posted
Here is the schedule. Got some good speakers, mixed with the unreliable. Don't think I can stand to listen to the worm, on at 9 on Monday. And the surveillance session looks weighted against us.
sizzled
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posted
Thanks for the links, TC!
I made sure not to eat anything before listening to their chronic denial and biased opinions.
Posts: 4258 | From over there | Registered: Jul 2001
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posted
So far, the people who deny chronic disease exists are still saying it, and there is hardly any voice for the opposite view. Pretty predictable in other words, and the deniers are not being challenged. That is the missing voice. So, if the rest of this workshop does not change its tone, we are not going to be helped by this IOM effort.
But, you know, IOM reports in the past have said that GMO foods are not hazardous, without any evidence being collected on the subject at all. And they have said vaccination has no connection with the huge number of autistic children now. I think that in many cases the IOM only speaks for the establishment and will not change situations, however bad, for the better. It is the status quo being rubberstamped.
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TerryK
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posted
Thanks TC for posting the link.
I was lucky enough to hear Pam Weintraub speak and she was amazing!!!
THANK YOU PAM. I've no doubt that you and those who commented and asked questions after your presentation were able to open some eyes to the plight of the chronic lyme patient and the issues that perpectuate the difficulties. A lot was accomplished in my opinion.
Also, the talk on babesia right before Pam was interesting.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I was away from my computer today and only caught the discussion after Pam.
Do you think there will be a CD?
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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Tincup
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posted
Just checking in...
So far those I've spoken to were not having much to say about the presentations by the IDSA supporters. In fact, one was so bored with the same old same old that they decided vacuuming the floors would be more fun.
The other one is cleaning her bathroom and I am headed out to the other romm to do some dishes.
No, wait... Dr. D is getting ready to speak. Maybe the dishes can wait.
TerryK
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posted
There have been many more open minded presenters than I would hae imangined. Also some very good points being brought up.
I was very happy to hear one doctor (not a presenter) mention biotoxins as a possible cause for continuing symptoms because I beleive that is a major issue for some.
I admit that I haven't seen all the presentations and some have been annoying and short sighted but all in all, I'm very happy to be watching.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
The patients are the ones that keep bringing up our problems, not letting them put this up in the clouds, pure science sort of thing.
Pam was brilliant. I liked the way she brought up the lyme groups that bowed out because it looked like it was going to be another IDSA whitewash. The only bone I would pick with her on this occasion and in her book, is that she wants to split the difference between our docs and the IDSA. The truth does not always lie in the middle, and it looks like our docs are being described as one of the extremes. This is not the case at all.
One wonders what the anonymous report writers will do with all this information. The IDSA panel session looked like we were being heard, but in the end, we weren't. So, the jury is out on this process until we see the final report.
And as a personal aside, I was struck with the way these people can communicate, in long sentences, complicated thoughts and keep it up for quite a while. I sure can't do that anymore.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Agreed - patients at the mike pushed the agenda well. Some of the IDSAers complained about the caustic tone of patients, saying they didn't appreciate it,
so Gregg Skall from NatCapLyme stepped in, saying let's talk, and just got an acceptance from IDSAer Dr Steven Dumler to speak at a NatCapLyme meeting!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Dr. Dumler did not like being accused of conflicts of interest, financial, etc. Well, if he doesn't have any, then what are his reasons for signing on to a terribly flawed set of guidelines that have harmed so many people? If he expects to be accepted as an honest scientist, then he needs to take responsibility for his professional behavior.
Are supposed caustic tones anywhere near as damaging as guidelines that harm patients? No. And we do not need to apologize for resenting this damage to our health and wellbeing.
My personal feeling is that we need new faces that are not so compromised and intransigent to work with.
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onbam
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posted
We owe no apologies to those who are trying day and night to kill us.
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Tincup
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posted
Lou said.. "Dr. Dumler did not like being accused of conflicts of interest, financial, etc."
Yes, a bit whiney if you asked me.
And I have a really hard time feeling sorry for him when we are seeing so many horribly sick people not getting help... and worse... patients and our docs being attacked by those who are suppose to be helping them!
If he wants to get out of hot water he needs to remove himself from the others and do what he KNOWS is right. And I know he knows what is right. They all do.
