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» LymeNet Flash » Questions and Discussion » Activism » ACTION ALERT- Lyme Included as Autoimmune (NIH, CDC approve) 10/18/09

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Author Topic: ACTION ALERT- Lyme Included as Autoimmune (NIH, CDC approve) 10/18/09
Tincup
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http://tiny.cc/0mg9x


Oct 18, 2009

Senate Sponsor States- "NEI is fully supported" by CDC & NIH

From: Lyme Disease Association, Time for Lyme, CALDA, & Lyme Disease Association of Southeastern Pennsylvania

HISTORY

In our last Action Alert, we informed you of a Resolution already passed by the New Jersey Assembly for a "Neuro-Endocrine Immune (NEI) Center."

Click here to see the letter currently asking the New Jersey Senate to remove "Lyme disease" from the Resolution (SR 133) it will soon consider.

http://www.lymediseaseassociation.org/HR741/NEIDfinal.pdf

Click here to see the NJ Senate Resolution (SR 133) that will be voted upon.

http://www.lymediseaseassociation.org/HR741/SenateNEIDResolution.pdf

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

TAKE ACTION NOW

WHO: National Alert! We need everyone across the USA to contact the NJ State Senate Health, Human Services, and Senior Citizens Committee members listed below, since more centers are being planned in more states.

WHEN: Start immediately.

WHAT: Talking points and email suggestions to address Resolution SR-133

Ask NJ Senators to remove "Lyme disease" from Resolution SR-133!

You can tell them that including Lyme disease with disorders of unknown origin will set Lyme research and treatment back.

You can tell them the IDSA, insurance companies and others will use the classification to prevent you from receiving appropriate treatment.

You can also tell them non-treatment or treating symptoms only and not the source are some of the reasons you are in this current situation.

