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 They are using outdated science & yet the Irish Health Protection & Surveillance Centre, Infectious Diseases Society of Ireland, Irish Society of Clinical Microbiologists, Irish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out the recent petition by a Patient Centered Care Advocacy Group who want to stop preferential treatment using IDSA outdated advice & give patients the option to use ILADS guides where warranted.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
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:
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.
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!)