As mother use to say... you will be known for the company you keep.
He could be famous, appreciated and loved for his work... or stay on that sinking ship and be joined at the hip with the likes of the devil.
posted
Well, the rewards for being on the wrong side are greater. Financial rewards and approval of the establishment. That is what counts more for most scientists apparently. Or is that just in the medical field where so much money is involved?
Dr. Klempner rose rapidly in the university ranks for his lyme work. Dr. Steere was recruited by Harvard, presumably because of his longrunning NIH grants that brought so much money in. Dr. Wormser just got a huge new NIH grant.
Those guys know which side of their bread has butter. And jam.
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lymie_in_md
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posted
Just my take from being at the meeting. Persistence was a main topic of the meeting with three of the speakers. I believe they established persistence in the mice trials very eloquently delivered by Dr. Barthold and the others. Both in persistent inflammation and persistence in BB in certain kinds of tissue.
I really thought it was a amazing to see the 3d real time view of tissue where BB exists. It gives you a great appreciation of the desire for some to prove persistence in infection. I highly support these researchers efforts.
The scariest organism in my mind is bart based on one of the researchers. And one that needs far more research especially in detection.
I spent two days there and have left with great hope for the directions the IOM are taking us.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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nenet
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posted
I signed and forwarded the petition, because I agreed that there needed to be some noticeable protest established (among other reasons),
but I also hoped and can see that there might also be some good to come out of this conference. Hopefully that good makes it to the final report, and to the future science.
I found this post when looking for more info from the conference, and I thought it gave a good look at some of the positives:
posted
Barthold hit it out of the park. His presentation alone would be enough to chagne to paradigm... in a just system.
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Pinelady
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They must take this step by step...To conduct studies without a test that is definitive is futile and I fear will only serve to hurt patients right now.
And no one addressed the immune deficits in relation to vaccines. But Autism was mentioned a few times.
That has not been brought forth yet.
So much work to do...
Given the testimonies---I wonder if they will revoke current grants for those studies that do nothing to help the patients.
Part 2 was awesome. I could have listened to doc D. all day...I believe all for us were frustrated to not be able to discuss treatment modalities. But I think it may have been for the best---seemed to not cloud the main facts---as one suggested----"The Tests Suck".
-------------------- 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 Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
If you read the title of this workshop, it includes amelioration in the scope of work. I didn't hear much on that subject. And isn't that what treatment does? The problems of getting treatment, especially for late stage disease are the number one issue. And they ducked it.
Here is the official title:
Institute of Medicine of the National Academies A Workshop on the Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-borne Diseases: the Short-Term and Long-Term Outcomes
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onbam
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posted
Watching the session with Barthold. Love how Bockenstedt tries to tell us that the mouse model indicates that we don't get sick. That woman at the end really gives the panel a good grilling.
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Tincup
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If anyone is pinning their hopes on the outcome of this workshop and its helping us in any way ... think again.
First of all... the final report will be in the hands of IDSA people.... and then an "anonymous panel" before it goes to Congress as being official.
WHO do you think will be on that panel? Probably not ILADS members.
If anyone thinks the IOM panel cares what is said by patients or "our side" or what goes into the final report, they don't.
Just watch the first days proceedings of this workshop and then pay close attention to the closing remarks and summary of the day. They left out all the good stuff in the report... as we expected.
Secondly....
Any science presented there was already published and is available without having to attend ... or will be shortly.
Most, if not all presenters that were sincere have already spoken at the LDA conferences and/or did studies, some that were partially funded by LDA.
The other speakers were IDSA "friends" or IDSA directly.. the majority of them. My bet is some came there to try to improve their chances of getting NIH funding by keeping their names in the hat ... or to strut their stuff, thinking this was an "honor", giving themselves a chance to "smooze" with the big wigs..
They fell right into the trap that the IDSA set for them.
Of course the Worm already has his $300,000.00 from this year's NIH grants in order to study the theory (his theory) that if patients are treated with the standard treatment- will they have symptoms left over that are like anyone else who is living and breathing... or are the symptoms worse?
Since they have already published that our symptoms are the same as most people have... and no worse than the "aches and pains of daily living"....
