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Posts Tagged ‘Lyme doctors’

IDSA Guidelines Removed

Did you know that the IDSA guidelines are no longer listed on the guidelines clearing house? They are using outdated science & yet the Irish Health Protection & Surveillance Centre, Infectious Diseases Society of Ireland, Irish Society of Clinical Microbiologists, Irish Institute of Clinical Neuroscience and the Irish College of General Practitioners all continue to cite unison (see PDF) with the IDSA (Infectious Diseases Society of America) as being & I quote ‘the best and most effective synthesis of the available evidence on the treatment of Lyme disease.’

Isn’t it time that the ILADS (International Lyme & Associated Disease Society) guidelines be given more respect seeing as they ARE in the guidelines clearing house & use the GRADE system for their guidance?

We do know that there is no one size fits all treatment for Lyme disease & the doctor may need to use his clinical judgement when treating the illness, so quoting a finite number of weeks for treatment with only limited treatment options (as the IDSA guide does) perhaps is not in the patient’s best interest.

Check out the recent petition by a Patient Centered Care Advocacy Group who want to stop preferential treatment using IDSA outdated advice & give patients the option to use ILADS guides where warranted.

We also value the guide written by Dr Burrascano, suggesting treatment options depending on the stage of the disease, various co-infections plus supportive therapies, as a useful source of information…
http://www.ticktalkireland.org/Dr Burrascanos Guide 2008.pdf

 

Meetings

Recently, Tick Talk volunteer Ann Maher attended another meeting at the Dail to discuss issues surrounding Lyme disease. Ann says ‘Last year, with the help of my local T.D John McGuinness, we organised a Briefing Session in Leinster house. Many Patients travelled from around the Country and it was amazing. Cross party T.D’s attended at various times during the afternoon.

That Led to our infamous Meeting in June 2015, arranged by former T.D Noel Coonan, with Leo Varadkar, Minister for Health, a few patients were also invited. To say that Meeting was disgraceful, is putting it mildly. We were all very upset (that we weren’t taken seriously).

After our recent election, I emailed Re elected and New T’D.s & received an email from an Taoiseach’s Secretary to say they had forwarded emails to the current Health Minister, Simon Harris. In turn his Secretary forwarded email to Marcella Corcoran Kennedy, Junior minister in Dept of Health & I received a call to say she was interested in a Meeting in the beginning of August 2016.

I attended with Nicci (who did all the videoing for the conference, free of charge), even though she was ill, she agreed to go & a patient from Wicklow, who I met briefly at the conference came too. He and his young Son were just back after having treatment in Germany.

Other attendees at Meeting..
Minister Corcoran Kennedy
Doctor from HSE.
Doctor from HPSC
and another guy taking notes.

Patient from Wicklow told his story of how he and his young son were let down by our Health Service. etc. Nicci told how she had been originally treated for Lyme disease in the states with the Recommended 3 Weeks antibiotics (& she is still very ill)!!

I told them about our small annual Meetings and how they have Grown, to a full Day conference this year! (see pics of past patient meetups & conferences here).

I presented the Minister and Doctor with a small folder-
With information about how the IDSA guidelines are Removed for now, the same flawed guidelines that we follow
Tick Talk information “Lyme disease in Ireland (PDF)
Plus much more information.

They were on about clinical Diagnosis and I told them, if my Bell’s Palsy was recognised in 1997 as a serious symptom of Neuroborreliosis and treated, i wouldn’t still have paralysis in my face and throat.’

As a follow on from that meeting, Ann was invited to join the Vector-Borne Sub Committee Meeting this Autumn as a patient representative. The committee met back in March (PDF) & agreed that ticks are the most dangerous vector in Ireland with Lyme disease ranked as the highest risk. Therefore having someone invited from a Lyme disease group is encouraging although we do feel sad that it took so long to receive an invite. We will keep you posted as we know more!

