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» LymeNet Flash » Questions and Discussion » Medical Questions » Reports from LDA and ILADS Conferences 2009 (Page 1)

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Author Topic: Reports from LDA and ILADS Conferences 2009
Tincup
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If anyone has any comments about the Conferences, please share them here.

I don't know of anyone who isn't worn out (a lot, like me, or a little) after 5 days of being in this beautiful place.

It is HUGE! Beyond HUGE!

Take a look at the picture of it and imagine trying to walk around all over the place to the different conference rooms.

http://www.gaylordhotels.com/gaylord-national/?source=www.gaylordnational.com

My brain won't be in gear for a while to be able to relay any scientific stuff.. and I don't have much "new" to report....

But I am sharing below just some fun, off-the-top of my worn out head comments.

Bell Boys looked great.

EVERYONE working for the resort was friendly, kind and helpful.

Turkey sandwich- uggggg- $9.00

The place was immaculate. You couldn't find a spec of dirt anywhere if you tried.

Beautiful plants and trees indoors and out. Lovely landscaping everywhere!

While sitting out front Sunday morning, overlooking the Potomac River with the Nation's Capital in the back ground and the US flag flying high in the sky....

And humming the National Anthem to myself after saying some morning prayers....

An eagle flew by and sailed right over top of the flag.

That was absolutely astounding and totally AMAZING!

Most impressive to me- Eva Sappi and her (CT) students research... and their 5 newly completed studies- ready to be published as we speak.

Highlights of their presentation.... off the top of my head...

1. Doxy does not kill all of the Lyme. They tried for three weeks to kill it and it didn't work. No antibiotic alone or in combo with another was shown to kill all the spirochetes.

2. Spirochetes went into a cyst form to protect themselves after getting Doxy for just three days.

3. Doxy and Tini (combo) had the best chance at reducing numbers of keets in the study of various antibiotics.

4. Pulsing large doses of antibiotics (72 hour intervals) may be more effective in kicking big keet butts. Need more studies here.

5. Need more funding for studies. GOOD studies like these.

The CT scientific group, for example, needs a microscope that costs about $80,000.00 to continue their studies to "see" keets and what they are doing in the tissue.. and what can be done to kill them.

6. Bladder, sinuses, joints- keets like them a lot.

7. Bio-films are a HUGE reason why we are still sick.

8. Genetic markers (rise and fall) can be used to determine keet infection.

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

Nap time!

[Big Grin]

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

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bettyg
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thx for the brief update, and looking forward to more notes from those attending; get some much deserved sleep attendees! [Smile] hugs

clicked on link; huge; no humongous, and all those windows to wash; great 4-5 photos they showed tc.

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Tincup
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BTW-

Docs from Canada, Europe, etc. came to learn. Many first timers from the US and elsewhere.

About 270 plus at LDA Conference on Friday. About 290 plus at ILADS on Saturday, less on Sunday. These are MY estimates.

Dr. L... lots of fun listening to him and the band play in the hotel atrium on Friday evening. Great music!

[Big Grin]

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

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Pinelady
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More! More! [bow]

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Abxnomore
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Hey TC!

I stopped at "Bell Boys looked great."

Can you elaborate......... [Big Grin]

Look forwarding to more reporting.

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JamesNYC
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ABX!!!!!

[tsk]

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JamesNYC
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TC,

Some good stuff. I l can't wait to read your more detailed report. Thank you very much!

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mojo
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I was there for the ILADs part only and had to leave Sat night. It was a great conference and I agree the Gaylord was very very nice.

I am very sick today and need a few days to recover - plus I have Dr. appts all week and no time to 'chill'

I haven't been through the CD they gave us but I'm looking forward to having the time and a brain to review it.

I will publish my comments when I can - learned quite a bit just can't spit it back out yet.

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Pinelady
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OK I see how it is. What happens in DC stays in DC?

You see if I buy you Ice Cream next year. Humf.

And I was going to include the cone. [Roll Eyes]

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Amelia
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Thanks for the updates. Any word on what to do

about Biofilms? I found the Diflucan and Lyme

research from Germany very interesting.

Should we all be adding Diflucan or Nystatin daily?

Might be the wrong place to ask this but I thought

it is a good question-


Thank you!

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bettyg
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tincup, i posted your direct link here on 2 posts in general so we can hopefully get EVERYONE'S REPLIES here in ONE spot for easy reading. [Smile]
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Tincup
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Pine said...

"OK I see how it is. What happens in DC stays in DC?"

You got it!

[lol]

Actually... I have pictures! That little camera came in handy!

[lol]

I am still not recovered... but as I come up with something I will share it.

I am waiting to unpack and get all the handouts and "stuff" I collected. LOTS of papers to go through and digest.

Also am having information emailed to me about certain things... so please don't wait around for me to come up with much for a while.

I attended one of the sessions talking about the new ILADS Guidelines that are coming out soon.

Very good presentation by Lorraine Johnson of CALDA.

The Guidelines format will be different and more "useable" stuff for doctors will be included.

The references are many... the science supports all that will be in there... and it sounds VERY good for us.

I can't go through the many points individually, but suffice it to say I am very pleased with what they are planning.

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

A session on pregnancy and Lyme was presented. Good info and much support for gestational Lyme.