Another $300,000.00 down the drain ... tax-payers money. Did you see the look on the Worm's face as he stood there. No worries, none at all ... he got what he wanted and this IOM thing will seal the deal for more of the same.
IOM was contracted by NIH to put on this dog and pony show... ON PURPOSE. The outcome had already been determined.
Keep this in mind... The IDSA wanted the IOM to do this project- specifically them. This plan was exactly as they set forth in their letter to Congress when they wrote to them fighting against the Lyme bills last year.
Yes.. this was the IDSA's idea from the start.
Participating in this set-up did several negative things.
It pretty much shut the book on us getting another chance to present the science in another venue because now the IOM can say to Congress... "well, patients came and had their say and made their comments, so we followed the rules we were suppose to, end of story."
That may not sound like much of a big deal now but when the final report comes out ... and everyone starts whining how bad it is .. and we keep going with the status quo...
Remember what I just said... and what the largest groups we have working for us did to try to protect our rights in this situation, which is NOT to participate so we could get a good scientific conference in a fair and unbiased playing field later.
Too bad some didn't listen... you know.. the ones who keep crying they want "everyone to work together". Hooey.
But then they don't usually listen and THEY will be to blame AGAIN for destroying something we could have had going for us to try to make progress.
This workshop, along with those who participated representing the patients side, just rubber stamped the IDSA guidelines and their science.
The final IOM report/conclusions will probably be mentioned in the upcoming IDSA press releases as being a victory for them... (they have probably already written them in fact)...
If not in their new IDSA Guidelines as saying the NIH, CDC, their "independent" IDSA Review Panel and now the IOM all agree with them... as do the PATIENTS and their group .. because they attended and had input!
Additionally, try getting an unbiased committee set up now or even a bill passed now. We won't NEED a committee they will say because EVERYONE now agrees with the IDSA and the IOM workshop just confirmed it because patients participated and had a say in the process.
But all is not lost...
Some people got their moment in the spotlight... something they can treasure forever and tell their grand kids about, as more and more people continue to get sick and suffer.
One small group just destroyed my families chances of being treated properly. And yours too. And millions more to come.
I wonder if Hallmark has a card for that occasion?
posted
TC, perhaps one way this situation could be handled is to be ready with our own write-up of what was said - it's all public info.
We all witnessed how many people testified to the dire nature of the situation for everyone.
Posts: 13116 | From San Francisco | Registered: May 2006
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I was there. I sought no spotlight, didn't speak publicly- just listened and learned...a LOT! Why in the world would I choose to participate in something that I believed would destroy my daughter and my family for personal "fame"?
I went because after nearly 8 years of antibiotic therapy, homeopathic and herbal therapy, and countless hours and dollars worth of support therapies, my daughter still is not well! I think it is clear that the ILADS doctors don't have all the answers, and they would be the first to agree! No one does. And that is what I heard at this workshop. But many of those presenters do have pieces of the puzzle.
I feel that my own understanding was significantly broadened by what I heard. I also saw the passion these professionals have for their work. I think my daughter will benefit, rather than be damaged, by my participation.
As for the report, it is to be a summary - no recommendations. It will be hard to manipulate that. BUT, it is a great idea to watch the webcasts and write your own summary. If, indeed, the report is not an accurate portrayal, we can compile our own summaries and counter it. That would be another exposure of the corruption of the system. Rather than assume corruption, prove it.
As you watch the webcasts, I ask that you do it with an open mind. Don't prejudge. Watch Dr. Aronowitz and Pam's followup question. Watch Dr. Jacobs and see if he has something to offer you, even though he is focused on rickettsia and erlichia. "Doxycycline is your friend" is a quote you can take to your doctor to fight for prophylactic treatment. A round of doxy is not nearly as risky as letting a case of tick-borne disease advance was one of his messages. But his most profound statement was "[In terms of children] long-term effects are going to last 50 to 70 years, not 10 to 20." That fact has to hit the mark in the coldest of scientific hearts! Good stuff! Another observation - I watched the panel's reaction to Pam, and what I saw was respect and admiration. She was the rock star of the workshop!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
Hope springs eternal is the message I got from the attendance and participation of some of the lyme population. I personally have no hope or trust that the establishment will help us. Maybe I will be wrong. I very much want to be wrong.