For other patient led meetings go to:
https://ticktalkireland.wordpress.com/2013/12/02/hear-hear/

 

Videos

In our last blog post we sent news of a recent conference called ‘Patients Helping Patients‘. I am pleased to say that a recording has been made available by film maker Nicci St.George Smith which includes snippets of the conference presentations plus some interviews with speakers & patients.

I’m sure you’ll agree that it really captured the atmosphere of the day..

One of the speakers Dr Albin Obiltschnig, a hand surgeon, was a Lyme patient himself & could not work for 2 years, he says all doctors should have experience of Lyme disease & then they would believe more patients.

 

Doctors

On the subject of doctors with Lyme, Dr Neil Spector, Lyme sufferer & author of Gone in a Heartbeat who is a medical oncologist and cancer researcher, tells of his story in this amazing Fox news interview on how his diagnosis was missed, due to poor Lyme testing & he nearly went into heart failure as a result.

In a recent letter to the Massachusetts Governor in support of a recent Lyme bill he says ‘I am not a Lyme disease physician. I had to learn more than I ever cared to know about this disease(s) due to my own misdiagnosed case that necessitated a heart transplant and nearly cost me my life.

People in your state and around the country are suffering, falling through the cracks of our medical system.

These folks have Lyme disease and the co-infections that accompany Lyme disease. Similar to the days before the acceptance of h. pylori as a cause of peptic ulcer, there is a dogmatic approach that says that chronic problems from Lyme or co-infections that persist beyond the IDSA algorithm of care does not represent persistent infection. However, based on excellent research from prestigious institutions such as Johns Hopkins Medical Center, hardly a bastion of quackery, we know Borrelia burgdorferi, the bacteria that causes Lyme disease, becomes resistant to the standard antibiotics prescribed according to Infectious Disease Society of America (IDSA) guidelines. We know there is persistent infection in primate studies based on peer reviewed research from scientists at Tulane and other institutions.

The truth is, we have failed our fellow human beings who are suffering by accepting a dogmatic approach that is not founded on solid science.

In 2016, where cancer patients are afforded cutting edge genomic science to guide diagnosis and treatment, Lyme disease diagnostics are still rooted in less than cutting edge and low sensitivity indirect immune response diagnostics (ELISA and Western blot, the latter I have performed hundreds to thousands in my own research so I’m very familiar with the strengths and weaknesses of the assay). This doesn’t take into account the fact there are different variants of Borrelia that might not be detected by current diagnostics.

For the full letter go to: https://www.facebook.com/NeilSpectorMD/posts/827851130649405

Meanwhile to see how Lyme has affected doctor’s & nurses lives (whom many had to struggle for the right for proper treatment) please see the link below: https://ticktalkireland.wordpress.com/lyme-links/doctors-with-lyme/

For anyone interested Dr Neil Spector (plus Ireland’s Dr Jack Lambert) will be presenting at the upcoming Vis a Vis Symposium in London this October (2016).

The conference is for doctors, scientists, vets & students so if you know of anyone who may be interested please pass the news along. I understand the entrance will be free of charge (sorry, no patients tho!)

Vis Symposium

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do you want lime with that?!So you’ve had that final diagnosis, it isn’t chronic fatigue syndrome after all, you don’t ‘just need’ anti-depressants & cognitive behavioural therapy & finally you can get onto treatment for that bacteria living inside you. But then you have the sinking realisation that treatment for Lyme disease could in fact make you worse! In this post I will delve into the phenomenon of herx reactions, what they are & my own interpretation of the differences between a herx, a flare & a crash…

Click to download PDF

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Clontarf Castle, Dublin. 5/6 June 2012

WHEN:

Half day Tuesday 5th June – protection & prevention tips, plus tick-borne infections in animals

Full day Wednesday 6th June – lyme disease in humans including testing, treatment & research

WHERE:

Clontarf Castle, Dublin (close to the airport, city centre, motorways & ferry terminals)

