And yes, yes, yes... I missed you all very much... I hope you know. I HAVE been VERY
busy on the phone with Lyme calls all month.. and doing the May is Lyme Disease
Awareness Month thing locally, even though I have stayed off the computer totally.
Actually, I think tick talking and assistance to newbies is going to be increasing due to the enormous numbers of ticks out and about this year... ya think? Anyhow...

I just got home from the Hope to Heal Lyme conference in Reston, VA. I attempted to
cancel my reservations at the last minute because I was feeling so stinking bad. The
organizers were VERY accommodating to my needs and left the space open for me if I
chose to try and come.. which I am grateful for. I mustered up a thimble full of energy
and forced myself to go.. cause I REALLY wanted to. (I recently relapsed, started back on meds, was herxing, caught a nasty case of Bronchitis something or other that was bad enough to send the person I caught it from to the hospital for treatment, and felt pretty much like death warmed over for the past several weeks.. so I was far from my normal self... for sure.)

Now... I gotta give three cheers to the folks who put this Hope to Heal Lyme Conference together. They were 100 percent.. it was 100 percent... and it showed. There were approximately 425 people attending. It was a BEAUTIFUL conference facility. It was spacious, had lots of comfortable tables to sit at.. and I never felt cramped or smothered in the crowd. The folks in charge even provided a very nice and close by ``resting room'' for anyone who needed to lay down or take a break. Good planning!!!

The event was extremely well organized and the scheduling of programs was right on
target and had the cream of the crop addressing the attendees. We were greeted by very kind and friendly folks (Charlotte, Charlotte, and Emily.. and others) who went out of their way to be accommodating. And you know me.... I tested them a bit when I went up to Emily on the afternoon of the last day, as she was finally having a very late lunch break. I told her I was having trouble with the toilet in my room on the 12th floor.. and the water kept running after it was flushed. I asked if she would fix it for me. Lovely Emily jumped up from the table... ignoring her lunch as she grabbed a napkin to wipe her mouth... and started to go get someone who could fix it for me. Of course I stopped her before she took too many steps. My point..

They intended to please and be sure EVERYONE was taken care of .. no matter how crazy the request... and with over 400 Lyme folks there.. that WAS a chore.

The speakers were well chosen and experts in their field. I spoke to MANY people
attending and NO ONE expressed any negative comments on the topics or presentations..
or actually anything for that matter. Well... I did hear someone say they wished there was a ``vegetarian'' lunch choice available as I walked by the buffet table.. and a few minutes later.. a big bowl of salad had been served up as an alternate to the chicken, turkey, and roast beef
wraps. GREAT service.. no doubt.

Of course there were our favorite doctors there, the dedicated ones who we owe our lives to.. Dr. B and Dr. REE- Laxin'.. and both Dr. Boch's.. and then there were some new speakers (not new to Lyme.. just new to speaking about it with ME in the room) who also shared some great stuff. Actually, I have heard Dr. B speak many times before.. always a pleasure and always top notch.. but I believe he out did himself this go around.

Dr. Steven Boch started off the programs with an EXCELLENT overview and
introduction that impressed me very much. Not ONE speaker would be rated below a
100 percent in my book.. and having that many 100 percents is unusual all at one
gathering. There is sooooo much to say about Lyme, as you all know.. and how he fit it all so nicely and neatly into a short span is beyond me. Good job!

I was a lucky one to be able to spend a good amount of time with Dr. REE- laxin'
(Raxlen) and his sweet wife in the lobby one evening... after his informative talk about
the neuro/psych Lyme problems. I found him to be open, kind, and very dedicated and
concerned about the Lyme situation and his patients. He was nice ``folk''.. not at all
stuffy or stand off-ish and had a good sense of humor. He and his wife were the kind of
people you would really like.... if you didn't already adore them for all the Lyme work they do. I even got a good soft crab recipe from his wife while chatting.. which I am anxious to try.

But.. the absolute highlight of my trip was to FINALLY meet the man who won my heart
years ago when he took the sick little children that no one else would or could help.. and gave them back their smiles. I told MANY people the ONLY reason I was going to the conference was to meet Dr. Charles Ray Jones in person.. and I was finally blessed to do so.

While standing there in awe admiring this man who I have so much respect for... I had
this crazy urge to reach over and unbutton his top shirt button and take a peek to see if there was a Superman shirt underneath his street clothes.. but.. if an effort to not totally freak him out... I resisted. I couldn't have been more excited to meet anyone else and tell them how wonderful I think they are for doing all they do to help so many of our children. I know I have send possibly 2,000 kids his way.. and there has never been a child he turned away. Gotta love him.