Sorry, I do not agree that it will be hard to manipulate the summary. I saw some of the summarizers doing that during the workshop.
And if you analyze what some of the presenters said, for instance the UK woman, the summary of that will not advance our cause. What she said was people who don't have lyme anymore (the post lyme people) should not be abandoned. That means palliative care.....aspirin, sleep aids, no meds for infection. Because she will never admit to a chronic infection. No one who has built their whole career on this view is going to alter their public stance based on any number of sad stories and appeals. Sorry, I don't think vast numbers of sick children will reach cold hearts. If it did, we would have the solution to the autistic children.
And if someone can stand to do it, I do think it would be good to do our own summary, to counter what may be in the IOM report.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I want to share another tidbit from the workshop: I believe it was Dr. Ribeiro, who talked about the need for multiple approaches in solving a problem. If each approach yields partial success, then through multiple approaches, you increase and perhaps even achieve total success.
I would like to apply that to advocacy/activism. I believe that, in the case of the IOM workshop, the two approaches employed by advocacy groups - those who withdrew and and those who participated - achieved more in aggregate than either would have achieved alone. The addition of Dr. Luft is an example. The attention that withdrawing groups brought to the lack of balance in the agenda, followed by intense negotiation led by a participating group to add him to the agenda, did TOGETHER lead to a better conference.
One of the presenters, in response to Pam's statement about the shouting back and forth between the extreme ends impeding the process, noted that there seems to be controversy, not just between the medical and patient communities but WITHIN the medical , the research, AND the advocacy communities! I am loosely interpreting all of this. But the message we should take away from this is: we need to stop promoting distrust of advocates in other groups who don't think or act the same as another. We don't need to, and probably shouldn't, all file down the same path in every situation. We need to respect and trust our peers/ groups when they choose to take a different approach to a problem, even if we don't agree.
Surely, there are others on this forum who agree that the damage being done within the lyme community is from such unfair accusations as those being launched in this thread.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
I have started watching the videos (quite long), and so far so good. I fast-forwarded through the first speaker or two since it was pretty basic stuff.
I think the videos are worth watching and people here need to keep an open-mind before bashing them. There is good information and ideas being presented.
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Pinelady
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posted
Divided as we are, we will be destroyed.--------
onbam why would this happen? Are we not strong enough? Are we not loud enough? Are we not sick enough? Are we too sick?
What is the power over the people that we surrender our lives to this abomination?
To accept only care that is available under a cloak, because we have to hide our doctors names and accept what treatments we can afford when there is so many others that could be utilized to our benefit?
Looking ahead----What is going to be the turning point if the NIH/IOM does not help us?
-------------------- 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 Posts: 5850 | From Kentucky | Registered: Dec 2008
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onbam
Unregistered
posted
Oh, it just seems to me that we have a hard enough time making a dent when we all work together, and that there's really nothing that would be worse for patients than infighting.
I don't know anything about politics, though. I'm just one more patient trying to survive and do my part.
If the NIH doesn't help us...it'll be par for the course. Seems to me the government health agencies have a known agenda, and that is lying about chronic Lyme disease.
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quote:Originally posted by onbam: The Lyme community seems fraught with conflict, much of it deliberately induced by our common enemy. Divided as we are, we will be destroyed.
That's a fatalistic attitude.
Good luck.
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posted
Don't lose heart. The body of research has been slowly revealing the mechanisms of this organism since it was sequenced in the late 90's. It sounds forever, but the more they learn, the more accelerated the learning becomes.
I am most hopeful when I hear the researchers talk about developing therapeutic treatments that will target the gene expressions. They are a non-antibiotic approach, far more targeted and probably are the missing pieces of the puzzle.
Also, I can't speak for the ILADS doctors, but in conversations they seemed to feel hopeful about the presentations and the interchanges.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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glm1111
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posted
I just don't get why the possible co-infection of Filarial Worms is NOT being addressed. Willy Burgdorfer found Adult Filarial Worms in the ticks he dissected. Another well respected researcher, Eva Sapi from Connecticut also found Filarial Worms in 40% of the ticks she dissected.
Isn't it possible that some chronic Lyme patients are not getting well because this is being ignored? Can anyone explain this?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Pinelady
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Nary a wisper of Morgellons either Gael.
