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» LymeNet Flash » Questions and Discussion » Activism » Virginians' written voices wanted by Chairman of VA Lyme Disease Task Force

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Author Topic: Virginians' written voices wanted by Chairman of VA Lyme Disease Task Force
Dawn in VA
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For those of you who were not/will not be able to make it to the public hearings, there's a great way for your voice to be heard:

Chairman Farris would like those affected in VA to send your written testimonial (personal story) and concerns to him at [email protected]

For those of you who spoke at any of the public hearings, or plan to do so in Harrisburg or Springfield, please email him a written form of your testimony as well.

This is a terrific opportunity. The Chairman, and all of the members of the Task Force, deserve kudos and gratitude for their time, travelling, and earnest listening.

If you need assistance in composing a written note b/c of physical difficulties like reading or writing cohesively, "Lymebrain", and the like, send me a PM.

EDITED TO ADD, PER TC'S COMMENTS BELOW, DEFINITELY AVOID PUTTING YOUR LLMD'S NAME IN YOUR TESTIMONY.

BASED ON SOME OF THE QUESTIONS THE PANEL HAS ASKED SPEAKERS, HOWEVER, IT WOULD BE GOOD TO POINT OUT HOW FAR YOU HAVE TO TRAVEL FOR YOUR APPTS, HOW LONG B/T TICK BITE (IF KNOWN) AND PROPER DX, AND THE LIKE.

PS The Virginia Dept of Health does not currently allow physicians to report Babesia cases. Therefore, Babesia in VA doesn't get reported to the CDC.
(The system goes: physician report->VDH and VDH->CDC. There is no physician report->CDC, they MUST go through VDH.)

The Director of Epidemiology at VDH is on the Task Force.
Get my gist?

The following was released by CDC and can be found online:

"Starting in January 2011, cases of babesiosis from across the United States will be formally reported to CDC. Babesiosis is a preventable but sometimes life-threatening tickborne parasitic disease.

"At the 2010 Annual Meeting of the Council of State and Territorial Epidemiologists (CSTE), representatives from state and local health departments voted in favor of adding babesiosis to the list of nationally notifiable diseases and conditions.

***CSTE recommends that states and territories conduct surveillance using the national case definition. Becoming nationally notifiable is an important step toward monitoring disease occurrence."***

[ 03-10-2011, 05:22 PM: Message edited by: Dawn in VA ]

--------------------
(The ole disclaimer: I'm not a doctor.)

Posts: 1349 | From VA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
Tincup
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Sometimes young lady, you make me laugh out loud. It isn't YOUR fault, it is just some of the weird stuff going on.

Quote- "The Virginia Dept of Health does not currently allow physicians to report Babesia cases. "

You are right!

Although Babesia is confirmed throughout Virginia's surrounding states- ticks must have gotten the VDH memo that stated they couldn't enter Virginia if infected with Babesia.. and they not only were able to read the memo, they are obeying it!

[lol]

Yes, VDH re-checked patients who had previous been diagnosed AND treated for Babesiosis and since the tests sent to "their" special lab were negative at that point....

Yes, AFTER treatment the tests were negative .... go figure...

[Roll Eyes]

They declared there was no Babesia in Virginia - therefore doctors couldn't test patients for it or treat it.

```````````````````````````````````````````

Now, let's look at what the VDH Epidemiologist (Keri Hall- on the Task Force) is saying about testing related to reporting cases of Lyme. (Note the word "Necessary" is used too)

"Necessary lab results: Positive or equivocal results from ELISA as well as positive Western Blot IgM if the blood was drawn within 30 days of onset..."

HELLO?

Why is he saying an ELISA test and a Western Blot need to be positive within THIRTY DAYS - especially since we ALL know (even the IDiots know) that there is super super little chance that will happen?

First of all there will most likely be a negative ELISA in that early of a time frame. Second, with a negative ELISA- labs are not suppose to even do a Western Blot.

(And no, you can forget Igenex or any good tests- they discount them right off the bat.)

Even the IDiots say the ELISA tests aren't accurate at that time and it takes time for the antibodies to show up once you have Lyme so they can be measured on the test.

So what's the deal? Someone needs to bring this up at the meeting.

