We should pack the room! Posted by bettyg (Member # 6147) on :
copying my post here from medical...
tracy, i hope many of you WILL PACK THE ROOM since it's free, and if he doesn't have Q/A, i'd have signs, banners, etc. *****************************
hey go to LDA site, and print out the LYME DISEASE PETITION for our "LYME DISEASE BILLS IN CONGRESS" AND SHEETS AND HAVE FOLKS SIGN THEM THERE!!!!
take lyme brochures; tick cards; ABCs of lyme; and any of you are welcome to print off my combined 2 LDA brochures together I typed which have extra info in them too!!
Betty G's LYME/TICK BROCHURE with 2 LDA brochures combined together plus other stuff from Betty including:
lyme books, support groups, lyme/co-infection illnesses, symptoms, diagnosis, treatments, hunting/gardening ... how to dress; how to remove ticks, etc.
We should copy our responses, too. I honestly wonder if a citizen's
arrest could be performed on him.
Each of these IDSA butchers, in refusing to respond to Blumenthal's
subpoena, is guilty of a felony, is he not?
Posted by lymewreck36 (Member # 4395) on :
O.K. What is this about Blumenthal's supena? The ISDA refused to respond? When did this happen? What does it mean?
mary
Posted by bettyg (Member # 6147) on :
mary, go to top of medical to read about BLUMENTHAL who took action oct. 06 on this, and we're still waiting to hear...
Posted by Cold Feet (Member # 9882) on :
I plan to go and take good notes. If there are any other folks going, pls PM me.
Any questions I can ask for you all?
Posted by bettyg (Member # 6147) on :
copying this here for refresher of details.. ******************************************
Lyme Disease Community Forum
Date : 30-Apr-2008 Wednesday *******************************
Time : 07:00 PM - 10:00 PM Department : Board of Health Type : Meeting
On April 30th at 7PM at the Westwood High School auditorium "The Second Annual Lyme Disease Lecture" will take place with 2 world renowned speakers:
1.) Dr. Alan Steere- The noted physician and scientist from Massachusetts General Hospital who first described Lyme Disease as a true illness - will speak on "Update on Lyme Disease."
2.) Dr. Tom Mather- Chief of Entomology at the University of Rhode Island who studies the deer tick and Lyme bacteria - will be speaking on "Manageing Your Lawn to Prevent Lyme Disease."
There is no fee for this lecture. **********************************
It is sponsored by The Westwood /Mansfiled Pediatric Associates in collaboration with the Westwood Health Department.
*********************************
COLD FEET, since you plan to attend, i've got a great suggestion to you: /////////////////////////
could you print 50-1 page sheets with the phone/fax nos. of PALONNE, KENNEDY, & DINGELL for the public to call on getting our 2 lyme bills on the agenda for hearing dates? *****************************************
also, leave room on the bottom of this 1 sheet about our MAY 7 PROTEST with the info listed; when, where, who, and how to get there details! **********************************************
My statement/question for Steere is this?
I'm appauled that Steere does not want to see us chronc lyme patients to get well and into remission so we can enjoy QUALITY OF LIFE with our loved ones, and make HAPPY MEMORIES TOGETHER.
Steere and IDSA has made chronic lyme patients lives pure HELL by NOT acknowledging that chronic lyme disease exists in us, and for UNDER TREATING LESS THAN 30 DAYS OF ANTIBIOTICS to kill off the spirochette in our bodies. "IT'S NOT ALL IN OUR HEAD"!!
I feel IDSA is very vindictive to our chronic lyme patient society of using every trick in their book to STOP our 2 federal lyme bills, S 1708 and HR 741, which have been in congress for 10 years, NOT to be heard at an actual lyme disease hearing of our 2 proposed bills.
IDSA sent a lengthy letter to Pallone filled with lies about chronic lyme disease.
My questions are:
WHEN WILL THESE IDSA LIES STOP and why do you want to see all of us DEAD from undertreating and failing to provide PROMPT AND ADEQUATE TREATMENT?
signed by BettyG IOWA LYME ACTIVIST
Posted by Cold Feet (Member # 9882) on :
Betty, thanks for your reply. Anyone else?
Posted by Cold Feet (Member # 9882) on :
I attended the event tonight, it was almost beyond words. A bit surreal at times.
I'd like to explain more, but given how odd the event was, it will take me some time to digest, analyze and write about it.
This event epitomized everything that's wrong with Lyme disease! Even the Q & A was constrained by both time and editorial guidelines.
More in a few weeks...
Posted by bettyg (Member # 6147) on :
cold feet, that's quite a CLIFFHANGER YOU LEFT! Posted by kam (Member # 3410) on :
Wishing we were able to have more people show up to educate about the different views with lyme.
Sounds like it was a very sad night for you Cold Feet.
Posted by Lymeblue (Member # 6897) on :
Coldfeet ..any short summary ?
Posted by Cold Feet (Member # 9882) on :
Y'all. Sorry for the long delay.
I wanted to get your opinion on a complex matter. Sorry for the long post, but I've been busy while also sorting out how to explain this complicated issue.
I actually filmed the presentations at Westwood high school in Mass. on April 30th. I used my HD Canon camcorder and wireless mikes (it came out lousy but better than I anticipated). It is 100 minutes long, composed of three sections:
Presentation One: Dr. Thomas N. Mather, Ph.D. Professor and Director, Center for Vector-Borne Disease University of Rhode Island
Presentation Two: Dr. Allen Steere Div. of Rheumatology, Allergy and Immunology, Massachusetts General Hospital
Question & Answer Session
I paid my tech partner short money to transfer it to DVD. I was planning to make the DVD available for the city of Westwood, but the talk from Dr. Steere was problematic. The Q & A was sad as the doctors coached the audience to ``stick to prevention'' topics as anything else would be controversial.