I believe the ones in control like it so much they will not let go without a fight.
-------------------- 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 Posts: 5850 | From Kentucky | Registered: Dec 2008
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glm1111
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Ahh Pinelady,
Similar to when someone is dx with another malady that could be Lyme, but refuses to let go of the original diagnosis?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Lymie-in-MD - Which presenter talks about Bartonella?
What are everyone's thoughts on the day 2 researchers saying that they haven't seen evidence of intracellular Lyme? They also said it doesn't produce toxins..? Dr. D came to the mich and suggested both of these things, but I thought there was other research out there that demonstrated these concepts??
Posts: 57 | From VA | Registered: Feb 2010
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onbam
Unregistered
posted
The ones who say Lyme isn't intracellular are lying. There's as much documentation of that as of anything relate to this illness. Check out lymecryme.com and lymeinfo.net
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posted
onbam is correct. Although I think people are more open to information, books, journals, and websites that aren't so conspiratorial (even if those websites are correct).
Lida H. Mattman quotes:
quote:The spirochetes stained with B. burgdorferi antibody do not have identical growth patterns. There are two ways in which the organism can be associated with erythrocytes. In one type, the growing atypical phase causes a wring to form in the red cell. Unfortunately, it is difficult to distinguish from the rings made by Babesia. The ring gradually fills with spirochetal growth. In the second manner, the red cell produces amorphous material which is either extruded as a halo or "spit out" as a ball. In such structureless material, tiny spirochetes gradually develop. These growth patterns are probably related to serovars.
Lida H. Mattman is the real expert, and she studies a lot more than just Lyme Disease.
Note: her book is expensive, but you can read some of it on Google Books.
I don't think it's fair to accuse researchers as "lying". Perhaps they haven't seen it properly under a microscope, or didn't know what they were seeing. Perhaps they are misinformed.
I have seen this phenomenon in my own erythrocytes under darkfield microscopy. I can no longer find them with treatment. There is not much written about it. Some alternative practitioners have discussed this, but for the most part, at this point, this information is "medically unknown". Remember that L-forms weren't accepted until recently.
What I can tell you is that colloidal silver kills all forms of Lyme within and around erythrocytes very, very well, and pretty quickly in vivo without help of other antibiotics or antimicrobials. However, I don't think CS is the answer for neurological and neuropyschiatric disease unfortunately.
Now one may wonder why these fail to test positive under current PCR techniques. From what I've read, I don't think these forms can be detected with PCR. Also, genetic diversity along with narrow range PCR (Labs relying on GenBank?) may cause the PCR to fail even if it otherwise wouldn't have.
Now I haven't watched the part where a Dr. says the bacteria don't produce toxins. That's a load of crap.
[ 10-18-2010, 02:31 AM: Message edited by: kday ]
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quote:Originally posted by onbam: k--do you have the book? if so, does she speak about transmission in it? i know she was trying to sound the alarm about this at the conferences she spoke at (she thought casual transmission through tears was possible.)
I don't think the book focuses on that, but it does mention it can go in the sinuses and subarachnoid space when it is thin. This causes MS. Other spirochetes cause MS as well.
What she says usually turns out to be true in the end. She's been researching a long, long time. If she thinks transmission through tears is possible, I'm sure she cultured it from tears. There are obviously many methods of transmission and holding the belief that you can only get it from a tick is both ignorant and illogical.
I've seen some researchers and published journals finally copying her culture methods now, so hopefully we see more info in mainstream medical journals.
Science does like to progress slow for whatever reason.
Do you know what video Lida speaks in? I didn't realize she was at the IOM. I sort of jumped all over the place when watching.
I'm glad she is speaking out.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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Fibroblasts are cells which become connective tissue, which Bb loves.
And a CDC researcher published a couple of years ago that Bb could invade neurons.
So, as usual the know nothings are ignoring evidence they don't want to acknowledge.
Lyme is also intracellular.
Thanks. I didn't realize she died.
Some researchers ignore certain medical journals based on the "impact factor". Unfortunately, I think impact factor ratings are misused and manipulated.
Some researchers seem to think if it's not published in Nature, Science, or the NEJM, the journal is not reliable, and therefore ignored.