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

A lot on neuro Lyme was presented also. Many articles describe it. Details to follow... hoping others chime in here too.

[Big Grin]

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

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Tincup
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This session...

C. Ben Beard, PhD- Director, Division of Vector-Borne Infectious Disease, CDC- ``Lyme Disease in the United States''

Personally, I don't trust him and have witnessed where one thing is said to ducks behind the scenes ... and another to patients and the public. NOT cool.

I skipped his presentation ... and feel I was the better for it.

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

Sadly I missed this presentation...

Dr. Ed Masters Memorial Lecture
Kerry Clark, PhD

Professor of Epidemiology and Environmental Health
University of North Florida
``Southern Tick-Borne Infections''

I heard it was good but it did not include a lot about Babesia.

In Dr. Clarks defense, he didn't talk about the kitchen sink either... but that shouldn't detract from his basic talk.

His papers are very exciting and his work can be found online through a search.

VERY pleased to have him doing this work... and I hope he continues to prove their is Lyme and much more in the south.

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

And yes, there are vaccines being talked about and in the works. Unfortunately.

[Eek!]

I sure wish the research funding would be spent on more worthwhile projects.

ENOUGH with the vaccines already!

Do watch for Lyme groups to possibly cozy up to the promoters and support their vaccine efforts. It has happened in the past and word is the promotors are trying to make nice with a group in the community again and are dangling $$ as an incentive.

I DO hope (although there is talk of it) there isn't a repeat of the LymeRix vaccine disaster where a Lyme group decided to take money and supported the vaccine ... and folks were hurt from the vaccine.

In their defense, the Lyme group did later speak out against it ... but it made the community look bad, had negative effects on innocent people... and caused the group's credibility to be greatly diminished.

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

Do note- there were approximately 10 hours of presentations just on the first day alone. It is difficult, if not impossible to relate all that went on at the LDA and ILADS conferences.

There were exhibitors, handouts, booths, and break out sessions. We were provided CD's and literature too.

A big part of the Conferences deal with meeting others, socializing and getting specific concerns addressed.

My personal concerns are not the same as others, so we all are there for various reasons... and in turn, all come back with something different.

Ok, brain break.

[Big Grin]

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

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Tincup
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And did I mention?

Those CT folks.. you know... the ones that passed that CT doctor protection bill...

Well, don't tell anyone I said this.... but they sure do know how to have a good time!

The Massachusetts gang was wonderful... so nice to meet them all.... and I believe I saw them wandering around the streets of DC in the late evening too!

The DC group was well represented and lent a hand to ILADS while there ... although they may have later kicked off their shoes and did a little dancing too. I hope so!

CALDA had a nice booth and good info...

And Under Our Skin was represented by Mandy and her mother.

And I was very impressed with the U.S. Army Center for Health Promotion and Preventive Medicine, Entomological Sciences Program

http://chppm-www.apgea.army.mil/ento

They had an excellent booth. Maryland ticks were pictured and also displayed there and I learned from their updated TBD info.

For example, did you know Gulf Coast ticks were found in Maryland?

I didn't.

Southeast PA Lyme Disease Support Group had a booth too. They usually have one and they are always wonderful.

Their book, by Doug Fearn, "The Basics"... MY personal favorite... was there for the taking.

The other booths ... some had silver samples, probiotics and other stuff.... were ok I guess.

I am just not thrilled with retail products being offered and had problems with some of the claims being made ... but then again.... it isn't my Conference and not my place to say they shouldn't be there.

[Big Grin]

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

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Pinelady
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Thats what I'm talkin bout. [lick] That will hold me for a day. LOL
How much the pics goin for?

[ 10-27-2009, 09:30 AM: Message edited by: Pinelady ]

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Overtherainbow
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TC and all:

I was there as well and could not agree more! What an awesome place! The CSI fellows were nice too, did you get a gander at them?

Eva Sappi was one of my favs too as she had, as you pointed out, a study about Tindamax, (sp?) which I swear was the end all for me.

Very scientific format this year. I saw some of the break out speakers and enjoyed them as well. GREAT weekend, saw old friends, made new friends.

Nevergiveup!!!! (Betty, I remembered to space!) [Smile]

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mtree
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thank you for posting this info!
[hi] mtree

--------------------
worrying about tomorrow takes its strength away from today

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Marnie
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Biofilm maybe *promoted by* fibronectin (a glycoprotein)...as it is in Staph aureus too and Candida albicans.

Fibronectin contains domains for fibrin-binding collagen-binding fibulin-1-binding heparin-binding and

syndecan-binding...which maybe THE one (G protein receptors)

Tenascin-C (helper) binds to the extracellular matrix glycoprotein fibronectin and

blocks fibronectin's interactions with specific syndecans.

Curious...

Here we demonstrate that the inhibitory effect of ***tenascin-C on beta1 integrin-dependent cell adhesion*** and neurite outgrowth is

mediated by the interaction of the protein with membrane-associated disialogangliosides, which interferes with ***protein kinase C-related*** signaling pathways.

Bb has a PKC inhibitor...and narrowing it down...it might be PKCB2 because our own antibody to Bb is mAB CB2. The CB receptors are cannaboid receptors.

If Bb is invading our defense cells (goes IN them) and has a PKCB2 inhibitor...would CB2 receptors be activated on the surface of that defense cell as a "call for help".