As a patient advocate, and amateur videographer, it was sad to notice how many people literally hobbled out of the auditorium. It was obvious that many had chronic Lyme arthritis. I interviewed some of these folks afterward, as some of the questions in the Q & A obviously expressed anger and frustration at Dr. Steere.
At the end of all the sessions, people broke into groups to chat. I was hoping to chat with Dr. Steere a bit, but one patient was there with him for some time (20 minutes). I slowly insinuated myself into the end of their chat. This woman was asking for advice on her ``friend'' (her daughter, I later learned) who had CFS and other issues. When there was a pause, I bluntly injected, ``I was there 19 months ago: disabled, brain-fogged and miserable! Thank God for the Marshall Protocol, look at me today -- back on track and participating in life!'' The woman starting asking me questions. Dr. Steere interrupted her and looked straight in my eyes and said only this: ``Is that right? Which doctor prescribed that for you?'' NO curious questions. NO constructive comments. It was really jarring...
I was planning to make the DVD available for app $12 (fulfillment, shipping and handling; all costs) in a few weeks. But I fear that there is some inaccurate information presented in the second presentation (e.g., a clinical diagnosis includes a rash, Lyme does not occur in all parts of the country, no evidence that bartonella is a tick-borne infection, amoxicillin to treat Bb, if it's not documented, Bb cases do not exist). The City of Westwood was going to make this video available to other towns in the area or make it available on public cable access stations.
I'd like to send the DVD to some ILADs doctors, researchers and advocates to help me answer the question: will this video do more harm than good? That said, the first presentation was excellent, educational and alarming.
Maybe this video will help some people in some way. But in the meantime, I am conflicted over the next steps! So thanks for any specific advice.
Posted by bettyg (Member # 6147) on :
up....someone taped this evening!
Posted by Cold Feet (Member # 9882) on :
Thx Betty. I am really blown away that no one responded. Maybe I was trying too hard!
I give up.
Posted by bettyg (Member # 6147) on :
.. coldfeet, we have got so MUCH ACTIVISM going on right now w/congress ... calling/faxing/emailing/snail mailing them for our lyme bills.
writing rebuttals to newspapers
making up yard signs etc. to get out PALLONE ...
so have patience; we're all sick and restricted in what we can do! Posted by Cold Feet (Member # 9882) on :
Bb experts,
Can you help me refute these points positioned as fact, while I work on the same:
- a clinical diagnosis includes a rash,
- Lyme does not occur in all parts of the country,
- no evidence that bartonella is a tick-borne infection,
- amoxicillin is effective to treat Bb,
- if it's not documented, Bb cases do not exist.
I have problems with every one of these statements, and I am looking for all the Pubmed and the most "credible" articles I've seen in the past few years to refute these statements.
Thanks for any support.
Posted by bettyg (Member # 6147) on :
coldfeet, i just sent you my updated version as of today, my 123 pages of newbie package.
many questions are answered in there; read the table of contents to see what all is in there and then do a search for things
use EDIT, FIND, and type in the exact phrase you find in table of contents....
example, all states DO HAVE LYME;
look for lyme statistics; there's a link for cumulative total 1980 - 2008
everything i know is in there!!! now read, read :)_ *********************************
Posted by snapcrackle (Member # 9977) on :
Hi cold--
I have been out of commission with a high fever and exhaustion-- yup its my fourth case of LYME. ( I have now had the RASH four times in the past 17 years, plus chronic Lyme arthritis since the first rash 17 years ago!! I must have every borrelia strain known to man, thanks to my evil gardening habit!)
Anyway-- don't be discouraged. Keep taping-- you don't need anyone's permission to move forward with your activism ideas. I would put up your videos on YOUTUBE as a start-- and keep posting them without getting discouraged or needing feedback. Soon, you will find that you have had THOUSANDS of views for your videos.
Shills will come out of the closet to comment negatively--- DON't LET THAT DISCOURAGE YOU --- THAT IS THEIR OBJECTIVE!!!
youtube is easy and simple. Once you have success there, you could think about compiling you best videos and making one large DVD to sell... once you have established a reputation and an online following for your films. I put up a short 30 second video of spirochetes in live blood last year (filmed by mark stroud who build his own darkfield microscope after recieved BS diagnoses), and it now has over 4,000 views!! I never expected that!!!
So-- keep putting forth your best energy and your best effort with posts and videos.. and don't worry too much about approval or feedback... from anyone here or anywhere else.... we are in the fight of our lives here...
....and we have been lied to about this illness by bioweaponeers and their cronies in the mainstream media.... its most important that we spread the word and the truth---- as quickly as possible despite naysayers, bioweaponeers with an agenda, and confused, exhausted Lyme victims.
These liars must be exposed and youtube video is a great way to do it!!
Posted by snapcrackle (Member # 9977) on :
PS--
COLD-- If you need any help uploading your Steere video to youtube-- I would be happy to do the work for you and credit you.
Perhaps some of us here with video/youtube skills should get together and brainstorm a list of Lyme youtube projects-- before they shut down the internet...our last source of free speech regarding Lyme--!!
Posted by Cold Feet (Member # 9882) on :
Thanks very much for you kind words. I've given this much thought and will be moving forward with some constructive ideas...more in a few weeks.
Posted by Cold Feet (Member # 9882) on :
Quick update, same subject on Steere but a different topic:
More propaganda that will undoubtedly lead to misinforming patients. How many things in this article are whacked? And the sins of omission are rather obvious (co-infections? different strains of Bb with different pathologies? proper diagnostics? Lyme is a CLINICAL diagnosis? Etc.)
This magazine is published by the Arthritis foundation! Duh, look at their sponsors -- companies who thrive on NOT curing arthritis caused by Bb and mycoplasmas:
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