Things are really screwed up. I still don't understand why the NEJM accept some terribly biased journals by Wormser.
Even though it is a review article, "A Critical Appraisal of ``Chronic Lyme Disease''" is a good example of how "prestigious" journals such as NEJM publishing Wormser's biased crap. If it was from another less known researcher, I would guarantee that ignorant and biased junk wouldn't have been accepted.
At least they weren't afraid to publish all their conflicts of interest:
quote:Dr. Feder reports receiving lecture fees from Merck and serving as an expert witness in medical-malpractice cases related to Lyme disease. Dr. Johnson reports holding patents on diagnostic antigens for Lyme disease. Dr. O'Connell reports serving as an expert witness related to Lyme disease issues in civil and criminal cases in England. Dr. Shapiro reports serving as an expert witness in medical-malpractice cases related to Lyme disease, reviewing claims of disability related to Lyme disease for Metropolitan Life Insurance Company, and receiving speaker's fees from Merck and Sanofi-Aventis. Dr. Steere reports receiving a research grant from Viramed and fees from Novartis. Dr. Wormser reports receiving research grants related to Lyme disease from Immunetics, Bio-Rad, and Biopeptides and education grants from Merck and AstraZeneca to New York Medical College for visiting lecturers for infectious-disease grand rounds, being part owner of Diaspex (a company that is now inactive with no products or services), owning equity in Abbott, serving as an expert witness in a medical-malpractice case, and being retained in other medical-malpractice cases involving Lyme disease. He may become a consultant to Biopeptides. No other potential conflict of interest relevant to this article was reported.
lymie_in_md
Frequent Contributor (1K+ posts)
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posted
The researcher who pointed out bartonella as a concern is :
9:20 am Comparative Medical Importance of a One Health Approach to Emerging Tick-borne For JT's mom:
Diseases Edward Breitschwerdt, D.V.M. Professor of Internal Medicine College of Veterinary Medicine North Carolina State University Adjunct Professor of Medicine Duke University Medical Center
--
Just a statement for hope: we forge ahead with the idea of hope, if there is no hope, why get up in the morning even though you might feel lousy.
Why I thought the meeting was constructive had nothing to do with IDSA. It had to do more with the researchers and there presentations, specifically to the science. One researcher in particular brought out the point that if we could create an allergic response to ticks they would never attach long enough to do damage. I thought that was an outstanding idea. We know we can take away allergies, but it is probably much easier to make them. For me personally, such a mechanism would protect my children and potentially protect me from further invection without a vaccine (which might not work anyways).
Its great to see someone germinating some out of the box thinking or new ideas. One of the other researchers listed above showed just how difficult bartonella is to deal with. Someone I met at the conference mentioned bruccella is just as dangerous, because he sees it all the time.
So what I got out of the conference was information, and the information had hope all over it.
My question and it will still be my question, why do we need the IDSA? Why not continue to fight for research out of the universities. And boycott the idsa for all tick borne infections. Avoid any tickborne research with them as much as we can, i'm sure they are still doing trials.
We could support Dr. Stephen Barthold mission to show persistence. If you can't go up the middle with the IDSA or straight at them, go around end.
I do agree the current establishment isn't to be trusted. It needs to be rebuilt.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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sometimesdilly
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posted
Robin-
So Natl Cap Lyme reached out to Dumler because patients were being mean to him, and is going to host him at a meeting.
And this is supposed to a good thing because...i give up....why? My best guesses--
1. Because Cappers think he will see the light and be supportive if only they could tell him in person how much they are suffering?
2. Because Cappers want to demonstrate that patients can sit in a room with the likes of Dumbler and not toss their cookies or be rude? And even if Cappers can pull that off, this would prove what?
3. The Cappers want to sponsor a rigid scientific exchange with Dumler in their own backyard, and therefore are inviting qualifed Lyme professionals to take part?
If the answer is 3, I will be there, and will try to behave. Somehow, I doubt very much that is what will be on the agenda.
I know there is no point in saying this once again, but I will anyway.
The Dumlers of the world don't want to hear about our pain. At best, for them it is an irritating experience, since it would be so much more convenient for them if we just shut up.
Policy-makers, even those most sympathetic to us, don't want or need to hear endless tales of our pain.