Unfortunately most of our antibodies to Bb's OspB which are supposed to lock onto CB2 are damaged (fab portion) and Mg restores the "health" of those antibodies. Documented a zillion times.

But tenascin-C looks like it might involve CB1 receptors.

Hummm.

Joints for joint pain? Ironic.

Marijuana impacts CB1 and CB2.

While our own antibody to Bb's OspB is "merely" CB2. Lots of things happen (good and bad) when our antibody (if any healthy ones are available) lock onto that receptor...for starters...NFkB is turned OFF...inflammation gone. But alpha hemolysin is released -> RBC destruction -> hemaglobin -> Fe to destroy Bb (except Bb likes Fe for growth) and Fe is really toxic to our brains...

Bb, once it infects, USUALLY downregulates OspA 'cause it has nothing to bind to...thanks to us.

OspA binds to norepinephrine and epinephrine.

Those come FROM dopamine.

Melatonin (tired?) downregulates dopamine -> less dopamine, less norepinephrine, less epinephrine.

Nothing to bind to...so Bb figures he better switch the Osp from OspA to OspB.

It is believed OspA and OspB are the "dangerous" outer surface proteins (there are others).

The reason why the lyme vaccine didn't work is partly 'cause it was based on OspA.

Oops.

CB1 (a receptor) looks to impact MEMORY. And things that lock onto that receptor oddly look to PROMOTE memory.

(Memory B cells also can harbor latent EBV = Epstein-Barr virus).

The Role of Prefrontal Cortex CB1 Receptors in the Modulation of *Fear* Memory..

Hey...are we talking about remembering noradrenaline and adrenaline (fight or flight)?

Does this force Bb to once again upregulate OspA?

Brainstorming.

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Tincup
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Pine and Abx no mo...

You make me laugh. Good thing I am not a scientific reporter. I have too much fun tossing out the "other" stuff.

[lol]

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

Mojo... Glad you got to get there for part of it. So sorry you are sick though. Feel better soon and please do share your comments when you are back on track.

[Big Grin]

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

Amelia,

Biofilms. BIG topic. Personally I feel this is an exciting route to go.. and the most promising I've seen in a long while.

There is a lot of info being discussed about them and many theories out there. I missed the diflucan info, so glad you shared it.

MY feeling and MY personal theory at this point.... and it is not everyone's opinion... and I've not got "proof" to back it...

But after listening and reading and hearing from docs...

The CT researchers (Sapi) will be and have been actually, working on determining agents that are successful in breaking through the biofilms and cysts.

This research needs to be done ASAP... and expanded to be done officially.... and they need funding to do it.

Any results IF they were to be funded, would be a few years (my guess) before being published. And they may or may not give us exact answers.

Unfortunately, sometimes they can only eliminate treatment options... but at least we would know what wouldn't help.

Meanwhile, back on the ranch....

Various LLMD's and others are working on breaking down the biofilms... using different approaches.

The general conclusion (by some) is they were going too fast and too hard on attacking the films in their patients.

This was making people sicker (intolerable) due to the opening of the films and the release of many agents into the system at one time.

Due to this situation, some docs are suggesting "mop up" agents now in conjunction with their more favorable ... and what they believe to be the best "cyst/biofilm busters".

I've heard clay, charcoal and other agents are being used by some patients to counter the overload in the system of "garbage" held by the biofilms.

Also, the sickest of patients were doing the biofilm busters... and it is believed (by some) that they need to first reduce the load of viable keets first (kill as many as possible with the standard methods)...

Then try to address cysts and biofilms.

Otherwise, the weaker patients (weaker immune systems) are unable to handle the overload of garbage and die-off.

It is soooooooooooooo cool to see our doctors working so hard on these approaches in order to help us.

We are lucky to have them. We truly are.

[Big Grin]

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

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Vermont_Lymie
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THANK YOU Tincup for posting info!

Sure wish I could have been there, at least to see the eagle fly overhead while you were humming the national anthem [Smile]

Cheers for the CT folks for what they got accomplished. And Eva Sapi and her team.

Please post more when you can, thank you!

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Tincup
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BG.. Thanks for the organizing efforts!

[Big Grin]

OverTheRainbow-

GEEZE.... now you know what I'll be singing all day, don't ya?

HA!

Good to know you were there! And I missed the CSI gang. Glad you took in all the wondeful sites though! (wink, wink)

[lol]

PLEASE share any memories and notes/opinions you have. As you know it would be impossible for one person to report all that went on.

I missed a lot of the stuff going on... the walking around did me in big time.... so any sharing is MUCH appreciated.

[Big Grin]

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

mtree,

You are very welcome... always.

[Big Grin]

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

Marnie,

Thanks for the detailed info for folks to review. I think we were both writing about the same time.

Good thoughts!

[Big Grin]

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

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Abxnomore
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Thanks for the info TC, but I was disappointed that you didn't report more on the bell boys..... [Big Grin]

Sounds like it was another excellent conference.

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Tincup
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FYI-

I want to make REAL clear that what I am posting is MY impression of the events and information presented...

Mixed in with my experiences, the unofficial comments during private conversations and the opinions I have formed from them.

You must not take any of this as medical advise or scientific findings and not act upon any of it on your own.