He took the time to sign my little autograph book and chat. And then he smiled at me. I
will never forget that smile. Bless his heart... he made MY dream come true and does it every day as he opens his doors to more and more children and gives them back their
lives.

The others speakers... I saw a few but missed some due to feeling poorly and being
involved elsewhere. Dr. Singleton.. our Maryland doctor.. what can I say. I knew he was good... but I didn't know just HOW good. He touched on topics no one has expanded on before.. and I actually learned some things from him and found his talk to be uplifting and encouraging... as well as informative. I know of him through his patients eyes as we work together behind the scenes.. but seeing him in action was a good thing. He is well rounded in his approach and has a very kind heart.

I think we are very lucky indeed to have doctors who are just nice people, who work
VERY hard... and put up with all of our ``weird'' goings on.

I hope those who were there will expand on the other doctors talks and give their
impressions.

But.. I can hear you now..

"ENOUGH of the chit chat, dipstick...

What did they SAY, TINCUP?''

Stay tuned.. and also note..

The Hope to Heal Lyme folks will be offering recordings... video/VCR things/DVD???...
soon. All programs were recorded professionally.. and I can highly recommend you or your local support group get a copy when they become available. They will be sending me info on how and where to get copies.. and details.. which I will share with everyone as soon as I get it. I will give a short overview later.. yes.. as soon as I can... of topics and things I highlighted... but due to my health and since I knew there would be recordings
available.... I didn't take many notes.

Once more.. GREAT JOB, HOPE TO HEAL LYME folks! Let's do it again... soon!!!

------------------
If you get the choice to sit it out or dance...

It was such a great weekend! Now I must go crash for the next few weeks. I'll be in and out on here but probably not very active.

Peace and healing,
Annie

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

Lyme Out Retreat Website

Lyme Disease Awareness Products

Click here to join Lyme Pals.

Good to see you made it home. What a trip! Please do rest up. It was wonderful to see you again.. as always. You make me smile.

I was so pleased to meet so many new folks.. or folks I hadn't met before... and to see other old friends. To the regular posters.. and the lurkers out there who read Lyme Net.. and who kindly spoke to me this past weekend and made me smile.. thank you! It was an honor to meet with you all... and my only regrets would be it didn't happen sooner.. and we didn't have more time to spend together.

Mary... nice to meet you finally. And I had the pleasure to meet Robi also. Hope you will be doing better soon!

Another note.

The folks who were there from California interviewing for the film documentrary were wonderful to see and work with. Their production of a movie to help Lyme patients is admirable.... and a big project.

Kris Kraft.. always a pleasure to see.. worked her "transom" off the entire time.

