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» LymeNet Flash » Questions and Discussion » General Support » People's reports on Hope to Heal conference

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Author Topic: People's reports on Hope to Heal conference
Ann-OH
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Here is good info on the Hope to Heal conference which was posted earlier.

I just wanted to be sure everyone got to see it. I split it up so more people could read it.

The dotted lines divide up different people's comments. Thanks to all of you for reporting on the conference. I hope you got to meet each other. Wish I could have been there...

Ann - OH

[quote]

elle
Frequent Contributor
Member # 7721

posted 27 March, 2006 05:01 PM
It was very well attended - 450+ registrations which included 22 physicians in attendance.

Those numbers did not include speakers, volunteers etc as far as I know. . I'm not the expert I wrote it in my notes.

This was a well organized event with really detailed info. The overall introducer, Dr O did a great job on nutrition and hit some areas that I hadn't heard or given thought to.

Dr S blew me away. I will be referring to my notes and trying to understand some of the things that he said for awhile. He was very good, detailed and I could have listened for another several hours. This is the first time I have heard him speak.

Dr J and Dr B presented only as they can. Much of the things that were said I knew or had read but many things were very new. Both are an incredible inspiration. They have such a drive to perform good medicine and to press forward in the advancement of treatment of LD.

Gilchrest's top aid was there and he spoke about what was going on at the local, state and federal levels concerning LD legislation. It was good.

LD, treatment, diagnosis is making such rapid advances, I think a symposium on a monthly basis would render incredibly useful information. This event was really good.

I personally was surprised by the numbers of people that turnout at this location at this time of the morning, especially since it was on the other side of the bridge (less populated side). Definately worthwhile.
..............................................
LYMEOUT
Robi,
They were taping, so I assume there will be a DVD. Dr. S.'s presentation was exciting and so filled with technical detail that getting the DVD or his book "Mold Warriors" are the best ways to get all the information.

He talked of numberous tests that are markers, can't remember which test for what illness, but C4a, C3a and of course, the HLA-DR tests are important. He also said the CD57 is a marker for toxic illness, not just lyme.

He talked of several treatments available - example VIP for depleted MSH. I'm not sure I got this down right.

The legislative update by Tony Caligiuri,chief of staff of Rep. Wayne Gilchrest's office was very informative.

The bill, HR3427, has been assigned to sub-committee on health, headed by Nathan Deal of Georgia. He advised us to contact Congressman Deal's office and urge him to push this legislation to the forefront!

Mr. Caligiuri also confirmed that personal letter is the most effective method of communication, with telephone call coming in second.

He encouraged us to call his office (Gilchrest's) if we were interested in receiving updates.

He also said that they are already working to get action on various components of the bill. They are not waiting for passage!

BTW, he normally doesn't get closely involved with specific issues as Chief of Staff; but this one is an exception - his young daughter is battling lyme!

I wish I could summarize the whole symposium for you, but my head is still spinning from all that information, compounded by a 2+ hour visit with my daughter's doctor yesterday!

Hopefully, VALYMEMOM or Moose can add some clarity to my gibberish!
...............................................
MOOSE
I agree that this Lyme Disease Symposium was very well planned and organized. Luckily, they found me some interpreters so that I could gain information from it just like everyone else, even though the poor interpreters had a difficult time being able to spell out all the medical terminology.

All presentations were very informative in one way or another. Some were rather inspiring. I cried through Dr. C's film of the kids he had treated. It was so heart-wrenching!

As for the presentation by Dr. S, it was very new yet rather hard for me to grasp. I hope to learn more about this in the coming months and will be looking out for his documentation on "Mold Warrior".

Sure do wish there were more details regarding nutrition, not only on names of different sugars or sugar substitutes, but names of specific types of food to eat and not eat!!

Geez, it's hard enough trying to read off the tiny words of Nutritional details on the boxes and packages...and to be able to remember what chemical or mineral is good and what's bad!!

I hope to see more presentations regarding in-depth info. of nutritional food, vitamins, herbs and herbology, as well as medical updates.
..................................................
VALYMEMOM
Boy, my notes from Dr. S.'s presentation don't make any sense to me; I need to read Mold Warriors. They may help someone who can connect the technical info to their own testing.

I wrote down that a high IL4 and IL10 is released in babesiosis.

a symptom of MSH deficiency (which is common in lyme) is frequent urination & static shock.

narrowed capillaries are tied to VEGF compound deficiency.

Dr. B. said that many new strains of bartonella are out there waiting to be discovered. New stuff seems to be bart-like and tularemia-like. He described rifampin as surprisingly gentle.

I expect someone will speak about the federal legislation status at Hope to Heal. Mr. Caligiuri is a real advocate and he urged us to get our friends and family to drop a note asking their representatives to co-sponsor the bill.

There was a time his young daughter was in a wheelchair and now she is walking and has returned to school. Wonderful story!

Thank you to all the organizers and volunteers!
[end quote]

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www.geocities.com/ldbullseye

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www.ldbullseye.com

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OptiMisTick
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[ 25. February 2008, 01:08 AM: Message edited by: OptiMisTick ]

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lymesly
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Thanks OptiMisTick!

I was sitting here wondering when Dr. S spoke...I didn't see him....lol....a different conference.

Posts: 92 | From Shepherdstown, WV | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
Ann-OH
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Whoops! How did I get that so mixed up?

Did anyone go to the Hope to Heal conference? I would have been estatic to go to either one!

Ann - OH

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lymesly
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I went to the Hope to Heal Lyme conference. It was soooo great! I learned so much.

I think it's mentioned in a couple threads, but they are selling DVD's of the conference (ready in June, I believe). I'm going to get one and I went to the conference. : )

Susan

p.s. "They" are the Hopetoheallyme.com people.

Posts: 92 | From Shepherdstown, WV | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
   

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