May 10th & 11th marks a momentous occassion all around the world. Lyme sufferers are joining hands to rally outside government offices, state buildings, parks & monuments, flash mobs are getting together, banners made, videos posted & lots of comraderie taking place. But why do patients have to rally, surely this ‘easy to cure disease’ is nothing to worry about right? Wrong! Sadly many patients are not diagnosed early enough leading to a chronic form of the disease which can be challenging to treat, symptoms multiply over time & can mimic many other diseases, testing can be hit or miss. Plus controversy surrounding Lyme disease can discourage consultants from treating. A huge change in attitude is needed across the world to ensure that Lyme patients are taken far more seriously. Here’s a video that we have put together on behalf of our sufferers in Ireland, many of whom had to travel overseas for treatment.
Backing music by Irish band Stone Trigger..
Patients in the UK are rallying outside the Dept of Health on Friday May 10th 2013. Tick Talk Ireland have sent some lyme ribbon balloons & stickers to add our support. We wish them well. Here’s a video showcasing UK & Irish patients (thanks for a great video guys!)
Other videos relevant to Europe have been posted in our last blog post, one containing patients across Europe (inc UK & Ireland) & parts of Canada & another video showing how the worldwide protest was set up. Check out the links at: http://ticktalkireland.wordpress.com/2013/05/02/news-updates-may-2013/
Here’s some stories from Irish lyme patients inc some infected here & some abroad…
My experience with Lyme Disease (by an Anonymous poster in Ireland)
I completely forgot how to count loose change (& I used to work in accounts!) I literally had to throw money on the counter & stupidly wait for the cashier to do it.
I completely lost my ability to type (this may not have been obvious at the time, but every other word had to be corrected by spell checker & half the time even IT didn’t know what I was talking about!)
I used to shake my husband awake at night, my body would go into weird vibrational spasms it started to wake me up too! Think earthquake coming from within.
I used to have rigors like going into a fit (they said this was viral but rigors are a sign of a serious bacterial infection).
I would forget something within seconds, if I ask you if you want tea or coffee I would not remember the answer or even whether I’d asked the question. I would come back in the room say did I ask if you wanted tea or coffee? Yes you did. And what was the reply?
I would have a scarlet fever type flushed face you could cook an egg on but have goose bumps all down by blanket laden arms (on a daily basis).
My voice would break up on a regular occasion so I sounded like a heavy smoker (& I’m not!)
I would have random rashes that even the doc couldn’t give me creams for, as he had no idea what it was.
I would recover from the feeling of having flu only to repeat the same crap the following week after (for years at a time).
Shopping was always fun, just turning at the end of the shopping aisle would make me dizzy, my legs would buckle, the lights would give me headaches & I would feel like being sick. And the walk back to the car was not much fun either!
My bedding consists of 4 blankets, heated under blanket, heat pad for back, heat pad for hands & feather filled slippers – & that’s on on top of fleecey pjyamas!
I spend all days wrapped up in blankets even in the summer!
I just have to say ‘it’s me’ & the doctors office know exactly who’s calling, they are my new best buddies now..
I’ve made a career out of going to hospital appointments – on a waiting list for 5 specialists at the moment, go me!! But I still keep a smile on my face, this disease won’t keep me down, I’m a true fighter
Click on link for Ann’s story (word doc Ann’s story)
Click on link for Ben’s story (word doc Ben’s story)
Sean O’Connor’s story
I was very healthy and fit, and i was training for The Gael Force Challenge which is an adventure/endurance race in Westport Co. Mayo. I ran it in August 2010, the terrain i was running in was ideal for ticks, and after this everything started to go wrong.
First week i had constant pain in my right foot, sports injury is what i thought and the doctor agreed. Then insomnia kicked in, i was getting at most 2 hours sleep a night and the pain spread all over my body mainly on the right hand side. I was sent to A&E in Galway where i was lucky to see the same Doctor at every other visit i made to A&E after that. The first visit i had lost all power in my right foot (along with the pain and sleepless nights), the Doctor got a physio to look at me and after the first session with her she said it has to be viral. After a few more weeks of going to A&E every Monday morning, blood tests and physio i had lost 2 stone and was starting to look very sick.
On week 7 i woke up Monday morning with no feeling on the right hand side of my face, my eye and lip had dropped, so i went straight to the Doctor and he diagnose me with Bells Palsy.
We went straight to A&E where again i met the same Doctor she told me it was a symptom of a disease called Lyme, another blood test showed traces of Lyme and a lumbar puncture confirmed it. I was told i was stage 2 Lyme and had a very good chance at making a full recovery. After 2 weeks of intravenous antibiotics and 1 month of oral antibiotics i started to feel a bit better. I had on going physio to get my foot back to normal and have made a steady recovery, although i am not fully recovered (i have nerve damage to my right foot) i am lucky to be back to 90-95% health and am back running and keeping fit! Unfortunately my story seems to be rare to many are suffering and there is not enough awareness. But at least my local GP has diagnosed another person with Lyme after seeing what i went through which is a positive. Lets hope we hear of more positive stories, but the truth is they are far and few between.
