LYME DISEASE FORUM NY 21 MAY 2012

Tuesday 22 May 2012

LYME DISEASE FORUM NY 21 MAY 2012

Watch live streaming video from skidmorevideo at livestream.com

I am not sure how long these will be available but they are such excellent presentations that I decided to re post them.

This is from NY.....put on by Cong. Chris Gibson NY. (Website for forum info www.lymenext.org.) It is being live-streamed at www.livestream.com\skidmorevideo It is also being archived for awhile, so you can click on the Mon., May 21 Video and see the whole thing from the beginning.

Schedule of Presentations Schedule Times are approximate
9:00 Morning Session OpensChristina T. Fisk, Co-Chair Organizing Committee Welcome to LymeNEXT Congressman Chris Gibson, 20th Congressional District, NY
9:15 Keynote Address Into the Woods: The Patient Journey through Lyme Disease Pamela Weintraub, Executive Editor, Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic
10:00 The Scope and Economic Burden of Lyme Disease An Epidemic of Lyme Disease? Holly Ahern The Economic Impact and Burden of Lyme Disease Lorraine Johnson
11:00 Break
11:15 A Diagnosis that Fits the Disease - Multiple Chronic Infectious Disease Syndrome (MCIDS) Richard I. Horowitz, MD
Noon Lunch Break An optional one-price ($10) dining option is available for Forum attendees. Lunch will be held in the Murray-Aikins Dining Hall on the Skidmore Campus. See program for menu.
1:20 Afternoon Session Opens Christina T. Fisk, Co-Chair Organizing Committee
1:30 Protecting Physicians who Treat Lyme Disease Daniel Cameron, MD
2:00 Preventing Transfusion-Transmitted Babesiosis David Leiby, PhD
2:30 Break 2:45 New Methods for Lyme and TBD Detection Ahmed Kilani, PhD
3:15 A “Manhattan Project” for Lyme Disease Kenneth Liegner, MD
3:45 Closing Remarks Congressman Chris Gibson

7 comments:

Joanne23 May 2012 at 22:08
Part two 1:46:00 Kenneth Leigner MD What an amazing presentation - telling it as it is.
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Camp Other24 May 2012 at 18:33
Thanks for posting these videos, Joanne. I just linked to them and gave you credit in a blog entry I made on Holly Ahern's presentation - this one focusing on her mention of EM rash studies. (http://campother.blogspot.com/2012/05/lets-not-be-rash-about-erythema-migrans.html)

I am still working through the videos and have yet to see what Liegner has to say - I'll make sure to give it a look due to your positive feedback.
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Joanne24 May 2012 at 20:31
Hi Camp I look forward to reading your blog post, like you I am still working my way through but in a random order. I particularly wanted to see what Ken Liegner had to say after his very pointed letter to IOM Workshop - he did not disappoint - he made a very passionate presentation - hardly any wonder since he has been opposing the denial of chronic Lyme disease since the early 90's certainly since Vickie Logan tested positive PCR by CDC after many months of IV and other antibiotics - I had are read of Pam Weintraub's book Cure Unknown to check some details - her book is a useful reference. Pam also did an interesting presentation.
I hope someone puts these presentaions onto U tube for future reference because I am not sure how long they will be available for.
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Camp Other25 May 2012 at 18:08
Dr. Liegner is very good at public speaking and totally comfortable with doing it from what I can see. He can really hold the audience's attention, and the passion you're talking about shows.

He had a lot to say and some of it is pretty shocking... I knew about the Logan case from Cure Unknown and UOS, and have mentioned it before. I got into some discussion with Pam Weintraub about her case on iymedisease.org, and she pointed out Ms. Logan was exceptional and most cases aren't like hers; that Ms. Logan had no spleen would have made a big difference in her ability to clear the infection. Yet it is a case advocates point to when trying to demonstrate persistence of spirochetes after antibiotic treatment in a human host when there aren't many human examples.

I'm still thinking about what Liegner had to say about solutions and moving forward. If there's anything I agree with, it's the need for more research on chronic Lyme disease. I have to wonder how any of his ideas or Horowitz's would be funded and how studies would be designed; who would be conducting them.
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Joanne25 May 2012 at 19:36
Hi Camp Thank you for your interesting views - As you come from the perspective of Camp other I had to smile at your comments. Yes I am sure there is a middle ground and quoting case extremes is not always helpful but the fact of the matter is - here in the UK there is no proactive awareness coming from our Dept of Health and so doctors constantly miss that important window of opportunity to treat an early treatable infection- I know you had a similar experience so we will thoroughly agree on that point.