I do hope anyone who can support the production will do so. And thanks to all who were brave enough to tell their story for the cameras.

``````````````````````````````````
ALSLyme.. if you are reading this.. please get in touch with me. You gave me a good idea.. but I didn't see you Sunday to let you know.

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

To the folks who flew all the way from England to come to the conference (first time in America)... and who frequent EuroLyme... it was so good to meet you both. Let's continue to work together to make a difference. Please come to Lyme Net and visit us often... and let me know about the recent test results. I do care. Thanks for the book and the England coins.. and for taking me to a bar for my first time in years! Just wished I could have shared that Guiness dark beer with you instead of drooling over it as you tried to drink it!!

------------------
If you get the choice to sit it out or dance...

Yes.. he is a dear dear person. I am happy to see he helped your girls too.

Smiles to each of you.....lightfoot

------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]

I know of Dr Charles Ray, and he is certainly a wonderful man to help all these children. You are so luck to have met him.

Thanks for posting the info!

I agree with everything you've written. This conference was definitely top notch!!

My one disappointment was when the second Dr. Bock (Kenneth) had to cut his presentation short because of running behind schedule. I feel he had alot of valuable information, and did not have enough time to share all he had prepared.

It was so incredible to have so many of our top notch LLMDs under one roof, and all giving us so much of themselves. I am grateful to the two Charlottes who put this together for us. The conference met and exceeded all my expectations.

And our dear sweet Dr. Jones...I know making this trip was hard on him, and yet, as always, he gave to us all so unselfishly, and hung in there to the very end of the conference. I went over to say hello to him that first morning, got a hug and a kiss, and then he insisted on hearing about how all my kids (four of my five are his patients) were doing. I said to him, it is not fair to get a consultation from you here, I will just call next week, but no, he tells me I know your kids, I don't need to see their charts to talk about them, please tell me now. So we put together a new abx regimen for my youngest son, who is currently suffering a relapse, sitting right there in Grand Ballroom D.

I wasn't looking for a Superman uniform on Dr. Jones; I was looking for a halo!!

Annie was sitting me near and I did recognize her from photos on her web page. Truly amazing kid! Well, not a kid really ... just that I am old enough to be her mother.

I feel fortunate to have met both of you. Would have been nice to have more time to talk to each other.

I wish there would have been a lymenet meeting place so I could have met others from this great network. With the success of this conference I am sure there will be other opportunities.

Still hard to put it all in words.....besides Tincup writes way better than I do.

3 things I remeber hearing.....

1-No processed Sugar ... none ,nada, zero, zip

2-Balance your immune system

3-Believe in your recovery

Trout

Thanks for the kind words and welcome backs. Shucks.. you guys are the greatest.

I was gonna hit the hay early tonight.. but with my strange "VISITOR" causing me a bit of unsettledness (yes it is SO a word, I just made it up)... I am unable to hit the waterbed right now for wondering if the first snake had a "partner" or not. See this post if confused.

http://flash.lymenet.org/ubb/Forum3/HTML/012696.html

But I am about to crash.. so snake, or not.. I must be brave and go for it.

I plan to write up some highlights and share them with you .. hopefully tomorrow after I get some rest.

As for Dr. G that dunkirk asked about... I personally did not see him.. and he is not listed on the schedule. However.. there were a few changes.. and some additions.. and some workshops that were presented during the times when other speakers were presenting their programs .. so I can not say for sure he was not there. Maybe others know about that??

It is good to be back. You all warm my heart and make me smile.. and I sure missed you!

------------------
If you get the choice to sit it out or dance...

Dr. G. was there and spoke with/after Dr. S. He spoke during a session when there were two or three others speaking on different topics in different rooms. Both he and Dr. S. came across as caring, literate physicians.

So glad you made it home, so sorry for what was there waiting for you.

Can't thank you enough for all your help on Sunday - you are truly amazing. Even as bad as you felt you still looked out for me (and i'm sure others), thank you.

Aaron and Katie were very happy to meet you, I'm glad you also could meet them. I wished I was more 'with it' and we'd had more time to talk.

I enjoyed what I remember about the conference myself. To whomever asked about Dr. G. - he was also on the panel with all the other docs for the Q&A - personally I love him! My kids did too.

It was a wonderful event. Please let us know if you hear about a DVD/CD or something, as my I know I could use hearing what was said again.

Thanks again TC!!!

quote:

---

Originally posted by Tincup:
Yes... I took a much needed break. I was going to take a one week break while out of state... which sort of turned into a two week break. Then I decided I MUST get caught up on some things before I turned on the computer again or I would never come close to being ``organized'' in this life time.

And yes, yes, yes... I missed you all very much... I hope you know. I HAVE been VERY
busy on the phone with Lyme calls all month.. and doing the May is Lyme Disease
Awareness Month thing locally, even though I have stayed off the computer totally.
Actually, I think tick talking and assistance to newbies is going to be increasing due to the enormous numbers of ticks out and about this year... ya think? Anyhow...

I just got home from the Hope to Heal Lyme conference in Reston, VA. I attempted to
cancel my reservations at the last minute because I was feeling so stinking bad. The
organizers were VERY accommodating to my needs and left the space open for me if I
chose to try and come.. which I am grateful for. I mustered up a thimble full of energy
and forced myself to go.. cause I REALLY wanted to. (I recently relapsed, started back on meds, was herxing, caught a nasty case of Bronchitis something or other that was bad enough to send the person I caught it from to the hospital for treatment, and felt pretty much like death warmed over for the past several weeks.. so I was far from my normal self... for sure.)

Now... I gotta give three cheers to the folks who put this Hope to Heal Lyme Conference together. They were 100 percent.. it was 100 percent... and it showed. There were approximately 425 people attending. It was a BEAUTIFUL conference facility. It was spacious, had lots of comfortable tables to sit at.. and I never felt cramped or smothered in the crowd. The folks in charge even provided a very nice and close by ``resting room'' for anyone who needed to lay down or take a break. Good planning!!!