Provide name, address and contact info (if a group, provide the group's name).

``````````````````````````````````````````````````
Resolution Sponsor

Senator Christopher Bateman (R)

Phone: 908-526-3600 FAX 908-707-4578

Email: [email protected]

***

COMMITTEE MEMBERS

Senator Joseph F. Vitale (D)

Phone: 732-855-7441 FAX 732-855-7558

Email: [email protected]

***

Senator Loretta Weinberg (D)- Resolution co-sponsor

Phone: 201-928-0100 FAX 201-928 0406

Email: [email protected]

***

Senator Diane B. Allen (R)

Phone: 609-239-2800 FAX 609-239-2673

Email: [email protected]

***

Senator Bill Baroni (R)

Phone: 609-631-9988 FAX 609-631-0324

Email: [email protected]

***

Senator Robert M. Gordon (D)

Phone: 201-703-9779 FAX 201-703-8127

Email: [email protected]

***

Senator Thomas H. Kean Jr. (R)

Phone: 908-232-3673 FAX 908-232-3345

Email: [email protected]

***

Senator Dana L. Redd (D)

Phone: 856-225-9068 FAX 856-225-9369

Email: [email protected]

***

Senator Ronald L. Rice (D)

Phone: 973-371-5665

FAX 973-371-6738

Email: [email protected]

***

Senator Robert W. Singer (R)

Phone: 732-901-0702 FAX 732-901-0587

Email: [email protected]

***

Senator Jim Whelan (D)

Phone: 609-383-1388 FAX 609-383-1497

Email: [email protected]

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

NEW UMBRELLA FOR LYME DISEASE?

Patients with Lyme disease should be alarmed by the recent effort to recategorize chronic Lyme disease as autoimmune, or to place it under a term apparently coined by P.A.N.D.O.R.A. for their own purposes, specifically, "Neuro-Endocrine Immune Disorder."

Lyme disease has a KNOWN ORIGIN - Borrelia burgdorferi. It should not be classified with these other conditions which are treated only to manage symptoms.

Managing symptoms ONLY, while allowing a complex infection to progress unabated, is not in the best interests of patients with Lyme disease.

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

CONCERNS- STATE AND NATIONAL

The inclusion of Lyme disease in this Center's mission is a national concern for ALL Lyme patients since P.A.N.D.O.R.A. reports, "once the NEI Center is in full operation it is our vision to setup satelite NEI Centers in other states."

We are concerned that in response to your personal contacts with NJ legislators, promoters of the proposed "Neuro-Endocrine Immune (NEI) Center" contacted all NJ legislators, stating in part, "it is unfortunate" and a "misguided" attempt "for an alleged patient advocacy group to oppose [our] efforts."

Please note, no one opposed their efforts, only the inclusion of Lyme disease. We applaud efforts to increase research and improve treatment for those negatively affected by any conditions that have no known cause, however, we know Lyme disease is not in that category.

An additional concern- this same group recently reassured NJ legislators that the "overall concept of the NEI Center's mission is already fully supported by administrators within the CDC, the National Institutes of Health (NIH), and the Vermont Department of Health."

NJ Senator Bateman, the Resolution's primary sponsor, also responded to patients' letters confirming that the "NEI is fully supported by the 'Center for Disease Control and Prevention' and 'National Institute of Health.'"

Additionally, NJ Legislators have informed us they are being told that New Jersey doctors can treat Lyme however they want, which is not the situation at all.

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

MORE DETAILS ABOUT PROPOSED CENTER

This effort is spear-headed by CFS advocate, Kenneth Friedman, PhD, UMDNJ, and a Florida-based "neuro-endocrine immune" support group, P.A.N.D.O.R.A., for which he is Director of Public Policy.

The Center will be located at the University of Medicine & Dentistry of New Jersey, home to both Mr. Friedman and Robert Wood Johnson Medical School.

We are concerned that Robert Wood Johnson Medical School (deeply involved in the Lyme vaccine clinical trials & was home to someone acknowledged in the IDSA Guidelines) has published numerous articles strongly discounting the notion that chronic Lyme disease symptoms remain after standard IDSA treatment.

If symptoms remain, they are either considered by them to be psychiatric in nature or a result of autoimmune disorders, such as fibromyalgia and chronic fatigue syndrome.

At the recent IDSA Lyme Guidelines Review Panel hearing, it was reported that, "these syndromes have more in common than their apparent differences would suggest and may be best considered under the rubric of a Functional or more accurately, Dysfunctional, Somatic Syndrome."

[ 10-19-2009, 02:33 AM: Message edited by: Tincup ]

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

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Tincup
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To make it easier.... here are the email addresses to copy and paste.

[email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected]


Here is a sample note to paste on an email or adjust as you'd like.


Dear Senator,

Please remove the "Lyme disease" language from Resolution SR- 133.

Including research efforts or treatment for Lyme (Borrelia burgdorferi) in plans for a Center focusing on autoimmune disorders, especially in a highly endemic state like New Jersey, will not be advantageous to those with Lyme disease for many reasons.

Lyme disease has a known organism causing the symptoms patients experience, where as the disorders the proposed Center is designed to encompass do not.

Many patients find it difficult to be properly diagnosed and treated for their ongoing infections as it is; and diluting the ability to cure Lyme by eliminating its source, by focusing only on symptomatic treatment, will serve to do no more than extend the suffering patients experience.

Insurance companies already deny much needed treatment for Lyme disease and reclassifying it will only add to the problems.

Thank you for supporting a Center to help those with true autoimmune disorders, however, please do not put our future in jeopardy by lumping Lyme disease in with conditions with no known cause and no known treatment.

Sincerely,

YOUR NAME
ADDRESS
PHONE NUMBER


[Big Grin]

[ 10-18-2009, 11:28 PM: Message edited by: Tincup ]

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

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njlymemom
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^^^

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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Tincup
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If you want to get on the LDA mailing list so you can get these Action Alerts when they come out...

Sign up here.

http://www.cwork.com/

It is nice to see the real version rather than folks trying to copy and paste it.

[Big Grin]

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

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bettyg
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tincup, good job above!! just got on and was going to paste it also.


extra special your showing ALL the email addresses and posting them so they have the , space and will go without bouncing back...


thoughtful of you to write your letter as well for us brain dead folks; outstanding!!


i'll send mine now since the work you've done has made it quick and SIMPLE for me! god bless you tincup.


may i suggest you show today's date in subject line as we have 2 action alerts back-to-back, and we know which is the MOST CURRENT when reading this at a glance with the rest of those going down the page?

time slips away from us neuro folks so quickly....thanks my friend.


just click on the magic pencil to get your ice cream now [Smile] yummy yummy [lol] [lol]

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bettyg
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DONE .... i added myself to the cc area.

only change i made was Dear Senators:
without naming them all!!

it went without any problems.

jim whelan's office sent an automatic response ... may take some time to get back to me! [Smile]

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Tincup
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Magic pencil? Ice cream?

Will do anything for that!

[Big Grin]

Thanks BG.

--------------------
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www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Pinelady
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Done here. I do think you should also post in

Medical. This directly could influence the way the

Lyme patients are now being treated since we all

know 3 weeks is enough antibiotics for anyone to be

rid of these infections. Could get more help there.

Go Get UM Tinny.

--------------------
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

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njlymemom
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Ken Friedman's power point presentation entitled
"The Positive Side of Lyme":

http://www.pandoranet.info/documents/ThePositiveSideofLyme.ppt#289,15,Support

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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Pinelady
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Broke up for neuro people in list below this post.

Letter from Sen Bateman stated:

Please note that the Assembly version passed the Assembly on June 25, 2009 by a vote of 78-0 and has already been field with the New Jersey Secretary of State.

PATIENT ALLIANCE FOR NEUROENDOCRINEIMMUNE DISORDERS ORGANIZATION FOR RESEARCH AND ADVOCACY - 501 c 3 - ID # 550795076
C/O VIA + COMPANY, 255 Alhambra Circle, Suite 715, Coral Gables, Florida 33134
Phone: 305-441-1591 Volunteer Help line%

[ 10-20-2009, 09:27 AM: Message edited by: Pinelady ]

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hurtingramma
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An additional concern- this same group recently reassured NJ legislators that the "overall concept of the NEI Center's mission is already fully supported by administrators within the CDC, the National Institutes of Health (NIH), and the Vermont Department of Health."

Can you tell me where this comes from ? I'm in VT and we are concerned about the validity of this statement.

--------------------
"Few of us can do great things, but all of us can do small things with great love". Mother Theresa

http://www.facebook.com/profile.php?id=1629665573&ref=name

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22dreams
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If the vote passed the "assembly" on June 25th, I just want to be sure we are taking the correct next step.

