LymeNet Flash: The Tick-Borne Disease Working Group turns away from Lyme disease.

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»	LymeNet Flash » Questions and Discussion » General Support » The Tick-Borne Disease Working Group turns away from Lyme disease.

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Topic: The Tick-Borne Disease Working Group turns away from Lyme disease.

Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364

posted

The Working Group seems to be no longer working for us.

https://www.lymedisease.org/tbdwg-excludes-lyme-patients/?fbclid=IwAR0JMKC_qIBjxTVo_uvMbLakGIUPbeXsomvA88FwoVBhiKFz0z_mEBqyMLo

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Ann-OH

Posts: 1584 | From Ohio | Registered: Aug 2014 | IP: Logged |

aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960

posted

Very discouraging! Seems to be changing drastically and NOT in the favor of Lyme disease sufferers!

[shake]

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 6138 | From Columbus, GA | Registered: Jul 2004 | IP: Logged |

duncan
LymeNet Contributor
Member # 46242

posted

I'm sure it's just a coincidence that, supposedly, the new IDSA Lyme Guidelines are due any minute...

The good news is maybe Ricketsia deserves a closer look, if I infer correctly from "Bitten".

Not that this iteration of the Working Group necessarily will actually go that way even with the new co-chair's background.

I also cannot help but wonder if the Houston law suit is levying some kind of influence.

Shapiro's appt seems like such an overt gesture to many - but signifying what and why?

I also want to know whose imprimatur cemented his appt.

Posts: 228 | From Unitied States | Registered: Jul 2015 | IP: Logged |

Robin123
Moderator
Member # 9197

posted

This isn't right - this is not the intent of the bill that got passed - needs to be challenged, and how so?

Posts: 13116 | From San Francisco | Registered: May 2006 | IP: Logged |

TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162

posted

quote:
Originally posted by duncan:
The good news is maybe Ricketsia deserves a closer look, if I infer correctly from "Bitten".

I had been thinking this exact same thing, but Duncan beat me to posting this idea first.

Also, I vaguely recall that tick research done here in Texas by TAMU researcher Maaria Esteve-Gassent has found that there is a high rate of rickettsia found in Texas ticks.

Does anyone know whether rickettsia is equally difficult to treat, requiring a multi-antibiotic approach, as that which is being researched for treating Bb infections?

Posts: 4563 | From TX | Registered: Sep 2002 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

That's very very sad.

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--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

duncan
LymeNet Contributor
Member # 46242

posted

I think, like Borrelia, Rickettsia has different species, each manifesting with varying degrees of pathogenicity.

I don't think pathogenicity is a word. Degrees of sickness?

Sorry, I'm having issues with words right now.

Posts: 228 | From Unitied States | Registered: Jul 2015 | IP: Logged |

TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162

posted

Yes, pathogenicity is a word - means degree of infectiveness, I think.

Posts: 4563 | From TX | Registered: Sep 2002 | IP: Logged |

Tincup
Honored Contributor (10K+ posts)
Member # 5829

posted

Yes, it is bad. Really bad.

We need more highly educated & strong patient reps on the working group, for one thing.

Pat Smith, none better to kick butt and help us get what is needed, however, she is fighting the worst of the worst, and it is 20 to 1 in their favor!

This is a good example of why we DON'T encourage government related task forces and state TBD groups (and bills to create them).

The problem is the other side NEVER plays fair and we lose ground, even with the best intentions and efforts.

Don't let them fool you.

IF you are selected to be on a TBD related group it will be because they need you on there to be able to say they played fair and/or report to someone that patients/groups agreed with what was done, even though you didn't.

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

Posts: 20353 | From The Moon | Registered: Jun 2004 | IP: Logged |

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