Leave it to little Univ. of New Haven to lead the way here. Great speakers!!!http://www.newhaven.edu/unh/lyme/
I am doing a mass mailing to 300 (all) primary care physicians on the shoreline of CT between Milford and Old Lyme...where I live and was infected and misdiagnosed...
You will smile to know that Wormser and others from Yale are getting an invitation too.
Here is my letter to them encouraging their attendence. Sorry so long.. Please feel free to use it in your efforts... Hugs and healing Kim
Dear Doctor------------, With tick season here in Connecticut is in full swing, I would like to bring your attention to the second annual ``Current Trends in Lyme Disease Research'' symposium to be held on Saturday May 19th.at Dodds Hall Auditorium at the University of New Haven, 300 Boston Post Rd, West Haven, CT.
The speakers include cutting-edge scientists and physicians currently working in the Lyme field including Dr. Brian Fallon from the Columbia University Chronic Lyme research center.
As a Connecticut resident, wife and mother of two, I am deeply concerned about the controversy surrounding Lyme disease among members of the area medical community. Lyme patients trying to find correct diagnosis and proper treatment face a medical environment of closed mindedness and hostility. It is to the point where physicians are afraid to diagnose Lyme disease for fear of being dropped by insurance companies. This medical conflict has been compared to the early days of syphilis or AIDS.
My personal story began several years ago when my active, healthy lifestyle came to a drastic end. A multi-system illness began to disable me, starting with severe head and neck pain which eventually progressed to shooting neurological pain, chest and abdominal pain, crushing fatigue, weakness and finally cognitive impairment.
Almost a dozen area physicians of various specialties including primary care, two neurologists, gastroenterologist, rheumatologist, ENT, and an ER staff were stumped. All test results were negative including two for Lyme disease from Quest Labs.
At my lowest point, I couldn't leave my bed and cried in pain. I had to withdraw from school at the Lyme Academy, stop working and watch my family struggle to survive without their once vibrant mom. With no diagnosis, I felt like I was dying and at times the pain was so excruciating, I considered suicide.
After extensive research on my symptoms, I found that the tests for Lyme disease are unreliable and sought an infectious disease specialist to run additional tests. He sent my blood to Stonybrook Lab in NY and the Western Blot came back CDC positive for IgM, indicating active infection.
At first, I was relieved to find the cause of my terrible illness. Then relief turned to concern that 20 miles from Lyme, CT none of my doctors would make a clinical diagnosis based on symptoms--how many others were suffering silently?
According to the NIH website:
``All would agree that the successful management and treatment of any infectious disease - including Lyme disease - rests mainly upon early and accurate diagnosis. However, since the tests now being used for the diagnosis of Lyme disease are not as sensitive and specific as one would like, their results must be viewed with some reservations.
Until better tests are available, the diagnosis of Lyme disease must be based on characteristic clinical findings in which the results of laboratory tests play a supportive role. Consequently, primary care physicians in endemic areas must be familiar with all aspects of this disease and understand both the characteristics and limitations of laboratory tests commonly used for the diagnosis of Lyme disease.'' (Taken from http://www.niaid.nih.gov/dmid/Lyme/diagnosis.htm)
I was also amazed that the organism that causes Lyme disease is extremely complex, quite brilliant and considered one of the most ``stealth'' pathogens known to man.
Prominent microbiologist, Dr. Lida Mattman, was nominated for a Nobel Prize for her work on the book entitled ``Stealth Pathogens'' in 1997. She describes the Lyme bacteria, Borrelia burgdorferi (Bb), as a pleomorphic organism that can change form from a spirochete to a cell wall deficient form and back again. By doing so, it can evade the immune system resulting in the potential for false negative tests results--this is also true for the other spirochete (Bb's cousin), Treponema pallidum, a less complex organism that causes syphilis.
Now that I am on the path to wellness, (and owner of a company dedicated to medical education), it is my goal to improve awareness of this potentially disabling disease and encourage front-line physicians to challenge the status quo by learning from the cutting-edge scientists and physicians who are dedicated to making improvements in the diagnosis and treatment of Lyme disease and other tick-borne illnesses.
If you have questions about the conference please contact Dr. Eva Sapi, Assistant Professor and Director of the Lyme Research Center at the University of New Haven. Her phone number is (203) 479-4552, or you can e-mail her at [email protected]. I have enclosed the registration flyer or you may go online to http://www.newhaven.edu/unh/Lyme/.