Is the pecking order:

1) Assembly
2) Secretary of State (?)
3) Senate

Can someone please clarify?

There are people who are feeling very sick today-

who want to write but
want to make sure their efforts aren't wasted as their energy and health is precious--

If they are to push themselves to write today they want to make certain their efforts are put in the right direction.

Thank you.


quote:
Originally posted by Pinelady:
Tincup I received a letter stating this --

Please note that the Assembly version passed the Assembly on June 25, 2009 by a vote of 78-0 and has already been field with the New Jersey Secretary of State.

Need to know now what?


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Tincup
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Let me get breakfast and I will update all.

It's crazy busy here right now... and I have some news.

But gotta have my grits first!

[Big Grin]

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

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Dayle Ann
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I am concerned that you quoted the blurb about Vt Dept of Health supporting the concept of the Center. This has nothing to do with the issue of Lyme disease as an autoimmune disease. Making a statement that implies that they are part of the effort to include Lyme undercuts the issue you are trying to address (because it is not true- they have not taken that stand).

We in Vermont have worked hard to build a working relationship with folks at the VT DOH. Though we do not agree on all things, we have been able to collaborate on some important outreach projects. By misconstruing their position, you place the DOH at risk of being made a target for something they actually have nothing to do with. I fear that as a result, we may lost our credibility with them.

As coordinator of the Vermont Lyme Network, I wr0te a letter on behalf of VLN asking that Lyme disease not be listed as an autoimmune disease, and provided sound arguments why this should be the case.

But I am disappointed in the way LDA has misconstrued the facts about the background. By doing so, I'm afraid LDA has inadvertently provided ammunition that can be used undercut their own credibility. That saddens me.

To better understand the context, you can read the actual letter from the organization referred to here:
http://www.lifelyme.org/
Look under "Our mission".

--------------------
..." ...almost basically together situation."
unknown quote from somewhere


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bettyg
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pinelady, on the letter you copied, i had recently broken that letter of for neuros like me, but do you think i can find it by reading my most recent posts .... darn it.
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Dayle Ann
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I just went through the LifeLyme website. I came away impressed. The only difference of opinion is whether Lyme should be included in the NJ resolution. Their links point to the same places we all go to for info.

So I am baffled by the "conspiracy" sounding rhetoric from LDA about their letter. LifeLyme may have a different opinion on this matter from the LDA, but their rationale for it is not malignant. It seems to me that the kind of knee-jerk language of this "Action Alert" from LDA is defamatory to some good people.

So when you write your letters, please be careful about how you phrase them. Let's treat this group with the dignity they deserve-- and respect them for the good they have done.

--------------------
..." ...almost basically together situation."
unknown quote from somewhere


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hurtingramma
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OK - TC - get your grits, we are (im)patiently waiting for any updates from you. [Big Grin]

--------------------
"Few of us can do great things, but all of us can do small things with great love". Mother Theresa

http://www.facebook.com/profile.php?id=1629665573&ref=name

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njlymemom
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How long does it take to make grits?

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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Robin123
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Yeah, how long does it take for you to eat breakfast? I suggest you have some instant cereal on hand for emergency days [lol]
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Tincup
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Grits?

Watch the movie, My Cousin Vinney. It will tell you how long it takes. HA!

[Big Grin]

Hey Dayle Ann...

You said..

"I am concerned that you quoted the blurb about Vt Dept of Health supporting the concept of the Center. This has nothing to do with the issue of Lyme disease as an autoimmune disease. Making a statement that implies that they are part of the effort to include Lyme undercuts the issue you are trying to address (because it is not true- they have not taken that stand)."

One of us is confused here?

First of all, the Senate sponsor (Bateman) is sending out the letters PANDORA wrote as an explanation to why the words "Lyme disease" are in the Resolution.

If you will read it.... it is very ugly to all other groups, especially the LDA... and there is ABSOLUTELY no reason for this to be happening.

The letter they wrote is not only ugly, but very unprofessional.

So please note- the quote above was written by the PANDORA group in their letter to legislators- all of them.

PANDORA is the one that is claiming the VT DOH backs this idea. True or not? I don't know.

But the reason, in my opinion, the LDA quoted that part of the letter was to show folks the CDC and NIH were backing this Center... cause all three were lumped together.

They (LDA) didn't/wouldn't use a PARTIAL quote (leaving out mention of Vermont- it wouldn't be proper- and since PANDORA originally claimed it was true... and in the same sentence with the CDC and NIH backing the project... it was already there.

You said...

"But I am disappointed in the way LDA has misconstrued the facts about the background. By doing so, I'm afraid LDA has inadvertently provided ammunition that can be used undercut their own credibility. That saddens me."

Cheer up!

No one is undercutting anyones credibility as far as the Resolution goes... not anyone from the LDA anyhow.

The LDA is doing a wonderful job, with your help, trying to get the words "Lyme disease" out of the Resolution... which is the way, in MY opinion... it should be.

Hope that helps?

[Big Grin]

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

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Tincup
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Dayle-Ann,

You said.. "So I am baffled by the "conspiracy" sounding rhetoric from LDA about their letter."

The LDA is the LAST folks I know that would be talking conspiracy... so not sure where you are getting that vibe from?

They are more than super careful to get the facts... and that is what they are reporting there.

You said.. "LifeLyme may have a different opinion on this matter from the LDA, but their rationale for it is not malignant. It seems to me that the kind of knee-jerk language of this "Action Alert" from LDA is defamatory to some good people."

Again... do you realize the offending letter is from PANDORA, not the LDA?

They (PANDORA) said... about the LDA.. because the LDA wrote to the sponsor to ask that the words "Lyme disease" be removed (not knowing PANDORA or any Lyme folks were even involved at the time)....

"Representatives of the NEI Center believe it is unfortunate and misguided for an alleged patient advocacy group to oppose efforts to enhance research, patient care, education, and community social services for an illness that the patient advocate group claims to represent. The motivation of such a group is suspect.

With regard to recently written materials already being circulated on the Internet and the comments made by a patient advocate group that has gone on record as opposing the inclusion of Lyme disease in the disorders to be studied at the NeuroEndocrineImmune (NEI) Center, we respond:"

No one wants to kick PANDORA.. or their efforts to help folks with CFS and autoimmune disorders... they just don't want Lyme disease in that category.

[Big Grin]

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

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Tincup
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Hurtin' said.. and she quoted this first part...

"An additional concern- this same group recently reassured NJ legislators that the "overall concept of the NEI Center's mission is already fully supported by administrators within the CDC, the National Institutes of Health (NIH), and the Vermont Department of Health."

Can you tell me where this comes from ? I'm in VT and we are concerned about the validity of this statement."

Yes.

I would be concerned too, Hurtin'...

From what it appears.. PANDORA wrote it in their Letter to NJ legislators... posted above.

However, the Senate sponsor, when he wanted to bring up the point the Resolution's concepts were backed by the CDC and NIH... did NOT state Vermont in his quote. Why, I don't know?

So my guess is.. and the only place I've seen it is.. on the PANDORA Letter to NJ legislators.

They would need to explain how Vermont got tossed in the mix.

[Big Grin]

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

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Tincup
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Hey Pine...

Maybe YOU could make mention of the posts under the Medical Section for us?

I have about used up all my, "Don't post in the wrong place- get out of jail free cards."

[lol]

Pine.. that note is interesting. Can you tell me where it came from?

You said.. "Tincup I received a letter stating this --

Please note that the Assembly version passed the Assembly on June 25, 2009 by a vote of 78-0 and has already been field with the New Jersey Secretary of State."

Then you said.. "Need to know now what?"

Hey Pine... that is a VERY cool sentence. Did you make it up?

[lol]

My GUESS is the note was from Bateman's office?

If so... they told me today (about noon) they are being swamped with calls.

Their response to me ... when I mentioned what THEY called "oh, the "LymeS Disease thing"... was...

"There is a lot of misinformation out there about Lymes disease."

Of course.... being me.. heaven forbid...

I stopped her in her tracks and told her that patients don't want to hear that stuff, THEY KNOW BETTER.