`````````````````````````````````````````````

He goes on to say ...

"... or Positive Western Blot IgG, if blood was drawn more
than 30 days after onset."

Have the Virginia Department of Health folks even read the reporting criteria from the CSTE/CDC for reporting Lyme cases? Or do they just want to make it so it appears there is no Lyme (as well as Babesia) in Virginia too?

Source: Slide # 14- Dr. Keri Hall, Virginia Department of Health, ``Lyme Disease Tracking and Prevention.'' (September 28, 2010).

```````````````````````````````````````````

You will probably cry reading some of the slides after the one mentioned above ... but here is a sample anyway.

"The [IDSA] guidelines recommend against repeated,
long-term antibiotic therapy with brand name drugs in favor of generic drugs and diagnostic tests, eliminating the possibility of profit for panel members." Slide # 18

``Lyme-literate'' doctors, who believe that Lyme can
be a persistent and relapsing infection often treat
their patients with combinations of antibiotics over
a long period until symptoms resolve, not
according to the short-term treatment schedules
set forth by the IDSA." Slide #21

"As the debate continues, ILADS doctors who
disagree with the short treatment recommendations of the IDSA sometimes find themselves investigated and tried by their state medical licensing board for breaking
with the IDSA." Slide # 23

How about a lie to sweeten the pot... (I was there with Dr. Z at that hearing ... and what about Dr. G? Sham peer-review.)

"To date, there have been no disciplinary proceeding by Virginia Board of Medicine against a physician for treating LD with long- term antibiotics."

http://leg5.state.va.us/User_db/frmView.aspx?ViewId=834

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Dawn in VA
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Nah, TC, not crying right NOW anyway- knew 'bout all that dookie already.

Laughing now, however, at what you wrote and picturing those ticks saddling up on a deer, looking very forlorn, and riding out of the state b/c the VDH commands them to get their black-legged butts outta town. Guess we'd better call VA Border Patrol. Those ticks can be sneaky little buggers.

This VA gal had Babs duncani show up on a blood smear- twice- so take that, you dirty rats. Like the M-n-M commercial... "Gasp! It DOES exist!" Pretty darn hard to disprove a positive smear.

(BTW, Keri is a she.)

--------------------
(The ole disclaimer: I'm not a doctor.)

Posts: 1349 | From VA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
Tincup
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You are around! Glad you ain't crying!

Just remembered what I was originally going to say when I clicked to reply. Yes, it takes a while.

And stories of ticks riding horseback (deerback) into and out of the state, well that sure don't help me focus none. HA!

[lol]

You said... (someday I will learn how to do that automatic quote thing)....

"Chairman Farris would like those affected in VA to send your written testimonial (personal story) and concerns to him at [email protected]"

As with any time folks are asked to send their story in or fill out surveys... a caution first.

Since we don't know what will be done with these stories... and they should be available for anyone to request (entered on the record)....

Be sure you do not give info about your LLMD, your treatment specifics, your kids school, your job, your address, your name, or info that would identify you those who would LOVE to have this info, like IDSA and their best friends- insurance companies- and others.

The IDSA, VDH and others will probably have access to your personal stories (otherwise not sure what they would do with them) so please protect yourself and your doctor by not giving any identifying info to them.

O tay?

Now carry on!

Me? I am headed out to volunteer for the tick patrol along the border.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Dawn in VA
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Definitely agreed about not putting LLMD names therein. I edited the original post to include that. Good thinking, TC.

--------------------
(The ole disclaimer: I'm not a doctor.)

Posts: 1349 | From VA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693

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PS I understand that many here may not feel comfortable in providing their real contact information in those letters. On the otherhand, to be kept in the loop and, more importantly, COUNTED, real info might be prudent.

Still though, DO NOT PROVIDE YOUR DOCTOR'S NAME.

--------------------
(The ole disclaimer: I'm not a doctor.)

Posts: 1349 | From VA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
   

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