I have seen the reality of that close-up and personal when I have lobbied reps, one on one and as part of a group, have witnessed the squirms and the darting . eyes of supportive aides who only began to focus when the talky-talk moved on to specifics about what was being requested of the legislator, and objective evidence of the financial and societal cost of these diseases.
IMO, there are many appropriate places for patients to whip out our tales of woe, but the corriders of power ain't one of them, unless all that is hoped for is a pat on the head and empty, banal assurances that "they" feel our pain.
dilly, in the peanut gallery.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Right on, dilly. People have been trying to appeal to the hearts of the IDSA crowd for years and have failed. They have no hearts. The bumsteere got one of those pathetic patient letters, some poor soul who had been terribly mishandled by the medical establishment. He said in print that the person was a wacko, or words to that effect.
They do not care about us. Patient suffering, even death will not reach them or affect their behavior.
And it is always better when talking to legislators, to be concrete about what we want from them and why. If our contacts consist solely of sad stories, well the world is full of those.
Posts: 8430 | From Not available | Registered: Oct 2000
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sometimesdilly
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posted
hello to Lou, choir to the my preaching...
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Hey Dilly - just read what you wrote here. It's my understanding it was Dr C at the mike who said can we work together, and Dr Dumler responded he was open but didn't like being atttacked.
Then Greg Skall on the panel said we're not vilifying you, and would you be willing to be in dialogue with us, and Dr Dumler accepted.
It's always been my opinion that nothing should happen until it's been vetted - ie checked out as to who and what someone represents and is beholden to.
Anyone can contact Dr C about it, and NatCapLyme too and have a discussion about what's going on.
Posts: 13116 | From San Francisco | Registered: May 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
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posted
hi Robin-
thanks for the hello's. to you as well.
With sincere all respect to you, I won't be contacting anyone to have a discussion about the Cappers' latest caper.
I have learned, first-hand, all the information I need to know about how the Cappers' approach those in power, and know way too much from my years in Lyme-land about Dr. Dumler and his compatriots.
Others can feel free to keep knocking their head on the same stone walls and calling it progress, but count me out.. life is too short and my resources of every kind too few to feel patient about that folly.
--dill
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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posted
Bob- we don't "need" the IDSA, for goodness sakes.
Life would be good if we could just ignore them or go around them. as you suggest.
Surely you know it isn't that simple? That in terms of power over the terms of debate, much less the course of our treatments, Lyme patients are a speck of dust on a baby flea who perhaps every other month gets to take a tiny bite of the donkey's arse?
I'm genuinely all ears to hear yours or anyone else's plans for making the IDSA irrelevant. Until such a plan is in place, though, I'd suggest not taking our eyes off the targets that matter.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
In the short-term, there may not be much we can do to counter the IDSA, except to push for better communication and education of our front-line doctors who have been misdirected. But, what my unscientific mind heard at the IOM was potential therapy resulting from genetic research - blocking, regulating host responses, etc. Obviously, we aren't going to see this very soon because they are still in animal studies; but it will address the immune response issues. And I think we can all agree that ongoing illness isn't just a matter of persistent infection. It is also about host response.
I am intrigued by the human genomic, personalized medicine direction. Dr. Luft mentioned it, I think, and a doctor spoke at ILADS about it. This may be the ticket out of the whole abx controversy and make the fight with IDSA moot. This will lead to better targeted treatment.
As far as the interchanges with Dr. Dumler, I think that one of the priorities of ILADS for the coming year is to reach out to adversaries and find common ground on which to start dialogue. I talked to Dr. Dumler after the meeting and have done a little bit of research since then. I don't see anything particularly worrisome other than the fact that he was on the guideline panel. His research is in erlichia. I don't see how dialogue with him can hurt. I think it took courage to say what he did. He took the cover off the elephant in the room and confirmed the need for further workshop/conferences to pick up where this one left off.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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D Bergy
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posted
Can someone boil down what in particular about Bartonella was of concern to these people?
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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lymie_in_md
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And Dilly we are 100% agreement on the IDSA, a useless organization. I'm more interested in what we learn from the science. Hopefully the IOM will start targeting on what we do about these tick borne infections.