And for their office to continue to say that "stuff" and ignore the calls/letters is only fueling the fire. (Not to mention insulting to patient's intelligence.)

I can not for the life of me figure out WHY they would, as an official agency, send out PANDORA's letters for their explanation.... especially one that slam others ... unless they never bothered to read it.

NOT professional in MY opinion.

Anyhow...

I mentioned they need to listen to those contacting them and take out "Lyme disease" from the Resolution's wording.

The person I spoke to kinda got real flustered, guess no one ever called them on this ... and they are having someone else call me back.

Hope that answers your questions?

[Big Grin]

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

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Tincup
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Oh..

And NJmom and Robin 4639363...

Funny ones you are! Real funny!

[lol]

--------------------
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www.LymeDoc.org

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Pinelady
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That was my email reply from Sen. Bateman was the only one I received. HUMMMM? My letter requesting

opposition to the inclusion of SB133 as requested

by a email from FROM LDA, TFL, CALDA, LDASEPA with

list of Senator Committee members emails to write.

I wrote each one. First post was direct reply

second was info on Pandora. All in one email. For

clarification. Lead on little sister. What now?

By the way I hate grits. [Cool]

[ 10-20-2009, 10:43 AM: Message edited by: Pinelady ]

--------------------
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

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Tincup
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OH NO! 22 dreams... I KNEW I missed a post here! So sorry!

Too much going on today... my head is feeling like mud... and my body is moving like a slug.

You said...

"Is the pecking order:

1) Assembly
2) Secretary of State (?)
3) Senate

Can someone please clarify?"

I know they are suppose to be out of session right now or going out.. but will be back soon. Don't know what the Secretary of State has to do with this.. but ok?

But... next it goes to the Senate Health, blah blah blah Committee.

That's where/who we are writing to now.

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

You said..

"There are people who are feeling very sick today- who want to write but want to make sure their efforts aren't wasted as their energy and health is precious--

If they are to push themselves to write today they want to make certain their efforts are put in the right direction."

Good question and very good to be concerned.

I can certainly understand that... been there myself many times.

I would say you have some time to do this... not to worry.

It is always good to have folks respond to the Action Alerts.

After all, we can not get things done that YOU want or need, if folks don't take Action.

I expect all week they need to hear from you... so don't push yourself too hard to get it done today. OK?

And it doesn't have to be lengthy or detailed. Just a simple note saying you want the words Lyme disease out of the Resolution.

There will be.. and already are... folks (docs, group leaders, organizations, etc) talking to them who know the scoop.

The legislators just need to know what YOU all want as patients... and how many patients feel this is important.

Of course the more the better... to help get the point across.

So please do what you can, when it is good for you.

It will be MUCH appreciated!

Always!

Thanks 22.. and the rest of you.

Make your voices heard... and let them know...

We won't go away!

[Big Grin]

--------------------
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www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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If I miss someone and don't answer.. it is not because I am ignoring you...

It's just that my brain is on vacation right now... so please ring my chimes one more time.

OK?

[Big Grin]

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www.MarylandLyme.org
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Tincup
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This came a while ago... it may answer some of your concerns. Pay attention Vermont questioning folks.

There is a PhD involved with PANDORA. Kenneth Friedman.

From the government website (Health and Human Services)... where he was on a CFS Committee.

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

Professional Affiliations:

Board member and Chair of the Membership Committee, IACFS/ME

Board member and Chair of the Medical Student Scholarship Committee, New Jersey CFS Association

Secretary and Chairman of the Public Policy Committee, P.A.N.D.O.R.A.

Member, Vermont CFIDS Association Consultant service:

MedaCorp, a private banking group trying to raise venture capital for private companies. I advise companies over the phone without knowing who they are.

Hemispherex - consultancy limited to public policy and information on the needs of CFS patients, not drug development.

Pfizer - consultancy limited to public policy and information on the needs of FM patients, not drug development.

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

As for the Center for Excellence...

"Dr. Papernik: This issue with the Centers of Excellence, I think, is that it's too broad and it's too big.

If we're going to develop something like that, I think we need to think on a smaller scale that is more easily managed by whichever government department is appropriate.

The Education Subcommittee talked about an alternative to setting up five different Centers of Excellence throughout the country, which would cost quite a lot of money.

We were looking at one centralized area that would be the core of information gathering.

That core would be connected to several of the specialists throughout the country who deal with CFS. Information would be fed into and filed at this one centralized office.

In that way we can develop outcome data and we can develop a lot of evidence-based issues.

That always seems to be the problem with this illness.

People want to have evidence-based medicine; people want outcome data and we don't have it to give.

Instead of thinking of large-scale Centers of Excellence throughout the country, we discussed a smaller-scale, office-based core that is connected to other offices through an electronic medical record system.

It would be a more amendable request compared to asking for five Centers of Excellence."


http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac080505min.html

--------------------
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www.MarylandLyme.org
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bettyg
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breaking this up once more; can't find my other broken up version for us neuro lyme folks.. betty


Originally posted by Pinelady:


PATIENT ALLIANCE FOR NEUROENDOCRINEIMMUNE DISORDERS ORGANIZATION FOR RESEARCH AND ADVOCACY

- 501 c 3 - ID # 550795076

C/O VIA + COMPANY,
255 Alhambra Circle, Suite 715,
Coral Gables, Florida 33134

Phone: 305-441-1591
Volunteer Help line: 954-783-6771
- www.pandoranet.info


Introducing the NeuroEndocrineImmune (NEI) Center


A patient-driven grassroots project of P.A.N.D.O.R.A. in partnership with the Lanford Foundation-Lifelyme, Inc.


Science = Innovation = Chronic Illness = Solutions

October 12, 2009


Re: Clarifying the goals of the NeuroEndocrineImmune (NEI) Center and the Inclusion of Lyme Disease


The NeuroEndocrineImmune (NEI) Center (of New Jersey) is dedicated to research, patient care, education, and community social services for patients with a group of illnesses that affect the nervous, endocrine, and immune systems.


The body of current scientific research confirms that these illnesses share commonality and overlap of symptoms, which suggest shared pathophysiological mechanisms that produce chronic illness in these patients.


For example, in recent and in-press publications, researchers have reported that approximately 30% of previously diagnosed chronic fatigue syndrome (CFS) patients test positive for Lyme disease (LD).


The Center for Disease Control and Prevention (CDC- William Reeves) at the May 27-28, 2009, CFS Advisory Committee meeting stated that Lyme disease is known to be a potential trigger for CFS.


Therefore, if some patients with CFS are treated for LD, their quality of life and health will improve considerably.


The NEI Center is dedicated to increasing knowledge, improving patient care, developing new therapies, and serving as a repository and dispenser of scientific information regarding these illnesses.


It is not the intent or role of center personnel to classify or reclassify or to name or rename any of these illnesses.


The NEI Center is committed to the development of a robust, healthcare community within the State of New Jersey.


We believe that any interested party who wishes to mount a research, patient care, educational, or social services program within the state, and who is willing to abide by the laws and safeguards provided by the state and the federal governments,

has the right to engage in such activity without the infringement or opposition of another organization.


Representatives of the NEI Center believe it is unfortunate and misguided for an alleged patient advocacy group to oppose efforts to enhance research, patient care, education, and community social services for an illness that the patient advocate group claims to represent.

The motivation of such a group is suspect.


With regard to recently written materials already being circulated on the Internet and the comments made by a patient advocate group that has gone on record as opposing the inclusion of Lyme disease in the disorders to be studied at the NeuroEndocrineImmune (NEI) Center, we respond:


The NEI Center (also referred here as the Center) will serve as a repository for all data generated by its investigators and by those researchers who wish to submit their data to the Center.


The NEI Center has not, and will not, address the issue of the classification of any of the illnesses being studied within the center or elsewhere.


It is the position of the NEI Center that the classification of illnesses (be they diseases or syndromes) is the responsibility of the World Health Organization, which catalogues and classifies the recognized illnesses of the world. (ICD10/ICD9).


