Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I just checked the Activism section and found this report from our dear Robin123.
Thanks Robin!
Good to hear there is a lot of activity!!!!
Hope you find time to report more.
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Hi all - I'm tired and going to bed soon to get up for another wonderful conference day tomorrow, but wanted to report in briefly to say we had a great day with over 60 people signed up for the activist workshop, plus guests.
Phyllis Mervine introduced Pat Smith, who gave us a history of her involvement with Lyme activism. I gotta say, it's about time for us West coasters to be able to see East coast activists in person, so welcome, Pat!! Plus about 1/3 of the group were from everywhere else besides California.
Then Lorraine Johnson, CALDA CEO, spoke about the nuts and bolts of activism.
Then Isobel White and friend presented on pitching and framing messages for the media - this was an interactive presentation, including asking us questions about our experiences with successful media presentations.
Lunchtime including honoring Willy Burdorfer and Bob Lane for their work, as well as having very well-known LLMDs and scientists join us.
Then we heard from Diane Blanchard (Time For Lyme), Stephanie Spar (Turn the Corner) and Marisa Battilana CALDA) about how to put on events. Amazingly, Time For Lyme has raised up to a million dollars at fundraising events!
Then a delegation of activists went down to SF City Hall and visited the mayor's office and supervisor offices to educate them and give them Lyme/co info. The interaction went very well.
posted
lol - TC - back again here - can't get to sleep yet - just remembered I'd forgotten to say we had an honoring at lunchtime also for Pam Weintraub.
I wish the city would have declared this week Lyme Disease Week! 'Cause that's what it is.
Well, I guess we share it along with Art Open Studios, Bioneers, Dances On Trolleys - yes, several of our finest dance groups are presenting on public transportation, but gosh darn it, I'm going to miss it this year since I'll already have transported myself to the Cathedral Hill Hotel.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good to know Dizzzzzzzzzy...
Robin 1234564688...
Any more news for those who couldn't get to California?
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Glad to see this thread. I was wondering myself.
Will come back and read it when I am able.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Folks, there was so much said today and so many slides, my head is swimming, and I'm not even a kete -
And it is late again and we have another of those 8am days tomorrow, which I hardly consider to be a functional hour -
So I will keep it brief for now and just report on what I found to be the most moving part of the day, which occurred in the opening session:
...S *** T *** A *** R *** R *** I *** N *** G ...
---------------- the one and only ----------------
*********WILLY************BURGDORFER******** (this is meant to be a Lymenet marquee)
And this is what our guest of honor had to say:
In 1948, the professor he worked for, Prof. Geigy, in Basel, Switzerland, asked him to find which ticks collected from E. African villages were infected with a relapsing fever spirochete.
Up until that time, they used to round up ticks, stick them on animals and see if the animals got sick or not.
So they decided there must be another way to find out if ticks were infected. They looked at their hemolymph (I think that's what he said - keep in mind I am not a tickologist - just trying to hear what he said).
And they looked at other species of ticks later on, and from lots of different villages.
And looked for rickettsia, for spotted fever, later on also.
Fast forward to 1981: 1000s of deer ticks had been collected from Long Island to...nope, not what you're probably thinking - they were looking to find the organism for spotted fever. And they didn't find it.
Moral: you might not find what you think you should be looking for.
But they did find something unusual: nematode filarial worms.
They wondered where else they could find the nematode worms in the ticks. So they did a blood smear, and tissue smears, and looked for hours under the microscope, and found...spirochetes, in the midgut.
Moral of this story: again, something else can happen while you're making other plans.
(And, keep doing what you're doing now, 'cause in 30 years' time, something might happen because of it...)
Out of 175 ticks examined, 75% were infected with the spirochetes.
(So if anyone wants to pick up where they left off, they still need folks to find out where else those worms are...)
Well, after Mr WB finished his history presentation, we then were treated to a film tribute by many well-known Lyme doctors and activists, who honored him for being a funny, kind, open, friendly person who would talk to people from all over the world who'd call him up at 3 am to discuss his discovery - and he would talk to them.
One of my favorite quotes in the film: someone said she had always thought his last name was Burgdorferi.
Everyone in the film said thank you to him, and we gave him a couple standing ovations.
His last words: "I'm happy that I found that thing". Posts: 13116 | From San Francisco | Registered: May 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Thanks for the Burgdorfer update Robin! So interesting
That is one of my favorite Lennon quotes,
"Life is what happens when you are busy making other plans"
Posts: 2557 | From home | Registered: Aug 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Dr. H had one of the best, if not the best presentation which again reinforced that there are 15 things you had to look at to get a person well. It is not all about killing bugs. He also restated that he is having good results with the Cowden Protocol.