I hope to see you at the conference.
Regards,
Kimberly Bruni [email protected] Posted by humanbeing (Member # 8572) on :
Up... Look at the speaker lineup...Dr. B, Dr. H, Dr. P, Dr. S...this should be an excellent day.
If you live in New England, please print out the flyer and registration form and give to all the docs you know in your area...this is an amazing opportunity to have our very best showing science and helping spread the word.
Thanks Kim
Posted by timaca (Member # 6911) on :
humanbeing~ You're doing a great thing mailing out so many flyers. May I suggest, however, that you reduce the length of your letter by a lot? Most physcians do not have the time to read something as long as your letter from someone that they don't know. A couple paragraphs max is about what you should send.
I sent flyers to Mayo Clinic AZ as they missed my diagnosis. I sure would like to see someone from there go!
Good for you for doing what you are doing....I hope your efforts meet with success.
Timaca
Posted by MagicAcorn (Member # 8786) on :
Wow your generous humanbeing as that is $339.00 just for the postage.
I hope some doctors attend this and not just patients. Good of you to get the word out.
Posted by dmc (Member # 5102) on :
great idea, I gotta get my fanny in gear and do something similar. Thanks
Posted by 5dana8 (Member # 7935) on :
Human Fantastic job!!!!!!!!
Much needed to!
Thankyou from the bottom of my heart for doing this. Going right to the source. Even if only a few doctors out of the hundreds you send can change their ways & start helping people with lyme before it becomes entrenched is pricless.
God Bless you Dana
Posted by WildCondor (Member # 434) on :
great job! very inspiring! We'll follow your lead!
Posted by humanbeing (Member # 8572) on :
Thank for the feedback...Thankfully my husband agreed to donate the postage.
I plan to follow up with Dr. Sapi and see how many actually register. I am also looking into getting "CME" credits for next year's symposium as most docs don't like to pay to attend programs unless there is credit given.
Also, we need to get more corporate sponsorship so docs don't need to fund their own education. This is another area I hope to help. (On the days when I can get out of bed)
Timaca, I agree with you on the length of my letter. But I put all the key info on the symposium at the top so they know what I want them to do right away.
Just a thought but for people out of state, maybe your local lyme group could sponsor physicians to fly to the event...they will get an outstanding lyme education and have access to all the smart docs.
Kim
Posted by timaca (Member # 6911) on :
Hi humanbeing~ The only thing about this symposium that you should be aware of (and you can clarify this with Dr. Sapi) is it looks like it is geared to RESEARCH trends in Lyme disease. Hence, it might not be the best symposium for doctors to learn how to diagnose and treat lyme.....
Timaca
Posted by timaca (Member # 6911) on :
Having said what I said in the previous post...I still hope as many doctors go to the symposium as possible.
Heck, any exposure to Lyme disease from the docs presenting at this symposium, is better than no exposure at all! Timaca
Posted by humanbeing (Member # 8572) on :
Hi Timaca, I went to last year's symposium (same name) and the research term is used because most of what the current llmd's do in their practice actually IS the reasearch.
This is a relatively new disease so we are all guinea pigs. LLMD's know their protocols are out of bounds so to speak so they discuss what cutting edge therapies are working.. (combo abx, best testing, natural stuff)
UNI scientists will discuss what they are pulling out of ticks this year.
Last year it was scarey to hear the talk about how many wierd strains of parasites and other stuff are in today's ticks.
I think Dr. B will discuss his efforts to collect data to support a massive lyme study across all docs treating late lyme
I think Dr. P will discuss the latest research linking late lyme and MS (he is also going to be on the ABC special "Medical Mysteries" coming up soon.
Dr. H is a guru in diagnosis and also a more holistic approach combining eastern and western medicine.
Having personnaly heard all these speakers I think they represent the most brilliant lyme specialists we have in this country.
Any physician attending--no matter their "position" on lyme, will be greatly impressed by the ILADS organization and the quality of docs on the other side of the IDSA guidelines.
If nothing, they will be inspired to think twice about ignoring their multi-symptom "mystery" patients in tick endemic areas...
Posted by Greatcod (Member # 7002) on :
You are doing a great job-- Maybe you could contact the New Haven/Hartford newspaper reporters who have recently done the stories on the Blumenthal/Yale conflict.
