Meeting Notes 5/10/18

May 10, 2018, TBDWG Meeting (on-line)

May 10, 2018

The fourth meeting of the Tick-borne Disease Working Group will be from 8:30am to 6:45pm (Eastern). The meeting will focus on the reports describing the work of the six subcommittees of the Working Group. This is an on-line meeting that is open to the public.

My Notes

I am listening to the second 1/2 of the May 10, 2018 TBD Working Group Meeting as I write these notes. (Was sleeping during the morning session.)

Listened to the above blah, blah, blah report presented live. Disappointed that there was nothing new and it sounded as if it was striaght out of the IDSA/CDC's mouths. We need strong patient advocacy here. Back bones, someone to say it like it is!

Now members are addressing the report from the Testing & Diagnostics Subcommittee.

The questions and comments are being made by other TBD WG members.

WOAH! Pat Smith (President of National Lyme Disease Association) is Kicking BIG Government Butt Right Now At the TBD Working Group Meeting! It's Wonderful!

No one could have done this better! Actually got emails from other advocates who are watching live that were commenting on her excellent performance.

She is not (never has been) intimadated by the CDC/IDSA and she is making very strong points, kicking the right people and bringing up problems we have had, and she provides working solutions. Lots of power!

And her comments were not scripted like the reports were. These facts and figures and the science is coming off the top of her head. She is excellent presenting a program or addressing these issues because she knows it so well.

The meeting is being recorded and hopefully will be online at some point. I am not able to "see" the webinar, only to hear what is going on.

YES!!!!!!!

Now she is saying we need NEW people running the TBD program!!!! And saying they need to be running this problem past Congress immediately (by next weeks meeting).

GO PAT GO!!!

Next Report

Link- https://www.hhs.gov/ash/advisory-committees/tickbornedisease/meetings/2018-05-10/index.html

Scott Cooper

For a newcomer he did surprizing well.

Need more data. Need more emphasis on mental health issues with Lyme.

MY NOTE- (It was climbing to 92 degrees here and I had to get more fans plugged in, so I listened, but didn't take many notes here.)

Paula Jackson Jones

Maine has law about giving patients a note that tests may be wrong. It is not happening!

Laws stemming from bills such as the lab test notice are not being enforced.

Spoke about needing more laws (example Maryland) that give patients access to their lab tests and records and the fact they need to cover Lyme disease in that ruling. More info here...

https://www.federalregister.gov/documents/2014/02/06/2014-02280/clia-program-and-hipaa-privacy-rule-patients-access-to-test-reports

ALL language that sucks needs to be changed, like Post Treatment Lyme Syndrome needs to be changed back to its REAL language- CHRONIC LYME DISEASE as it was originally on CDC and other sites in the 1990's.

Pat Smith again comes through in the Q & A and gives the group lots of great info to act on!

Break- Return at 3:15 PM.

Have volume on full blast and can't hear presenter!!!

Dixon speaking... Vaccine being worked on now in USA and Europe that "MIGHT BE REINTRODUCED"

States other vaccine was "successful".

Phase one is done. Blah blah blah...

Borreliella burgdorferi is the new name for Bb. ?????

EDITED- Looked it up. This name change he speaks of, for which there are a number of responses to NOT change it on the record, is from a 2014 study... "we are proposing a division of the genus Borrelia into two separate genera: an emended genus Borrelia, containing the causative agents of relapsing fever and a novel genus, Borreliella gen. nov., containing the causative agents of Lyme disease." Source

Can't base results on the EM disappearing, because it disappears anyway. << Finally, a comment I can get behind, but he was strained when saying it and NOT wanting to admit it.

CHILDREN BE AWARE! They can't seem to NOT want to involve children in the need for new trials and recommendations for the vaccines. Also pushing for elderly getting vaccine.

Pat again- Says to vaccine committee- no one on that group is a patient or advocate- they need to be in the discussion. She looked for references for what they reported, then said they had none! Brought up damages to patients that were happening. Don't know if it was studied enough to be sure safe and extra isotopes would be good. Blows away the "party line". Adverse events couldn't be reported.

Talks about concern over Maryland employees working outdoors being forced to get vaccines in early days (she didn't say who.)

She didn't see ALL stake holders being brought in to vaccine group. Wants more documentation of what they are saying- need to provide references.

Response To Pat... Leanne (<?) did not decent on opinion and was the patient rep on the committee. They want to look ahead rather than back.

Pat again- FDA has fast-tracked vaccine, not good. Let's put all the cards out on the table.

WG Member again- He doesn't agree with Pat that science wasn't addressed on previous vaccine. How do we bring in different groups that WANT to help us pass off this new vaccine as good and safe (my paraphrasing). In other words- we can't find anyone that agrees with us... nobody likes us. Boo hoo!

Wendy Adams- they went thru science report. 60% or greater in levels of fatigue in studies on Lyme treatment. Good points. Vaccine group person came back and argued with her.