It would obviously be presumptive of the NEI Center to usurp or attempt to alter the work of the World Health Organization.


The NEI Center, as does Western medicine, recognizes the distinction between symptomatic treatment and curative treatment of illness.


Although curative treatment is the ideal goal of health care, curative treatment is not available for all illnesses.


When such treatment is not available, or even if it is available, symptomatic treatment is standard medical procedure.


Thus, for a patient with pneumonia, antibiotic treatment may be curative, but such treatment does not preclude the physician from dispensing medication that will ease the patient's cough or reduce his or her fever.


The NEI Center believes that many neuroendocrineimmune disorders have complex etiologies.


Many researchers and physicians feel that long-term, chronic infection will deplete and invoke changes in the immune system.


Multiple co-infections are now being found in many chronically infected patients.

To preclude the investigation of co-infections in patients with Lyme disease based on the fear that such findings would suggest immune system abnormalities as stated by this patient advocate group in Lyme disease patients (see attachment),

does a significant disservice to Lyme disease patients and prevents the freedom of scientific inquiry that is the basis of success in biomedical research and the development of new therapeutic agents and procedures.


The NEI Center maintains that Lyme disease, as well as the other neuroendocrineimmune disorders (NEIDs) that the center embraces, is not currently classified as autoimmune disorders.


Unless future scientific research demonstrates otherwise, Lyme disease will always remain in its current class of illnesses and, thus not be included or classified as an autoimmune disorder.


However, the current and/or future classifications of Lyme disease do not preclude an autoimmune component from being present in this disease.


The NEI Center and the biomedical research community should be permitted the right to investigate the possible presence of an autoimmune component in chronic or persistent Lyme disease (PLD) or the induction of autoimmune defects in persons exhibiting chronic or PLD.


The NEI Center believes that the inclusion of Lyme disease in the center's mission will accelerate research and the development of therapeutics for patients with LD as well as speed up research and development of therapeutics for illnesses with shared and overlapping symptoms.


The concept and mission of the NEI Center is a scientific, medical, pharmaceutical, and patient-driven grassroots initiative that aim for quality of life solutions for a large population of Americans that for far too long have been forgotten and underserved within our current medical system.


The overall concept of the NEI Center's mission is already fully supported by administrators within the CDC, the National Institutes of Health (NIH), and the Vermont Department of Health.


The NEI Center, as proposed, complies with the new biomedical research model being promoted by the NIH and will stand as an example of the implementation of its Roadmap Initiative.


The enhanced and accelerated study of neuroendocrineimmune illnesses, including Lyme disease, at the NEI Center can only improve the knowledge of and therapeutics for all these illnesses.


There are no negative aspects to the inclusion of any related illness in the mission of the NEI Center.


Marly "Marla" C. Silverman Sandi Lanford
Marly C. Silverman
Sandi Lanford
Founder
Director-at-Large
Founder & President
P.A.N.D.O.R.A., Inc.
P.A.N.D.O.R.A., Inc.
Founder, The Lanford Foundation-Lifelyme, Inc.

www.pandoranet.info

www.lifelyme.org [/QUOTE]

PINELADY, could you copy paste this to yours shown above OR state at the beginning of it that bettyg broke up the below letter and found at END of page 1 of this post?

big thanks ... hugs/kisses my friend

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Pinelady
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Thanks Bettyg. I guess there is nothing wrong with

your state profiting from Lyme patients especially

now that they are learning CFS is most likely Lyme.

If they do not change the guidelines and develop a

better test and do their jobs(CDC, IDSA, NIH), of disseminate the

information that has been learned I would say

they would have a big edge on the market right now.

--------------------
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

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hurtingramma
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Dr. Friedman is all about CFS - from the Vermont CFIDS website:

Dr. Kenneth J. Friedman is an Associate

Professor of Pharmacology and Physiology at the New Jersey Medical School in Newark,

NJ. He developed an interest in Chronic Fatigue Syndrome (CFS)

when his daughter became ill with CFS/Fibromyalgia in the early 1990's. He is the

author of the lead chapter of the New Jersey Consensus Manual for the Primary Care and

Management of Chronic Fatigue Syndrome, and co-author of two additional chapters.

The manual has been translated into both in Spanish and Japanese.

The manual is also an official resource for physicians in the State of Vermont available

in hard copy through the Department of Health of the State of Vermont. Dr. Friedman

served a more-than three-year term on the Chronic Fatigue Syndrome Advisory

Committee (CFSAC), a federal Advisory Committee that advises the U.S. Secretary of

Health on how proceed with the difficult and complex issues of Chronic Fatigue Syndrome. Dr. Friedman served on both the Education and Research Subcommittees of the CFSAC.

He is the author of a research subcommittee report entitled, ``Fish or War,'' which served

as the source for many of the recommendations submitted to the U.S. Secretary of Health

by the advisory committee. Dr. Friedman serves on the Board of the New Jersey Chronic

Fatigue Syndrome Association (NJCFSA) and is chair of its Medical Student Scholarship

Committee. NJCFSA awards a yearly scholarship to one medical student who writes an

award-winning essay about CFS. After serving on the Federal Advisory Committee, Dr.

Friedman joined P.A.N.D.O.R.A., and serves as its Secretary and Chair of Public Policy.

P.A.N.D.O.R.A. has just announced that it is creating medical student scholarships

modeled after the NJCFSA CFS scholarship. The Dr. Kenneth Friedman Award is being

given to the VT CFIDS Association for a medical student scholarship in the State of

Vermont. Dr. Friedman serves as the current Chair of Membership of the International

Association for Chronic Fatigue Syndrome/ME (IACFS/ME) and as an adviser to a new,

international, ``one stop shopping'' website for CFS patients and their caregivers named

cfsKnowledgeBase.com.

[ 10-20-2009, 05:41 PM: Message edited by: hurtingramma ]

--------------------
"Few of us can do great things, but all of us can do small things with great love". Mother Theresa

http://www.facebook.com/profile.php?id=1629665573&ref=name

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Pinelady
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I was just thinking after hearing Suzanne Summers

speak about her new book-

I would liken Lyme closer

to cancer than Autoimmune disease.

What say you?


If

we cannot be Lyme patients why can't we be blood

disease/oncology/cancer patients? Might as well-

that is over 200,000 patients times how many

dollars equals how much a year profit.... Make me barf.

--------------------
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

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bettyg
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i posted tincup's sample letter and email addresses on lyme site:

mdjunction.com and one of their members copied it to 1-2 other lyme sites she goes too ... it's spreading!!

did anyone send to cheryl at lymeinfo??
******************************************

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njlymemom
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Please read this, I reposted it here:

quote:
Originally posted by njlymemom:
Ken Friedman's (power point?) entitled

"The Positive Side of Lyme" at this link:

http://www.pandoranet.info/documents/ThePositiveSideofLyme.ppt#289,15,Support for Lyme Disease 3/5



--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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njlymemom
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^^^^

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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hurtingramma
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My computer would not open the link - it kept going to save...

--------------------
"Few of us can do great things, but all of us can do small things with great love". Mother Theresa

http://www.facebook.com/profile.php?id=1629665573&ref=name

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njlymemom
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Hi - I am sorry that you can't open the link.
I tried it and it opened for me.

I would copy the slides and post, but thre are 45 slides .... it would take forever

is thre anyone who is more computer literate that can help?

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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njlymemom
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will this work for you?


http://www.pandoranet.info/documents/ThePositiveSideofLyme.ppt#256,1,The Positive Side of Lyme Similarities and Paradoxes in Chronic Illness A Medical Conference The Renaissance Vinoy Resort St. Petersburg, FL Saturday, January 19, 2008

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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bettyg
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both links opened for me; it gives you a choice to OPEN OR SAVE; chose open only. [Smile]
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hurtingramma
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That's what I did Bettyg. I was at my work computer. Home computer worked OK.

--------------------
"Few of us can do great things, but all of us can do small things with great love". Mother Theresa

http://www.facebook.com/profile.php?id=1629665573&ref=name

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lightparfait
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I support this new center in NJ along with other lyme groups efforts. I have met the individuals involved and their motivation is pure of heart, inclusive, and not for personal gain or notoriety.