As far as around end, we combine our forces to support some of these researchers. I've always felt funding activism only gets you so far. Why not fund a few researchers as a community or work on the granting commisions within NIH to get funding to go in our direction. Maybe the IOM is a start, it certainly generated a lot of dialogue between researchers and clinicians.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
Well, my question is why an ehrlichia researcher is considered enough of an expert to be a guideline author for lyme disease? These people need to stick with their area of expertise, because that is what they know. And some who claim to be experts in lyme definitely are not.
Does anyone really think we could ever find common ground with Wormser? He has what he wants. And NIH has been at the root of the problem in my opinion. The idea that we could somehow influence how they give grants is rather naive. They have even resisted political influence, claiming to be sacrosanct because they are scientists, and doctors. Just another group that wants taxpayer money without any guidance or oversight. Our only hope in my opinion is for more honest people to somehow get into top positions in the medical bureaucracies. And for people who have the resources to privately support research for us.
Posts: 8430 | From Not available | Registered: Oct 2000
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sometimesdilly
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posted
Bob-
We've already worked, on multiple fronts, on having real TBD research performed.
For example, Columbia's TBD research center in NYC would never have come into being without the tireless work and energy and commitment and savvy of a few handfuls of Lyme patients-advocates.
I was there at its opening ceremony, and I heard the personal thank-you's its directors offered to some of those advocates.
Go be glad about what research potential you see. We all need to find hope wherever we may, and I don't begrudge you your sources.
Just don't be surprised if not all of us are willing to jump on the same bandwagon, especially when from our perspective it is being driven off the road by folks who never intended to deliver any of us anywhere but to the poor house or the funny farm.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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lymie_in_md
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posted
Dilly --> I sure don't blame you for not jumping on any bandwagon. I couldn't even tell you what bandwagon even looks like. So I have nothing to propose. If there is potential in something, I'll sure share it and let it be reviewed.
I do agree fighting the IDSA is useless. And we desperately need better information from researchers. And they desperately need better support.
I'll go by a simple maxim. No problem is ever solved if there isn't an honest attempt at finding a solution. That maxim was never associated with the IDSA, just look at the studies and research done. My point is there will never be solution without honest research.
My question, how do we get honest research into the problem?
Organization not to trust: The AMA who probably are the real issue behind the IDSA. As well as insurance companies who want to avoid getting into expensive claims as the did with AIDS. And big pharma who essentially funds the AMA. They all set what policy and what research is to be performed. It is all being set by a financial agenda and not a public one. We can't change that!
So what can we do next beyond Columbia? How can we take the next step? Of all the people who might have the best clue, might be Pam Weintraub who might have a clue at what else can be done. Especially after the IOM, why don't we ask.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
CALDA is currently helping to fund five research projects, and there will be more. There are several individual doctors and research teams working on projects. I agree - this is what needs to happen, in order to target these illnesses appropriately.
Also, I like to follow the research on prevention. The last I heard, they were experimenting with high-pressure spraying of Alaskan cedar nootkatone and carvacrol, both plant compounds, and the report was 42 days of no ticks seen on the ground.
We have a global ground cover problem. Research to help make the terrain safer is important to do too.
Posts: 13116 | From San Francisco | Registered: May 2006
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lymie_in_md
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posted
Onbam -- I think the best way to inform others of our infectious nature is to create necklasses of garlic so people can see and smell us coming. Lime green garlic would be best.
The best way to test it is using human infected tears on mice. My guess, someone would have to sponsor the research, unless someone could twist wormsers arm to it. I wouldn't twist to hard, he looks pretty fragile. I saw him at the OEM and he sure doesn't look healthy, just my opinion, he walks like he has gout. Very pasty white skin like it has seen sunlight in years.
You know the old saying what goes around...
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
Bob, I used to inform people of my infectious nature with tiger balm on my neck - only that didn't go over too well, so I stopped informing them...
onbam, unfortunately the Lyme bacteria has been shown to be in all fluids and tissues. sigh.
Posts: 13116 | From San Francisco | Registered: May 2006
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lymie_in_md
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posted
I guess your right Robin, some just like to stick there heads in the ground and ignore you anyways.
We saw that during the oem, after abx treatments you could still see the organisms in 3d no less still active in tissue.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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