10-4?

Ok.

[Big Grin]

Hey Vermont...

You are very welcome. This reporting is a daunting task to even THINK about. I've done it before (for years) and it is a lot of pressure to try and listen, take notes, get it out there and get it right.

It literally takes me about 2 weeks to recover from the conferences... and I do believe this will be my last.

[Big Grin]

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

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Tincup
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Hey Abxno mo....

Will share more on the Bell Boys later. I know you.. and you can't handle a LOT of excitement all at once.

[lol]

To note- the extended weekend wasn't all peaches and cream... not for me anyhow.

I had a lot of trouble - MY PROBLEM- as my attention span is that of a gnat...

And I do NOT like to sit and hear duck's talk and say stupid stuff we know isn't true... which occurs at all conferences.

I get riled up and feisty when hearing ducks quack.

There were good presentations though.... some were excellent. Some were so deep and scientific they were not reaching the audience, even our own docs.

The LDA conference was very well done, as always. The food was good and plentiful. The meeting room was nice and adequate. Very comfortable.

I really felt like I was at a top-notch conference on Friday.

It was much easier for me to handle that, than the ILADS conference, which was, in my opinion, the worst I've seen as far as accommodations were concerned.

Not disability friendly for Lyme patients ... but then it is designed for docs, not the disabled.

The breakout sessions could have been nicer, but they were scattered around, different floors, different rooms and the locations were NOT published (at least in understandable form) in the printed booklet.

Some of the breakout sessions, when you could finally find them, were filled up when you got there.....

And you were forced to try to find another one quickly... making it impossible to be there on time... and adding to the frustration and stress.

The walking back and forth, elevators, escalators, bathroom trips, etc was WAY too much for me and for that reason I missed a good deal of the presentations.

I thought I was the only one having problems locating where to be and when (so frustrating).... till I ran into some of the doctors doing the presenting, and they had no clue where they were suppose to be!

Some folks were so unimpressed and unhappy they actually left. I was going to leave also, throw in the towel, but had others with me, so I tried to handle it again on Sunday.

I was totally disappointed at the main meeting room for ILADS.

I called it the "Home Depot Warehouse".

The aucostics were horrible ... with many folks leaving because of the ear grinding, head-banging echo's and inability to hear the speakers or see the slides being presented.

For a multi-million dollar facility, I would think we could have been more comfortable than being in what appeared to be a cold, drafty basement warehouse.

My guess is they designed that dungeon facility to be used for car shows, boat shows, etc... and we were stuck down there as a last resort??

Anyhow, I wined the entire time cause I was in a LOT of pain and totally beyond exhausted, much to the dismay of my room mates and friends. So sorry about that!

Lesson learned....

Before you decide to go to a conference, please be sure you are well enough to handle the constant noise, the walking necessary to get around, the low level lighting at some points and the blaring florescent lights at others and the back-to-back long long days, etc.

The meetings and events went from 7:30 AM till 8-9 PM (approximately). I also attended additional meetings both on Thursday and Sunday... adding to the pain and exhaustion levels.

I did however, hear one well-respected doctor say it was the best place ever ... and this doc had been to all of the previous conferences.

[Big Grin]

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Ocean
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TC,

Awesome report!! I'm so glad that you were able to go..I want to go next year, sounds amazing!

Very very interesting information.

Thanks!

OC

--------------------
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Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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Tincup
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Hey OC...

Look for some big changes next year. Hope you can be there!

[Big Grin]

Before I forget...

There were beautiful photos of cyst forms and biofilms (again- Eva Sapi's group).

They were also able to reproduce Alan McDonald's work... GREAT news for us and the community.

A BIG step forward.

Also...

One of the photo's using a purple colored stain showed "calcium" that was located throughout the biofilm. LOTS of calcium.

I was surprised at the amount.

It is suspected the biofilms gather and use some of our needed vitamins and minerals, etc. This proves it.

They didn't have pics of magnesium in biofilms .. and said it was difficult to get that done....

But it shows how the little buggers can suck up OUR resources that are needed for our good health... and make us deficient in some areas.

Maybe someday we will be able to pin point each of our own deficiencies so we can supplement as needed, or not (?).

[Big Grin]

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riverpatrol
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quote:
Originally posted by Tincup:
Various LLMD's and others are working on breaking down the biofilms... using different approaches.

The general conclusion (by some) is they were going too fast and too hard on attacking the films in their patients.

This was making people sicker (intolerable) due to the opening of the films and the release of many agents into the system at one time.

Due to this situation, some docs are suggesting "mop up" agents now in conjunction with their more favorable ... and what they believe to be the best "cyst/biofilm busters".

I've heard clay, charcoal and other agents are being used by some patients to counter the overload in the system of "garbage" held by the biofilms.

Also, the sickest of patients were doing the biofilm busters... and it is believed (by some) that they need to first reduce the load of viable keets first (kill as many as possible with the standard methods)...

Then try to address cysts and biofilms.

Otherwise, the weaker patients (weaker immune systems) are unable to handle the overload of garbage and die-off.

It is soooooooooooooo cool to see our doctors working so hard on these approaches in order to help us.

We are lucky to have them. We truly are.

