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Anyone going to the symposium at Chesapeake College in Maryland this Saturday? Would love to say hello face to face.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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lymemomtooo
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I am planning on it..And thanks to the generosity of the Lyme Disease Associaton, it is free to the public.Kudos to Pat and everyone responsible..
I am sure that that area is an epidemic starting to happen so it will be so very helpful..Also the presenters are some of the best in the country..It should be a wonderful event..lymemomtooo
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robi
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I would love to go but I am in Richmond and it is too far to drive alone. Anyone wanna go with?
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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I do wish I could go, but I have other obligations tomorrow.
Bummer.
Please do let us know how it goes!
Pea
-------------------- ~~~~~~~~~~~ I am SO not a doctor, just another lymie trying to sort out this mess, so, everyday I think... Obla di, Obla da... Posts: 552 | From Right here | Registered: Dec 2002
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lymemomtooo
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Well it looked great and seemed very well organized with a greeting committee, etc..Some vendors..Then at 9 am , I got the phone call from my daughters Dr.
I had to come home(100 miles) to get her to the ER..Blood work from yesterday indicated she was going into ketoacidosis..
So please let us know how it went. lymemomtooo
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lymemomtooo
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"So please let us know how it went." I would love to hear about it..I was able to get a report from our support group leader. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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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.
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lymemomtooo
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thanks elle...
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robi
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Will there be a DVD of this event? I was too sick to make the drive.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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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!
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lymemomtooo
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Thanks for the info..I am so disappointed that I could not stay..
My daughter is better but it is a vicious cycle..Tick borne diseases, psych issues, including OCD, and high blood sugars..They seem to feed on one another..
I had prayed that one of the presenters might mention something that could be a breakthrough..So I will be very interested in a tape or DVD. lymemomtooo
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robi
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Thanks for te info Lymetoo ......
what is VIP? I have low MSH. Can't wait for the DVD!!
... treatments available - example VIP for depleted MSH. I'm not sure I got this down right.
lymemomtooo.....hope the kiddo is doing better.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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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.
Posts: 90 | From Maryland | Registered: Jan 2006
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valymemom
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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!
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I wrote it in my notes.
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