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Post by Sidney on Jun 2, 2008 12:35:55 GMT -5
An urgent letter to all Morgellons Patients. Florida Congresswoman Ginny Brown-Waite has responded in a very positive way to our pleas for assistance.
She's willing to lend her considerable influence to help us at this crucial time. The idea is to conduct a comprehensive study of Morgellons, not with Kaiser Permanente, but rather in conjunction with the National Institute of Health (NIH.)
The first step is for Morgellons sufferers to contact the email address below. This is the liason for her office as her staffers can't handle all the "extra" work.
Waite's staff wants to hear from all Morgellons patients, both in Florida and from all fifty states. They want to hear from YOU! They want to read and understand how this disease has impacted YOUR life.
If you are experiencing Morgellons disease symptoms, please email your response to:
aripekangel@yahoo.com Your letter should include at least these facts: 1. Where did you live when did you first become symptomatic. 2. Number of members of your household who have these sympotoms. 3. A brief description of your symptoms. 4. A brief description of your interactions with the medical community.
(How many doctors you've seen, their diagnosis, how you were treated. Were they kind, unkind, interested, disinterested, etc.) 5. You may want to add any investigative procedures performed such as skin scrapings, biopsies, bloodwork, etc., that were recommended/implemented. Feel free to list any medications prescribed to treat this condition. If you aren't comfortable using your name, you may use a fictitious name, but it's important to identify your state. What's needed are geographic locations so that this data may be forwarded to the appropriate congressional leaders who represent your area. If you have a loved one experiencing these symptoms who may be unable to send email, it is important that you assist them so that they may be counted. You may also call and leave a message to an account at (352) 544-8111.
This number will shortly become a reporting-only line. Your information will be transcribed and filed to enable Congresswoman Ginny Brown-Waite to provide evidence of the serious nature of what appears to be a disease of epidemic proportions. Please consider this a safe haven where you can respond and participate. All reports will be kept in strict confidence. We finally have a real friend in the political arena who is willing to fight for us. Let's all work together to move the 'mountain."
Sincerely The Florida Advocacy Group For Treatment Of Morgellons Trisha Springstead, RN aripekangel@yahoo.com
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Post by morgie on Jun 2, 2008 13:26:57 GMT -5
This sounds great but if it's for NIH is it also with the undiagnosed disease program I read here too?
It might be good to have only one cnetral database because too many different places to register means more room for error and not accurate count of infected.
Finally someone is wanting to help and I hope more will join in with her.
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Post by beckybailey on Jun 2, 2008 13:42:43 GMT -5
I DID IT! THANKS SIDNEY!!!!! Here is what I sent:
1. Where did you live when did you first become symptomatic: Same place as the last 18 years, ________________, Texas. We have just got back from a cruise ship vacation to Cozumel. We definitely brought home BED BUGS! This is when all hell broke loose in my life.
2. Number of members of your household who have these sympotoms: Only me, but my husband, youngest son and I all have Lyme diagnosis
3. A brief description of your symptoms: intense itching, rashes, lesions, brain fog, night sweats, extreme fatigue, vision changes, cough with lung congestion, feel crawling on skin, under skin, in hair, in nose, in eyes, and in ears.
4. A brief description of your interactions with the medical community:
THREE visits to primary care physician: received 3 second VISUAL inspection of my hair, got a hug and promise nothing is wrong with me
ONE visit to dermatologist: received skin exam with lighted magnifying glass (what technology!). She said nothing is wrong with me, she has seen this (DOP) a hundred times before!
ONE visit to D.O.: received 12 second exam of my hair and skin, he seemed convinced I am DOP until I explained about feeling the crawling in my eyes, ears, and nose, then seemed very puzzled and unsure.
ONE visit to recommended doctor: no exam at all, ordered brain scan and thyroid test, all came back normal. She left the room to "make an appointment" but didn't say the appointment for FOR ME to see a SHRINK!
FEW visits to psychiatrist: HE asked when I started calling myself a "host", I repied "when they started having a party on my skin"! He prescribed Seroquel which I took for two years, did not make my "delusion" go away, now I only take sleeping aids to escape the nightly crawling.
MANY visits to accupuncturist and parasite specialist: said it is a known fact that even internal parasites can cause skin itching and other issues.
MANY visits to Nurse Practioner and Lyme Specialist: may have saved my life and sanity! Thank God for Ginger Savely!
thank you for your efforts!