[Big Grin] [/QB]

This is fabulous information! I can't wait to hear more. This describes EXACTLY what happened to me a couple of weeks ago. I had been tapering off some tx because some things were under control. I was also taking wobenzyme and had just increased the dosage of that. Four days later WHAM!!! I got hit with the hardest herx I have ever had. It put me in a wheelchair. I would have ended up in ER if hubby weren't here. Wobenzyme is purported to break down biofilms, but it's unconfirmed...
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Tincup
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Hey river...

Sorry to hear you were slammed. OUCH on that!

As a side note... ONE wobenzyme a day is all I can handle.

The dose calls for a lot of them per day.. but I can't do it.

Interesting to see your notes on it... and hear your experience. Perhaps your explanation is why I am having troubles?

Thanks for sharing!

[Big Grin]

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JamesNYC
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Stop OBJECTIFYING THOSE BELL MEN!!

They should be seen as people NOT eye candy for your viewing pleasure!!

Shame, shame!

[tsk]

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Tincup
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Well, I just heard back from the wonderful researcher from CT that did the study on ug ug ug... worms.

[Eek!]

ICK and squirm on that topic... but what a talented scientist and lovely lady she was!

Her poster presentation was wonderful.. and she spent LOTS of time explaining the work she did to me.

I drilled her too. Made her tell all she knew so I could tell you! She was very professional throughout this presentation and a delight to meet.

Three points stick in my mind from her talk.. but I will go back and read the poster later for more points.

1. Over 60% of the ticks she tested in southeast CT had filarial worms.

2. They can cause a condition like elephantitis and can cause blindness.

Since I had an episode of HUGE legs pop up one day out of the blue... and my vision has been severely compromised... this interested me.

3. This young lady not only dealt with these "worms".. and did wonderful work and had excellent lab photos to back up her study....

She went out gathering her own ticks for her studies. Very brave if you ask me!

We are fortunate to have her doing this complex research for our benefit.

And we are fortunate to have her discovering another coinfection that may be affecting us in our Lyme struggles.

Three thumbs up for Ms. Namrata.

[Big Grin]

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Amelia
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Hi Tincup- thank you so much for taking the time to

share this invaluable info. I really appreciate

the answer you gave me on biofilms. My head is

swimming with all the information here

and indeed, we are blessed to have docs


working hard for us... Thank you ever

SO much!

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Tincup
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FUNNY James!

[lol]

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Tincup
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Amelia..

You are very welcome. I am just hoping it helps folks.

And truth is..

I am too exhausted to crawl downstairs to do anything else constructive today! And my brain is too fried to be "deep" about much of anything else.

So you are stuck with me in this mode, at least till I recover somewhat.

[Big Grin]

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seibertneurolyme
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My question is why can't the F lab and the other group researching biofilms get together and pool their info? Seems like that would speed things up.

Bea Seibert

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Gert
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Wow TC, very valuable information.....so glad you are here and able to share all this with us.

I appreciate all you do for the members of LN [Smile]

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canefan17
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Can somenody explain the biofilm to me?

Is it just another word for cyst?


I'm going on flagyl soon and would like to know what's going on and what I'm attacking.

Thanks

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Leelee
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Thank you, Tincup, for your valuable summary! I haven't been on LymeNet much recently, but could not stop reading all the posts in this topic.

Excellent reporting, TC!

BTW, I live in MD and I have never, ever heard of the Gaylord Hotel. Looks like I am missing some place special. I must take a field trip to DC one day soon. It looks lovely.

--------------------
The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr

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Hoosiers51
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Overtherainbow mentioned Tindamax, and it sounded like it was in Eva Sappi's work.

So was she saying Tindamax is good for biofilms? Or just good in general?

And is this taken everyday, or pulsed?

Thank You!!!!

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mojo
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canefan - Biofilms are actually a coating that protect the germs. One of the exhibitors at the convention told me that they are protecting actual cysts YIKES. He scared the crap out of me.

He showed us photos of acutal biofilms and one looked to be what he described "hard as a rock"

Now- here comes the devil's advocate - I asked him if he thought Lumbrokinaise broke down the biofilms he hesitated a little strangely and said "We haven't tested that one yet" Made me feel weird about everything else he said.

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mojo
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The things that I remember the most are from Dr. B and Dr. H's presentations that i saw 'back to back'

-All Chronic Lymies (over one year) should receive some IV treatment

-IV treatment is UNDERutilized

-If patient is not getting well there is something else making them sick (ie virus or co-infection) and testing is crap so clinical judgement is key

-Rotating ABX is very important - especially in Bart and Dr. H gave specific examples.

-IM Bicillin is a good option

-New drug from Europe is very exciting - just approved by FDA (I believe it was Factive - I've seen it discussed here - someone kick me if I'm wrong on this - still brain dead)

QUESTION - how many of you went up to the CSI guys and asked them if they were from the TV show? I couldn't help myself.

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Hoosiers51
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mojo,

Which Dr. H was this? The one in NY or the one in CA?

And what is an example of drugs being rotated for Bart? Would it be something like Levaquin rotated with Bactrim DS? Maybe 2 months per drug, rotated? If you could mention specific drugs or specific time frames mentioned, that would be extra-helpful.

But this is already very helpful, so thank you! And thanks to TC as well!