The event was extremely well organized and the scheduling of programs was right on
target and had the cream of the crop addressing the attendees. We were greeted by very kind and friendly folks (Charlotte, Charlotte, and Emily.. and others) who went out of their way to be accommodating. And you know me.... I tested them a bit when I went up to Emily on the afternoon of the last day, as she was finally having a very late lunch break. I told her I was having trouble with the toilet in my room on the 12th floor.. and the water kept running after it was flushed. I asked if she would fix it for me. Lovely Emily jumped up from the table... ignoring her lunch as she grabbed a napkin to wipe her mouth... and started to go get someone who could fix it for me. Of course I stopped her before she took too many steps. My point..

They intended to please and be sure EVERYONE was taken care of .. no matter how crazy the request... and with over 400 Lyme folks there.. that WAS a chore.

The speakers were well chosen and experts in their field. I spoke to MANY people
attending and NO ONE expressed any negative comments on the topics or presentations..
or actually anything for that matter. Well... I did hear someone say they wished there was a ``vegetarian'' lunch choice available as I walked by the buffet table.. and a few minutes later.. a big bowl of salad had been served up as an alternate to the chicken, turkey, and roast beef
wraps. GREAT service.. no doubt.

Of course there were our favorite doctors there, the dedicated ones who we owe our lives to.. Dr. B and Dr. REE- Laxin'.. and both Dr. Boch's.. and then there were some new speakers (not new to Lyme.. just new to speaking about it with ME in the room) who also shared some great stuff. Actually, I have heard Dr. B speak many times before.. always a pleasure and always top notch.. but I believe he out did himself this go around.

Dr. Steven Boch started off the programs with an EXCELLENT overview and
introduction that impressed me very much. Not ONE speaker would be rated below a
100 percent in my book.. and having that many 100 percents is unusual all at one
gathering. There is sooooo much to say about Lyme, as you all know.. and how he fit it all so nicely and neatly into a short span is beyond me. Good job!

I was a lucky one to be able to spend a good amount of time with Dr. REE- laxin'
(Raxlen) and his sweet wife in the lobby one evening... after his informative talk about
the neuro/psych Lyme problems. I found him to be open, kind, and very dedicated and
concerned about the Lyme situation and his patients. He was nice ``folk''.. not at all
stuffy or stand off-ish and had a good sense of humor. He and his wife were the kind of
people you would really like.... if you didn't already adore them for all the Lyme work they do. I even got a good soft crab recipe from his wife while chatting.. which I am anxious to try.

But.. the absolute highlight of my trip was to FINALLY meet the man who won my heart
years ago when he took the sick little children that no one else would or could help.. and gave them back their smiles. I told MANY people the ONLY reason I was going to the conference was to meet Dr. Charles Ray Jones in person.. and I was finally blessed to do so.

While standing there in awe admiring this man who I have so much respect for... I had
this crazy urge to reach over and unbutton his top shirt button and take a peek to see if there was a Superman shirt underneath his street clothes.. but.. if an effort to not totally freak him out... I resisted. I couldn't have been more excited to meet anyone else and tell them how wonderful I think they are for doing all they do to help so many of our children. I know I have send possibly 2,000 kids his way.. and there has never been a child he turned away. Gotta love him.

He took the time to sign my little autograph book and chat. And then he smiled at me. I
will never forget that smile. Bless his heart... he made MY dream come true and does it every day as he opens his doors to more and more children and gives them back their
lives.

The others speakers... I saw a few but missed some due to feeling poorly and being
involved elsewhere. Dr. Singleton.. our Maryland doctor.. what can I say. I knew he was good... but I didn't know just HOW good. He touched on topics no one has expanded on before.. and I actually learned some things from him and found his talk to be uplifting and encouraging... as well as informative. I know of him through his patients eyes as we work together behind the scenes.. but seeing him in action was a good thing. He is well rounded in his approach and has a very kind heart.

I think we are very lucky indeed to have doctors who are just nice people, who work
VERY hard... and put up with all of our ``weird'' goings on.

I hope those who were there will expand on the other doctors talks and give their
impressions.

But.. I can hear you now..

"ENOUGH of the chit chat, dipstick...

What did they SAY, TINCUP?''

Stay tuned.. and also note..

The Hope to Heal Lyme folks will be offering recordings... video/VCR things/DVD???...
soon. All programs were recorded professionally.. and I can highly recommend you or your local support group get a copy when they become available. They will be sending me info on how and where to get copies.. and details.. which I will share with everyone as soon as I get it. I will give a short overview later.. yes.. as soon as I can... of topics and things I highlighted... but due to my health and since I knew there would be recordings
available.... I didn't take many notes.

Once more.. GREAT JOB, HOPE TO HEAL LYME folks! Let's do it again... soon!!!

---

I am sorry the info below will not be nicely organized or easy to follow. I am not well enough (or smart enough) to rewrite the conference information in a ledgible form.. so please get what you can from the following.

I highly recommend the tapes or dvd things when they become available. I will be getting them because my comprehension skills were very poor... and there was some really good stuff I want to review in the comfort of my own home... and at my own speed.

Scattered notes.. not in any order.. but SOME of the things I found interesting or wanted to share:

After being exposed to Lyme.. the PCR is is good to use in the first two weeks if you must do a test. After that.. much harder to get a positive. But it would be a better choice of tests at that time.. especially compared to the ELISA.

Workup's for chronic Lyme should include a coag profile... which tests for fibrogen on the arteries. (My note- fibrogen is part of what your body uses to help clot the blood)

CD 57.. if low.. is a good marker for chronic Lyme.

Endocrine tests for hormones very important.

Bartonella can cause problems in the white blood cells, bone marrow, and GI tract. BIG problems.

Testing gall bladders that were removed for Rocephin problems showed 4 out of 5 were positive for Babesiosis.

Spelling?? IV Primaxin (?) can cause seisures or make them worse.

For severe neuro problems Dr. Kane may be of help. Haverfordwellness.com