No reason for any to feel threatened, as this will only be another stepping stone to getting lyme research as well as other related problems recognized and funded. This center will only validate individual lyme research causes that already exist, helping to remove the negative stigma created by the medical community who dismiss "chronic lyme".

This research center will not effect the work, fundraising and focus of LDA...so no need to create "spin".

This research center will bring together researchers from around the world who currently study similar illnesses to share information and study the possible connections and root causes.

We don't need tunnel vision anymore...as we all know this lyme we deal with has individual treatment successes. It is not just lyme. We all have other things along with the lyme! There is not just one way, or we would all be healed! There is so much more to research and to test.

We need to collaborate as researchers, patients and physicians, by looking at the total picture and be inclusive of complementary therapies. And listen to those who have valid research and treatment success with open minds.

Let's all work together please! Our lives and our future generations are at stake.

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Tincup
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Light.. I respect you and the fact you have an opinion... but I do have issues with what is going on behind the scenes. STRONG issues.

Light said.. "We need to collaborate as researchers, patients and physicians, by looking at the total picture and be inclusive of complementary therapies. "

That is fine and I believe we are already doing that to a good extent in the Lyme Community.

BUT... BUT... BUT...

What we don't need is to be lumped together with other diseases in this fashion... and I do believe as an individual and as a LYME Community, we have a right to state that opinion and have our wishes respected.

And we need folks who are screwing around behind the scenes to knock it off ... and to be up front and truthful when dealing with us.

If the CFS advocates REALLY had our best interests at heart.. they would GLADLY respect our wishes and do what the overwhelming majority of folks in the Lyme Community are asking for.

Soooooooooo, what's their problem?

We simply want to have the two words (Lyme disease) removed from their Resolution.

That's all.

Instead of respecting that simple request and being done with it... they are actively trying to snooker us and the officials.

And contrary to what is being said... we are NOT rolling over and letting it slide.

And if this keeps up... there could be an all out war and NO Center will be in the picture in the near future... for anyone.

You have to ask yourself...

WHY is this one CFS group in Florida trying to override what patients want in New Jersey and elsewhere?

They have NO experience with Lyme and NO history of working on our behalf ... and no medical or scientific knowledge of Lyme. (Even if they did it wouldn't justify what they are doing.)

So WHY are they FORCING us to join their movement when it is clear we don't want to do so? WHY are they continuing to insist we be in their autoimmune boat?

What's in it for them and what makes them feel we need to sit in their laps throughout this process of THEM getting a Center ... rather than them simply emailing us a new discovery that may benefit our patients, if they come up with one?

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

Light said.. "This center will only validate individual lyme research causes that already exist, >>> helping to remove the negative stigma created by the medical community who dismiss "chronic lyme".<<<

With all due respect..

First, you won't be there. You also won't be in charge... RWJ will be... and it will be their way or the highway.

Second...

Robert Wood Johnson- home to the toads that have caused us so much harm already?

UGGGGGGGGGG!!!! This is unbelievable.

Maybe we should secretly sign up the CFS group to be in bed with the KKK ... and return the favor?

After all, sometimes I am tired too.. and with that connection to chronic fatigue syndrome, maybe I should be able to make their decisions for them, without their say so.

Or should I?


[rant]

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

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bettyg
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tincup, you're starting to rest up from your 5 day ilads conference .... good.

thx for your above comments too for us less informed members [Smile] hugs

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lightparfait
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Tin Cup,

I respect you and all your usual wise council and support to us with lyme.

But this time you do not have the true facts.

Since you asked me pointed questions, I will give you a respectful response.

you ask..."WHY is this one CFS group in Florida trying to override what patients want in New Jersey and elsewhere?"

Patients in New Jersey and across the world, including myself have requested this, and have been waiting for something like this for a very long time. We see the similarities of illnesses and believe having the experts work together would be beneficial in discovery.

Most of us have more than lyme in the mix! Many people here in NJ and on this lymenet board are extremely excited and supportive of working toward finding accurate and affordable testing, treatments, and a clinic.

You say..."What we don't need is to be lumped together with other diseases in this fashion... and I do believe as an individual and as a LYME Community, we have a right to state that opinion and have our wishes respected.

You are respected TinCup and can state whatever you like...but please respect me and all the other many lyme patients who want this. It is a free nation, and we have a right to support or establish our own initiatives without your personal approval. There is an overwhelming number of supporters, LLMD's and researchers for this center in NJ from around the world. Many were presenters at the most recent conference.


You say..."First, you won't be there. You also won't be in charge... RWJ will be... and it will be their way or the highway.
Second...
Robert Wood Johnson- home to the toads that have caused us so much harm already?"

Actually, I will be there, but not at RWJ. And no, I won't be in charge, but I will help fund it and support it as long as it retains the vision set forth. It will be a stepping stone to discovery.


You ask me..."So WHY are they FORCING us to join their movement when it is clear we don't want to do so? WHY are they continuing to insist we be in their autoimmune boat? Maybe we should secretly sign up the CFS group to be in bed with the KKK ... and return the favor?"

No one wants to force anyone to join in a movement...there is no movement! There is no "we" and "they"...it is "us" because we all have lyme, and most also have problems with their immune system not functioning correctly, and each has their own twist on their chronic condition. It is very individual. But with lyme...we are in the same boat even if we dont like it...

One day my dream is that we dont need those lifeboats anymore to stay afloat...just swim freely on our own!

Please continue what you do best, and support the lyme community. Your great work is needed. But we would all be foolish not to acknowledge that much more is to be done and there are other ways and other people who also have a vision. This is not about one person or one group.

I only know of a recent announcement to inform those who are interested that this is happening. I for one am glad to hear of this, have researched it, spoken to those involved and feel positive about it! I encourage all others who are concerned to do the same.

I am in New Jersey with many other lyme patients who do want this here...and not in Florida if possible. Only a few people are in Florida...most involved are here in NJ and the NE. This is for all patients, not just those in NJ. It is planned to be a world wide center.

Don't understand why certain people here on lymenet feel that they need to be the only word in NJ related to lyme? No one else has established an institute here nor did Trenton hear from any others establishing an institute to study chronic illness...

I give these people much credit for following their hearts and donating their time and energy to help our future generations.

I hope that clarifies your questions to me.

If you know those involved as you claim, please give them a call to get your facts stated correctly and credibly.

Respectfully,
lp

[ 10-28-2009, 07:10 PM: Message edited by: lightparfait ]

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Tincup
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Hey Light...

My first reaction to your response was to laugh.

Sorry about that.

The next was realizing I was wrong in writing the post as if it were directed to you.

My fault.

I was blowing off steam after a week or more of learning the "latest" on the behind the scenes CRAP that has been going on.

I am sorry if you, in any way, thought I was blowing up a storm and raining all over you personally. That was not my intent at all.

But it sure did look like it, didn't it?

[Big Grin]

I have heard most of your comments already in defense of the proposed Center... so nothing new really... but I appreciate you sharing your own thoughts on the matter.

Especially since those involved have had such a long time to do so and haven't bothered.

With that said...

I would like to make three things clear.. if you don't mind.

1. You said.. and the reason for my laughing...

"But this time you do not have the true facts."

After over 20 years of doing what I do... and contacts with tens of thousands of individuals in need of help... and dealing with high ups and officials to try to get us all help... and spending every spare minute working my self simple to try to help us all get ahead....

There is one thing that those who know me can not say truthfully.

They can't say I don't know the facts.

Had there been times when I posted facts and they were not right....

No one would listen to me now.

Credibility is the key.. and since Day One I've had to go out of my way to get the facts and remain credible.

You (meaning the reader in general) may not like what I say.. but it is not for lack of having the facts in front of me before I say it.

As many know... I research the bee-geebees out of a topic, confirm it, recheck it and then... and only then.. do I put it out there.

If there is any hesitation or I am not sure... that is always indicated.

So please note- I do have the facts... at least as many as are available publicly.. and then some, actually quite a few, that aren't.