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WildCondor
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Report from a patient who attended about Dr. B's speech. This is by no means a full summary, or an accurate representation, just some tidbits I got. Please check with your doctors.
......................
-Bicillin may be just as effective as IV therapy.
Noted patients do better when they start with IV and then switch to oral meds, while staying on Bicillin. The recommended dose of Bicillin remains 1.2 MU Bicillin LA 4x per week. Best combined with other meds such as Zithromax.
Bicillin best method during pregnancy. IV + Bicillin needed for some patients during pregnancy.

-Chronic Lyme patients, those sick over one year should be treated with IV therapy. Try IV BEFORE orals. Combine orals with IV. Often need open ended long term treatment.

-Alinia may be effective, and is used like Flagyl has been used in the past for cyst popping. When taken, cyst busters usually require 2 weeks of steady dose pulsing. Slivers of pills does not work.

-Exercise is imperative for a full recovery, dry sauna is very helpful for toxin removal. Do not do cardio exercise until recovered enough to do so, taxes T-cells.

-Ketek seems to be the best oral antibiotic for Lyme but patients need to be followed closely

-Tigecycline IV is showing promise and seems to work best with Zithromax, Biaxin or Ketek.

-Rocephin etc, and drugs in cephalosporin class treat bartonella the best when combined with drugs like levaquin. Usally 4-6 months. For bartonella, if on levaquin make sure you supplement your magnesium by IV or IM shots to prevent tendinitis.

-Artemesia is very important for babesia, but should not be used alone. Is best combined with Mepron and Zithromax. Artemesia should be only used 2 weeks on and 2 weeks off.

-IVIG helpful for NeuroLyme and may help those with significant nerve damage.

-Dr. MacDonalds research is being duplicated [Smile]

-Research is being done on the presence of nematodes in ticks.

-Factive showing promise

-One of the things they are focusing on is the XRMV virus. It was clear that it is still too early to start treating patients for this, but that it appears to be present in large percentages of CFIDS patients, in the high 90% range. The Borna virus (affects the brain) is also being researched. Too early to tell on both front how/if this might implicate Lyme patients.

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thomasx
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TinCup,
You said "1. Doxy does not kill all of the Lyme. They tried for three weeks to kill it and it didn't work. No antibiotic alone or in combo with another was shown to kill all the spirochetes." What is the implication of this? Is it that Doxy and other abxs can't kill lyme in three weeks time or that they simply can't kill it period? Thanks.

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canefan17
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mojo,

So this hard as a rock biofilm/cyst...

Can it be felt?


I have what I thought were muscle knots all over my body (neck, lower back, hips)

Could this possibly be the cysts/biofilm or is it probably muscle knots from magnesium deficiency?

Anyone else gets knots all over body? ha

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seibertneurolyme
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Wild Condor,

Any idea who is researching Borna virus? Hubby tested positive for this 4 times I think (old Immunosciences lab), but has not been tested in the last 3 years since there is no lab that tests for this in the U.S. anymore.

Bea Seibert

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Tincup
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Thomas..

You said.. "What is the implication of this? Is it that Doxy and other abxs can't kill lyme in three weeks time or that they simply can't kill it period?"

I asked the same question.

I was told that the study only was designed to monitor the 3 weeks of Doxy, not longer.

As we know... that is the IDSA protocol. << My interpretation here.

I asked if the Bb were treated longer did they think it would kill them all?

They could not give a definite answer.. as they must stick with science they have completed... but from what I gathered... and from the other completed studies I will comment unofficially...

Since the keets can go into the cyst form within three days of entering a new environment... and the biofilms are forming shortly after infection...

And none of them can be penetrated or killed by the Doxy...

Even extending the treatment time would not be able to kill all keets.

Yeah... I then said, "I guess then we are in trouble."

Without agreeing directly with me... and trying to be encouraging as they saw the look on my face..

They told me they will be doing more studies and that the Tini and Doxy combo worked best.

[Big Grin]

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Tincup
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Hey Cane...

You said.. "So this hard as a rock biofilm/cyst..."

The biofilm is a protein or combo of them that the bacteria produces to coat themselves.

I "see it" as a slymey like coating- a gel of sorts.

I don't believe it can be hard or felt like you are describing.. in fact it is so small it can barely be seen with powerful microscopes.

However, they did say biofilms can get quite large.

They didn't say how large though. I should have asked.. "Bigger than a bread box?"

[Big Grin]

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Hoosiers51
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No word on what Eva Sappi was saying about the Tindamax?

And from Wild Condor's post, it seems that cyst-busters need to be taken at least 2 weeks on....then perhaps 1 or 2 off? Hoping I understood that correctly.

Though of course "I" don't decide my protocol, so don't worry.

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WildCondor
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As far as I know it's the artemesia and Flagyl that need to be pulsed that way. Flagyl can be used long term and daily, or pulsed, but needs 2 weeks straight to work right for Lyme. For sure the artemesia must be pulsed that way.
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Pinelady
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Tinny you are so funny-"Bigger than a bread box?"

Thanks for the updates as you recoup.

It worries me ducks were there.

Do you think they may have had any effect to a new

doc who just came to learn all about borrelia? Sway

them to the no chronic lyme thinking?