Science is moving forward and more and more cases are showing a chronic persistent infection despite antibiotic treatment- the studies in Mice , dogs and monkeys go a long way in supporting this persistence. Yes I realise not every case.

Medicine is not an exact science and is full of patients treated according to their response to treatment - why then is Lyme not allowed to follow this same path?

Not all patients respond as well as I did to antibiotics and much more research needs to be done but for those of us that do respond why do the 'powers that be ' think they must pull the plug, what do they think they are protecting us from?

I thoroughly understand why Kenneth Liegner presents so passionately it is all so shocking that the nay sayers get to dictate policy World Wide when they are talking about many different species not to mention the many different strains which Ben Luft so clearly points out are capable of different outcomes.

This whole business is disgraceful and the bottom line about money and reputation - lives are no consideration but once politicians realise that from an economic perspective leaving patients sick that could be made well and preventing disease morbidity as Lorraine Johnson so clearly illustrates must at least help drive things forward.

I hope to get chance to listen to more later and check out your blog. I have just recently read Pam Weintraub's presentation which she posted on Facebook - hopefully I will copy and past on a post on this blog shortly.

On a different note I really appreciate your comments. It surprised me that I don't often get comments on this blog unlike my garden blog. I do however get a number of people who are trying to advertise which I delete.

Nevertheless I have had 77970 page views so not completely falling on deaf ears and apart from that I find it a very useful resource for finding info - especially as a recent computer crash meant I lost all my documents that I'd saved.
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Camp Other26 May 2012 at 22:12
It is very clear to me that more recognition of Lyme disease on even the most basic level must take place in the UK in order to ensure people are diagnosed properly and treated early. I'm hoping that efforts in raising awareness and the work of Lyme Disease Action and BADA will continue to help with this situation.

I know medicine is not an exact science and is an art, and I think that in the case with Lyme disease, individual patients need additional treatment above and beyond the guidelines. The kind of research I think everyone would like to see to combine more science with the art would be if we could which Lyme disease genotype patients are infected with so patients know if they are at greater risk for more problems - and ensure such patients got additional treatment when the disease is in its acute stage. That would help.

In the meantime, it's empiric therapy time. LLMDs give patients antibiotics based on their history and symptoms, and see how well the patient responds to therapy. If they respond well, then the correct treatment has been found.

The whole situation is disgraceful. I agree with you, and there is no "middle" for me on this count. My life has been changed overnight by this disease (at first) and then changed for the long run. There are opportunities I have lost which I will never have a second chance to try for again because of Lyme disease. I get to live with and suffer with the consequences of this - but those who are not putting the money and effort into research that would help us are not suffering or living with the consequences one bit.

Oh, you might want to check out my entry on the EM rash now, because Pam Weintraub commented there and had something important to add:

http://campother.blogspot.com/2012/05/lets-not-be-rash-about-erythema-migrans.html

I left her a comment broken into three parts - don't know when or if she will respond as it's somewhat dense reading and asks a number of questions.

Re my comments: I appreciate your blog, so it all works out.

I would think more gardeners would comment on both blogs, as Lyme disease and gardening can unfortunately intersect with each other. But perhaps it is somewhat of a relief to hope that gardeners may not be getting Lyme disease that often and are protecting themselves better these days? (One hopes!)

No, 77,970 page views is not small potatoes for a blog on Lyme disease. You are providing a number of people with useful information they otherwise may not have known. I'm sorry your computer crashed, but it's good to know some of your documents were backed up here in some form.
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Lyme disease teatment1 January 2013 at 08:28
As a result of participation in this conference, attendees will be better able to diagnose tick-borne infections and understand the pathogenesis of Lyme disease. Attendees will feel much better armed to educate and treat patients with tick-borne diseases. This will result in a greater openness to discussion with patients and colleagues about tick-borne illnesses. Healthcare providers will be better equipped to explain to patients the new developments in the area of how the immune system may be causing persistent symptoms. Specific educational objectives of the activity include the following:
~ To learn about antibiotic tolerance & microbial persistence
~ To learn about blood brain barrier & the impact of Borrelial infection
~ To learn about Antiphospholipid antibodies in patients with purported chronic Lyme disease
~ To learn about serologic tests for Lyme disease
~ To learn about genome stability of Lyme diseases Spirochetes
~ To learn about neurologic Lyme Disease & Alice in Wonderland syndrome
~ To learn about nutrition & Lyme disease
~ To learn about considerations in the diagnosis & treatment of Tick-Borne diseases
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Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.

ME/CFS, Fibromyalgia, Poly Myalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

UPDATE

UPDATE 10 January 2012