Posted by Greatcod (Member # 7002) on :
These were the stories I was refering too, both posted on LN, under General and Activism.
Lyme Disease Experts: Butt Out, Blumenthal By WILLIAM HATHAWAY And HILARY WALDMAN Courant Staff Writers March 21 2007
and
(Same kind of story) Business New Haven (Times?) 4/2/07 Liese Klein
Posted by timaca (Member # 6911) on :
Hi humanbeing~ Thanks for the clarification about what will be presented at the symposium. I wish I could go...but I will be at a dental convention with my husband that weekend!
I have sent Dr. S many ticks from my state for analysis. I hope they have been useful to her. Maybe you will find out at the symposium!
Good luck...hope you get many doctors interested in attending.
Timaca
Posted by humanbeing (Member # 8572) on :
GC great suggestion--I will write them and send a copy of my letter--let them know that all the PCP's in a 50 miles radius will recieve one.
Timaca, I will do a synopsis of the day but Hopefully Dr. S will have it recorded.
Any other suggestions to maximize this conference would be greatly appreciated--now is the time to keep the pressure on.
Posted by mtnwoman (Member # 8385) on :
Will there be some audio recordings for those of us who simply can not make it?
It sounds like a great line up of speakers.
Posted by timaca (Member # 6911) on :
Humanbeing~ I know that Dr. Sapi recorded the symposium last year (and the DVD was for sale on the website). Hopefully, it will be recorded this year as well. I'd love a copy of the DVD if it is recorded.
They are having a LOT of speakers for one day. Everyone will be speaking briefly, I'm sure...but it sure looks awesome!
Timaca
Posted by humanbeing (Member # 8572) on :
Ill find out but I'm sure she will have a DVD available...I would like to see these conferences become available online in real time. Also, offer CME credit.
Then it could be archived and downloaded for anyone to watch anytime--an physicians could get credits (good incentive).
This is the kind of work we do but without a sponsor like big pharma, hard to pull it off. My goal is that next year when I am feeling better(hopefully), I will approach companies to sponsor the symposium....
Posted by Bluetick (Member # 8467) on :
Quick question about this conference - can non-doctors go too? I went last year and loved it but when I tried to register this year, it was a $65 fee and it appeared to be more physician focused...
Posted by humanbeing (Member # 8572) on :
Yes!! In fact the problem is that there are usually too many patients and not enough docs but of course patients may attend. The fee covers lunch, snacks and a reception after.
Posted by humanbeing (Member # 8572) on :
I just finished my never ending mailing...323 Primary Care physicians, plus the Hartford Courant, New Haven Register, Blumenthal, Galvin- (the Commissioner of Pulbic Health in CT), And the Chief of Infectious Diseases at Yale School of Medicine.
Does anyone have Dattwyler's address...I know he is at Stonybrook but I don't know where to write him...
Thanks, Kim
Posted by ldfighter (Member # 9405) on :
Dattwyler left Stony Brook - he's now chief of rheumatology at Westchester Medical Center in Valhalla.
Dir. of Rheumatology, Allergy and Immunology New York Medical College Munger Pavilion, G73 Valhalla, NY 10595
Posted by humanbeing (Member # 8572) on :
Thanks LD, he's next...
Posted by humanbeing (Member # 8572) on :
Also on the agenda is Blumenthal...this is great since it will get the media's attention.
I can't encourage you all enough to register -- get you doctors to register, raise money to send them, It will change the way they look at lyme disease.
The science is what will change minds and this conference will have the evidence.
Sorry if I am pushy
Posted by timaca (Member # 6911) on :
You're not pushy, you are doing a great service.
I hope many doctors attend. Keep us posted after the conference.
I hope some docs from Mayo go. They could use the info.
Timaca
Posted by humanbeing (Member # 8572) on :
An update...so far only 52 registrants and none are my PCP docs...I sent a batch of faxes to their offices Friday so maybe a few will wake up and register..
So disappointed...this conference will have blumenthal and you would think the docs would at least be curious...I also invited the entire "Lyme Research Team" at Yale... http://www.med.yale.edu/intmed/rheumat/faculty.html These "world renouned researchers" are supposidly on the cutting edge of lyme disease...wouldn't you think they would want to attend a conference on "Current Trends in Lyme Disease Research"....
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Fantastic job!!!!!!!!![[kiss]](graemlins/kissing.gif)
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