Also Wanted your

expert opinion on this article for preventing

stones in the kidneys. Do you think it may help

prevent biofilms formed from calcium, if it keeps stones from forming. Anything said about it there?

http://www3.interscience.wiley.com/journal/118669941/abstract

[ 10-28-2009, 12:22 AM: Message edited by: Pinelady ]

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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TX Lyme Mom
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I was there, too, but I haven't had time to review any of my conference notes because I'm home for only two days -- just enough time to do laundry and repack -- before attending the AAEM (environmental allergy) conference this coming weekend in Phoenix. So, stay tuned, because I'll add my "stuff" to this topic next week when I get back home again.

There were six different "Break Out" groups to choose from, and all six groups had different speakers and new topics during each hour -- for a grand total of 36 "elective topics." Can you imagine that? No wonder it's taking those of us who attended so long to wade through all of our conference notes.

The conference CD is only $20, and it is a bargain. I cannot imagine how thick and heavy the conference syllabus would have been if they had printed it instead of putting it all on CD. The speakers whom I heard all had fantastic slides, so you might want to consider ordering the CD of this conference from ILADS. (There might be an extra charge for S&H. I haven't taken time to check the ILADS website yet to see about how to order it.)

Also, the CALDA newsletter covers the IDSA hearings and is fantastic, with behind-the-scenes insights. It's well worth the price ($10) to obtain this issue from the CALDA website. It is beyond informative. It is downright inspirational. Thanks Lorraine and Phyllis and ALL CALDA volunteers for your hard work.

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Hoosiers51
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TX Lyme Mom,

Thanks for the info.

By the CALDA newsletter, do you mean Lyme Times? So it would be one of the special editions of Lyme Times? I will continue to check CALDA's site for that.

I didn't see anything on ILADS' site either yet.

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Tincup
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Hoosie said.. "No word on what Eva Sappi was saying about the Tindamax?"

One of the scientists in her group told me the doses they used in the studies were the same "typical" doses prescribed to patients.

[Big Grin]

Pine said.. "Do you think it may help prevent biofilms formed from calcium, if it keeps stones from forming. Anything said about it there?"

Somethings I know a little about...

But...

I wouldn't know a kidney stone if it bit me on the nose. Sorry!

May I suggest?

Start another post and ask others this interesting question.

My bet is some one who HAS had a kidney stone bite them on the nose will respond.

[Big Grin]

Pine said about the ducks presenting at the conference.. "Do you think they may have had any effect to a new doc who just came to learn all about borrelia?"

Actually, no.

The docs who are there.. the new ones... are already saying to themselves...

"Something about this Lyme ain't right! My patients aren't getting better listening to the IDSA poo-poo!"

In NY City years ago, we protested outside the International Lyme Conference when they (Wormser, et al) refused to allow OUR info in there."

It was a BEAUTIFUL site to see so many Lyme patients... all dressed in lime green... walking back and forth in front of the building. Anyhow...

Some docs we didn't know left the conference and came to join us on the picket line.

Now picture this... a Japanese doctor marching along with us saying in his cute foreign language accent....

"Etts hawg wass- all hawg wass."

[lol]

That was such a cool moment at the protest... I'll never forget it.

Many "regular" doctors KNOW the IDSA is all hog wash... and they come to learn the truth.

In fact, some of them walked out during the duck presentations at THIS conference complaining that the info they were presenting was "nuts" and other choice words... and how it made them so "mad."

It's funny what you overhear when standing around in a crowd of doctors.

I just smiled.

[Big Grin]

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levity101
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Link to order Lyme Times, IDSA Hearings, Part 1, (cost $10, suggested donation):

http://www.lymedisease.org/lyme_times/issues/lyme_times_issues_idsa1.html

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Tincup
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Hey hey TX Lymemom!

Soooooooooooooooooo nice to see you at the conference. Glad you could make it.

Once you get settled.. it will be wonderful if you share some good information... as I know you can and will!

Hope the second part of your trip goes well!

[Big Grin]

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Tincup
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Thanks levity..

Yes, CALDA's Lyme Times topics looked REAL good... but I have not set down to read them yet.

Another thing to add to my list.

[Big Grin]

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Tincup
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Connie...

Glad to hear Dr. C was there. So many doctors, so little time.

[Big Grin]

As for your tini questions... I will be getting more info from the scientist that did that study.

Once things settle down I will be sure to share anything new.

But the info you got from Dr. C was correct.

Doxy alone was a no go.

They found tini and doxy was the best combo for knocking down the keets in all forms.

They had a graph showing the results.. and if I can find it online later.. will share a link.

[Big Grin]

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lou
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Is Ms Namrata of the filaria study associated with a university?
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coltman
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quote:

They found tini and doxy was the best combo for knocking down the keets in all forms.

They had a graph showing the results.. and if I can find it online later.. will share a link.


Tinidazole? Is it better than flagyl anti BB wise? I had impression its just easier to tolerate version of flagyl, could be wrong though.
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Pinelady
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Anyone have any info on Morgellons or research done by Luc Montagnier yet?

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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radfaraf
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I don't see a conference CD for sale from this past conference is it up yet?
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nomoremuscles
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Great thread.

Thanks to TC and everyone.

I just wanted to offer a caution about the doxy and tini combo (I poseted this in the other thread as well).

Not to be a spoiler here but ...