I also think the Lyme community NEEDS to know what they are NOT being told... as do the officials.

That is in the works, as we speak.

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

2. You said...

"Patients in New Jersey and across the world, including myself have requested this"..

And you said... "all the other many lyme patients who want this"... and ... "Many people here in NJ and on this lymenet board.."

And... you said... "There is an overwhelming number of supporters, LLMD's and researchers for this center in NJ from around the world."

And... "This is not about one person or one group."

And.. "I am in New Jersey with many other lyme patients who do want this here".

I think you get the point. You refer to many many many people wanting Lyme disease included in this Center.

And I am NOT trying to be a wise***.. not now anyhow.. but...

Can you give me a list of let's say 20 Lyme patients that want it?

I honestly don't know of any Lyme patients outside this core group working behind the scenes (with Pandora, et al) that want a Center at Robert Wood Johnson, if THEY know all the facts.

And I see Lyme groups all across the nation and their many Lyme members and MANY Lyme individuals saying NO to this.

And where were all these people that want a Lyme disease Center stationed at Robert Wood Johnson... and why weren't they asking other LYME patients prior to now what THEY wanted...

And/or why weren't they even mentioning it to us so it would be known? And why are many of the facts being hidden from them?

BTW- Dear Light- this is not directed to you... only as questions in general... so don't feel obliged to respond.

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

3. You said.. "No one wants to force anyone to join in a movement...there is no movement! There is no "we" and "they"...it is "us" because we all have lyme."

Actually, there is no "us". There is a handful of people who DON'T know Lyme .. who are promoting a Center for researching and treating those who have diseases with an unknown origin...

Who have stuck Lyme patients in their NEI boat against their will... and who are making life altering decisions for them AGAINST their will.

If you take a look around at what is going on...

Thank you very much but we already have folks doing that.

They are called the IDSA.. and look how that turned out!

[Eek!]

Bottom line...

If Lyme patients have symptoms they want to set aside and not address them as if Bb were the caustic agent... and explore something different...

FINE and DANDY!

If that is the case.... they can certainly go to a CFS Center.. or a fibro duck.. or a endo doc.. or a GWS specialist... or a voodoo doctor.

NO one is stopping them.

What we DON'T want though is to refocus the known bacterial origin for Lyme disease and the chronic symptoms that remain after (Robert Wood Johnson's- IDSA) standard treatment ...

And anyone who thinks Robert Wood Johnson won't gladly mess with that concept... well...

They need to take a long vacation at the Reality Check Ocean Resort.

[Big Grin]

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Healerdealer
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Hi Everyone - First time blogger, long time reader.

Had to get in on the action with all the buzz about the proposed NEI Center.

If you think about it, the concept of linking Lyme with other chronic diseases is downright...CLEVER!!

Lyme is controversial... we know that. I'll bet every one of us has been misdiagnosed at one time or another.

I'm sure most of you have heard of Dr. Trevor Marshall. He's the Marshall Protocol guy. I know some people that have had tremendous success with the protocol.

I realize it is a hard protocol and many doctors shy away from it.

I, myself, have never tried it.

Nevertheless, Dr. Marshall has found the link and backs it up scientifically.

Watch this 10 minute clip. Dr. Marshall has researched and believes he has found the common denominator in all these chronic diseases - the cell-wall deficient bacteria.

I absolutely guarantee you will be fascinated by this clip! It's his best yet in only 10 minutes.
Autoimmune Disease explained in 10 minutes


From: DrTrevorMarshall | September 19, 2009 | At the 4th Asian Congress on Autoimmunity, held in Singapore from September 11-13, 2009.

Professor Marshall's presentation reported both a pathogenesis and an effective therapy for many Autoimmune diagnoses.

http://www.youtube.com/user/DrTrevorMarshall#play/uploads/


There is always something new to learn.

PEACE

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lou
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The bottom line is that although research is good and we might have elements in common with other neuro diseases, we will have no control at all about how this is handled and what will be done with the information. And if the NIH and CDC are backing it.....well, when have they ever had the best interests of lyme patients in mind?

Will it help that CFS is now thought, at least by some, to be of infectious etiology? So, that all the "diseases" to be studied at this proposed institute will not be purely autoimmune.

A blogger suggested that this institute was being set up specifically to be a recipient of an NIH grant program. I don't trust the NIH. The lyme people there and their supervisors have been completely dishonest.

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lightparfait
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Who is "we" ?

Who feels that they need to control how lyme is handled by other people who too have lyme?

Who feels the need to speak for me and my many lyme neighbors in NJ and control our healthcare choices and fate?

I hear fears...not facts.

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Tincup
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Welcome healer dealer...

Cute name.

Not sure of the connection... if any... but are you just here to promote the marshall protocol? (Healer- dealer)

You posted in a topic regarding the proposed NEI Center.. and seem to want people to watch a marshall protocol video?

Now I know the Dr. F (in NJ) connection to the Center.. wanting to be the Medical Director of the NEI Center and all...

And I know that she promotes the marshall protocol for her patients...

But I am not sure why you are sharing this video here?

And I am pretty sure the folks who have heard about the proposed Center at the duck motel (RWJ) will not make the connection... unless they've heard of Dr. F's connection to the Center and her using the marshall protocol.

Care to come back and explain?

Thanks.

[Big Grin]

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Tincup
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Light..

You're back!

That's great.

Not sure who you are asking those question to... (we were posting at the same time) but I'll take a quick shot at a couple of comments.

You said.. "Who feels the need to speak for me and my many lyme neighbors in NJ and control our healthcare choices and fate?"

Only you should be doing that. If you want your voice heard.. make it heard.

But also understand many many many others will be doing the same .. and they may not agree with you.

You said.. "I hear fears...not facts."

I have about 60 pages of facts now on this topic.. and about 140 plus emails with more facts... and they are still coming in.

What exactly do you want to know?

[Big Grin]

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canbravelyme
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I'm watching now.

Does the Lyme green bracelet mean Lyme, or CFS?

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canbravelyme
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TC: How quickly did they get this hearing together? Did this begin with the discovery of the virus XMRV?

I don't know what to think of: http://www.cdc.gov/cfs/cfs_strategic_plan.html

"CFS Among Adolescents in Foster Care

The Georgia Department of Human Services has requested CDC, in collaboration with Emory University, to determine the relevance of unwellness among adolescent wards of the Georgia foster care program as these children manifest an excess of CFS risk factors. Planning will begin in late 2009, field work on the initial survey will begin in 2010, initial analyses will be complete by late 2010, and intervention studies will occur through 2013.

* Identify risk and resilience factors for CFS"

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njlymemom
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OK - can't take it anymore.

Light - you have said (I believe on several posts) you are hearing "fear" not "fact".

Well the fear you may be hearing is b/c I and many of my fellow NJ Lyme patients and caregivers have the facts. And I and many of MY NJ neighbors are NOT happy about this at all.

Why don't we just suggest to anyone that is not sure about this situation to make a few calls for themselves. I am sure many have already done so.

I did and got the facts myself. Not that I didn't believe what TC posted, I am just a curious soul.

Thank you TC for posting the facts.

Yes, RWJ is involved. Dr. F (male) talked to me, and he said that he would take calls if anyone had questions. So if you don't believe what TC is reporting, make your own call and hear it for yourself. Oh, and by the way, Dr. Friedman was very polite and curtious on the phone. Nice guy -
who admitted to me that he has done NO research for Lyme d. but not to worry b/c he has "the basic concept of Lyme" and this is a direct quote.

Yoo Hoo - wake up!

The fact that those 2 words "Lyme disease" is causing such a ruckus should tell you something.

I can't watch what you have posted TC(some hearing??)it may just be that I am having a rotten day but it is not working for me. So I am following your posts - keep it up if you can and thanks.

--------------------
This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.


The shortest way to do many things is to do only one thing at a time.

cb

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Tincup
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Canbrave said.. "Does the Lyme green bracelet mean Lyme, or CFS?"

Since I didn't hear the words "Lyme disease" mentioned in the hearing.. and I didn't hear all the presentations for both days.... so it may have been mentioned...

My GUESS is they have adopted our lime green color to show unity for their cause. (??)

Lime green has always been "our color", if you will.. for as long as I can remember... and I don't know when or where they have adopted it.

It could be a coincidence.. and/or there could have been Lyme patients behind it?