Becky Bailey beckybailey2892@hotmail.com
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Post by Sidney on Jun 2, 2008 14:22:13 GMT -5
Thanks, Becky and Morgiegal. I appreciate the feedback so much and hope that others will join in, even though I haven't taken the time to do it myself, it will be done soon. We all know we need all the positive effort we can get. I don't believe this has anything to do with the other undiagnosed diseases program through the NIH. In fact, I would say emphatically no, but as we're all desperate for help, I'm please that Trisha Springstead has personally advocated through Congresswoman Ginny Brown-Waite. Hey, it's an election year, Florida is one of the hot spots for reportings, and Florida patients need to unite and become a strong voice. I love the idea of a Florida Support Group even though it's a large state and has a large population. It would be wonderful if each state had support groups for our disease since it's a fact that getting the word out can be difficult particularly considering the number of people who have our disease, have no computer access, and feel they are alone. Another point to bear in mind is this. Tom Coburn, M.D., has a medical practice in Muskogee, Oklahoma. Residents of Muskogee, Tahlequah and Ft. Gibson were the first to report the "skin parasite" in the State of Oklahoma in 1994. About Tom Coburn, M.D. (United States Senator from Muskogee, Ok.) www.google.com/search?hl=en&q=Senator+Tom+Coburn+Muskogee+Oklahomatinyurl.com/6zw2dtScroll to Media Reports. members4.boardhost.com/Kritters/Please take advantage of every opportunity to inform, participate and share with others. Creating awareness, participating, sharing among groups, organizations, and individuals until this disease is fully identified is the greatest legacy any of us can leave behind. Thank you for helping to make it happen.
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Post by dragonfly on Jun 2, 2008 21:21:31 GMT -5
Trish is an Earth Angel!
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Post by Sidney on Jun 2, 2008 21:59:41 GMT -5
You'd better believe she's an Earth Angel! Only a few know how she works non-stop for all of us, the contacts she makes, the emails and phone calls she makes within the U.S. as well as outside the U.S.
I received a lengthy email a few weeks ago from someone who knows Trisha very well. In the email she shared so much concerning what Trisha does for others. I consider Trisha a dear and close friend, but I had no idea what she does behind the scenes.
Thank you, God for Trisha and ALL the good, caring, generous people who give of themselves expecting nothing in return. Please give them the strength of mind and body to carry on and show us how we can lighten their load.
Good things are happening. Just gotta keep believing.
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Post by toni on Jun 3, 2008 10:49:23 GMT -5
Thank you so much Sid for sharing this and the work you and Trisha are both doing!!!
This is very good news, the more people involved, the better.
And BB, I chuckled at the (host) part that you were asked. If they only knew.
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Post by toni on Jun 3, 2008 10:51:15 GMT -5
Thank you so much Sid for sharing this and the work you and Trisha are both doing!!!
This is very good news, the more people involved, the better.
And BB, I chuckled at the (host) part that you were asked. If they only knew....and they will soon! Then they'll look like the fools they are to treat us so blatently ridiculously with showing their ingnorance as they have and still do. Not that that helps us at all, but it's sure a teeny bit of get-even.
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Post by Sidney on Jun 3, 2008 12:11:54 GMT -5
LB posters, visitors, etc., I received this news earlier today:
Trisha has received 30 emails ( in ONE DAY) as a result of this effort) from Morgellons sufferers and has forwarded them to Congresswoman Ginny Brown-Waite. Congresswoman Waite is NOT happy and has already written the CDC.
Let's send those emails, folks.
One hundred emails is nothing. Thousands of emails describing how Morgellons has impacted your life or the life of a loved one(s) can make a difference.
Thanks to all of you who have responded.
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Post by imblownaway on Jun 3, 2008 13:49:36 GMT -5
Sent
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Post by browncircles on Jun 3, 2008 18:59:42 GMT -5
sent
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Post by Sidney on Jun 3, 2008 20:04:50 GMT -5
Thanks to imblownaway and Browncircles.
Haven't heard a count today, but hope the numbers are up!
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Post by bessie on Jun 3, 2008 20:08:50 GMT -5
I just sent mine in, too... Everyone needs to do this - it's not too hard to do. Has this request been posted on the other Morgellons support groups? Bessie ps - I am also preparing something for Gary Null, who has also committed himself to bringing this to Washington (if anyone listened to the broadcast of 5/30). Any and ALL avenues need to be taken!
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Post by Sidney on Jun 4, 2008 0:21:26 GMT -5
Bessie, Lymebusters is the only support group I visit. I hope you and others will please post this at the other support groups.
Due to family circumstances and summer gardening chores I simply don't have the time to go to the other boards, so hope others will post this and help to spread the word at the other message boards.
Thanks for participating, Bessie.
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Post by Sidney on Jun 5, 2008 14:39:49 GMT -5
Bump. Need to keep this active.
Thanks.
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Post by violet on Jun 5, 2008 15:58:39 GMT -5
I've just sent mine...
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Post by liz on Jun 5, 2008 16:05:12 GMT -5
Thanks Sid for all your hard work and always letting us know everything that up....or coming up ...I appreciate so much!
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Post by freaky on Jun 5, 2008 16:29:23 GMT -5
Ditto all you commentors on Sid.
Thank you, God for Sid, she is so special, and ALL the good, caring, generous Congress women who give of themselves expecting nothing in return. Please give them the strength of mind and body to carry on and show us how we can lighten their load.
Good things are happening. Just gotta keep believing.
freaky
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Post by curlypainter on Jun 5, 2008 16:49:31 GMT -5
Just sent mine also..............Thanks Sid
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Post by ANTHILL on Jun 5, 2008 18:51:10 GMT -5
This thread is sticky just like sorghum---Mmmmm tasty sorghum
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