection of antibodies, while some patients infected do not develop – or they accept been infected there too long as far as concerns this test method to be effective.
The scientist, who worked in Paris in a examination institute that bears his name, seeks to to bring to maturity a diagnostic method of detecting in the kindred plasma of traces of the DNA of the bacteria, through sensing the electromagnetic waves emitted through the sample. “I think this proof 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 rigid to get it validated. ”
27,000 modern cases of Lyme disease are officially reported cropped land year in France, but according to the association” Lyme destitute of borders “, this figure is in incident much more important, in the subordinate class of” ten times more “.
Detected also late, the disease – for that there is no vaccine – be possible to have severe and debilitating neurological consequences in the place of patients.
According to the members, crowd patients, sometimes nailed in a wheelchair, acquire “wandered” from doctor to teacher and sometimes treated hypochondriacs lack of seemly diagnosis.
“Yet even 10 years after the condition (a tick bite, ed), it may be that the bacterium is there, hermetic in the body,“said Professor Montagnier.
In of that kind cases, it is very important to question the right diagnostic to offer method of treating with antibiotics, which “can have ~ing effective,” he said.
For a mind at the similarities between Aids & the Lyme motion check out our recent blog stigmatize (see about half way down the announce for details ‘Is Lyme the strange Aids?’).
– in the UK there have been moves to create available guidelines for GP’s to follow regarding treatment and diagnoses of Lyme distemper. As we know from the Infectious Disease Society Guidelines of America, setting guidelines be able to be fraught with dangers. Do you accept that Lyme is a chronic, persisting complaint which as yet has no known antidote or do you believe that Lyme is shortlived, accommodating to treat and therefore suggest a handling in the box approach. Research does become visible that Lyme bacteria is very uncompliant to treat, it can evade antibiotics being of the kind which well as the immune system, it is create shifting and can be protected ~ means of biofilm. More recently it has been suggested that borrelia be able to even hide inside nematode worms causing lewy corpse dementia. Can this be a enterprise of some types of alzheimers?
During a auditory with Prof Whitty (investigator who behest lead a government review into Lyme malady) there was a suggestion that scientists who be seized of strong opinions on either side of the summary (short lived v chronic Lyme believers) devise be disregarded from review. However, in which place does that leave scientists such being of the cl~s who Eva Sapi & Dr Alan McDonald, both with first hand knowledge of Lyme disease? They have studied Lyme bacteria in much deal and understand the bug more than many – is it passable to disregard their expertise because of their involvement in the Lyme community? I’m sure patients are expectation with some trepidation to the issue, a review is needed but not at the cost of ignoring a whole section of examination.
Here is a link to Caudwell Lyme Charity’s congregation with Prof Whitty, plus Lyme Group UK’s reply to a petition that was submitted to the government.
Meanwhile, many Lyme groups are seizing part in the NICE guideline review, inc Lyme UK, Viras & Lyme Disease Action. Tick Talk has offered it’s paper on testing concerns (PDF) which has been accepted by the NICE guidelines committee.
Irish documentary team looking according to backers, take a moment to watch the video, it’s mind wrenching..
Meanwhile, don’t consign to oblivion to protect your family this summer. Check uncovered our latest article published in ‘My Kids Time’ suffusion site
Why It’s Important to Protect Your Family from Ticks
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