`````````````````````````````````````````````
A LLMD expressed his pleasure at the results his patients were seeing with ONDAMED. The folks who brought the machines to the conference were doing free demonstrations all day and night for those with Lyme. The comments I have heard so far from the patients were positive (more to come). The "principle" sounds logical to me and it is something I would like to check into further. I would like to have time to read more so I can translate the information to you. I still haven't unpacked.. so it will be a bit. For more info.. see this post. Hopefully they will explain it for you.

http://flash.lymenet.org/ubb/Forum1/HTML/034317.html

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

Important to take 1-6 grams a day of Omega 3 (EPA/DHA). Use ONLY the ultra pure kind that has NO mercury.

Omega 6, Evening Primrose Oil or Borage Oil, is important.

Omega 9 can be found in olive oil.

Marnie- This Bud's for YOU!- Magnesium is helpful, especially with chronic acidosis.

More to come.

quote:

---

Originally posted by robi:
I wish there would have been a lymenet meeting place so I could have met others from this great network. With the success of this conference I am sure there will be other opportunities.

---

I have an idea for future conferences where Lymenetters (LOL, I can make up words, too, Tincup! ) will be there. Maybe those who could make it should come a day early or stay a day longer and set up a lunch or dinner together. Or with this conference it wouldn't have even needed to be an extra thing since dinner wasn't included. Just an informal thing where Lymenetters who were up to it could meet in the lobby of the hotel (wherever it might be) at a designated time (with time left for resting between activities and going out). Someone could have a "LYMENET" sign to hold for others to know who to meet there. Then just a laid back dinner somewhere close by. Just a thought and a good way for us to get to meet everyone.

I'm bummed that I didn't get to meet more people from here. And especially bummed that I didn't get to meet you, Lymesux/Aaronkatie since I think your kids are just great and was one of their green santa's this past Christmas. I guess we'll just all have to make it next time!

Or, here's another idea I'll just throw out there. Since the D.C. area seems to be somewhat central for people to get to and there are quite a few Lymenetters from that area, what about a whole get together just for Lymenetters? We could find an inexpensive hotel/motel to all stay in and go out to see the sites of D.C. or stay in (depending on energy) and talk. Just a thought. These wheels don't seem to stop turning, no matter how tired I may be (I'm in bed right now with my laptop resting on my stomach). Let me know what you all think.

--Annie

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

Lyme Out Retreat Website

Lyme Disease Awareness Products

Click here to join Lyme Pals.

http://flash.lymenet.org/ubb/Forum1/HTML/034333.html

------------------
If you get the choice to sit it out or dance...

For me I am in such bad shape that just going to the conference at all was almost impossible (thanks to some people in particular though). So, I would not have been up to the whole weekend and any extra sensory stuff (meeting people). it is too bad though that so many of us were in the same place and did not get to meet.

robi

Yes, I was one of the ones that weirded Annie out - It was good to meet you Annie...

TC, yes buddy; we missed you.

You didn't really weird me out that much. It's just a strange thing to be recognized by people I don't know! I guess I got a taste of what it's like to be famous!

--Annie

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

Lyme Out Retreat Website

Lyme Disease Awareness Products

Click here to join Lyme Pals.