Dr. Richard Horowitz- Intro- Very Good

Allen Richards- Navy, DOD

Focused on Diagnoses of Other TBDs. Not to address- education, health care costs, etc. Not enough time.

Robert Smith (vaccine committee)- Doesn't think current tests for coinfections are bad. <<< ???

See screen shots below.

Q & A- Someone nit picking (Robert Smith again?- vaccine committee) about Bartonella not being proven to be tick transmitted. Dr. Horowitz comes back with reasonable & strong response.

Someone saying 1 dose doxy has three studies supporting it. Butt head.

Ben Beard (CDC) jumps in- study in progress at Hold the Mayo Clinic and Vanderbuilt. Samples tested- one of the "discoveries" was B. mayoblahblah. Several papers coming out of that ongoing study soon. Just what we DON'T need, more Hold the Mayo Clinic studies. Of course he tosses in there that the CDC is involved- show off.

Please excuse spelling of names- I have no list to go by.

Theresa Denham- Excellent talk about reporting concerns (especially in her state of Oregon)- well documented throughout. Easy to understand- even a doctor could understand it. ~smile~ Mentioned a little from experience too.

Alison Corianna- Read report. Nitty picking on unimportant points. Sounds like a poor 'war cry' report (fight back against enemies, etc.) in parts. Ok, here we go... Attacks on LDA and LymeDisease.org- ran overtime and was cut off. Thankfully.

Nicole Flet (? sp.)- trouble getting her unmuted. Come back to you.

Jill Aurebach (NY)- Ticks spreading like wildfire. Insists it is the ticks that are the problem and it is being ignored. Animal vaccine won't work. ? Only tick research will fix the problems- and the horrors. Reduce numbers, block transmission. Concerned Lyme vaccine will allow us to relax and won't fix the problem. Good basic info.

Wikie (maybe Vicki?) Parker?- Come back to you.

Enid Haller- She didn't leave the group on purpose (personal problem that needs to be addressed elsewhere). She talks about wanting transparency, blah blah blah. Wants complete history of Lyme- thinks it is important. Lyme leadership (LDA, etc.) needs to earn back patient's trust. Wants notes from meetings published. Wants open Q & A- wants all info transcribed and published. Transparancy, blah blah. Coming to truth.... Afraid of Dearbourne #2.

Lonnie Marcum- PT by training, mother of patient. Negative test. Norm in California. Medical people more willing to condem than diagnose. CA does have Lyme, the further from Lyme in location, the worse it is for other states. Good presentation.

??? Alpha Gal group. Her families lives are completely changed. Reconsider all medical care. South Africa patient brought to USA- needed help- her doc was fired(?). Pizza being cooked in school causes problems- due to airborne cheese and particles. Those with this condition don't get off at 5 PM. Personal experience. Hard to live with. Appreciates any help they can get. Nice presentation.

Lora Hovened- Two Cures. Some Osp A vaccine info presented. Here we go again... Critizing Pat Smith for not running to Justice Department with info on LD problems. Critizing Alcott and others too. Non-profits have been pumping them for money. ? One reason at this point. Lack of govt. actions. Got really loud, hateful and nasty at the end- as is what happens online with people in this small "group".

Terry Snitzel- online support. Patients turn to unknown methods of healing because they need hope. Unable to work. Zika very quickly handled. Lyme deserves the same. Babies need our help. Patient experience. She was told the same old same old mosty patients hear- that she needs mental help not treatment and it's all in head. Ticks unchecked and multiplying. Need testing, research. We are Lyme warriors but we need a leader. We are in NJ.

Ira Aurebach- NY- Thanks all for good job. Very encouraged that everyone is coming together. Talks about the terrible study- Nadelman. ??? Yet CDC says 2 dose doxy works. Stop misleading people with what doesn't work. Only one so far who didn't hit the 15 second buzzer (short talk).

? Mr. Sweeny- father in Atlanta Ga area. Family spent tens of thousands on treatment. Travel, treatment costs. Daughters so sick due to late diagnosis. Spoke on IgG and IgM and how daughter was left undiagnosed. Mentioned highpoints he picked up in talk today and reviewed them. Thanked subcommittees. Passionate and sincere.

Nicole ?- The world is beginning to notice. Great imitator. Lymph nodes and other organs. Toxic proteins. 1/2 cases don't recover after treatment. Fungal blah blah blah. "No spirochetes are necessary to give us chronic Lyme." Transparancy blah blah blah. Lincoln- My dream... Need new eyes. Fighting mode.

Vicki/Nicki Parker?- still no response. Hit *0 to get online... still no response.

Alcott- funny that he had slides to present that said he feels they made progress today. Come on! Next meeting is in DC and is live streamed too.

NOTE- I took about 57 screen shots while taking these notes. Will add some of them here when able.

4 hours, 31 minutes on call.

Lucy Barnes

AfterTheBite@gmail.com