Monday, May 14, 2012

3 "Time For Lyme" Becomes "Lyme Research Alliance"

Just recently, the Lyme disease advocacy group, Time For Lyme - which is credited with creating a partnership with Columbia University Medical Center and the national Lyme Disease Association to establish and endow a Lyme and Tick-borne Disease Research Center in New York City at Columbia - changed its name to the "Lyme Research Alliance".

The name change came about as an effort to reflect the organization's growing emphasis on supporting more research into chronic Lyme disease and how to improve serological testing and treatment.

See this page to view a list of their currently funded research projects:

http://www.lymeresearchalliance.org/research_projects.html

Camp Other blog has written about a few Lyme Research Alliance funded projects such as:
Dr. Karen Newell Rogers' proposed chronic Lyme disease
treatment, VGV-L:
Viral Genetics' VGV-L Candidate For Treating Chronic Lyme Disease
Notes Posted On VGV-L 
Dr. Armin Alaedini's research on antibody response in chronic Lyme disease/PLDS patients:
Antibodies linked to long-term Lyme symptoms 
Dr. Steven Schutzer's research on biomarkers for late stage Lyme disease/PLDS:
Spinal Fluid Proteins Distinguish Lyme Disease From Chronic Fatigue Syndrome
I've checked out the Lyme Disease Alliance's new web site, and I approve of their overall mission and think it was fantastic they gave $3 million to fund the Columbia Lyme and Tick-borne Disease Research Center.

One thing I'm hoping to see with the change in name and greater commitment to research is a shift in the kind of accomplishments they had in the past, where videos, education packets, and legislation has been a focus - to a focus in assessing what kind of research projects would settle the Lyme disease controversy as well as focus on backing research on more novel treatment methods, such as they have done with VGV-L.

It is my dream that someday all the different Lyme disease organizations will unite for a single effort and come up with one large scale, fully funded Lyme disease research project that will help thousands of patients. I'd like to see focus on that project alone for a solid two or three years and see how far we can get in our understanding of Lyme disease.

3 comments:

  1. I was thinking about your survey when I got back a new Lyme blood culture from Advanced Laboratory Services that said they found positive growth of Borrellia just after I had finished over a year of IV antibiotic therapy. I guess there's a pretty good chance that chronic infection has something to do with chronic symptomatology (constant headache, CIDP, heart problems, mood problems, etc.)

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  2. Hi Curtis,

    Do you mean the poll on the upper lefthand corner of the page? I have that there because there is more than one hypothesis as to what causes Lyme disease symptoms which persist after initial treatment (according to IDSA guidelines) and allow readers to select more than one cause for these symptoms... It's possible that there is more than one cause. I also put them there so people realize there is more than two hypotheses on the table, and that some hypotheses are related to the original two.

    I have read about Advanced Laboratory Services culture test and Dr. Sapi's research. I'm curious about it, but there is little information actually available on the test and its accuracy and if it has been independently tested and been through a validation and verification procedure. It would be better if it ran through an external audit, which could be run without violating the technology used to develop the culture test (which I believe is patent-pending - if anyone knows differently, please drop me a comment to make a correction).

    Chronic infection is one hypothesis for persisting symptoms. Autoimmunity is another. Damage left behind from the infection can play a role in ongoing symptoms. There is also a possibility that a pre-cursor immune state - a dysregulation where much inflammation is present - can cause symptoms. And then metabolic/endocrine imbalances may play a role.

    I'm trying to examine all these possibilities, all the while knowing that as a patient, I have to make my own decision as to what I'm going to do to treat the condition myself based on mixed reports that the same thing/treatment does not work for everyone. In this regard, it's frustrating; treatment is trial and error. One can make fairly educated guesses about how to treat by history of a tickbite, symptoms, and blood tests - as well as response to empiric therapy - but it's still going to involve a certain amount of trial and error. Autoimmune disease treatment for a condition such as Lupus also involves a certain amount of trial and error to find something that works.

    What I do is make sure I have my bases covered. I've seen an LLMD, but I'll also see other non-LLMD specialists to make sure nothing else or nothing new is going on; to see if there is any differential diagnosis and if its treatment can occur alongside whatever I'm already doing. I've seen an acupuncturist for pain reduction, and it's helped me - along with hot baths. alternating hot-cold treatments, and an anti-inflammation gluten-free diet.

    Other than a year of IV antibiotic therapy, what have you tried? Have you been diagnosed with any coinfections? Often, a coinfection will give someone more pronounced symptoms to deal with than Lyme disease. I was in far more pain and discomfort from Babesia when I had it, and a number of people have told me once they treated Babesia, they felt the worst of their symptoms improved.

    I don't know what the cause is of your or anyone else's persisting symptoms; these factors are individually determined. I can't really offer medical advice, either, because I'm not a doctor - I can only offer information for educational purposes; make a suggestion what you can look into and ask a doctor about.

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  3. Yes, I was referring to the poll in the upper left hand corner. Other than IV antibiotics and most of the usual oral antibiotics, I've been on meds for Babesia (Mepron, Malarone) and Bartonella as well.

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