WHO:

The conference will be suited to the following audience:

Tuesday session – members of the public who enjoy walking, camping or hunting, pet owners, farmers, park rangers & vets

Wednesday session – patients of diagnosed or suspected tick-borne diseases, doctors, nurses & interested scientists

TOPICS OF PRESENTATIONS:

Afternoon Tuesday 5th June:

Jenny O’Dea: Lyme Disease in the UK & Ireland – results of our tick studies & plus methods of protection
Dr Healy: The Factors Influencing the Density and Distribution in Space and Time of the Tick Ixodes ricinus
Dr Paul Nolan (GP, Ireland): Prevention is better than no cure
Jyotsna Shah (Igenex, USA): A comprehensive approach for diagnosis of Lyme and associated Diseases
Mícheál Casey (Head of Regional Vet Labs): An overview of tick-borne disease in Irish farm animals

All day Wednesday 6th June:

Dr Joseph Jemsek: – Dawn of a New Paradigm in Chronic Illness – The role & relevance of Lyme Borreliosis Complex
Dr Eva Sapi: – Killing Borrelia – is it possible?
Dr Armin Schwarzbach: Staging processes in the laboratory diagnosis of Lyme and co-infections by indirect laboratory tests
Dr Jean Monro – Supportive therapies for the Nervous System
Kate Bloor: An online survey of Lyme patient’s experience of health care in the UK and Eire
Nicola Darrell: Herbal Treatments for Lyme Disease – a look at treatment for lyme & management of post lyme symptoms

Please note that space will be allocated to allow for questions & answers

For details on registration & conference starting times please click here and for information on places to stay please click here. Cheap Flights are available through Ryanair or Aerlingus.

To reserve your ticket for the Lyme Conference go to:Conference Reservation

We also welcome exhibitors & sponsors, more information available on the link above.

Notes:

Conference Bookings:

Please note to avail of the early bird special (a saving of 5 euros per person) bookings must be received by 31st March 2012

Half Day Tuesday 5th June: registration begins at 1pm, conference runs from 1.30 to 5pm = 20.00 Euro (*price will rise to 25.00 from 1st April) – coffees are included in the price

Full Day Wednesday 6th June: registration begins at 9am, conference runs from 9.30 to 5pm = 40.00 Euro (*price will rise to 45.00 from 1st April) – coffees & buffet lunch are included in the price

Both Days (afternoon 5th June / all day 6th June): registration & conference times above are applicable = 50.00 Euro (*price will rise to 55.00 from 1st April) – coffees both days & buffet lunch on Wednesday are included in the price

For payments by cheque or money order please contact us for address details.

*Please retain your paypal receipt to show on arrival*

Hotel Accommodation:

Clontarf Castle has offered a rate of 109 per room (single) & 119 per room (double). To obtain this rate please quote the ref code: TICK TALK IRELAND – Valid until 4th March (now extended until March 18th) 2012 (for more choices on accommodation please click here)

Exhibitors:

Price includes 4ft table, coffee & wed buffet lunch (where applicable). Max 2 per table booked. 50% deposit payable now, remainder due 31st March 2012.

Please click here to download exhibitor’s booking form, more details are included on the form.

Coming from the UK? Here’s some tips on how to get to Ireland:

By Air:

Cheap flights are available through Ryanair or Aerlingus.

