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» LymeNet Flash » Questions and Discussion » Activism » Stories wanted for IOM Fall Workshop

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Author Topic: Stories wanted for IOM Fall Workshop
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

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If anyone wants to participate.

For The Institute Of Medicine State of the Science Fall Workshop on Lyme and Tick-borne Diseases - We need your assistance.

The IOM has commissioned our organization to write a paper for the workshop committee members entitled: The Human Dimension of Lyme Disease and Other Tick-Borne Diseases: From the Patient's Perspective

A team of writers have started the paper and we would like your help to make a complete narrative of living with chronic Lyme disease - its impact on family relationships, job/school, finances, health insurance coverage, disability issues and future plans.

Participants' names will be protected; they will not be used in the paper.

Your story, your son and/or daughter's story, about the experience of on-going illness, not to mention, accurate details of the scope and conditions involved will be woven throughout the paper.

Please know that your efforts to contribute to this paper will help to advance awareness to the realities of living with tick-borne disease.

Please send an e-mail with your story to natcaplyme@natcaplyme.org. Please put "IOM Paper" in the subject line.
Your participation will make all the difference.

Thank You
National Capital Lyme & Tick-Borne Disease Association
natcaplyme@natcaplyme.org
www.natcaplyme.org
Phone & fax: 703-821-8833


Any information provided is for the reader's own evaluation and is not offered as and should not be considered medical advice.

A licensed physician should always be consulted when considering medical decisions and nothing herein may be used in place of advice from your personal physician or other healthcare professional.

Links to other sites are provided for ease of research only. Information on those sites is the product of the website author and represents the opinion of those who publish the sites and does not necessarily reflect the opinion or judgment of the National Capital Lyme & Tick-Borne Disease Association

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Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

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Just told this has a deadline of July 9th.

if anyone wants to contribute.

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Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
lymeout
LymeNet Contributor
Member # 8045

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Don't worry about the deadline. We really need to hear about the impact on children. Their stories can penetrate the hardest of hearts! Try to send something in in the next few days.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
NanaB
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Member # 26227

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I just got back from vacation. Is it too late to contribute? My daughter and I just got diagnosed. While I've had a very difficult time my daughter's story is heart-wrenching. I would love to include hers.

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Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help.

Posts: 57 | From Kansas | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
buzzsflybox
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Member # 26808

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Pinelady, What a WONDERFUL Website you guys have. I would have loved to participate but; as noted the deadline is past.

Do you know anything of The famous Dr.B's National Regestry program? I have a DVD from 2008 in which he was promoting it. It is to be used for reserch purposes and of course is anonymous and free.
Thanks in advance, Buzz

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5 yr. Vet. of the Lyme war. Helping and sharing are now my only objectives.I have nothing to sell & I no longer interfear with things I cannot control. But, I have learned many good things from my affliction & am a better person for it.

Posts: 51 | From Northeastern PA | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

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It's not my website...lymeout said don't worry about deadline.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
   

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