On Friday, one doctor shared results of his studies showing Tigecycline is significantly more effective than Doxy for treating Lyme.
The importance of heavy metal detox, adrenal support, biotoxin management, mold, food allergies, and many other topics were underscored in the Complementary breakout session as well as in other portions of the main sessions.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Scott,
Any more specifics about what Dr H had to say (apart from the Cowden bit)?
DLL Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Anything else yet? I'm interested in the difference between east and west infections...someone on friday did a presentation on that.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Hi - probably everyone's still recovering - I don't know about you all, but 8 am is not my idea of a civilized hour...
So much material was covered, that I think it makes sense to feed it here in small amounts.
As I have a schedule today, I will do a short post to answer CD57's request for some info on the east/west tick collection data that was presented on Friday by Dr Steven Schutzer, physician/researcher/professor at NJ Medical School.
I know I didn't get all the data, so others can add to what I've started.
His talk was on "Tick Pathogens: West Coast and East Coast Investigations".
Hypothesis: persisting symptoms after acute Lyme disease infection could be related to co-transmitted microbes that can cause disease as well as influence immune response.
They checked inside ticks and infected tissues for microbes. My notes don't say whether it's human or animal tissue.
They extracted both DNA and RNA nucleic acid from the ticks, and DNA from the tissues.
They gathered live Ixodes scapularis ticks from the East coast and live Ixodes pacificus ticks from the West coast. They also collected amblyoma americanum ticks.
First they extracted the mix of microbes. Then they used primers (in pairs, to confirm) to identify genomes, using mass spectrometry. They found base pairs, and then checked with data banks for matching.
They found at least eight microbes in ticks (was going too fast for me to catch the list).
He found Bb more prevalent in East coast ticks than West coast ticks.
For our area, ie, Marin and Napa counties: found Bb, B miyamoto (another kind of spirochete, looks like a Japanese strain...hm), spotted fever richettsia.
Sorry, that's all the notes I have. Many speakers talked pretty quickly, to get through their data. If anyone has more of his results to report, please do.
He did say that he was at the beginning of this kind of research.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
"Dr. H had one of the best, if not the best presentation which again reinforced that there are 15 things you had to look at to get a person well. It is not all about killing bugs. He also restated that he is having good results with the Cowden Protocol. "
I wonder why Dr. Z no longer works with Dr. H and uses his own herbal protocol instead of working WITH Dr. H on trying BOTH protocols for the help of all lyme patients. It does not make logical sense. Indeed I hear that some patients use pieces of each- experiments for themselves.
Posts: 268 | From new york city | Registered: May 2008
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bettyg
Unregistered
posted
robin, thanks for your notes!
8 am ... that's another reason i couldn't come; i'd just be going to sleep well!!
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His talk was on designing individualized treatment regimens based on symptomatology and testing.
There was a six-page hand-out on meds and also lots of med info in his slide lecture.
There can be a lot of false test negatives.
New info to me: blebs can bind free circulating Bb antibodies (blebs are DNA bits of bacterial plasmids? - my question).
Listed lots of studies showing persistent infection with Bb despite abx.
The borrelia hide in the skin (fibroblasts), eyes, ligamentous tissue, joints, CNS, endothelial cells, macrophages.
Plus the cyst form can persist.
Listed studies showing benefits from longer treatment regimens, and from retreatment for chronic Lyme borreliosis.
Use PCR and FISH testing in a panel approach for babesia testing. Babesia parasites can persist after short and longterm treatment in co-infected LD patients.
Check for mycoplasmas by PCR analysis. Mycoplasmal infections can evade the immune system and be synergistic with other infectious agents.
They can interact with B-lymphocytes and increase pro-inflammatory cytokines. They have been found in joint tissues. Multiple cycles of abx required for treatment (doxy, cipro, zith, biaxin).
Besides infections, a differential diagnosis includes immune dysfunction, systemic candidiasis, multiple chemical
diagnoses/drug use/addiction, autonomic dysfunction, endocrine and metabolic disorders, increased LFT (liver function test), general deconditioning.
Designing combo tx therapies: start with a tetracycline. If plateau or worsen, can switch to meds for treating co-infections.
If tetracycline drug not bringing adequate relief, switch to cell-wall deficient drug. Plaquenil can help with cystic form.
Use multiple drugs to hit all forms of Bb. IM bicillin/IV when orals fail.
For herxes, an alkaline diet and lemon-lime therapy.
Everyone needs to be taking probiotics. Also maybe nystatin/diflucan for anti-yeast.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Regarding the Friday through Sunday conference agenda, what does anyone want to hear about, and I'll see if I have notes/check for conference slides.
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