I saw my LLMD today and we discussed many things but for now i wanted to pass along that she told me that Columbia University had indentfied the Lyme strain/surface protein that causes Chronic Lyme. She was emphatic about this news.
She expects testing for this strain to be available in weeks!!!! I checked the website and this news is not published yet. My doctor would have an inside track as she supported this research and had candidates blood drawn at her office.
Stands to reason if you can isolate the strain than a more narrow scope of research for a cure can be conducted. More to follow ...but she fully excepcts the test to be available by my next visit in October.
Keep the Faith,
Dave
[ 08-29-2009, 06:35 PM: Message edited by: DaveNJ ]
Posted by luvs2ride (Member # 8090) on :
Dave,
That is great news. Now, I hope it translate to a cure for us real soon!
Luvs
Posted by Dawn in VA (Member # 9693) on :
Dave, thanks for posting! Please keep us updated.
Best to you, dawn
Posted by Hoosiers51 (Member # 15759) on :
WOW! That is fabulous news, even if there is not yet a cure...this is HUGE.
Posted by Hoosiers51 (Member # 15759) on :
Too bad this information did not come out before the IDSA hearings on July 30. My guess is that this news could have drastically changed how the guidelines are written.
Posted by DaveNJ (Member # 17362) on :
just another step towards the truth...i'm sure the IDSA will say no such strain exists...none the less.....
Posted by Hoosiers51 (Member # 15759) on :
Ugh, you are probably right. How horrifying! I just hope it gets to the point where the truth cannot be ignored any longer. Thank goodness for Columbia, for not believing all the rhetoric.
Posted by DaveNJ (Member # 17362) on :
Brian Fallon from Columbia was at the hearings...no worries...he is the lead researcher.
Posted by seekhelp (Member # 15067) on :
I can't wait to hear more Dave. Thanks for the news.
Posted by madge (Member # 13704) on :
Dave, good job...lets hope things can move along and people can get the proper help....Madge
Posted by kitty9309 (Member # 19945) on :
Dave-
Is there any word as to which lab will be offering this test?
Do you know if this new test can help those of us who are seronegative? ( I have only band 41, despite the bulls eye, symptoms and no early treatment)
Thanks!
Posted by DaveNJ (Member # 17362) on :
Kitty,
no more detail than that...but i will bring this question back when i see her next. i would have to say that it makes sense that the answer may be yes. Many of us tested negative becasue labcorp and quest do not test every strain. Of course there are other reasons people test negative.
Nowing my doctors relationship with MDL i would say thats a good bet....more to follow though.
Dave
Posted by kitty9309 (Member # 19945) on :
Thanks Dave-
My doc also sends some tests to MDL. He did my PCR's there for 4 strains after getting the negative Igenex WB.
~Kitty
Posted by feelfit (Member # 12770) on :
AWESOME!
Hope for better diagnosis and treatment is always good for a big ole smile! Thanks for sharing Dave.
Posted by liesandmorelies (Member # 15323) on :
Dave,
Do you know if there are any published documents from Columbia for the public to see showing this Lyme strain/surface protein that causes Chronic Lyme????
Anything that we can point to, to make our case if you know what I mean???? Can't wait to be able to use this as proof to show that Chronic Lyme exists.
Thanks
PS if this is true, I don't see how the IDSA will be able to keep saying it does not exist. Especially if Columbia releases the strain"Proof" to other research facilities or scientists and they confirm it. Can't wait for the confirmation. Science is science after all and they will not be able to keep side stepping around that fact. =)
Posted by coltman (Member # 21272) on :
It is interesting .If we can get reliable test that would be first step for reliable cure.
I am curious though how they identified that its that particular strain is the only one which causes chronic lyme
Posted by keltyl (Member # 14050) on :
Thank you, thank you for this info!! And who says the Idsa ruling has to be set in stone. The proof is in the pudding.
Posted by DaveNJ (Member # 17362) on :
Folks,
from what i was told information will be released in a matter of weeks. i had a similar thought which is that if they identify a strain then the IDSA is shot to hell..
i now realize there are many questions but i couldn't keep this info to myself...even if its limited. all i can say is the source is reliable and in the inner circle at Columbia. The fact that Fallon used her office to draw blood tells you how well connected she was.
i really think the reason she told me was she was so excited she could not keep it to herself. if you knew this doctor you would know how out of character that is for her.
Dave
Posted by trishden (Member # 722) on :
Hi Dave, That sounds like great news although my LLMD who also works very closely with Columbia,(she just sent my son there a week ago for a Spect brain scan), says there are over 300 srains of Lyme. It's hard to think that only one strain causes chronic disease. Back in 1994 when I first got Lyme she thinks it was a European strain, eventhough I think I got it in South Jersey. Because I didn't have a bullseye but a bruise like lump on my ankle bone, she called that a lymphocytoma which is a collection of lymphacytes around the bacteria. Now we think it's back although I didn't test positive and I also have CFS (ebv, parvo, cmv, hhv6) and Fibromyalgia. Please keep us posted and I will be asking my LLMD about the news too. Thanks!
Posted by Robin123 (Member # 9197) on :
How does this news relate to what we usually hear about, which is that there are approximately 100 strains in the US and 300 worldwide?
Posted by DaveNJ (Member # 17362) on :
Robin, Trish,
No anser to that other than my undertaing is there are 100 strains but only very few that cause chronic Lyme. That is what they are targeting.
More to follow.
Dave
Posted by Vermont_Lymie (Member # 9780) on :
Thanks Dave for posting. Look forward to hearing more, hopefully they will publish this too.
Posted by liesandmorelies (Member # 15323) on :
Dave,
Are you sure this wasn't related to the Rheumatism/ Arthritis Study they were working on or some other study????
Posted by JamesNYC (Member # 15793) on :
Everyone,
Unfortunately I don't think it's the news we wish it was.
The IDSA's position is that no one can show that lyme continues to be an active infection since it can't be cultured from someone after treatment.
Therefore, they will continue to argue that those with symptoms and anti-bodies, after the length of time tx of THEIR guidelines, have POST LYME SYNDROME (an A-I problem). Or are mentally ill.
This discovery does nothing to address this foundation of their position. They can merely acknowledge a sub-species.
The day someone can actually culture an active spirocete in a host AFTER treatment, the IDSA will crap on itself.
That would be proof that infection persists after treatment, and then we can all get to starting our class-action lawsuits!
But, it's great that Columbia continues research!
James
Posted by lou (Member # 81) on :
Well, there are quite a few microbes that cannot be cultured, so that position is a rather stupid one. But it is not news to anyone here that the IDSA takes stupid positions.
I would be wondering if a test will work for such a strain in people whose immune system is no longer producing antibodies to lyme, for various reasons. Will this be an antibody test? How will the fish in the sea situation with PCR make it possible to reliably detect this strain of lyme? And what about lyme being tissue trophic, thereby reducing the chances of finding it in blood tests?
Lots of questions here. Guess we will have to wait to get answers.
Posted by Hoosiers51 (Member # 15759) on :
True to what James said, in a way....(though I agree with what lou said too that not everything can be cultured)
...but even if the IDSA doesn't recognize this, maybe it will lead to other advances down the road that ILADS physicians can utilize? That would be my hope.
Wasn't there also something about band 31 being the "chronic" band? I wonder if this is along the same lines as what that "chronic band" tells us.
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