Euroline coaches:

Travel to Ireland with Eurolines is easy, we provide a range of services to over 40 destinations with prices starting from just £42 return to Dublin (price includes transfer by ferry)

Services operate from most major cites in Britain including Birmingham, Bradford, Bristol, Cardiff, Leeds, London and Manchester arriving at city centre locations saving on the need for expensive airport transfers.

http://www.eurolines.co.uk/coach/Destinations/Ireland/Ireland-index.aspx

Sail/Rail:

Why not combine the convenience of rail travel with your ferry crossing? Prices start from £32 per person each way.

http://www.irishferries.com/gb/fares-offers-ireland-from-britain.asp?tab=fares-sail

Irish Ferries:

Save up to 25% Car plus 1 from £79 one way. From £79 online fare for you and your car is valid for midweek travel (Mon – Thurs) on all cruise ferry services up to 30 June 2012. Must be booked a min of 7 days in advance of travel date and by the 27 Feb 2012.

http://www.irishferries.com/gb/fares-offers-ireland-from-britain.asp?tab=fares-sail

Stena Line:

Travel by ferry to Ireland with the Irish Sea’s leading ferry company from only £79 single for a car plus driver. Speed across the Irish Sea from Holyhead to Dun Laoghaire on our fastcraft or cruise over to Dublin City onboard one of our stylish Superferries.

http://www.stenaline.co.uk/ferry/ferries-to-ireland/

NB: Please note that Dublin Port & Dun Laoghaire are 2 seperate ports of entry to Dublin. Important to note when looking at directions to the hotel 😉

Wheelchair friendly hotels:

http://www.accessibleireland.com/search_by_county.php?county_id=1&facility_id=1

Wheelchair friendly B & B’s:

http://irelandbnb.com/dublin-bed-breakfast-wheelchair-access.html

Other B & B’s in the area:

http://irelandbnb.com/clontarf-bed-breakfast-dublin.html

Hotel Accommodation:

Clontarf Castle has offered a rate of 109 per room (single) & 119 per room (double). To obtain this rate please quote the ref code: TICK TALK IRELAND – Valid until 4th March 2012.

Other hotels in the area:

for more choices on accommodation please click here! 🙂

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Turn the Corner is dedicated to the support of research, education, awareness and innovative treatments for Lyme disease and other tick-borne diseases.

2011 Grants and Initiatives


Turn the Corner awards a grant to the International Lyme and Associated Diseases Society (ILADS) for the world renowned Physicians Training Program (PTP) (also available to European doctors willing to travel to the States for shadow training).

Founded and exclusively funded by TTC, the PTP continues to foster excellence in care for Lyme disease and tick-borne disease patients by providing medical practitioners the opportunity to study with Lyme-literate healthcare professionals.

Over 100 medical practioners have been trained and thousands of patients have been properly diagnosed and properly treated thanks to our groundbreaking signature program.

Read More About the Physicians Training Program.

* Turn the Corner awards a grant to Eva Sapi, Ph.D., University of New Haven. Since 2008, Turn the Corner has supported the research of Dr. Sapi. Dr. Sapi and her students at the University of New Haven have been studying the role of biofilms and nematodes in Borrelia burgdorferi, the bacterial agent of Lyme disease. Dr. Sapi has confirmed that the Borrelia bacteria is capable of hiding within a complex covering called biofilm, which increases its resistance to antibiotic treatment. Currently she is testing which agents will ensure that Borrelia cannot hide in biofilm during and after therapy. Dr. Sapi strongly believes this research will be vital to treating patients with chronic Lyme disease. Read a recent article about Dr. Sapi’s research.

* Turn the Corner is pleased to offer a video tape of the 2010 Lyme Disease Symposium “The Challenges of Lyme Disease: Emerging Research and Pediatric Care” hosted by Dr. Sapi at the University of New Haven.

* Turn the Corner awards a grant to M. Karen Newell, Ph.D., Texas A & M University Since 2009, Turn the Corner has supported Dr. Newell’s ground-breaking research project that has implications for improving quality of life for Lyme patients in the future. This study examines the genetics of chronic inflammation, which is a characteristic of every stage of Lyme disease. Using targeted peptides aimed at those that have the particular “immune response” genes associated with disease, Dr. Newell will attempt to reduce the inflammation caused by the Borrelia bacteria.

For details of previous grants honoured by Turn the Corner go to: http://www.turnthecorner.org/content/get-involved-0

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