I honestly don't know.

[Big Grin]

Canbrave said... "How quickly did they get this hearing together? Did this begin with the discovery of the virus XMRV?"

Somewhere in piles of notes I THINK I remember seeing that it had been in the works for a while. (?)

MAYBE even planned as a regular thing.. a committee gathering where they have to report and folks can join in if they sign up?

I guess I sound dumb... oh well, nothing new there...

But I honestly don't remember. I've read soooooooo much stuff.. it is all becoming a blur tonight.

Sorry I am VERY tired this evening.... but if you want me to check through the notes to find out... I certainly will.

OR.. maybe someone else can come up with the answers that I am not able to recall right now?

That would be nice.

[Big Grin]

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Tincup
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NJ mom...

You didn't miss much. After two days it was decided the CDC will hear suggestions from the CFS committee that a new definition will be considered for CFS.

I'm sure I am missing some stuff they feel is important.. but that is what I got out of it after two LONG days of listening.

Brain burned out about now.

MY brain that is.

[Big Grin]

And thanks for explaining that "fear" thing.

You are right on with your response.

[Big Grin]

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Healerdealer
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Hey Tincup,

The video I posted was for everyone to see a new perspective on Lyme - cause that is what Dr. Marshall focuses on.

I thought the video was eye-opening and I just wanted to share it.

As I said before, I've never done the Marshall Protocol, don't need to and I am not promoting it.

Of what I read, this proposed NIE Center may offer an opportunity for new breakthrough therapies and research. Sounds good to me!

I mean Lyme is the Bb bacteria - that is an undisputed scientific fact. There is no reason for anyone to deny this.

The question to ask is, "Have the people with the CFS and fibromyalgia and half our population that are chronically sick been tested for Lyme?"

Well, it sounds like this would be the place to go. (They are probably positive!)

But a little reality check - New Jersey is probably heading for bankruptcy. So, who knows if there is funding out there.

Gotta go carve a pumpkin!

And Remember....


There is always something new to learn.

Peace

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Cockapoo1996
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I guess it boils down to - would I send anyone I met who was in dire straits like I was years ago to this brand new NIE Center to get all better?

No way. I would send them to an experienced LLMD. Without an accurate Lyme test, this center should not exist with Lyme in the mix.

Thanks Tincup for all your hard work!!

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Tincup
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Bingo cockapoo! You said..

"Without an accurate Lyme test, this center should not exist with Lyme in the mix."

That is another reason for not putting us in a duck motel facility that is focusing on CFS and "unknowns".

[Big Grin]

Healer dealer..

Thanks for explaning your previous post. You had me going HuH?

[lol]

You said.. "But a little reality check - New Jersey is probably heading for bankruptcy. So, who knows if there is funding out there."

There is suppose to be stimulus funding floating around ... from what I hear.

Don't know who is scheduled to get it.. but my bet is the competition is fierce.

I also understand.. but not being IN New Jersey and not having first-hand knowledge I could be wrong...

But wasn't/isn't the University where this center would be under a lot of scrutiny already... and in a good deal of trouble for doing various ding dong things?

You know, scandels and such?

If that is the case... we need to be even more careful.

Hope your pumpkin carving went well!

[Big Grin]

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canbravelyme
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I really don't like this whole thing.

The CDC (read: IDSA) and NIH (read: IDSA) were "in agreement" Lyme disease be categorized as a "Neuro-Endocrine Immune Disorder".

How is it, despite the fact the IDSA Lyme disease guidelines are under review due to opposition from ILADS and CALDA (ultimately), no one consulted with ILADS or CALDA prior to including Lyme disease in this proposal?

This is a strategic move by the IDSA (under the guise of the CDC and NIH) to position itself in such fashion as to become the "obvious choice" for the federal government to allocate the research dollars we've been fighting for - if the funding finally does go through.

And these centres are proposed to arise State by State?

If you can get _one_ State to agree, then you set a precedent for another State. There is exponential growth from there.

A similar strategy was taken by the IDSA and American Academy of Neurology (AAN) in legitimizing their "independent" findings, with repect to Lyme disease, by using the same key panelists (Wormser, Shapiro et al.) and supporting each others' findings.

Having the CDC and NIH supporting Lyme disease as an NEID equates to the IDSA legitimizing the AAN's findings.

CDC (read: IDSA) + NIH (read: IDSA) = IDSA (read: Wormser, Shapiro et al.) + AAN (read: Wormser, Shapiro et al.).

Yikes!

[ 11-01-2009, 09:30 PM: Message edited by: canbravelyme ]

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Tincup
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You got it canbrave...

You said..

"And these centres are proposed to arise State by State?"

They are proposing having 5 nationally to start with from what I've noted.. and some even internationally.

[Eek!]

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canbravelyme
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Internationally?

Where do things stand now with respect to Lyme being removed from the P.A.N.D.O.R.A. list?

I'm with you: it's great they would like to finally address those with Fibro and Chronic Fatigue.

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Tincup
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"Where do things stand now with respect to Lyme being removed from the P.A.N.D.O.R.A. list?"

They obviously aren't talking... at least I've not heard a peep out of them for a few days now.

As far as the Center in NJ goes.. not looking likely at this time... Lyme or no Lyme.

I too would love to see the CFS & Fibro folks catch a break.

I would help them if I could.. just not when they drag Lyme in with it.

[Big Grin]

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Robin123
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Good - this does not look good to me either, certainly regarding Lyme, which is a known bacterial condition. Plus the co's.

And the rest of what's planned doesn't look good either - FM is not an unknown condition - it is coming in Lyme for a lot of us. They need to learn that fact.

MCS can be related to liver genetic difficulties which can be tested for through the Genova Diagnostic detoxigenomic test and the Yasko test. The testing results can be worked with, supplementwise. They need to know that.

Gulf War Syndrome has been tied to mycoplasma exposure, plus a soup of other chemicals, so sez Garth Nicolson, who's been working with the vets and their families ever since the early 90s.

Maybe CFDs is going to correlate with virus(es?) - they need to be aware of that.

These conditions should not be lumped, they should not be belittled, and they should not be controlled by RWJ/CDC/NIH. They need people who are going to do honest scientific work.

[ 11-09-2009, 05:29 AM: Message edited by: Robin123 ]

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canbravelyme
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I'm not sure how the centre is going to run things; CFS is likely caused by the recently found virus - once the etiology's been found, is CFS discharged from P.A.N.D.O.R.A.'s mandate only to have to find funding elsewhere?

T.C.: Should we still be writing in, as requested at the beginning of this thread?

[group hug]

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Tincup
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Robin 456843937.. I agree!

[Big Grin]

Hey canbrave...

I just made a call because I hadn't gotten an update in the last couple of days.. been kinda crazy busy with other stuff.

Word is... Folks are working on this and said they are also assessing the impact of the election this past Tues in NJ to see what next step should be.

Also waiting for results from various meetings... if that makes any sense.

Was told we'd be working on it this weekend and some news about the next steps, if any, should be forthcoming by mid-week, next week.

Sorry to be so brief.. but playing a waiting game at the moment.

Thank you for keeping this on your plate. It is an important issue.

[Big Grin]

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www.DrJonesKids.org
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canbravelyme
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You let me know what I can do.

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For medical advice related to Lyme disease, please see an ILADS physician.

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Robin123
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Thx, TC, I'm glad we agree on this!

Btw, do I get to call you TCCTTTCCTCTTCCTC?

cbl - you could become a US citizen, move to New Jersey, and run for governor - we'll support you -

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canbravelyme
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R123: You may find it amusing that I would consider applying for status as a refugee of the Canadian Health Care system.

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Robin123
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cbl - if I am reeding you correctly, you would consider a political asylum test? from one to another? lol
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Tincup
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Just got word an update will be headed our way soon. A couple of official loose ends to tie up and then we will hear something.

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

Robin6937593759 asked... "Btw, do I get to call you TCCTTTCCTCTTCCTC?"

[lol]

Heck, I've been called so many names nothing would shock me now! Go for it!

hehehehe

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

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