*Stories from Tick Talk Ireland’s officers can be found here http://www.ticktalkireland.org/whoweare.html
*For stories of doctors with lyme (they can suffer too!) go to: http://ticktalkireland.wordpress.com/lyme-links/doctors-with-lyme/
*For more articles relevant to Lyme in Ireland check out: http://ticktalkireland.wordpress.com/lyme-links/irish-related-articles/
Luna is to be re-printed!
Our new children’s book ‘The Adventures of Luna & Dips‘ was such a hit that we ran out of copies within days. Re-prints are underway, available to schools across Ireland.
Any schools interested are welcome to contact us at info(AT)ticktalkireland.org (replace AT with @ when sending email!)
Invitation to Health & Safety Talk
Tick Talk has been invited back to speak at another Health & Safety Conference on May 15th in Kilkenny. Flyer is attached PDF (hit back button to return to page!) (Event Flyer May 2013).
Good news, Tick Talk Ireland pledged a donation to Eva Sapi’s microscope fund!
For more on the project go to:http://www.indiegogo.com/projects/stop-the-suffering-with-lymedisease-org-support-dr-sapi-s-research?c=home
‘The controversy in Lyme disease research is a shameful affair’ says Willy Burgdorfer
‘The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing. Serology has to be started from scratch with people who don’t know beforehand the results of their research. There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, “You tell the guy to get out of here. I don’t want to see him.” That is shameful. So [this] shame includes physicians who don’t even have the courage to tell a patient, “You have Lyme disease and I don’t know anything about it’ – Dr. Willy Burgdorfer
‘The good physician treats the disease; the great physician treats the patient who has the disease’ – Sir William Osler
Dr. Kenneth Liegner, an MD treating a large number of Lyme patients in Armonk, New York, summarized the plight of Lyme physicians:
“Physicians who have cared for persons with chronic Lyme disease have faced harassment at a minimum and for some, their careers have been ruined. Researchers who have seriously dedicated themselves to the scientific study of chronic Lyme disease in humans and/or animals have often found themselves attacked or marginalized. To persist in their researches would have resulted in virtual career suicide and some have been forced, by exigencies of survival, to leave the field.”
‘Greater efforts are needed to provide education for prevention and early diagnosis to avoid late complications. Further improvements in diagnostic tests would be welcomed’
(Sue O’Connell 2010 – Inst of Medicine Workshop UA)
Chronic Lyme Disease: An Evolving Syndrome 9th Annual International
Scientific Conference on Lyme Disease & Other Tick‐Borne Disorders
Benjamin J. Luft, M.D. Professor
Chronic Lyme disease patients may be seropositive or seronegative
with or without a documented history of Lyme disease.
Since Lyme disease is a clinical diagnosis, research must continue to
improve diagnostic assays using recombinant proteins which are more
sensitive and specific than the whole organism sonicate used for both
ELISA and Western blots.
Chronic neurologic manifestations of Lyme disease. Steere et al
To define further the chronic neurologic abnormalities of Lyme disease
we studied 27 patients (age range, 25 to 72 years) with previous signs of
Lyme disease, current evidence of immunity to B. burgdorferi, and chronic
neurologic symptoms with no other identifiable cause.
Eight of the patients had been followed prospectively
for 8 to 12 years after the onset of infection.
Survival of Borrelia burgdorferi in antibiotically treated patients with Lyme
borreliosis. Preac-Mursick et al
Patients may have subclinical or clinical disease without diagnostic antibody
titers to B. burgdorferi.
We conclude that early stage of the disease as well as chronic Lyme disease
with persistence of B. burgdorferi after antibiotic therapy cannot be excluded when the serum is negative for antibodies against B. burgdorferi.
Seronegative Lyme disease. Dissociation of specific T‐ and B‐lymphocyte
responses to Borrelia burgdorferi. Dattwyler et al
We conclude that the presence of chronic Lyme disease cannot be excluded
by the absence of antibodies against B. burgdorferi and that a specific
T‐cell blastogenic response to B. burgdorferi is evidence of infection in
seronegative patients with clinical indications of chronic Lyme disease.
(And yet T cell testing is being ignored by consultants around the world)
Check out this new paper on persistence of infection (PDF download) hit back button to return to page!
For more on chronic lyme / persistence head on down to: http://ticktalkireland.wordpress.com/lyme-links/chronic-lyme/
To all the lyme warriors out there – GOOD LUCK for world protest day &
thank you to all the organisers who are working hard behind the scenes