I took tini and doxy for about two years straight, cycling in other meds as LLMD suggested.

It did NOT get me well.

I cannot say it did me much good at all.

In fact, it was while on this combo that my GI problems, which had reared earlier during a run of zith and flagyl, became disabling. I can't describe how bad it was. The GI tract stopped working. Gradually, I became sensitive to most all foods, and after a while could not tolerate any probiotics, supps, meds, or much of anything. I had to stop the meds immediately, and was unable to take any abx for many years.

What caused this?? Who knows. I have theories, as do all the different LLMDs, GI and Alt-docs I've seen, but none were able to fix things. And most of them made things get much worse.

This was seven or eight years ago. I am beginning to pull out of it now.

I offer this as a cautionary tale, as I'm sure many people will rush to the doxy and tini thinking that it is THE answer.

It may be for some, but it wasn't for me.

Be careful.

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lou
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I am thinking that combo was being tried in vitro on biofilms. Yes? No? In vitro results do not always match in vivo. And what works in acute may not work in chronic disease.
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Pam08
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Oh my gosh!!! That was this weekend??? I missed it! I live about 40 minutes from the Gaylord Hotel AND on top of that I was there on Sunday!!! We dropped my cousin off there on Sunday. She was in town for an accountants conference that was being held at the Gaylord. We toured around it and had dinner there and everything. I had NO idea that the Lyme conference was there :-(

--------------------
Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting.

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j_liz
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(Just wanted to subscribe to this thread. Thanks all.)

liz

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mojo
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The Dr. H I was referring to was the NY dr.

The biofilms were photos - I imagine they are microscopic and I don't think you'd be able to feel them.

Mega thanks to all of the comments about the conference - I am still brain dead - keep looking at the CD - I need a few more days.

You all did a super job and I was able to pick up on some things that I missed.

I only made it to three breakouts because we couldn't stay for Sunday and we did #1 twice - once with Dr. B and once with Dr H. There presentations complimented each other very well.

I will try to post the examples of the ABX rotations - NY folks speak very fast and I don't want to rely on my notes - I will find it on the CD to make sure it is correct!

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tick battler
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Hi all,

Thank you so much for your summaries...I hope to purchase the DVD but didn't see it on the ILADS website.

Just wondering if any of you learned anything new about babesia treatment? Anything on cryptolepsis or cryptoPlus? Any other herbs mentioned to compliment the abx therapies?

Also - mojo - I will be very interested to hear what meds Dr. H felt it was important to rotate to treat bart.

Best,

tickbattler

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Hoosiers51
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Yup, I would be interested in hearing those things too. I might buy the DVD or CD, depending on the price, but I haven't found it anywhere yet.
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Dekrator48
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Thank you, Tincup and others, who have spent alot of time attending and relating important info from the conferences.

I really appreciate your time, dedication and hard work.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Tincup
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lou said.. "Is Ms Namrata of the filaria study associated with a university?"

Yes, CT.. part of Eva Sappi's group.

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

Colt said.. "Tinidazole? Is it better than flagyl anti BB wise? I had impression its just easier to tolerate version of flagyl, could be wrong though."

In the study they found it to be more effective than Flagyl... I do believe. I am 99% sure on that... but when I reread everything.. if it ain't so..... will let you know.

What I DO remember for sure is the combo doxy and tini was the most effective.

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

Nomo... You said... "In fact, it was while on this combo that my GI problems, which had reared earlier during a run of zith and flagyl, became disabling."

Could it be that any combo (like the tini/doxy combo) or single antibiotic by that point could have done the same?

Something to consider maybe?

[Big Grin]


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

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

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Tincup
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Pine..

I met with and spent a good amount of time with the Morgellon's leader. Great lady!

I have their handouts but kick me twice.. didn't make the lecture.

Will read and share when able.

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

Rad.. sorry. I don't know anything about the CD or DVD or whatever. But if you do notice it up there on LDA or ILADS site... please let us all know.

Thanks!

[Big Grin]

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www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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Pam 08...

That's NOT funny.. but it is. Sorry you were there and didn't know the conference was.

Nice place though.. huh?

[Big Grin]

Mojo...

Looking forward to your reports!

Thanks!

[Big Grin]

tick battler... I didn't attend that workshop, sorry!

[Big Grin]

Dekrator..

Thank YOU for wanting to learn and also for giving us a chance to recover and get news back out there.

It is SO hard to do that... and I appreciate your patience.

Truth is.. I still haven't finished unpacking. Just feel like a lump on a log right now.

[Big Grin]

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

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Pam08
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LOL Tincup! I know...I can't believe I was there and didn't even know about it [Roll Eyes]

I am glad that you and some others were able to attend though!

It is a really nice place...pretty impressive.

Pam :-)

--------------------
Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting.

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bettyg
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up to read during daylight hours since i've been off board 2 days...
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Andromeda13
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just to say thanks to Tincup and Lymemom for posting all this amazing info.

Especially the descriptions of how it was organised and the atmosphere etc, help us to feel part of the big picture though thousands of miles away

BTW, tinidazole had some good effects on me whenever I gave it a try, seemed to get rid of tendonitis which was so bad I couldn't lift my arm properly for nearly a year before.

Please don't forget to tell us about the DVDs when they are ready.

best wishes,
Andromeda

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